I continue to be amazed by all that you are going through. Kudos for your persistence in seeking solutions to your problems. I really hope that one of these days you wake up and realize that you are gradually improving and the pain isn't as bad as it was the day before.
I had subacromial decompression about 6 weeks ago. They shaved down the bone, removed some bursa and cleaned it out a bit. Thankfully I had the surgery early enough that I didn't have any tears. I was also lucky that my bicep tendonitis had healed and I didn't need any work done on it right now. I had tendonitis and bursitis caused by a shoulder impingement that I have had pain from for about 15 months. I have lax ligaments in my shoulders and arms. (I am hyperflexible in my arms, something I never knew until the pain set in.) When I move my shoulders, my rotator cuff comes out of "socket"--kind of a mini dislocation. This results in a constant pinching of my tendons between my humerous and shoulder blade. Thus, constant inflammation. There really isn't anything other than PT that can be done for the loose ligaments. The hope is that by making more room I will have less rubbing and inflammation. The root cause will always be there though.
At this point, my pain level is low when I am not active with the shoulder. I do still get some intense cramping at times though. I do get some intense soreness and occassional shooting pain when I move my shoulder wrong, use it too much or have it in a wrong position for too long. (I had a couple 5 1/2 hour flights this week. It was sore for days after each flight. Hard to get comfortable. I even had the flight attendants fill a bag with ice for me so I could ice during the flight.) I have regained some good front and side range of movement, though not 100% there yet. Still just barely getting behind my back. It has been a disappointing week. It seems I have made little, if any progress in healing at all this week. It has hurt more this week than last. I know it will still take a lot of time, but of course I want to make constant progress. They are cutting back on the frequency of my PT sessions now. I think I have only a couple PT sessions left. It really helped going twice a week. I think the manipulation, ice and stim helped as much as the exercises.
By the way, I do exercises with no weight, some with #1-3, and only a couple with the band (green). I was using the bands frequently before the surgery. I also use the pulleys. Have you every used the T-bar during PT? Those exercises are great for working on developing the range of movement and they are fairly passive. It is a piece of equipment made with PVC pipe. It has a piece about 1 foot on the end and a piece that comes out from the middle that is about 3 feet long. They form a T shape. I place my hand on the short piece and use the long piece at different angles to gently "push" my injured arm out at certain angles. I started that on day 1 of PT. Now I am using the bar to do lightweight (basically no weight) presses and I use it to try to reach overhead--have some work still on this one.
I have a lot of tightness from my neck down to the shoulder and back of the shoulder blade now. I know it is because of the shoulder being out of wack. Last time I went to the chiro about this before surgery, it didn't really help. I had the manipulation and some of that freeze spray used then. I have thought about trying some massage, but I am afraid to let anyone near the shoulder yet. Any suggestions?
hi MR, sounds like you have been thru the mill too,sorry you have to be here with us. just had one great suggestion for you,myofascial release? have you ever tried this at all? this is what i am getting right now,tho it is much lighter than pre op was. my PT guy does the myofascial and also another therpy called craniosacral? between the two therepys that he kind of does at the same time, i was actually feeling for the first time in many years,a huge relief of that overtightened area i have up there from my spinal cord surgery cutting into all those thick muslces and a deteriorating c spine too.
just a really really helpful therepy for people with myofascial issues casued by ongoing inflammation up there. it really has done wonders for me MR.
the one thing i found out is that progress doesn;t come without pain. i was actually off the extra narcotics and feeling pretty 'stable' til i had to start the hands on PT,then everything came back like gangbusters. but what i keep hearing is this IS all to be expected and 'normal". so what do ya do but wait it out ya know? my last PT visit i too worked with a machine for about five min(i sat on this thing and just grabbed ahold of handles and kind on peddled with my arms,using my good arm to propel my bad?),then everything tightened back up in my c spine and he went over my alloted PT time just to re release the area again before i left. my c spine is just sooo hypersensitive these days and it does not take much to trigger that muscle contraction in there all over again. this is just and has been an ongoing issue with me since 03. regenerating constant trigger points. this myofascial honestly really is the only therepy that has worked at all for me. too many trigger point injections have been done i lost count a long time ago,but to no real affects. i am slowly working up to the 'bands".
i am just wondering why just having your surgeon simply tighten up those lax ligaments isn;t something he considered for that particular problem? it would just seem logical ya know? i am sure there must be some reason? honestly hon,you are lucky you had this all adressed before things really started to tear apart in there. i had no clue,nor did sammy that our damage was as bad as it was til the MRI showed it all. i think your problems would be probably twice as bad if you had actually waited longer.
i am wondering just what the "freeze" spray wa that your chiro used on you? was it biofreeze per chance? i found that stuff thru my hubbys friend and it has been a really huge part of my ongoing PM. i use the roll on stuff tho so i can really rub it into the bad areas. very helpful stuff,along with using the lidocaine patches right on the bad spots or the base of the TP that just radiate out pain all flippin day. every little bit helps.
keep us posted on how you are doing. this really is soo helpful just to see others experiences with 'healing and recovery".
hey sammy my girl. it is normal to feel like crap after a 'good' session,i do all the time after PT. it just pisses everything off agin and starts that ball a rollin(i usually take one half a valium before and the other half immediately after.it does help). its that cascade effect ya know? as long as your PT is taking it easy during your sessions i do think what you are feeling would be considered normal. espescially if she was actually working in your more inflammed areas.
i really would start asking everyone about that possible serratus being a big part of your issues,it just sooo fits what you are dealing with so dead on ya know? if this is actually a muslce that is even the least bit inflammed for some reason,it would explain one heck of alot of your symptoms. i like the fact that you are actually journaling this whole thing. sometimes it really can bring up patterns or just reading thru it about a month after you right it,it can show you that you really have made progress from where you were at,ya know? but i really do think that muscle is somehow involved here too. i would keep on this and see where it goes.
you want to hear a really pathetic "yard" story? honestly sammy, i worked for many years in a locally owned family garden center that started out in like one tiny building,then just exploded over like acres of area over the years(it is one of the biggest family owned garden centers in the state right now). this place was somewhere i LOVED to work in since during the summer and spring i worked down in the store selling and cashiering out and doing manager stuff. then in feb i would go upstairs to the 'production' area and actually help with all the plantings transplantings and seedings of everything that we were going to be selling that summer(it was a huge huge production,believe me). i loved that job and had knowledge of every single plant we sold only becasue i knew where it came from or even planted it myself. i looked forward to feb every year becasue i could get away up there and just work with the plants and really do alot of the work involved with growing. living in MN,believe me,it WAS very much looked forward to. my yard was always perfect. i mean i won little city awards for my yard and the landscaping that i always did myself,just becasue i loved to do it all. and this was a huge way for me to relieve stress.
right now,the shrubs and evergreens we pulled out two years ago in my actual FRONT yard,have not yet even been replaced. this is all become some kind of actual 'chore" for me now just having to mantain all my gardens i have in the back yard. luckily i had planted almost all perenials so they at least come back up,but everything has to be cleaned and uncovered and some is still hiding under last years leaf dump. its just really sick now ya know? its just another thing that used to really give me that sense of satisfaction and just like i said,i really great way to just forget everything and dive in for a couple of hours. now i have to do everything in like 15 min increments and that joy it once gave me is gone. getting help is not the problem,its like my actual creativitiy is gone too or the 'want' is gone? like i said,its rather pathetic. i am determined with the help of my sons girlfreind to get some things just done FINALLY but man this sucks ya know? its like everything that used to give me any real joy or sense of fullfillment that was there before the spinal cord surgery has been just taken from me. this all has impacted my already bad depression and turned it into severe recurrent depression. its just gotten that bad at times. its just learning to deal and adapt to it all. it IS very much a devistation that occurs in your life just like anything else that occurs and changes everything 'normal' that was once your real life before things hit that fan.
but you will get thru this sammy and back on track. there is nothing holding you back right now but time and getting to the root of your main issues. and i do really think you are on the right tracks here with alot of things that need to be in place for you. just keep researching and asking those questions and you will get there. its just getting over those hurdles. look at it all as one big huge test of your endurance,strength and fortitude. believe me, getting thru my sons liver failure was something that really was soo unbelievable at times,but we got thru it all and past those hurdles and eventually everthing went amazingly well. it brang with it alot of realizations i never would have had had it not been for that big bunch or hurdles and it being such a humbling experience for our whole family. the thing is i just assumed everything would get better for me after that,only to be dealing with another totally off the wall unexpected bunch of crap. but having gotten thru everything we did with our son really prepared me for my ongoing bunch of medical nightmares. it helps to have already been thru things that are just completley out of your hands to have to deal with since my body is not in any way shape or form simply under MY control anymore. just have faith hon and this will be gotten thru and you will come out the other side with many realizations of yourself and a much healtheir person to boot. it just sucks to have to go thru all this. but hey,you always have me,lol.
well gotta fly here. just keep pushing things hon til you get the answers,no matter how you have to do it. you do deserve that much. Marcia
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.
Gee Mountain, you had alot of what I had done. I'll tell you that shoulder/arm still hurts,of course as Marcia would say we are "freaks" so can't go so much by us, just don't let anything go, learn from us. I get the most relief with ice. I will say the Osteo. said no more heat. I am loosing ROM fast in that arm again. I hope I did not go through that dang surgery & not get my movement back. I will let you know if I think of anything or hear anything that may be helpful. I do at times have to put the sling back on if it acts up to calm it down. Let us know how it goes.
Marcia, you are my rock! I will not (at least for now) give up my gardening. I was the same as you, nicest yard on the block, but my husband & I worked together, although I did most of the actual work. My new yard is huge so it takes alot of time. My husband has warned me to leave it be, I really am abit oc, its drivng me crazy, it needs work & between my husbands work hrs. & the darn crummy weather we are not getting much done. By now everyting would be done, trimming, new mulch, weeding, pruning & on & on...
Heck we have a rider for the back & I tempted to try ti, but then my ribs tell me don't do it lady.
I don't know Marcia about this treatment, that shoulder really hurts. The osteo kind of put her weight on it to do something & it just hurts & so does the other areas, heck more muscle spasms then before. I am really worried here, I am quickly loosing any ROM I gained through surgery. I am tired of the pain & going to have to talk to the surgeon about pm, if the myofascial is what he believes I have & after all he told me then he should have no problem recommending it, but who knows. I am not going to stop living, you know, heck this is getting out of control here. Everything bothers that left side, think about it the ribs pretty much are involved with any type of movement.
I am definantly asking about that muscle, & more then one person to. Although I am not sure what can be done about it. Every doc. has been trying to find more or less the origin of the pain well I believe that is it. I am willing to try the osteo & rest but not forever & not at the risk of flaring that pain up sky high for several days. I like her & hope she has a plan b. If this continues I won't be able to even make it to her office. It is not near by & I am on my own starting next visit. I will try to take the MR before the next treatment, but running out of the valium & god knows I am afraid to ask for more, even though this script is from over 6 mnths ago. I just don't trust any doctors right now, & the osteo is more of a naturalistic & does not prescribe to many meds at all, you know just a bandaide thing, heck like we don't know that, can't get the dang pants down in the morning or the tp off the roll hardly till I take the dang meds. So trust me I know that.
Life sure does change with all of this. I know now when my little scottish motherinlaw use to say "if you don't have your health, you don't have much of anything". I still can't believe this is my life, especially having ADHD, it is abit of a cruel twist of fate. What do you think about this treatment & what is the best way to approach this surgeon about PM?
I have to at least give the osteo a good chance because this is what the surgeon wants, but she better have more options with treaments other wise I am paying her to put me in more pain & then I will defianantly be givng any pm I see alot of my money. It is all abit crazy! I have a house full of teenagers this weekend so I better get moving & make sure I have half the grocery store in my house. I could not say no, my daughter had an honors ceremony for school & is such a good student, not that I say no much anyway. I just hope none of these girls have PMS this weekend because I just started & that my friend is always the straw the breaks the camels back every dang month, yes I know dang is my favorite word today. Let me know what you think, Sammy
i DO think you need to give this osteo a good solid chance just to see what she can do for you. different things can be tried and it is a progressive type of therepy,ya know what i mean? she will probably start doing other things with you as things start to change. its all a 'process" just like PT. the one huge thing you still need to do here hon is to find out once and for all whether or not your SNS is actually playing a big or even smaller part in your pain process. i just have this feeling hon that this 'could' be an underlying issue in there. it would explain alot ya know?
the thing is,you have had that sweating since way pre op which would be idicative of at least some level of SNS involvement. and all the other little changes and having pain that is way out of proportion for your "situation' ,well,it just needs to be evaluated so you can either treat it appropriately or start in a new direction. just finding out what exactly is involved in your particular pain process would kid of dictate the overall treatment. the myofascial pain can also just be killer at times too. between the trigger points which i KNOW you just have to have given whats gone on there,and the fascia being inflammed(which tightens it up) is part of the pain process,you just have to find every contributor here in order to just know better where you stand and also just what overall,you are actually dealing with. some of those contributors just have not yet been ruled out either way.
i would get an appt with your surgeon and have a heart to heart about what is best for 'sammy'. that would include discussing ruling out the SNS involvement and a referral to the pain clinic who can do that stellate for you too. ask him what your options are here hon. he owes you the info ya know? he KNOWS how truely painful this has been and just is for you or believe me,he would have stopped Rxing for you long ago. surgeons do not normally go this far with the narcotics. its just the way they are,believe me. find out what your PM options are thru your ins so you have that info in hand when you see him. i would also ask him outright given your ongoing symptoms just what he feels about possible SNS involvement too. he HAS TO have formed some sort of impression about that by now,hes a surgeon and he KNOWS what RSD actually is. simply tell him that you have researched RSD or sympathetic damage and you do "fit' within that area and see what he says about it. its simply the more you actually KNOW going into this appt,the better questions you can ask(and understand what he is actually saying too) and the more on the same page you will be with the surgeon. believe me sammy,in this type of situation,the more you actually know about "your' situation and possible contributors the more empowered you will feel to ask those questions. i have been where you are way too many times to count. this just needs to be done,the 'talk'.
also obtaining all this surgeons records from your visits(before you see him) will give you a better idea where his head is at and the overall impression of your situation as he sees it,you know what i mean? it gives you that little bit of special insight into things to just know what he has been thinking about you and your recovery process all along. i have found some really important info just reading thus surgeons clinic notes during recovery processes that i wondered about and had confirmered either way just by reading what was in his head after a visit. its just kind of important for you to actually know whats in his head before you see him for this particular visit,thats all. his impressions would just be inthis stuff. its just another 'tool' to help you along sammy.
in most cases,with surgeons anyway,what you get as far as the "clinic visit notes" are actually,usually inthe form of a letter that gets sent to the referring primary or other referring doc that is just giving them an update on the patient they referred for surgery. just a bit different than what you would get from your primary if you got HIS notes,ya know? but ANY additional info you can obtain from your surgeon before you see him again would just give you alot more info and just knowing where his head is at is crucial for you. it helps alot or i wouldn;t be telling you to do this hon.
of course,during the course of this type of conversation,PM would come up too. you just really need to get this set in motion the sooner the better sammy. and that injection needs to just be done too. if nothing else,do that research on the symtoms and also tell him you know someone with SNS generated pain like RSD or the newer name CRPS,and that this person really thinks you do have at least some level of SNS involvement in your particular pain process and just see where he goes from there ya know? your symptomology both pre and post op just fit alot of the symptoms hon.
you just really do need to have an open honest discussion about pain management and possible contributors to your pain,and of course,what your options are here. i would also ask him if he could help you out with that valium since it has been helping all along.he knows how much value there is in just being able to calm down the area with valium from time to time. considering the myofascial involvement,he knows,trust me. just tell him you desperately need answers and a sense of direction and that you NEED someone to manage your pain. tell him all your true fears about being left to fend for yourself. he knows where you are at already with this hon,bringing it up would be pretty normal considering the situation and what this has caused for you in plain suffering. in other worrds sammy,you are not telling him anything he doesn't already know ya know? this pain process just HAS to be managed by someone who understands pain generators and that would be a good PM. this is just desperately needed right now for you to at least have some peace of mind and some sense of direction. hanging in limbo,espescially when scared to death about alot of things just simply sucks. been there done that one to death. your surgeon just owes you this info and a referral to someone who can best help you right now with pain. believe me sammy,he will be more than happy to be able to not have to rx anymore for you. most surgeons just HATE that stuff anyways. most,unless there is some sort of special circumstances just wont normally go over that six week mark. ya just need a chat with the surgeon hon. just be prepared and do research on things and obtain the right info BEFORE you see him. as before,write down all pertinent questions,then make sure to ask them. simply tell him that you have a list of questions that NEED some answers and then let er rip.
i see my ortho on this tuesday. i am not sure if he is going to actually release me yet or what since i am still working thru PT,but for me,that is going to be an ongoing thing anyways,so who knows. i am still having good and bad days and periods of time thruout the day that can be ugly. but some of them i am bringing on myself by simply overdoing things too. its just way too hard to sit and watch all my outside work go to hell in a handbasket so i do the little increments of stuff then go back inside for awhile and do nothing and try again. now i have the dang bunnies eating my very very favorite flowers? the asiatic lillies? little bas*&^%$!!! i DID have like fifteen different varieties before the little suckers started eating them from the bottom up. grrrrr. as soon as they pop thru the soil and grow about an inch or two,bam the suckers are all over them. they are just too wide spaced for me to actually fence them in. haven't quite figured out just how i am going to get them, but i will,bwaaaa haaaa haaa. they will pay!
okay,i have to stop now,i am getting a bit crazed. just have that talk sweetie. you just HAVE TO know things and who will be manageing your pain issues,at least til this hopefully resolves itself. just try and not 'do' too much,K? and i will try too. i have to go track some wild game now. Marcia
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.
Marcia, You have got to be kidding me, we just have to much in common, I have got the same flowers & the same problem. Your ahead of me with the flowers because of course I am abit more north. I have the same problem. I have so many rabbits you can sit & watch them play all day. They nibble the dang flowers till there is nothing left & I have tried everything. Dog hair, pepper, the hot pepper spray, makes me so mad. Those flowers have not even got a chance to bloom for two years. In fact I noticed one of them is barely coming up this year. I was just asking someone the other day what else to try. They scare away easily so I am putting another set of wind chimes up, but heck half the time there is not enough wind to do anything. I work so hard in my flower gardens & the dang rabbits eat my favorite flowers. I fenced in my garden good but don't really want to put a fence in my front. I am going to ask when I go back to the nursey, cant believe I forgot to ask when I was there. Let me know if you find anything that works.
Ok woke up with my index finger on my right hand hurting like mad, it is abit swollen up. Both shoulders are so painful this morning. I just don't get it. Cant lift either arm up. This is really getting to me. The left shoulder feels like it wants to snap. It feels like I was holding a very heavy object above my head all night. Crazy. Both sides are just aching, especially in the dang scapula area. Its getting abit more confusing.
Do you really think I may have the SNS thing going on? The left hand sweats still but very little. I am not sure how I would have developed it.
I could kick myself for not asking the surgeon about PM when he phoned. He kind of sounded like it was so final, I am worried he is passing me off to this osteo doc. who does not deal in pain meds at all. I have no choice but to ask when I call for my next script about an appointment for PM, it is coming to that 6mnth mark for my surgery. I have been worried sick about it taking months to get in & having noone to treat the pain while waiting, do you think the surgeon would do that? I do believe he knows I am in pain but you just never know. I dont trust my pcp anymore every since he slapped that "its just inflammtion of the chest wall" if he would looked at the dang records he would have known this has been an ongoing problem, heck he is the one who started me on oxy last august.
I do know it is time to address the issue of PM, I did try but he said to wait to that 6mnth mark & for the MRI & osteo appointments. I can't live my life being this limited. I was thinkng the other day, if I was a man & the wage earner I wonder if I would have already been in PM, you know. Well I still need to be able to contribute to this family so something has got to be done. I am not just talking about narcotics, what about someone who can try other methods, that is why I want into PM. Heck I am thrilled when I can cut back by 1/2 dose of my pain meds, but then again thats probably because I am not working & taking the motrin to. I have just started the stronger dose of the compound cream. There was a different guy there, & I got to say he had me so peeved, told me there has been noone this stuff has not helped & the lido did this & that, I stopped him & said "I was on the Lidoderm patches & they did not one thing", I was on the strongest steroids & nothing", the other chemist was walking in when he was talking to me & came up to the counter he remembered me from the week before, I do not like when someone makes promises that something will work, then give me my dang money back it it don't. I have been so disappointed by promises in the past that I see red when someone starts that crap. The stronger the dose the more expensive at tune of 50.00 for aweeks supply because the area that I have jto apply it is so large. I have to contact my insurance to see if they will reimburse me, they cover the patches so why not his cream. This guy did not even know what the my problem was before making these statements. I ask the other chemist about if it would help the myofascial & he said if there is inflammation then there is a chance it will, but if this strength did not make any difference then he does not think a stronger dose will work either, he did say that they have alot of success with this compound & he will be surprised if I dont get some kind of relief. So we will see. At least he was abit more realistic. I have a low tolerance for people who make statements or promises that can't be kept. I am tired of having my hopes up & they don't realize how depressing it is when you try all these things that everyone promises you will help & nothing comes of it.
I am worried sick over this shoulder, I am telling you after all that pain from surgery & before, that shoulder is being neglected & going down hill. I am not allowing the osteo to do to that shoulder what she did last week. She had me hang it off the table & beared down on it, well its been sore every since, don't you think its abit soon for that kind of thing?
That pain has even been going up the neck to give me a headache on that side. Hurts behind the ear, all the way up to the temple, even the eye area looks abit swollen, scares the crap out of me because of my past history of migraines, that is one pain I don't get rid of easily & it can last up to a month. The whole area above the scapula going into the neck is swollen & in spasm. To top it all off I have had cramps since thursday from my monthly visiter, I don't usually cramp for that many days. Strange all that perc. & don't help the cramping much. I told my husbnd if a migraines kicks in I am done, & he knows it. I am mad at myself for allowing her be so aggressive with that side, but I really did not realize till she went to do it. I'll tell you what a week.
I hope your recovery is going alot better then mine. Your a week behind me for that 6 mnth. mark. Does your surgeon treat up till that time to? How is the other shoulder doing? I think we need a weekend trip to a spa or something. The only thing I look forward to is my gardening & if I can't do that I will not be a happy camper. I am using the lavender & peppermint oils to soothe abit. I'll tell you at times it works better then all those prescription drugs. My husband has had the virus with all the congestion, I put the oils on him & he said he has not slept that good in over 6 mnths, said to make sure I get some more. That is saying something that man poo poos everything. These oils are the real deal & a drop is super strong, & believe me I am a doubting thomas but they do help at times. To many people get relief from them to ignore it, & hey its all natrual so can't hurt. That is something you should consider, there is one in particular that I really like, my sisterinlaw is dropping some off for me to try & if I get relief I will let you know. I'll talk to you soon, Got to go ice, Sammy
With all of what you are going through, I understand the need, but it really isn't normal for you to still be needing the sling for your shoulder after so many months. My surgeon had me out of mine after just a couple days. Even with rotator cuff repairs, it is usually 6-8 weeks. Since your shoulder is so immobile because of all of your pain and you are losing your ROM, have you considered consulting with your doctor about the possibility you may also be developing frozen shoulder. It sounds like you have some classic symptoms. Especially with your time frame. My dad developed it after his arthroscopic decompression surgery about 7 years ago. He had some pretty intense pain along with the severe loss of movement as well. Good news though is that he is completely fine now.
If is is frozen shoulder, it goes through three phases. #1 is an inflamatory phase where the shoulder is painful and loses ROM. #2 the shoulder is stiff and pain decreases. #3 the shoulder gradually improves. Sometimes a cortizone shot helps with the inflamatory phase.
Feelbad, with all of the research I did on the internet about shoulder impingements, I really worried about how much damage I would have if I continued to just "live with" the pain. That is why I aggressively persued going to an expert surgeon when the PT didn't help. I talked to my surgeon about all of my options, including tightening my ligaments. The surgery for this is only used in extreme cases-like for repeated full dislocations. It is difficult for the surgeon to know exactly how much to tighten the ligaments and, even with an expert surgeon, I run a risk of losing ROM if they tighten too much. It is a very very fine line for the surgeon. At this point, I am hoping that the decompression will help with reducing the daily inflammation (once it is healed) and allow me to exercise to build the strength in the muscles to hold things in place better. I guess the other surgery might be a consideration way down the line if this doesn't help. I really don't want to lose ROM permenantly. At this point, normal for me is some extra ROM. (My PT is teaching me about where I should be when I exercise so that I don't exasperate things again.)
While my shoulder is still sore, expecially after I have exercised, I am almost back to full ROM in front, up above my head and out to the side. I have to be careful about the overhead and side movements because it still "catches" but it is getting there. With a bit of pain, I can get my hand behind my back at waistband level. My PT said that it will continue to be sore and "catch and pop" while I still have the inflammation I have learned to make ice my friend. I started a couple new exercises at PT this week. One of them is really hard. My muscles were shaking like crazy and I wasn't even using any weight. The PT says the movement is using only the muscle I was having the most pain with before the surgery. I figure I have a long way to go with this movement because I probably haven't really relied on using these muscles for so long because of the pain. I really think I am having such success because I have a really good therapist. I run out of sessions after two more visits though because that is all that my insurance approved. It will be hard to keep it up on a daily basis on my own. While I am active some, I have not been one to 'work out' for years.
By the way, my PT gave me some things to try for my neck. I will see how they work.
Now if I can just get my other health issues under better control. I have multiple pulmonary and esophageal tests in the next 1 1/2 weeks. My asthma was really out of control this winter and I finally got in to see a pulmonologist. It only took 4 months to get an appt.
I wish you both well,
Last edited by MountainReader; 05-18-2008 at 05:23 PM.
MR, I use the sling to take the pressure off the ribs more or less, & yes because I was not able to have the pt done on the shoulder, the shoulder/arm still suffer at times. I never wear it all the time because I do not want FS. I had to do the same before surgery, but actually was in a sling more. They felt the weight of the arm puts extra pressure on the other areas that are inflammed so with the arm up it kind of takes the weight off the chest/ribs. I know it is hard to understand but it does help at times. The shoulder is still really sore at times & I dont think it will get as good as it should with out pt, which for now has to be put on the back burner, but I am addressing my concerns with my osteo this week. That scapula area is really bothering me & I don't want to just ignore it. the area where my problems are is just so large it is hard to focus of what to address, but I can't exercise the arm much with out causing the other area to act up big time, that is why they stopped pt. It actually had the pt really worried. you can see the chest area will look swollen & the spasms can get awful. I use that arm just not as I would normally , no overhead or behind the back movements. The right side is sore from over using it. I am on medical again & really trying to do the right thing. I never finished the first medical leave, had to go back to work early, then when I attempted to go back on leave same thing, so this time I am really trying. Trust me when this acts up it leaves me no choice, I can't breathe when the whole area is inflammed & spasms can be non stop. I am just hoping for the best. I will probably be using that sling on & off for awhile. I may just have it on for an hour or so some days, depends on how bad everything is. I can't lift at all, that will cause it all to act up. Remember I was told to at the surgeons office for some it can take up to a year to fully heal. One year is better then never healing at all. I still get that popping or snapping every now & then. I'll tell you if I had to do it all over again I would not put anything off. I am lucky to have pain levels kept at the 4-6 level most days. We all are led to believe that the doctors can fix everything, so not true. Took me a couple days to let it sink in when the surgeon said no doctor can "fix this", & I have learned the hard way with alot of peoples help to be my own advoacte. Thank god for Marcia, she has been my rock. Most of all I have learned to listen to my body. Good luck, Sammy
MR, sounds alot more touchy with doing that surgery than i would have imagined. who knew? now i see why you didn;t go there. i would suppose that it would be a very delicate balance to get it "right'. it does sound tho like despite everything,you are making some progress,thats what is really important ya know? every little 'new' movement i can make without it feeling like i want to die really makes me feel like at least something is actually working. my ROM has really gotten soo much better from when i started back with my wonderful PT guy. he said he can "feel' the loosening in thata rm now and more flexability. i can see it too in ways i move,but man o man,one wrong move in a particular way,and i do remember i recently had a freaking surgery. last week i was finally able to start just using the PC mouse with my right hand again. when i was trying to go back from my left,i had alot of pain after just having to move this thing around alot and out to the side. so thats progress. i'll take what i can get right now.
if you are running out of PT sessions and you still feel like you need them to continue progress,i would just speak to whoever did the originals and ask for like six more and see what happens. i have done this a few times before with other therepies just becasue 'I" didn;t feel like i was 'there' yet. its always worth a shot ya know? i too have the "catches' in that shoulder area. i will be doing something and then my arm kind of kicks off to the side or inside a bit all by itself. its like its just saying,no we are not doing that,we are going here,type thing? and the little jabs of pain that just hit my upper muscle in my arm? wierd stuff. still cannot explain the pain in that muscle or the atrophy that has been in an area running from the pec on the chest to the very top muscle in the upper arm. just a very sore area too,and has been for like a year and a half now? i am a freak.
hopefully things will continue on the upswing here for ya. time will tell with all of us ya know?
sammy, that swelling is really insane hon,honestly. this really is starting to really worry me SNS wise sweetie. it appears to be actually moving from place to place or migrating further than it originally was at the beginnig ya know? i just really am wondering what level of involvement that SNS may be playing here,really. this could be a certain level of 'normal' for what you have going on,or it could be somewhat generated by SNS affectation. like i said,that stellate would really help ID all contributors to your overall pain process hon.
what i mentioned to you in that other post about REALLY speaking up to your surgeon about this possibility really just needs to be asked at this point. it has gone on long enough that he just HAS to have formed an impression by now. this just is so crazy sammy that something else just has to be contributing to this nightmare other than just plain inflammation. the thing is,if this is some level of SNS generated crap,getting to a good knowledgable PM who knows how to bring this down to a duller roar for you and could do that one very very helpful test,really is your best bet right now. if this is indeed sns invoplvement of some sort,the sooner you can start treatment,the better the outcome. this could even remit itself to a certain degree with the right meds and or injections. lyrica actually,despite the side effects i had with it,actually took out the swelling down over half in my right knee,and some of my pain there and in the central pain areas in my left arm. it was really rather shocking since even after my two knee surgeries with the first removing a huge huge bakers cyst out of that knee didn't bring down ANY swelling at all for me. getting onthe right meds to really get at the root of your pain process and inflammation really would be the ideal here and that can be done thru a good knowledgable PM. they can also better cover your whole pain process with the right,possibly longer acting narcotics.
but right now,just speaking with your surgeon about everything is kind of crucial here. this just needs to be brought up,along with some other things too. like i said,just do your reaserch and obtain all of his records before you see him again,it will help alot to know what he has been thinking about this all along ya know? you have just reached the point where hard questions really need to be asked and some solid decisions need to be made. unfortunetly hon,this is where you are right now.
i would ask the osteo about myofascial release being done on this area. it just HAS TO be so overly tightened up by now with trigger points and also just the overall inflammation of that fascia. the fascia could be what is partially responsible for feeling that spread too ya know? like i mentioned before,its all interconnected so it wouldn;t be beyond the relm here. the progression,along with a few other things just needs to be stopped before it actually gets worse. it could happen hon,thats all i am trying to say. i really honestly feel that the PM could help tons here with alot of your ongoing pain and inflammtion and also define things much better as far as any real contributors to the whole process you have going on in there right now.
just do that research,get the records,then set up that appt to get your needs met with that surgeon. its time hon. your simply not progressing here and that needs to change soon. you are stuck in this spot and still really don;t have a real clue as to why ya know? its time to find all that out and get this properly treated. that myofascial would REALLY help alot with all that other crap you have in there too. trust me on that one. this alone has made the bigger difference for me. its just really badly needed in your situation from what the report stated and what you have explained to me is actually going on or what you are feeling there. i had this too but a bit less in the overall inflammatory stages. this is part of what my PT actually is and it has really helped the most to really get in there and loosen up those bad areas. inflammation just causes its own little nightmare pain processes by overly tightening everything up there,the myo really helps to counter all that.
i will be thinking those positive thoughts for you sammy. just speak to that surgeon about everything and see what he thinks you really need here the most right now. i am sure PM will pop up. i am hanging in there with ya,K? marcia
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.
Marcia, Its all getting on my nerves, I am waking up with the right arm bugging me. Feels like its full of needles & heavy. I am really beiginning to wonder. Heck can't lay on either side for long. I have the osteo tommorrow so I wil be asking some questions. NO more big time work on that left shoulder. Something has to give other wise I will blow the other shoulder. I do not want to go through that surgery again. I am trying to rest abit more while I am on leave, man its hard. I do some gardening & alittle work here & there in the yard & pray I don't pay for it. I am cranky as all heck. I am use to doing things this time of year, not waiting around for someone else to do them for me. If I were to wait for someone else It would get done by fall. I can't lift that arm so there are alot of things I just can't do. I am going on yard patrol this weekend, my kids are going to learn how to trim some trees & pull some weeds. I don't dare warn them or they will hide, hubby to. Its hard when I am use to doing it all, I am not a patient person. The more active I am the happier I am so I look for little things I can do.
I know you believe there may be some SNS involvement but outside of the sweating what else leads you to believe that may be the case? Where exactly do they do that injection & what does it do? I am alittle ignorant when it comes to that stuff. I just wonder how long I am suppose to give this osteo, I am not going to suffer here but trying to be patient.
Thus far I think the binder has helped the most. It has helped cut back on the throbbing as long as I don't push myself. I went with out it the night before last & was in more pain the next morning. I'll tell you I will worry until I have PM, I have to respect the surgeons request but man he better back up his words. June is when I am suppose to stay off work till & that is my 6mnths post op. I am using the stronger cream I can't really tell if its working, I am abit less sore in some areas but not sure if its the cream or because I am off work. The darn shoulder & arm are really bugging me, I am not a happy camper with not having my ROM, & no way can I let anyone cause more problems there. With me one can aggravate the other. I have asked about the myofascial & after not doing so well after last treatment I am curious to see what she says & does. I am stopping into the pt's before I go to see what she has to say & I will also be asking her some questions.
I'll tell you I sure know what it feels like to be a freak. All I know is that area is all connected & that muscle sounds like it could be the so called culprit. I have thought back to the very beginning & I know for a fact I messed up something in that chest area. That is why I think they kept thinking it was cardiac. Heck they transported me to the hospital & was so convinced they even did a heart cath. My breathing was really effected. I think back & I am almost positive I was going into some major muscle spasms, only then I did not know it. You don't know how many times they thought this was cardiac. Only noone physcially examined the area, you know no palpating or really looking into it. I honestly believe that if its not lfe threatening they tend to overlook it. That is why I am in this boat. After hearing all that what do you think?
In order to really find out what is happeing or how it all came to this I think I have to go back to how it all started & that is how. I remember thinking I was indeed having a heart attack, it would come on so quick, usually after being physical & I just could not breathe. That chest area would feel so tight. Never even had one single problem till moving into this house & let me tell you I worked my rearend off. As I said I was never one for waiting around for someone else to do it. If I could find away to move it then I did. Of course it did not help matters that I went to work shortly after, the first client required lifting all day. I was never abig person, heck even when I was pregnant I never weighed over 122, only when I was on the steroids did I gain abit of weight. The thing is you know your own body but doctors do not listen. Soon as I tried to tell the Rehab. doc how I believe it all started it got confused & blew it off. That chest area is the key, I just know it. Not that it matters so much as the damage is done. Instead of listening the doctors make you out to be a nut case or a middle aged depressed women full of anxiety. Let me tell you they told my sister in law she was depressed & all this bull because she kept feeling pain & like crap, well less then a year later she was dx with cancer. Even with all the tests it was hard to find, had to get to the liver before they found it. So much for all the anxiety & depressioned bull crap. I would like to tell that doctor & ask him how the H*** he lives with himself! Sorry got off alittle there. I am just tired of it all. You know of the guessing games. I am sure there are myofascial problems but where to go from here & am I ever going to get better at all? I don't think they have aclue as what it does to your life with all the waiting & wondering & worrying the big W's I call them. I can barely do much of anything some days, what the heck kind of life is that? I can't see putting off PM past june thats for sure. This next osteo appointment I am laying it on the line so to speak. I'll go if there is hope but not if it brings on more pain & worry. I have been going to doctors for over the last 2 yrs & have done every single thing I was told, so I have learned try it & if it don't work get out.
I know you & everyone else are right about the myofascial treatment, but at the same time I am at the mercy of what the surgeon wants if I expect him to continue my meds. So I feel one month of osteo & I should at least have a clue whether I am going to get some relief, lets hope she has a plan B. I am curious as to what you think about how it all started, let me know. Sammy
Thought I would let you know how the appointments went. Took some litature in on that muscle to the pt & the osteo. The pt was intrigued. She said that they did not even go over that muscle much in school & it very will could be causing me some problems, she said it makes sense that it would have been over looked. Osteo pretty much said the same, not a muscle that is commmonly injured. She said the same could very well be very much invovled in causing alot of this pain. The one diagram shows an area where alot of my problems were for along time, under the breast, that is why I could not wear a bra.
The osteo said she can't do the traditional treatments on me & actually went into examining the ribs. Big mess, which is no surprise. Said she was surprised I was even there. I am to call her &let her know how this las treatment went. from now on more gentle treatment if I continue & she said I have really hund int here & does not blame me for wanting PM. Wanted me to consider spinal cord stimulation, but I don't think that would do it for me. I expressed my concerns about the shoulder. Which the pt said I should get good PM & then work on the shoulder, she said try to do very gentle exercises. That shoulder is bad. I am really getting some pain. Heck I am going backwards. I will be calling the surgeons office this week to see about the next step here. Have no clue on how to proceed with him. Really sick of it all. If I decide to go back to osteo she will do more myofacscial & the pt is asking around for me to see if she can come up with anyone who is trained in myofascial release.
Hows the shoulder, man I feel like I did before & some days I feel like I am only a couple weeks post op. I am going to try the pulleys abit.
I am not sure if I should try to make another appointment with the surgeon or just via phone, I am worried about the shoulder. What do you think? I know he already told me he does not know what else to do but this shoulder is getting bad. Wish me luck, Sammy
well hopefully we may be onto something with that muscle that no one really acconted for before ya know? the thing is,when you actually have an issue that alot of people never see or really don't deal with,they are not going to be knowledgable about it. i found this out with my cavernoma inside my cord. three different (who i assumed were very knowledgable) NSs gave me sooo much differing info on what this ment for me as far as risks/treatment and prognosis,it was just really insane actually. it wasn't til i got to the one NS (head of neurosurgery) up at the U of MN that i found out just exactly what this ment for me. he just knew becasue he had the most ongoing experience in dealing with these little sobs in peoples cords and brains and removing them. that is where i finally knew what i was actually dealing with for the first time,and it did scare the living hell outta me. i hope finding that info on it really does make that difference for you sammy. like i said before,it just 'fit" ya know?
i was trying to go back thru the posts? alll of them and just couldn;t get thru everything here but at times when you had mentioned certain symptoms,i was just thinking once again wow it sounds SNS related to some degree. the symptoms you have mentioned if i remeber right include the swelling,the sweating,burning,coldness,pain beyond what would be considered 'normal" for what may be going on in there, and i am sure you have mentioned other things that i just can't get back to cuz i don;t remember where you had brought them up. but honestly sammy,the ones i do know you said,really do sound like possible SNS involvement. just what did you mean by the feeling your arm was 'heavy and full of needles"? one other thing with the SNS geenerated crap is what i call 'painsations'? there is always a level of pain involved but also always some sort of really freaky sensation too? hence,painsations. that stellate wouldjust eitrher rule it in or out for you. thats what you really need to find out,whether this just is or isn't at least part of the underlying problem that would explain some ofthe more pronounced types of symptoms you are dealing with.
one big thing here when the chest is involved to a degree as well is the way the SNS runs thru that chest area can also be where the SNS is actually affected in you. you REALLY do need to see just what all the RSD symptoms are all about here so you yourself,just knowing much better what it is you are feeling or have felt with this,can read what they are then compare what your symptoms actually are with it. YOU need to do this hon,since you are the one feeling them. doing this comparitive thing is how i really realized that i did have RSD in myself. when i spoke to my NS about it,he was pretty certain but nothing confirming yet. that happened when i finally saw my great and wonderful ortho.
he told me at the very first appt that i probably did have it and also told me that doing any surgery on that knee at some point could spell disaster for me. this is why i waited so long to have my first knee surgery and that bakers cyst removed. once i tore that meniscus,it was pretty much a done deal. luckily he knows about RSD so we took all the precautions and thankfully even after having to have two surgeries on that one knee within 19 days of each other,it didn;t spread up or go to the other knee(it is always possible to have a bilateral spread with surgery since both legs share the same level of the SNS chain)so that was amazingly wonderful for me.
the simple fact that the hand/arm? has been sweating alone with no other body part sweating really indicates some level of real SNS affectation going on sammy. this is being sympathetically done since the SNS does simply govern sweating in our bodies. so that much IS confirmed in you ya know? the thing is,no two people will present with particular symptoms of this condition in the exact same way and do not always share even all of or the very same types of symptoms. it is very highly dependant upon other factors of involvement in that particular patient. my onset was very slow with certain aspects of this slowly presenting themselves mostly during the very first year during my rehab from the spinal cord surgery. we did know however,based upon the horners syndrome that developed while i was in rehab,that i did suffer sympathetic damage. horners syndrome is a permanent constriction of only one pupil in one eye(my left) along with some drooping of the affected eyelid. this condition is actually what gets created chemically with the stellate itself when it hits the right spot. its kind of how they tell for sure that during the injection/block they did indeed hit that right spot in the stellate ganglion within the neck. but in the case of the block,it rights itself once that block wears off. mine on the other hand is stillhere just becasue my damage casued it not the stellate.
the block is actually done to the stellate ganglion within the front of the neck area?(look this up too when you are looking up RSD symptoms) it tends to sit alongside the trachea in the front. this is where they inject the block at. it sounds alot worse than it is really. i have had much worse blocks done in other areas,believe me. once they are certain the block has taken effect,they will ask you how your pain feels,any better or the same. depending upon whether or not you actually 'feel' any relief at all in any way shape or form would kind of dictate the dx of your pain being SNS triggered/genrated or independant of it. its a pretty straight forward type of test,either you feel relief or you don't. the block ONLY will block anything being genrated from the SNS and not other nerves so this just tells them whether or not the actual SNS is the one when they block it. you just really do need to know this one thing sammy. it would be ruled out or in as a contributor since i know you do have other issues there. but if this were SNS triggered,it would really explain alot of your more crazy symptoms there ya know? and the over the top levels of pain you are still having too.
you appear to be just loaded with various symptoms in that one area along with others that are developing in other areas now. that could be a possible spread or it could just be from the really over the top level of inflammtion and swelling that could also be affecting the spinal nerves back there too. that swelling and a few other things you have going on in there would naturally create at least some level of real pressure being exerted upon the spine areas which could be giving off signals and thus you are just feeling that in other areas further down too. you just have a very complicated area in there that could be affecting ALOT of different things. this is the one big reason you do need to rule in or out that SNS part of things. that block just really needs to be done once and for all just to see how much it could be contributing to all of this. 'something' is underlying in all this and keeps it "going' the SNS would be kind of logical given your symptoms,thats all.
DO NOT let them even begin to start talking about that cord stim without the benefit of even beginning to try a good PM first. never hon. only as a last resort for you right now. this was actually brought up by my neurosurgeon shortly after my sp cord surgery,like two months out? i had only been out of the flippin hosp for about less than a month at this point and had not even begun to try and see a good PM yet. but the central pain syndrome was sooo over the top at that point this was actually considered by me til i actually read the medtronics web site itself and in they stated just what i told you,only after other PM modalities have been tried and failed do they really recommend even doing this. and this was on the manufacterers web site. so luckily we didn;t go there. but it something for me to consider possibly way down the road here if things keep progressing the way they have been. just keep that one WAY at the back burner for now sammy.
just finally getting to a good PM who can try and help manage all this for you would be your best bet right now for any real good shot at pain relief or management at this point. it really has not yet even been tried with any of your docs yet. you need to be here sammy. this will also be where you can get that block done. your pain could actually even go down for a bit with that block too. some RSD patients have had an amazing response to even just one stellate block being done on them. repeated ones can also be done too. the time has come sammy. it just really needs to be tried.
just do some in depth research on your compartive symptoms and also look into what that block does too. the more symptoms that match will kind of tell what may be lurking there hon. you just NEED to really do this right now yourself. you know much better just what you are truely feeling and what symptoms you may have and not even know it til you just look and see for yourself. you just need to find out sammy,the sooner the better for the best possible treatment. okay,i think my hand is going to fall off now so i have to stop. just start that ball rolling to a good PM. as usual,keep me posted hon,marcia
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.
Marcia of course I know your right. I have just told pepper the same I would not even consider the SCS with out seeing a good PM, there is to much I don't know yet & PM & CP is something I have to learn alot about. I am not the type to jump into anything but at the same time I will just research. I know I have to research the RSD, I am frustrated that the surgeon is making me wait till the end of the 6months, but really my hands are tied. I am hoping now that Osteo has been tried this will give him a jump start. I am not sure whether to make an appoinmtent of just ask to be put into pm when calling his office this coming week for a refill on my meds. I do know my patience is gone. I am having alot of pain with that shoulder, alot. Can't lift it over my head at all, in fact it hurts to move it at all.
The symptoms are so darn sparatic it confuses the heck out of me. I just know the pain is getting worse & I am at the end of my rope here. I am just starting to feel drained, by the pain & the emotional acceptance of it all. I try so hard to have some what of a normal routine & life but in the back of my mind I wonder how the future will be.
I think its cruel to make me wait much longer, you know? On days like today I will stay in pain all day & to boot my darn stomach hurts because my bowels are acting up. It is definantly time to try some other avenues. I am pretty sure the osteo would agree since she handed me the SCS book, & came right out & said at this point she just don't know if she can help me. She said to call her & then I will ask her some important questions. The thing is these osteos don't really get into drug treatments, but I need some names of PMs I am hoping she will give me at least a name & then of course the surgeons recommendation. I am going to try to follow the advice of cmp & ask for one that specailizes in rehab. or anesth. Of course I am alittle scared because I know this doctor will play a major role in my life. That is when I will address the RSD & mean time I will start researching it.
I do believe for a fact that muscle is involved. Once again I have to get a doctor who will be treating me, not one just passing through. Its difficult right now. I am in limbo.
To be honest I am ready to up my meds abit, I have been holding back & I am tired of the pain. That is something I am going to go over with the surgeon. Man I hope he continues to treat this while I am waiting to get into a PM, if not he should have started that along time ago. I have to trust he knows what he is doing. I still can't believe this is my life. Called my sister in Florida & just cried on the phone. She knows how active I am & knows how hard it is, she has a muscle desease & understands how hard it is to accept it. Hers does not cause her cp but almost cost her life. I told her I am finding it hard to get used to the changes I will have to make, it is just so ironic for a person like me who has ADHD to find themselves physcially limited. Work calms me & is so rewarding. I am not a women who likes to sit & watch tv or just ignore work & wait for hubby. Oddly I know so many women like that & I could never figure out how they could stand it. I always found it rewarding to accomplish things like yard work, even love my house to be clean, I just love to tackle things. This is the hardest thing for me to get used to. I hope PM will give me some of that back. That is my only hope left. Right now on days like today I can't do hardly anything, even putting dishes away or folding clothes is painful. I wish I was lazy sometimes (ha). I keep telling myself keep a good attitude, find something to laugh at, even if it is myself. I want my old life back, want ot play ball with my girls, clean my windows, heck I wont even complain about scrubbing the foors, which I hate. I have been real quite since the doctors opinion, have been avoiding people, you know? Heck what do you say? I told my husband he is not to discuss my condition or meds with anyone, I have seen peoples reactions to CPers & I will tell you I would loose it with anyone & their stupid uneducated opinions. So easy for them to talk. I have already kind of lost it with my husband who of course does not like the meds, told him if he wants to vomit & all that good stuff on a daily basis due to the pain be my guest but I will not go back to that for anyone. I am so careful with meds I am undermedicating, I know it, but always have to worry about obtaining the refills. Next call I am telling them I am taking them if need be, according the the instructions 1-2 every four to six hrs. On days like today no more waiting in pain all day. I try to stay at no more then 3 all day with motrin in between, not working anymore, & the compound cream, I need a different muscle relaxer to. I will try the skelaxin again but did nothing before surgery. I have some, so might as well try them. I'll tell you I will not rest easy till I am in PM.
Don't worry I am listening to your advice, heck where would I be with out you? I am just trying to be patient. I asked the osteo about the RSD but she pretty much just blew it off. She is really nice, every doctor has there specility & that is not her area. Let me know what you think about whether to try to get into the surgeon or just request the start of getting into pm via phone, I should probably try to get in, to many questions & I am worried about the shoulder, perhaps I can get into pt when I get the right PM, what do you think? Talk to you soon, Sammy
honestly sammy,getting that PM referral from your actual surgeon would probably be the best way to go here. when you pick up your Rxes from his office just ask to be seen much sooner than what he is waiting for so you can discuss a "referral to a good PM" with him. you are,from the way you are beginning to sound to me sammy,almost at your breaking point in all this ya know? you just NEED a good PM right now who can manage your overall pain process in the very best ways. i know from my own experience that the percs only did so much for me after all the crap refired up when i started hands on PT. they really were not helping much with the inner joint pain and some other types of pain i just have up there that makes EVERYTHING soo much worse for me right now too.
there are just certain meds and certain modalities that a PM who is also an anesthesiologist or they at least have one in their practice could just do for you with your pain right now. possibly even getting onto a longer acting version of the oxy would help. it just gives you a more regular stable blood plasma level instead of the ups and downs of muti dosing all day long ya know? even trying something like lyrica could really help too. there are just soo many different types of meds(and modalities) that could be tried in your situation that you have never even tried yet ya know? you just simply NEED someone with the overall expertise IN pain management to keep things at a duller roar so you can continue on with basic PT. you have not been able to keep that area down enough for any true progeress to be made without having to pay way too dearly for your efforts. it shouldn;t be that way hon. you do deserve to have some level of relief with this nightmare. i seriously ,just from all that you have told me since the surgey that has been going on with that area,do not think you WILL be able to actually really progress tilt hat overall pain and inflammation can get under much better control for you. i hate to be debbie downer here sammy,but you simply NEED help and the right methods tried to just get that pain down to at least tolerable before anything really solid will even be allowed to occur in your progress. you just have wayyy too much in there. espescially the ongoing inflammation and the swelling. that alone is what is mostly holding you back right now,not to mention the overall pain levels ya know?
sammy,i was living in hell,absolute hell before my primary referred me to my current PM. it was only after being there and titrating up to a good solid level of the OC and also trying different methods and blocks and other meds that are ment more for my types of pain that i really got the good relief for me. i owe my current life to my very knowledgable PM. there are just soo many different things they could try to help you hon,really. you know me enough by now to know that i would not be very highly recommeding this to you if it wasn't something i really believed you needed right now. this could allow you at least to be able to get some level of 'normal' back in your life too. it did for me. its just right now,and since that surgery,every little thing you do seems to keep triggering this whole process right back up again,i KNOW how that goes sammy. and how it limits you too. this is just 'needed' right now hon. like i mentioned a few weeks back,this is just another member of your healthcare 'team' a group of people who you see to just manage all the needs of sammy. i have to see five seperate specialists for various issue that just keep popping up in my freaky little body. some i don;t see alot and others i see all the time. this is what you need to have in place sweetie,all the different people who handle different areas of you. right now,you need to add to that team of people with a good PM who can manage and possibly help in diagnosing whats up in there for you. this would allow ruling out or in the SNS generated stuff too,which just HAS to be done at this point so you can get the best possible treatments and or interventions made. who knows,one stellate block could even get the pain down and keep it down if this is indeed being somewhat SNS fired in you. you wont know how anything will work til you try it hon. the PM just has the right tools for the job and other docs don't ya know? trying to manage this on just percs and the other things you are using,from what you still describe as your overall pain level and swelling(which is also contributing here at least from pressure)its not being effective enough to give you any real quality of life still.
i really am amazed that your surgeon ahs gone this far out for you in actually continuing the percs,really. i know this type of surgery IS a totally different world as far as pain and recovery but despite that,most surgeons(unfortunetly most really don;t care about their patients post op pain past a certain time) just don;t go out after three months post op,thats almost unheard of for any surgeon. i think you got really lucky with the caring part of your surgeon sammy. most are not that caring about their patients pain and would have just shoved them out the door to a good PM by now. that IS somethng really. the thing here is hon that your surgeon does realize how bad thigs are for you right now and how bad they have been,and i would think at this point he would jump at the chance to just refer you to someone who could do a much better job to try and manage all this for you.
this would also take away what i KNOW is a huge level of anxiety and uncertainty in you about when he is going to just stop Rxing this for you. you would have a set,in motion plan for treating your pain with a good PM ya know? PM does have its sucky parts,but as long as you can follow rules/protocals,it shouldn;t be a problem there. i personally think this could be the best possible move you ever made for yourself with all this. the PM can also help define what is coming from where too. by blocking certain areas(selective nerve blocks),it lets them know what signal or area is casuing a particular pain process,just like with that stellate. it would narrow it down for you at least. i do believe that serratus is a player here to some degree too. don;t know exactly how,but geez,it just fits soo freaking well with what your ribs are doing ya know? this muscle or muscles,are just what kind of "regulates' the rib cage,duh,you would think someone would have simply looked at things from THAT angle?
i really do think sammy that when you just go in to pick up your next Rx for the percs that you really need to ask to set a discussion for a referral to a good PM as soon as possible. it is always best to be referred by someone who really knows your overall situation. coming from your surgeon would give it a bit more gravity too. i know its scarey hon,but honestly sammy,at this point you just NEED to go there and start progressing with everything. i realistically cannot see that really happening for you til you can at least get a better handle on the pain and whats triggering this. something IS causing this to fire and its not just 'doing' things either. does this fire off independantly of you actually just 'doing' anything to cause it? like when you are simply sitting and reading the paper or just doing nothing at all during the day or at night? just kind of an important Dx question for ya. just letting you know here too that most pain clinics for their own reasons really NEED to have a referral despite what your ins co policy may be on not needing one for certain docs?. they wont take in just anyone. but believe me,you would more than qualify.
the thing is,every single aspect or area of involvement can cause its own little ways of showing itself. i KNOW you have more than just one thing in there that is at the root of all this given the level of symptoms you have. there are at least a few contributors here hon and each one needs better definition in order ot just "do' the right things to manage them,and your pain. and this is where the PM comes in. its just way past due to get you to someone who would have a much better handle on really doing the best modalities and meds for YOUR pain process.
before you actually see your surgeon for this referral,check with your ins co to see which ones are actually coverd in your plan in your area first,that will help in getting that referral to one. saves time and all that ya know? and defintiely DO finally ask your surgeon about the possibility of RSD or some level of sympathetically generated pain going on in there too. i think he already knows this myself but has not actually brought it up since you were still being treated in PT and other issues. you just really need to know what he thinks and if this IS or is not at this point a factor in all this. you can get his notes too before seeing him as well. that would help tons just knowing what his impresssions of your situation are. it normally wouldn't take more than a week to obtain these, tops. espescially if you signed a release in person while you were there. otherwise,doing it by phone,they have to send out that release so you can sign it and send it back. it would just take a bit longer. you really could benefit alot from having this level of insight BEFORE actually seeing him or i wouldn;t be telling you to do this sammy. believe me hon,i have been down this road many times and it does help alot.
it is just time to set your real priorities right now sammy and then just dive into them and get the things done you NEED done right now. this is just IN your best interest overall right now to get thee to that PM for management of this crap and to obtain an important diagnostic test that could explain ALOT right now for you. and like i mentioned before,if this IS being generated by the SNS to some degree,you may even get some more long lasting relief just from that one stellate being done(it could even take down that swelling too). some people just seem to respond to them in really amazing ways considering what they were feeling before it. i would also ask what your surgeon feels about trying lyrica too. this DID help my pain,swelling and the heat that was being generated,unfortunetly the side effects were too much for me. but i do think some of that had to do with my kidney issues too. alot of people have had great results with it. just a suggestion for another med to try besides just the old narcotics.
just get things started hon. you really just NEED a PM in your life right now. hang in there sammy,things will get better here soon for ya, it just has to at this point with the right people in charge of your care. you have just reached the point here where someone with real solid pain management knowledge just really NEEDS to be in charge of your pain care. now go set up that appt. don't worry about that six month deal. i think your surgeon is kind of expecting you to ask this right about now too. you are just NOT progressing in any real way here,so what is going to change by the end of six months ya know? its just time for that change,and possibly some good solid answers as to why you have what you are experiencing here. keep me posted sammy,marcia
Marcia, Oh god I lost it today, I wont get into the whole thing, I put it on the PM board. If I don't get into to Pm I am going to loose my mind. Bless you, you have just answered the best way to approach the office when I call for my refill. I am going to request an appointment to discuss getting into PM & how to handle it in the mean time. If this surgeon only knew how bad it is getting. I have done as he requested & went to the Osteo, but lets face it when she hands me info. on the spinal cord stim. it does not take a genious to figure out she cant help me. I am anxious to try anything to see what can improve my quality of life here. Meaning if I have to go through more injections then so be it, even thought just teh thought makes me sweat.
I will be discussing this with him but I have a feeling he will more of less tell me to address it with PM. I think even his office is abit surprised he has looked into it thus far. My other shoulder is really acting up, so I have got to talk to him about it. I can barely use either arm on most mornings lately, that is scary.
Something is going on, that right shoulder/arm had that heavy painful prickly thing staring this morning. Its waking me up in the mornings. I hurried up & got out of bed to try to head it off from getting bad. Thus far it seems when I am up it starts to go away, but its tough because I can't use these arms much first thing in the morning, they hurt & just ache. I am really getting worried I am going to wake up & totally not be able to use them. Even my hands are hurting. Crazy. I really am a freak like you!
I tried the lryica, it really messed with me, especially my vision & that was at a low dose. the rehab . doc took me off of it.
I have to call the osteo, she said to call & even if I decide not to come in she would call me back. So I am also going to see if she knows any PMs. Not sure if she will recommend any because I am kind of new to her but its worth a shot. I just don't want to risk making it any worse. Trust me I am listening to every thing you are saying & just waiting for the oppurtunity to get to where I need to be to bring it up.
I am stuck in limbo waiting to get into the next doctor, which can only be a PM. I will tell you I am going to try to get more then one name. I don't want to start all over again for a very long time.
I am sorry to hear that the pt has aggravated things for you, can't seem to win at times can you? I am going to get the pulleys out & try them abit. I am totally lost on what to do. The shoulder got pushed aside somewhat & noone said if or how to proceed with it. Talk about being messed up. I ache so darn bad the only relief I get is the ice.
I am telling his office I have to up the meds. I can't continue on that dose. He said I could take more as directed but heck I will be going in for refills all the time. I just cant do it some days, you know, its just not enough. I get so fearful I wont be able to get a refill I try to hold back so I am just going to let them know all of what I just told you. I cant keep this up thats for sure. How is your other shoulder doing? At this rate I need to learn to use my feet or where depends (ha). Wish me luck, I am a nervous wreck over how to handle this all. Sammy
i sooo wish i could reach thru here and just give you a big"soft' hug hon,honestly. i soo feel for what you are dealing with and everything you have already been thru just to 'feel" better. the year 2003 into 2004 were just like what you are dealing with sammy,really. it all just sucked with these brand new syndromes and ugly nasty sensations i could not even begin to describe to someone who had never felt them. they were just THAT off the wall and insane for me. after any level of real spinal cord trauma or inury,there are just certain chemical changes that take place within the cord thru mostly that first year. now i know why my NS told me it would take about one year just to heal. it wasn't til my primary just referred me to my current PM that i really actually felt any true hope for my future. i just kept thinking "is this IT"? it was bad sammy,really bad,but that PM really really got me back on my feet and was just soo caring and kind and i could just feel that compassion he had for my situation. hes an older guy and it was just like i was talking to my grandpa or something. he feels for me,and thats what i so desperately needed at that point,someone who just understood how bad this was and mostly how this was affecting any real quality of life as time just went on.
i felt the best i have ever felt since that surgery about two months post op,after that,things went down hill really quickly. had that surgery on sept 22 of 03,and on nov 4 of that same year,that is when i actually felt ANY type of pain on my right side from my chest on down(just in that knee). that was the beginning of my RSD in my knee. having that brown sequard syndrome there on that side,i just didn;t "feel' hot,cold or any surface pain at all. very insane to try to exlain.i have what actually "feels' like full sensation,just not when it comes to hot cold or having a needle jabbed halfway into the right side of my stomach. just crazy. but after nov 4, life started to get REAL ugly.
i would just lay everything you need answers to to your surgeon. just make that appt and go with the flow hon.he KNOWS your pain is bad sammy,beleive me,he knows,so getting that referral to a good PM is something i am pretty certain he has been kind of already either going to bring up at that six month mark or is just waiting for you to get to the point where you actually ask. your pain is just that over the top of the norm for this. you need more specialized help here just to try and get that main swelling down and the source of the major inflammation Dxed. once they can handle those two things,everything else should just 'feel" much better for you. its just constantly ****** and angry and its showing it in many many ways. PM can just help with these types of things doing the best meds and modalities for you. like i said above hon,until you can actually get this whole area to just calm the heck down,you wont be able to really progress. they just really need to better define all contributors for you. that should be a priority for any PM who takes you on. it really wouldn;t hurt to just keep picking that osteo and your PT persons brains here with everything too. you NEED some answers. between all the people that have layed hands on you,someone should be able to help sort out at least some things since they DO have that certain level of expertise of the more mechanical/structural way our bodies are and move,you know what i mean?
you have simply been suffering here for way too long with no real answers as to why,that is what just needs to be found out and managed in the best possible ways sammy. THAT is your priority for now,good PM and some Dxs of contributors to your whole process. they just cannot be properly managed til they get found out ya know? you WILL get thru this hon,a bit worse for wear but you will come out the other side here once certain things can just be done for you.
oh,by the by,i saw my ortho on the 20th? i think i am released or at least 'semi' released. he said i am doing really well,despite some healing left to do and still having pain. but he said it "should' get better as things progress with the overall healing and the PT. but also told me if i needed him for ANYTHING,just pop back in and see him. we also had a rather interesting talk about my PT guy? i found out that my actual ortho also has seen this guy too(he has low back problems from just standing all day doing surgeries) and his daughter also saw him for post op rehab for a knee injury. go figure. he thinks he is a really fantastic PT and person too. he was at first going to write the Rx for more PT sessions for just basic PT for the shoulder but when i told him that i had already been seeing him pre op for the cranio and the myo and still needed to get back to that at some point,he scribbled out what he had writtin and replaced it with "eval and treat"? which just made it possible for me to also get that cranio too for like 20 sessions at this point? what a guy. i do love this ortho. otherwise i would have had to go back to my primary for for referrals just becasue i only had one "approved' session with him left from when i was originally referred to him. it was just a nice thing to do to save me a ton of hassle with my ins co. and i can pretty much get any real therepies that my PT sees fit. i was making alot of progress with the myo release and the cranio and really really NEED to get back into it agin soon. we can't til i reach that certain point in the healing. i still have some good levels of pain that are kinda there? and others when i move my whole arm a particular degree,it will just pop into that joint(that icky cramp like pain actually IN that joint,just wierd) and then the muscle in my upper arm actually kind of "pulls' it to the side? really insane what this actually does sometimes. i am still a wadded up mess in that neck and upper back tho. i am just sick of that part,its been there and a problem since that SCI. just sucks to keep dealing with it all the time. but i am thankful things didn;t go worse for me. i do so feel for you sammy. i have been down that road before and was very very nervous and apprehensive about having any surgery that was going to go into my worst area in my whole body. i just totally expected my healing and surgery to actually go kind of like what yours is. thats what scared me the most. i have had to have repeated surgeries twice i on my knee and c spine just becasue of complications or something didn;t heal right. i guess god owed me one?
just do what needs to be done sammy,you know that part. try and get in to see that ortho asap,even if its going ontheir cancellation list,just to speak to him about everything and getting that referral. this really just IS where you need to be the most right now. keep me posted as usual hon,Marcia
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.