Hey my friend how are you doing? I sure hope better then me. I am in big trouble. My right shoulder has been bothering me, woke up this morning with it hurting so bad, hurts to lift it. The left is still painful, I was doing abit bettter then everytime I would really do anything it would start. Ended up with a virus & coughing like crazy, boom there went the shoulder pain again. My GP said all the coughing is probably aggravating the shoulder. Even my ribs were abit better but know there acting up to. I am getting worried, the surgeon should be starting to wean me off of pain med soon & I am not sure I will be ready, then I will have noone to treat this pain. I have an appointment with him tommorrow (monday) I am going to discuss it with him. I believe he will order PT (great), how about you any ordered yet?
I was thinking about the RSD thing, when all this started I was having what I would call hot spots on my thigh, like someone was holding a lighter to it, always on the thigh. Then it went away, but it lasted over a year or so. It has nothing to do with the shoulder I think but it had me thinking. The hand can still sweat like crazy at times, Sometimes it will start right after putting th sling on, which I don't wear a whole lot anymore.
I still have alot of pain at times, last few days it is hurting down to the elbow & alittle down to the hand itself. I can use it alot more now that is good but it seems to get aggravated, you know? I am confused, have a list of questions for the surgeon. Boy I hope the other shoulder is not starting, I don't wnat to go through this surgery ever again. Talk to you soon, Sammy
SOOO glad you posted sammy.geez,you had me really worried there hon. i was going to post a "where is sammy" message on the pain boards today when i saw this first. wow,i cannot believe the level of ongoing issues you have had with this stupid shoulder crap. i really am wondering hon,have you EVER actually mentioned the possibility of RSD to your surgeon at all or asked him about that ongoing sweating? if not,you really do need to at this point. you just really need to start asking him some really hard questions considering the ongoing symptoms and the level of pain you have had like forever?
i have just always kind of felt since even before your surgery,when you mentioned the hand sweating,that there is at least some level of sympathetic involved here. tho my pain is still there,it has always appeared that except thru that first week of hell,yours has always been much higher than mine,ya know? i was finally told by my surgeons PA who i saw this past tues,that the rotator cuff repair surgery is actually one of THE most painful ones they do,even more than with even knee or hip replacement. wow. i CAN believe it tho just feeling what i felt and what i know you have felt but much more pronounced.
considering everything,i think i am doing okay here. i finally got permission to go without my sling for the most part,but have noticed,just becasue the muscles are weak,that i sometimes have to put it back on when the pain in that stupid joint starts getting bad again. but it eventually feels more tolerable then we take it off again.
i finally lost that dang chair from hell two weeks ago when i hit 125. the guy that dropped it off had told me i needed to actually hit 150? BUT,and luckily for me i had called my orthos office that day for something else,she said i didn't need to go that high,and the 125 i was already at was good enough,so off the chair went out the freakin door. i am just waiting to see THAT bill now. should be good. i am cleared to start actual PT now too.i have to call on monday. i am actully going back to the same therepist who was doing my myofascial release and that craniosacral therepy before? he is amazing. i so desperately NEED the release again since this sling has created absolute nightmare TPs up in the neck down thru my shoulder blades again. it is really a freaking mess up there right now just from that.
i wish things were going better for you hon.this really has been pretty overwhelming for you,that much i do know. i really would start nailing your surgeon with some questions and demading some answers. you just really NEED to find out what is causing what and get possibly to a good PM for help too. that stellate block i mentioned to you before really would be a good idea to try,just to see if it actually gives you ANY relief at all when done? if it actually does,then you DO have at least some level of real SNS involvement going on there as well as the post op crap. it is a good test for determining where a possible pain generator is really coming from. you just really need to know what in the heck you are really dealing with here sammy.i just really think,based on what you have stated that your pain is still just simply waytoo high,espescially at this point. like i said,i still have some pain but it just appears yours is alot higher and always has been compared to mine,ya know what i mean? that could be for a few other reasons too,but i really do think you have at least some level of SNS involvement that is creating its own pain generator too. believe me,anything is possible when it comes to nerves and the sympathetic too. i really do hope things get better for ya sooner vs later sammy. this really sucks. please let me know how things are goin hon. marcia
__________________
3-22-01,herniated C-6-7
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, I have indeed tried the Lido patches, aleeve & so on.
My surgeon told me that for the decompression level he had done he was not concerned at the pain level, but that was last month, I will be seeing him tommorrow (monday) & will ask again. What kind of doc can look into the RSD? I don't have a PM doc. I can't figure out how I would have got it, never in any real serious accidents, I am not sure what can bring it on. I will see what the surgeon says tommorrow.
Everyday is different for me, I think this virus & cough is aggravting the shoulder & back, at least my GP says so. I just get real sore it I do much of anything, ya know?
Really getting to me. I could not believe how bad the othe shoulder hurt this morning, have to admitt scared me. It felt tight, kind of knotted up. Just hurt, even to move it. I am definantly bringing that up, I am not going another two to three years with these shoulder problems, you know lets wait & see, lets try this, & on & on.... I am just shocked to have them both hurting, geez I need a break here. I know I have been pushing it alittle but not that much & am going to try to slow down abit.
Are you driving at all, had to drive the other day, could not avoid it, really sore.
Also what level of pain meds are you taking for your shoulder & what would you say your pain level is at? I am on days getting pretty good range of motion, but not over head, that hurts to much. Let me know, really glad to hear from you, value all your advice. Sammy
hey sammy,your ortho 'should' be knowledgable enough to determine whether or not you have some level of symp involvement going on. i was kind of suprised this time around with my shoulder surgery,compared to what i got sent with my two knee surgeries with the same ortho,that they actually DID mention the 'remote' possibility of developing a condition called RSD .it was in one of the brochures that they sent out. now that WAS new. of course,since i already have it in my right knee,i was already aware of what it was and the risks in it occuring with an invasive type of surgery like this. just really suprised that i saw it mentioned there ya know? i already had RSD before my knee surgery was done,it came along with the sp cord surgery damage to my sympathetic nervous system.
believe me sammy,i really DO think your ortho is already aware of the fact your SNS has already been involved to a degree anyway since you presented with this symptom well before your surgery. the really insane thing about how you get RSD is it really doesn't take much to aquire it. 'something' just has to be affecting or at one time affected your sympathetic nervous system.and since this runs thru many many areas of our body(the SNS also governs constriction and dilation of the blood vessels too),it can be affected just by a simple needle stick done the wrong way or even a minor type injury. its just an insane little syndrome.
do some research on it hon and you will see what i mean. many people have aquired this syndrome during some very very simplistic type of procedures and even with very minor injuries. take a spin thru the RSD boards here sammy.ask the people down there just how they aquired it,its just crazy,really.
from your description of that overall 'tightness" you have,it sounds like you are suffering from part of the same problem i now have and did have before my surgery too?this sling just REALLY exascerbated the living hell outta my already bad c spine,upper back and shoulder blades with the horrid trigger point crap? i have TONS of wads of tissue back again that are radiating out all over the freaking place up there again.the cranio and myofascial therepy i did a few months back really helped with that sooo much and now its just a total mess again. its that sling sammy,its just scrunching everything upwards with no way to just 'let it go'? not until we can really extend out again and espescially up?i still haven't gotten my arm up real well yet but am hoping with the PT it will help tons,with alot of my problems up there. i got the referral okay on fri from my primary clinic(insurance BS) so i am making my very first PT today.
i really DO think part of your pain issues is what i am dealing with too,that muscle up there is just one tight wadded up mess right now for me.i have one particlular TP that has been sitting right at the side,base of my neck on that surgical side that has been making me absolutely crazy,its just THAT overly tight right now.i even got out my 'tennis ball in a sock' thing and really tried to roll it into it to try and pop it,to no avail. all i suceeded in doing is irritating the crap out of it,great. i REALLY wish i could take some aleeve again,but becasue of the coiled aneurysm crap and being on aspirin,it has been a no no since 05. i know that would at least reduce some inflammation for me. i have been relying mostly on bio and lido for the TP and deep muscle crap,it does help some. i had actually gotten off the percs but had to get another Rx on the tues visit.things got bad when i stopped the CPM? surprised me alot since it was also creating pain for me. but it did get worse when i stopped,the joint part went back up again.
believe it or not,i am STILL dealing with that stupid tooth crap that flared up when i just had that one upper tooth drilled and filled that week before my surgery? holy crap is this sucker hyper. its either the SNS or cranial nerve damage i have that runs thru that area that i really do think is responsible. i have to see an endodontist on thurs to find out the trigger for this nightmare inside my mouth that just DOES NOT respond to even the stronger narcotics,even fent? they gave me that right before my dang surgery that day and i STILL could feel that pain in he two teeth. and the dilaudid PCA didn't do squat either,thats when i really knew i was dealing with a spontaneous nerve generated type of pain syndrome. i hope they can figure this out for me. this is all part of the 'deranged" pain my NS told me i would now have after that sp cord surgery also damaged my pain pathway to the receptors in the brain. that cavernoma sat right smack inthe middle of the tract that holds that particular pathway. a gift that just keeps on giving.yippie.
i would seriously look up info on RSD and also how the SNS actually runs(AND what it actually governs) sammy then speak with your ortho,trust me,he knows what it is. getting to a good PM doc once you have this chat with your surgeon for some better more definitive testing really would help you the most. this could just be your bodies way of reacting to the surgery and the healing process OR there 'could' very well be a level of an SNS component involved here too. you really do need to know. this has just been very slow going for me too,but not quite in the exact same ways. hang in there sammy and let me know what goin on,K?take care hon,marcia
__________________
3-22-01,herniated C-6-7
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.
Maricia, Had second follow up yesturday evening. Before the doc. came it his nurse talked to me, she told me some people take up to a year to fully get rid of the pain, I almost fell off the chair. That had me so shocked I forgot to ask about questions I had wanted to address.
The surgeon assured me that 6wks post op for this surgery is nothing. Just as I thought same as you, PT, the good news is he said he does not believe in going on & on with pt, four wks. & a good therapist should show me a good home program.
I swear everytime I get a surpise & forget to ask things. I go back in 6wks & I am going to ask these questions. He did say I came in with alot of pain so it will be a wait & see, but in no way should I get worried at this point, way to early to tell, he once again expressed how long this recovery can be. I did tell him my other shoulder is really bothering me & at this point it can't be addressed because anything done could leave me not being able to have the use of neither one. So I will have to wait. He did give me a new anti inflammatory Relafen to try, I put a post up on the PM board because I have never heard of it. Suppose to be more gentle on the stomach. I need something this other shoulder is really hurting. That is why he said not to over due it. I did explain it is hard to know my limitations because I do not feel it till after I over due it, he said he realizes it can be hard to tell.
Sounds like you have the same, the knots or lumps, mine is on the opposite side boy it can really hurt & it is huge, I did not even get a chance to bring that up.
Next visit I swear I am asking these quetions no matter what. I will look into the RSD & SNS. I have better movement in that arm then before surgery & am trying to take that as a good sign. I am just tired of pain, & the other shoulder has me worried, I don't want to go through this again. Heck between both shoulders & the neck no wonder I have a headache (ha). This is more then I ever bargained for, but it does not matter it could not have been avoided. I will also be calling for my first PT appointment to, well you know misery loves company (ha). Are you driving yet? I have got to start, I have little but honestly I can't wait for everyone, just a short distance that is all I can handle, I wonder why driving bothers me so much, it always has.
Don't think for a minute I am not taking you advice I could kick myself for not asking about the RSD & for that matter I really wanted to ask how much the arthritis is interferring. I think he would have just said the same, to early to tell. after Pt I should know abit more & I will be asking no matter what. Heck so much for relying on MRI's, based on mine there would have only had to be very little surgical work done, you just never know do you? I am glad we wwent through this together, I realize we did not have the exact surgery but it is nice to have someone who understands.
I honestly think people are alittle disbelieving when they hear how long this can take to heal. My husband is even surprised. I got so angry with him I told him if he had any doudts call the surgeon himself I was tired of being pushed & repeating myself. I never ever thought it would be like this. I am still taking 31/2 to 41/2 percs. aday. I guess if I slept in or did not do anything at all I could cut back but that is not realistic for me. The more hrs I am up in a day the more I need, makes sense, I hope this anti inflammatory helps, are you on anything for inflammation, I can't remember what you take. Looking forward to hearing from you, Sammy
well,at least you have been given a good reason by your ortho for the pain. yep,this particular surgery,as i am also finding out,even from my PM the other day IS just a very painful recovery/surgery. my orthos PA told me this IS the most painful surgical thing they do or one of the tops in the pain dept even more than compared to total hip and knee replacement.that one kind of shocked me since i watched my dad suffer thru two total knee replacements. he was a hurtin unit there for awhile.
i didn't get the chance to call for my first PT appt yesterday like i planned. our NEW puppy(hubbys great idea there) needed things and the stupid day went by too flippin fast. but i am going to today. i too am very glad that we have each other to at least compare notes with. i unfortunetly cannot take anything in the NSAID dept at all since the aspirin thing is an issue with it. i have heard good things about relafen tho.good anti inflammatory. just an FYI tho,if this stuff does bother your stomch in any way,this stuff just has that potential too like any other NSAID,there IS a particular med called cytotec? this med was actually made for people who have to be on some level of NSAID therepy. it helps reduce the stomach problems(my stomach just burns like heck with most NSAIDS) it also prevents the formation of ulcers. you just take the cytotec with every dose of the NSAID. this worked really well for me back when i was living on aleeve for two years with my herniated disc. it IS an Rx type med tho so you would have to speak with your doc. but it really helped me tons.
you know,you mentioned having a bad cough or cold happening too? this actually happened to me right,and i mean RIGHT after my c spine fusion surgery? it just exascerbated the living hell out of everything in my neck and upper back. given where alot of your pain is happening,in the rib cage area and the shoulder,coughing would most defintiely make things worse. just too much really 'hard" sudden jolting type of movements in those key areas,you know what i mean? when you have to cough,try holding a pillow up against your chest,it will help some. thats what i did. it seems to kind of absorb some of that movement in a wierd way? just a suggestion. i do hope that it is at least going away now for you.
i just wanted to pass along a really good suggestion to ya about the next ortho visit or any real doc visit where you really have some important questions that you don;t want to forget? i DO tend to also have that problem so i write everything down that i want to actually ask and keep it in this little medical info folder thingy that has all my latest medical crap and current or latest test type results and other crap in it that i just always bring with me to every doc/specialist appt. believe me,it has helped tons in just getting my needs met and all the right questions asked. i have so may different medical issues going on all the time that this folder just has to be with me. some docs want test results or some other thing from a different doc,so i always have that folder with me. it really does help sammy.
i had to start doing the folder thing when my son went into liver failure back in 99 and then the transplant in 2000. his labs were crucial to always have with us when we had to run to another ER or specialist visit. this really helped me to stay on top of everything he needed and all the different docs we had to take him too. so it was great practice when things hit the fan for me too. somebody always needs something that i cannot remember. or just all my MRIs/reports. all in there. keep a piece of paper and a pen in a handy spot like on the kitchen counter or something,and when you think of a really great question,just go immediately(if you dont and you are anything like me and you wait,the good question is gone in a heartbeat)and write it down. then just make sure to not forget(did that too) to bring it with you to whatever appt you are going to. it really helps tons. i seem to be getting much worse in the 'remebering' dept,lol. then you have all the good question right in front of you at that doc appt and ask away. you just do need to know whats up regarding the sweating thing and the possible sympathetic angle.
if you start your PT before me,let me know just what they are having you do,K? i was told and what is actually listed on my PT sheet is just 'pullys and 'cane'(don't have a clue there) therepy. what does yours say? i really am wondering just what the heck the 'cane" therepy actually is? just keep me posted hon. hope things start improving more for you very soon. just a hangin in there,again. take care sammy,marcia
__________________
3-22-01,herniated C-6-7
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, I will be calling today for my pt appointment. I have been squeezing a couple hrs. of work in on the side. The people I help really need me, I am just trying hard not to over do it. I will tell you my other shoulder is really increasing in the pain department. That scapula is hurting pretty bad. yours is bothering you to? Can't win huh!
I am really paying attention to the sweating thing, it will definantly be brought up. It is to strange, think about it how many things can cause that? Some days it ok others that hand will be soaked. Usaully it is more in the mornings but it can occur at anytime through out the day. I did tell the sugeon if I do to much of anything the arm will hurt all the way to the elbow, my elbow feels like I whacked it on something & the whole arm will just ache. It has been raining here & boy is that causing me to ache, I no longer doudt how the weather can play a role in how you feel.
As for the pt order there is a section marked onder Modalties with a list of procedures, I am glad it one of those listed is light therapy, light being the key word. There is a catagory for shoulder on the ortho order but he does not have that checked off.
I was thrilled to hear he does not believe in running PT in the ground, he has a good point for this type of surgery we already had the use of the chair, so 4wks. they should be able to show you a good pt program to use at home. I will not allow it to cause me added pain like before. I believe pt is needed after surgery but not to the point is causes a whole lot of additional pain.
I know the surgery has helped because I do have more range of motion that comes easier for me, it is painful but before there were days I just could not lift that arm without wanting to scream. The surgeon just said there was so much pain & problems coming in to this he does not know if I will be left with some of it at the end.
I have got to get around to asking how much the arthritis is going to interfer. That does have me concerned. I do keep a folder, I was just kind of thrown through a loop that last visit, between the nurse bringing up that it could be a year & the surgeon bringing up the cp that can be still there after recovery.
I am going to try the relafen, I looked it up abit & it is used alot for arthritis. I want to ask the pharmacy where it stands as far as safety compared to something like celebrex. I have taken celebrex I couple times & it did nothing at all. I really hope this works.
I am really sore between the two shoulders acting up. I am hoping if it works well I can cut back on the perc.
I am sick of not really driving. Girl I have not had my haircut in months. It all is getting to me. I will let you know about the PT. By the way the hospital kept my MRI's & I have to track them down, the doctors office did not know where they were, that has me seeing red, who do you think should be responsable for them?
Talk to you soon, Sammy
the doc who actually ordered the MRI really should have the most info. this is just how it goes. if they don't actually have a copy of your MRI i would really wonder like what the he**? that WOULD be very odd. the ortho would have needed that copy in order to see what needed to be done during your suregry,you know what i mean? it would have been rather crucial to them? but specialists go more by what THEY see in your hard films rather than just relying on a rads impression,but he still should have a copy.
just call the place where you had the MRI done,or if this was originally ordered by your primary,go thru him. it wouldn't hurt sammy to obain ALL of your medical records from your primary and this ortho too just to have for YOUR own files. i do this with all my records a couple of times a year depending. also get all your hospital stay records including the orthos op notes. it really is interesting to read thru what took place during your surgery. i was actually like half awake during mine(this WAS intended),and i KNOW i remeber waking up during it and actually feeling at least some level of real pain in my upper arm at some point. i just woke up suddenly from my groggy state of deep sleep and said owe owe owe,and someone asked me,'wheres the 'owe' marcia?' i just remember saying,'my upper arm' and boom,i was back out like a light. very strange. so i am very interested in obtaining my op notes from this particular surgery.
i really just cannot believe the overall amount of heavy sweating you have been having in that hand sammy,really.it is not a "normal' thing to have,espescially in only one hand. that would indicate that something IS affecting your SNS on that side in some way,you know what i mean?
the elbow issue may be what i was also dealing with since your ulnar nerve actually runs thru that little crease in your elbow? the dang material from the sling was actually somehow pushing into that direct spot,i was having alot of pain from the elbow to the last two fingers,and some tingling off and on. when i went back a week post op and mentioned this to my orthos PA,she went and got this little cushioned type of covering thing with pads in it that just went over my arm and onto my elbow? it just went over the elbow area slightly above and below it too(very cushy)? it did help and things got a bit better. but i still am having some issues. it could be some level of impingement hon or compression that just has not "relieved itself"? this is something you need to note and ask about if it is still there when you see the ortho. use that piece of paper i told you to put out??? hmm? i do think my PT is actually written for about a month or so too. i would have to double check. i too do not want to have to keep asking someone to drive me to it,since this is way out of my driving range ability. i have about a ten to fifteen min window before my legs will start going a bit crazy becasue of the non stop motor signal that gets sent like every other second since 03? this is the major cause of my spasticity in my legs. my absolute driving range limit is no longer than fifteen min or things start disapating all on their own. it can get pretty ugly sometimes so i don't risk it. i have to just get up like every fifteen min all day long if i am not up,and walk off and massage that crap out of my legs. this really does make life suck sometimes but i am just used to it now.
haircut?? want to compare bangs??lol. i look like a shaggy monster here.and i DID get a haircut right before since i knew i was not going to be able to actually 'do' anything but hopefully get a wash. she didn't cut as much off as i wanted so its all in my eyes again.i just hate that,it makes me crazy. cannot pull it back either since i can't get my arm back up and the strength isn't there between the two hands either. i also had this particular problem right after my spinal cord surgery while in rehab mostly. no intrinsic muscles were left in my left hand,the fine motor was hit really bad,which has made this rotator surgery really really ugly for me. i just "can't" do certain movements with my lame left either. thats been a bit** to have to deal with.
well i gotta get moving hon. just keep track of any questions and WRITE them down right away. also,obtain all records from your ortho(these may reveal his thoughts about what may also be generating your ongoing pain so they are very important),your primary(if he or she was treating this at all pre op) and the hosp too. specifically ask for the op notes from the surgery too. this is what i am in the process of too. take care hon,til next time,Marcia
Marcia--Hi--
Just checking in on my "board Dr."....I'm exhausted from reading this post !! (LOL)...I am sorry you are still going through so much---you and Sammy have had your share of pain that's for sure. I just wanted to say "HI", and that you are in my thoughts and prayers.....Please stay positive, and strong....there will be an end to this misery......and baseball season is right around the corner !!.......I haven't posted much lately, but do think of you, and wish you all the best..
Doug
Marcia, boy I have to say you have got to be one strong women, good for you! You have really been through alot & still going through it. I have alot to learn about having a better attitude, because latetly I am abit on the moody or cranky side. I really find myself almost jealous of the fact that my husband & family can just get up & go, you know enjoy & socialize. I am just tired of it all, I am paying for being super women, trying to still keep up with everything & had to go back & work a few hrs a week. I don't know what is wrong with me, I just feel angry you know. My family just does not understand how darn hard this recovery is. To them they think that it has been long enough, I threatened to drag my husband to the surgeon & let him explain it to him like a preschooler, I just think they want the old me back & in no way is that possable right now. I keep trying to do alittle more & there for I think they expect it. I am ready to explode at times. I just was the kind of person who did everything for everyone & when it goes the complete opposite people have a hard time with that. you know?
We took my MRI films with me for the surgery & they never gave them back to my husband or me. Really makes me mad, like I could think about that after surgery. My husband thinks it is his fault but that is the staffs job. I will contact the hospital soon & ask what happened to, if anything I will call the place I had the MRI done, I better not have to pay for another copy or I will raise you know what with the hospital.
you are on the ball with the medical records, & sounds like you have an excellant surgeon. My last visit my surgeon was rushed & I don't like that. I will indeed be asking some questions next visit, I feel after PT that would be the perfect time, Pt should reveal alot, I am hoping. Getting some muscle spasms lately & I really hate that, right in the chest wall.
Heres to hoping my mood improves, I think I am going to make an appointment get my hair done & try to pamper myself, get something done where I don't have to use my arms alot. Sorry my friend you got all my venting thrown at you.
Thanks, as always I sure would feel alittle lost with out you, Sammy
i completely totally understand the "family' crap. people have never actually gotten the depth or level of what just occured with my spinal cord surgery,espescially my clueless sister who has never ever had anything "bad' happen to her or her kid( the things that happened to me and my son were actually mostly a genetic luck of the draw,dang lucky witch). that really is what makes the difference in understanding someone elses situation,having that simple perspective. i too am hoping to find out just what i actually have to deal with once i get thru PT. right now,this surgery and that godawful sling have just exascerbated the living heck out of everything i already had that was a mess and also created some brand new crap to deal with too. god this has been one ugly nasty surgery/recovery.
we will have to compare the notes on the PT thing. hopefully we will both finally get the relief we need. i am hopeful so that helps.
hey hitman hows it going? thanks for the words. sorry i havent been able to get down to the spinal boards here lately,i keep running out of gas by the time i hit the pain boards. how are things? any better,any real answers yet? post me down on the spinal boards hon,i really want to know how things are going and if ANYTHING has actually been found out or confirmed in you yet,K?
later guys,hang in there sammy. Marcia
__________________
3-22-01,herniated C-6-7
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, I will be calling to get into pt this morning. Don't know why I put it off. I am really sore. Felt pretty good after getting through the morning the other day so I know once again I over did it. I cant seem to find my limits. Yesturday (easter) felt like the week after surgery. Muscle spasms & pain all teh wat down teh arm. I'm pretty mad at myself. Dang this feels like it just goes on & on. Still hurts if I roll at night so waking up every night. In fact the whole darn side hurts all the way to the hip & up towards the neck, really strange I have been getting this tingling down the left side of my back, directly down from the scapula, not sure if its from trying to use that side alittle more or what, just strange, ya know?
I am pretty much giving up on other people getting it. No one seems to understand why it is such a long recovery, I am still shocked myself. When the surgeon said this is a long recovery he sure was not kidding. I hope I don't run into anyone needing this & they ask me how it was, because if I am honest it would probably scare the heck out of them.
I get so sore I can barely lift my arm & that does get discouraging. The other side is sore as heck with both of them aching & sore it is bothering my neck. I am going to forced into taking a couple days of doing nothing sooner or later.
I am worried abit. The surgeon said I came in with so much that it will be a wait & see. I know I will left with some type of discomfort due to the athritits.
I never worried about problems with the pain meds but I am beginning to wonder about that to. I managed to go the other day a little longer between doses but I started to feel shaky, really bad. Along with that I am waking up with abdominal pains every single morning, man they hurt. I am taking the metamuccell & managing to go so I can't figure out why all the pain? This is all getting to me my friend.
Are you finding all this as frustrating as I am? I would love a day with no pain & a full nights sleep! Let me know how your doing. Not that I want to hear your suffering but I sure am glad I am not alone here, every now & then I start to question is this normal.
Sammy
how do you normally sleep sam? you really must bop around like my hubby all night long too? one nice handy little hint i got from my PMs NP the other day when i just had my regular follow up for my meds is the pillow splint thing? never even thought about that. we used the pillow splints(back when i had a life and was happy?) on patients all the time for arm and foot injuries. when she just mentioned this to me i thought DUH,why didn;t I think of that. you just take a pillow and kind of roll it around your arm lengthwise and then have old hubby just duct tape a couple spots so it can just slide on and off? use this at night,just slide your arm in and possiblely even have your hubby tape it down onto your jammies or something? this may keep you from doing what you are doing to it during the night. i have been doing this since she told me about it since the first night i went without that sling,i woke up in ALOT of real joint pain. never had that problem before with the splint. but this actually helps alot in just keeping it slightly raised and in place across the front of my lap.
i just think,based on your nightly escapades you have mentioned going on here that you really do need to try and keep that arm in its place at night. this really sounds like the biggest aggrevator for what you have been explaining,it all happenes during the night kind of thing?
i know we both had that incredibly painful problem pre op with us waking up and somehow our arms would be over our heads in like one of the most painful posistions? i still don't get that. why would a person place their body part in a posistion during sleep that simply casues alot of pain??? still working on that one,lol. but from your posts,it really sounds like you are placing your arm and your body in some really strange posistions during sleep that they simply are not ready for yet,ya know what i mean? this WOULD affect it the whole next day too. just cause alot of extra inflammation for you to have to deal with. i always just have to lie flat on my back when i sleep becasue of the leg spasticity issue.if my legs are not right in front and elevated to a certain degree all night,man do they start getting nasty and way too 'happy'. maybe hubby can just duct tape you to the flippin bed?? you just really need to stop the night time sideshow sweetie. i just really think this is affecting you alot more in alot of ways than you may think it is,ya know?
if there was just some way you could actually make yourself "not' move around so much for just a couple nights then see how things go the next days,i really do think you would feel a big difference in how the pain is overall. there just has to be some way that you can kind of 'stabilize" yourself somehow. seriously sammy,from what you have been posting since even before your surgery,your night time movements have really been an issue for you and your overall pain too.
i am wondering about trying valium or something before bed just to see if it may help you some? or even trying the sleep aids like lunesta or even ambien or something? just to see how this may work for you. trying to actually sleep with my hubby in the very same bed must be exactly what your hubby goes thru with you too,lol. he flips and flops and practically pushes me out of the freaking bed all night long. VERY restless sleeper there. i have been sleeping in another room on a really comfy twin foldaway since i came home. not ready to be assaulted in my sleep yet ya know?just some thoughts there for ya hon.
i too for some reason haven't called yet for my appt for PT. have had so many other crappy things i am also dealing with here. plus i have to figure out whether or not i want to go with that wonderful guy who was doing my myo and the cranio and wait like forever to see him(he just books up very fast),or just go with another PT person and get in alot more often? big choice here. but i HAVE to set this up today no matter what. i just need to get my freaking arm above my head again ya know? i am getting alot of mobility and strength back but need soo much more yet. and then there IS the pain whenver i just overdo too much. it doesn't take too much to trigger that. and those lovely horrid TPs that are radiating out from like everywhere up there. thats always been an issue tho,just exascerbated like crazy now. biofreeze and lido patches,love them!
well i hope you can figure out a 'sounder' way to sleep hon,i really think if you can,alot of the overall inflammatory type pain would go down for you. doing what you do every night,your surgical area just really never gets a chance to "rest',you know what i mean?as usual,please keep me posted hon,Marcia
Mar, funny you should mention the valium at bedtime, because that is exactly what I am going to try tonight. I am fed up, starting to feel exhausted. I slept in the bed with my husband over the weekend (my daughter was home for the weekend, so had to give her bed back) sure enough I woke him up & he pretty much was begging me to get back to my own side & try to lay still (ha). I am rolling on it to much I think, I know I move all over the place & of course it is waking me up because it becomes painful.
I know exactly what you mean, you do alittle bit to much & boom back in pain, in fact I have had to put the darn sling back on more the last couple days, I was pretty much able to go without it most of the time. I swear I have tried everything, I know I have over did it abit & I am postive that the fact that I can't seem be still in my sleep is aggravating it.
I am really having problems lately. I will have to keep trying these things & hope something works because this pain is just climbing back up. I am trying to learn how to do things alittle different. I swear I cannot believe how long & painful this whole thing is, I have been in a real nasty mood these last couple days.
I am starting PT the first week in april, trying a place recommended to me, the last therapist I just did not have any luck with & although I believe he tried & pointed out alot of things he noticed it took most of my time just to understand what he was saying. He also really kept lecturing me about the meds & I don't need that kind of pressure right know. I am struggling as it is.
All of this is starting to take its toll on me & I am forcing myself to take the next couple days & try to take it easy. I really am hoping PT will help me out here. On the second dose of percocet along with a relafen & still in pain, just a deep aching pain along with some a nice dose of muscle spasms. I would love to know just how much the weather effcts all this, it has been crazy here. I am grabbing a book & a hot pack & I don't care if my rearend grows roots, that is where I am staying for the day & maybe tommorrow to. Get that pt appointment made my friend. Talk to you soon. Sammy
Feelbad and Sammy, you two are scaring me to death concerning this surgery. Feelbad, you made some really good points in your post to me that I appreciate, but I continue to be shocked at the recovery problems and length or time. I had been told that knee replacement is the worst but as mentioned in this post it sounds as if Rotator cuff is worse.
One thing interesting is reading your "hints" (such as the pillow for sleeping). These are good things to know for people who MAY have to go through this.
Hope for a QUICK and less painful recovery for both of you. You have both been through so much.
sorry to freak you out cody,really. this is just a longer recovery type surgery,which i mentioned before,is mostly dependant upon the type and in depth part of what YOUR possible surgery will be. my BIL really recovered much more quickly than i am. i do have pain still but its not to where i still need the extra percocet for. sammy on the other hand,as you can see by her posts,simply is aggrevating her surgical area when she sleeps(personally i think this is really where alot of her inflammation is coming from). i pretty much stay put in bed once i have all my pillows in the right places. it is all very highly individual,ya know?
honestly,the first couple days are the worst,then things start to get better. the day after my surgery my pain was still kind of up there until i actually started to do some PT movements,really. it hurt at first,but it really also helped shortly after when i felt some of the intensity start to go down a bit later in the day. personally i do think men seem to recover a bit more quickly from this particular type of surgery only becasue of the increased muscle they have when compared to the average woman. i was just really shocked that my BIL went back to work like within four or five weeks,and here i am.
hopefully you wont need too much repair cody. alot depends upon just what needs to be done. PT really does help too. when i started doing my excercises at home,it really did help with the pain and mobility. i still,and sammy too, have to do the more hands on type PT at some PT place. i really don;t think my BIL even had to go that route. but just doing those excercises the way they tell you really helps to recover much more quickly and to lessen pain. i really do think you will do just fine cody. just wait and see what your MRI says and take it from there hon. just don't get too ahead of yourself,K? surgery,any surgery just has pain and a recovery period to it. your orthosurgeon will help alot with the pain. just get that MRI done and see what you are dealing with,it may not even be as bad as you may think. FB
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3-22-01,herniated C-6-7
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.
Cody, sorry, I will tell you what the surgeon told my husband & I , every single surgery is different with every single person, for example my husbands co worker had the surgery, rotator cuff/slight decompression, & was back to work 2-3 wks, some discomfort but did pretty well. Now my husband was comparing me to her, wrong thing to do, I did not have the rotater cuff, but alot of decompression, there are alot of factors involved. Marcia has other things going on as do I. I had the combination of three with the shoulder, bursitis/tendonitis/arthritis, & the doctors took forever finding it because there are problems in the cerivcal area to. I honestly believe & I think the surgeon does also that it was let go for to long. That is going to effect the recovery.
So just don't let it go & keep in mind that although this is known to be a long recovery surgery everyone is different.
Marcia woke up this moring with this bulge(felt like a small ball) under the right shoulder blade, wierd as all heck, I could feel it move as I moved my arm, I am really getting concerned about having both shoulders hurting. Could not lift either one this morning. I am feeling old. I hope pt can help me kind of preserve the other shoulder. I have never experianced anything like that. I am guessing it was perhaps muscles that maybe were bunched up back there. I took the day & yesturday & relaxed, I am going to have to keep experimenting with the sleeping thing. Heck I may indeed have to have my husband tie me up, years ago he would have enjoyed that (ha) not so much now. May have to try the pillow wrap suggestion. Sammy
i am thinking its just a trigger point sammy,espescially if it is actually "under" your shoulder blade(and those ARE the worst). my upper back,neck and under BOTH shoulder blades are just loaded with tons of wadded up TPs right now. i really think that is MY biggest issue right now. most of my actual "surgical" pain appears to be mostly in the upper arm area kind of on the inside but right at the crease of the armpit? owie spot there,really sore.
my left arm too is just nasty. we have soo overused that arm hon with the other being out of commission for so long. i am missing eight fine motor muscles within that hand as well just from the spinal cord damage so this has been REALLy difficult in just 'doing' anything there for while. that sucked,alot.i cannot even turn a doorknob in the normal way without having to turn like my whole body and the whole arm,thats what WE were dealing with while the right was "tied up'. too much loss in that hand ya know?
i too know i have to have some level of real damage in that left rotator since my right was so bad,it would be hard to have avoided it since both arms usually do the most lifting together? my years onthe FD really just trashed my body to pieces. i am only 5'2" and was about 110? and was lifting weights that were more than i weighed. that will 'do' things to your spine and other body parts as well. you cannot even imagine some of the posistions my little body was shoved ito and the things i had to do in some cases,only with one arm or hand,it just all took its toll on me and i am paying dearly for it,but i LOVED the job and wouldn't have traded it for anything. losing that was by far my most devistating loss i went thru when my SCI just wouldn't allow me to get back into shape and go back there. some really great memories tho.
right now,i just wnat normal back,as much as that can be right now for me. i did finally make my first and second PT appts. i think my first is either next mon or tues? i am also going back to my great wonderful PT person who was doing the myofascial and cranio before my shoulder crap went nuts(only doing the post op shoulder PT for now tho). doing the myofascial release sammy,when you have gotten a bit better,REALLY would help TONS with the TP crap and all that added tightness up there. i could not believe just how much help that therepy was for my huge TP issues. this seriously was the only real therepy that ever actually helped with my upper back and neck crap,the ONLY. for alot of reasons,this IS my worst area since 03. this particular surgery and that dang sling just really created a whole new type of mess for me now. but DO seriously look into the myofascial when you can get cleared enough for it,it would really help you alot sammy. trust me,if this actually helped with what i have up there,it would help you at least some.
we will have to compare notes with the PT. should be really fun,huh? i would ask your hubby at this point to just do the pillow thing for you and also somehow see if you can attach it to either you or the flippin bed( can you say duct tape?),just to see how you feel after not moving it around all night. i just think its not getting enough real rest at night with your boppin around. your just kind of 'fueling the fire" so to speak?take care hon and as usual,keep me posted.Marcia
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3-22-01,herniated C-6-7
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, To strange I am 5'2 (ok I squeeze an extra 1/2 inch in) & 107. I lifted like crazy with my job, lifted people who far out weighed me for years. What the heck were we thinking? People would ask me how do you do it? Now I wish I would have used my head & not my body. By the way my brother in law was an EMT & a neighbor of one of my clients is a firefighter, he tells some interesting stories, like chasing some naked guy down the middle of a main rd.
Have you been able to decrease your pain meds at all?
I am back to wearing the sling more, it can really bother my neck, infact ended up with a head ache last night coming from the neck. Since I have some disc problems & DDD I am sure the sling does not help matters. I thought I was on the road to saying so long to that sucker. It is so huge it really gets on my nerves. I will tell you I do have more pain in the back area since the surgery. I am beginning to wonder if our size (sounds stupid) age & gender have anything to do with the recovery, I do think women have more issues with bone lose. I am glad others are chiming in on the shoulder issues. I know start therapy on april 2, I swear this place wants you to make every appointment for the whole month in advance. Kind of hard to know what you will be doing for an entire month. Are you going 2 or 3 times a week Or don't you know yet? It will be interesting to see what is done between the two of us, everytime I have went for PT it has aggravated my neck & triggered some major headaches, even when they worked on the shoulder, so I am keeping my fingers crossed.
I am with you my friend, I to want back to normal, once I figure out what that is, it is a shame to love your job & not be able to continue, that has got to be tough. Good luck with therapy. Sammy
i have actually been off the percs now for about two weks or so? was off completely til i stopped that stupid chair and my joint began to go crazy,go figure. i actually had MORE lastinf ongoing pin in that joint than i did while using that stupid chair,at least that was just mostly while i sat in it. starnge, so i had been off the percs before that but did have to go back on for a bit. i still am having some pretty good pain from time to time but have been just trying to manage it with bio,lido and my regular daily meds. the problem with my "regular' meds is that after four years on pretty much the same exact dose,things are not as good as they should be anymore. before this surgery,i was already talking to my PM about possible changes in my meds since they were not hitting my pain like they used to. i do think its mostly tolerance and some increases in my overall pain too.
i have actually been getting "base of the skull" type headaches for quite some time now. i am just assuming its all muscle related in some way. i do have fioricet to take when things really hit the fan and my bio or the lido ointment(up in the hairline area) dont seem to be working. but i have been getting these for well over a year and a half now. thought it was all just one big pain mess all from the same crap inside my "triangle from hell" but when i tried the fioricet for my post angio headaches one time,wow i found out that the(base of skull into my lower back of head) headaches were not 'just' a part of the triangle crap,that they responded to the fioricet,so my primary ahs been Rxing it for just the headaches now. i do get migranes too ever since the second i hit puberty back at age thirteen? been around a very long time,but i found something back at age 21 that was the very first migrane abortive ever invented that really gave me my life back. amazing really.
what you are describing sammy just really sounds like ALOT of muscular crap that is being created by the pain and the inflammation you have going on. believe me hon.this IS my normal normal pain crap that i have been dealing with since that scalpel cut into my muscles and spinal cord back in 2003. this is what i have been seeing my PM for,that and of course the RSD and the central pain syndrome. but my c spine is just such a mess and the muscle crap too. this just sounds alot like what my normal crap has been. our muscles are soo screwed up right now hon. just from that dang sling and the fact we have had our arms just scrunched up so high and tight for so long. this is what i am hoping my PT will help with right now. just being able to fully extend up and around again will help alot. my first PT got moved from this wed to thurs since my therepist has some stupid meeting that suddenly came up. they called me yesterday to see if i could change it. what can ya do.
are you still doing your nightime romps or were you able to figure out something to keep that arm from flipping around along with you,lol? DUCT TAPE. that whole arm just really NEEDS some time to rest hon. it would appear from what you have mentioned here that that just really never gets a chance to occur ya know? that in and of itself really would help to bring down that constant inflammation you have going on all the time. it couldn't hurt,thats for sure.
well i gotta mosey along here. PT really should be interesting. please let me know how yours goes since i do believe yours is before mine? sound familiar,lol? hang in there sammy,marcia
__________________
3-22-01,herniated C-6-7
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.
