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Old 05-21-2006, 08:57 AM   #1
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Those days when it's closer to give up than fight

Hi, If you are on these boards, and especially here, you are looking to feel better for yourself or maybe the one you love. I am having one of those days like the title says, It is closer to give up than fight. I was injured in a fall down a stairs at work with a armload of tile. I broke off some spurs when I landed on my hind end, and because the MRI showed DDD, I have been unable to get comp to do much, but fight in court. I am at 19 months, and it feels like the day after the fall. I have had no treatment beside PT, which was done for 6 months, and only made things worse. The rest of the time has been nothing but the pain meds, and searching for ways to get fixed. I ran out of assets within the first 6 months, and have been relying on family to support me and my son, oh, and Human Services from the county, which have been very good to me. Unfortunately with this and many other problems there is no middle ground, either you progress or regress. Staying in the middle doesn't really happen for to long. About two months ago, I started having a little more swelling in my left leg, and within two weeks I was in Emergency with cellulitis and a very swollen leg and foot. The antibiotics cleared the infection but not the swelling. Now, I have Lymphedema. They say it's rare, but I'm not so sure. The Vascular surgeon I see says there is no cure, only comfort. It is painful, my skin is bright red and feels like fresh sunburn. I hurts right to the bone, and my foot is huge! Finally I have a decent size to my knee, but only one! Well, as you can guess, there is no pain meds for this, I am maxed out on my low back, so, this I just have to deal with. It has cut down my time outside by 80%. I am not even comfortable just sitting. I have to shorten this up, thanks for reading. Has anyone else here had Lymphedema? Is there any good ways to take some of the pain away? LD

 
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Old 05-21-2006, 03:24 PM   #2
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Re: Those days when it's closer to give up than fight

Hi LD, I know what you are feeling, believe me I know. When I was coming off of Methadone you said some kind words which touched me deeply and gave me hope. I want to thank you for that.

When life becomes more than I can bare I go to my book, The Prophet by Kahlil Gibran. He writes of pain, "Your pain is the breaking of the shell that encloses your understanding. Even as the stone of the fruit must break, that its heart may stand in the sun, so must you know pain....It is the bitter potion by which the physician within you heals your self. Therefore trust the physician..."

And of joy and sorrow he writes, "Your joy is your sorrow unmasked. When you are joyous, look deep into your heart and you shall find it is only that which has given you sorrow that is giving you joy....Together they come, and while one sits alone with you at your board, remember that the other is asleep upon your bed."

I wish you peace, LD. Sincerely, Amy

 
Old 05-21-2006, 07:09 PM   #3
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Re: Those days when it's closer to give up than fight

It has given me peace tonite, thank you Amy. LD

 
Old 05-22-2006, 06:10 AM   #4
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Re: Those days when it's closer to give up than fight

sorry for all you are having to deal with here,really.I just had to comment on that foot pain?have you done any research on RSD? I am thinking,in just what you have described here that this may be what is actually going on with you.everything you described as far as actual symptoms(the overwhelming excruciating'down to the bone' type of pain,color changes in the affected extremity,and the swelling)those all fit with this nasty condiditon.I have RSD in my R knee and it feels like this non stop pain a thon from hell.my knee and lower leg will get red from time to time but it is not a constant(this can be different for each case)some people will actually have their affected area turn anything from red to deep purple in color.the hypersensitivity to even slight touch is also a symptom.i have the most nasty very deep bone ache that feels like someone hit it with a sledgehammer or something.it is a constant deep migrane like pain that is just in the head of the femur.and the BURNING is horrid and non stop too and is probably the biggest symptom of RSD and also central pain syndrome that i also have in my L arm.i really DO think this is a very likely possibility for you to have aquired.

just exactly what was injured in that fall?what does your MRI report actually state?somewhere in your spinal column,you very well could have injured some part of the sympathetic chain that actually runs down along both sides of the outer sides of the vertebrae,this would be the trigger for the RSD to have started.my SNS was damaged way up in the lower c spine from a spinal cord surgery.

i really would just do some googling on RSD and compare your symptoms.and see what you think.i would also very highly reccomend that you file for disability.RSD is now much more recognized by them as a permanent disability depending on the actual symptoms and how it affects your daily living and ability to even work.You should also bring this up to your vascular surgeon,I am kind of suprised that he has not mentioned this condition to you,as I am pretty sure that this type of surgeon would definitely be very much aware of this possibly being your biggest issue here.this condition also involves a certan level of vasomotor malfunction,I am wondering just exactly why you were referred to him in the first place??I am also wondering if when he told you "there is no cure,only comfort"if he has already Dxed you with this and just has not actually told you this yet/you definitely need to ask him about it.

I just really do think this is what may be going on with you,you described so many of the same symptoms I have,to a "T".I have a ton of problems in my R leg nowalong with just the RSD actually being there.my swelling is constant and has never ever completely gone away in over the two and a half years since the sydrome started.its just always there now.

The absolute best type of meds for this particular pain are the anti siezure meds.i had been on neurontin and was wayyy before the damage happened to my spinal cord just from the pain of my c spine problems.but when I started at my pain clinic,i was switched to gabitril which worked much better but makes me sooo tired that I can only take one dose in the morning and have totake the other three pills before bed.it makes for good sleep tho.i will be starting lyrica this next month as I really have to have something that I can take thru out the day.i recently had to have two surgeries done on the RSD knee for many other problems and since then the burning has really gotten way out of control now.it got soo bad that I have started taking the gabitril during the day now.lots of naps with this crap.but it helps with the burning issue.oxycontin seems to do nothing for the actual burning but it does appear to have some effect on the deep bone ache stuff.a also use the TENS unit which really really helps tons with the flares.the TENS was actually the first thing I tried where I could really actually feel a reduction in my pain flares.just something you may want to try.
getting to a good pain management doc would really help you alot in giving you the many different options you can get only thru a good pain clinic.mine was truely a lifesaver.

to really get a good idea on whether this pain/condition is really stemming from some possible form of sympathetic nervous system damage,talk with your surgeon about referring you for a sympathetic nerve block.if you get any sort of actual relief from this,then it is most likely being generated by sns damage.tho this test is not foolproof,it is just one way of trying to see if this is indeed possible RSD.The sympathetic nerve blocks also can really help with the overall pain and in some cases can actually put it into kind of aremission status,at least for a while.

the big thing here is to get this aggressivly treated with things like the symp blocks and desensitization therepy,as soon as possible. the earlier treatment is started with RSD,the better response you will get,as far as being able to possibly get that pain level down and possible remission.tho this will only actually occur with only some cases.my particular one was not the best as far as response.

but seriously,start doing some in depth research on RSD which is also called CRPS(complex regional pain syndrome),an see what you think.and most definitely speak with that surgeon about this soon.

i would also start the application process for disability and ssi.whether or not you decide to actually do this is pretty much up to what you still feel you are able to do and not do and your actual ability to still even work.the process can sometimes be kind of lengthy and you will need to gather up all of your medical records and any records from anyone who has ever layed a hand on you or anyplace that you have been sent for testing.ask your surgeon just what he feels about the disability thing.if he actually does think that what you have is really RSD,most likely he will be one hundred percent behind you on this as the prognosis for most RSD patients is not real good.unfortunetly,this can spread to other areas too.

hopefully this may be something less dramatic,but quite honestly from what you have actually described as far as symptoms,I really do think this may indeed be what you have going on.and I AM really sorry about that and DO know how you feel right now.it really does suck.

also speak with your surgeon about referring you to a pain clinic.they can do those blocks right there at their clinic.i really do think a good pain clinic would really be your best bet for being able to actually get the best treatments for pain control.like i said,mine was truely a lifesaver for me.

sorry this was sooo incredibly long but I really wanted to explain just what you may be dealing with here.good luck and please keep me posted on how you are doing with all of your issues.start doing that research soon.there is a really good RSD board on these healthboards,its just a scroll on down below this one.you should check it out,there are some really wonderful caring people there who are living with this too and would be able to answer your questions.Hang in there.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.

 
Old 05-22-2006, 03:16 PM   #5
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Re: Those days when it's closer to give up than fight

I have RSD also.

When I read about the pain, infammation, burning, redness.... bells were going off in my head -- this person has RSD!!!

I wonder if the vasucular doc maybe does not KNOW what RSD is???

If it sounds like you, go on over to the RSD board here, and there are other RSD boards online too - you will learn so much from them.

Next step would be to get to a first rate pain management doctor as soon as you can. Make sure if your doc makes the appointment, or if you do that RSD is mentioned when making the appointment. IF they are worth going to - mentioning RSD usually takes a lot off the waiting time to get in.

Some people find physiatrists, or neurologists can be of help, but you'll want to also get to a physical or occupational therapist soon - but also make SURE they are very familiar with RSD. Many people with RSD travel a long way to see docs/therapists that know RSD. I went to a local occupational therapist when I was first diagnosed, and he said he had treated RSD. He pushed me to hard, and actually, I believe, made the RSD so agitated, it spread some. I now go almost 3 hours to one who has treated many many people.. I just go every once in a while and get a 6week to 2 month plan at a time.

Please check it out. I am not sure if I can give web sites here, so Try googling these

for grace RSD

H. Hooshmand, M.D. RSD

Robert G. Schwartz, M.D. Reflex Sympathetic Dystrophy Support Group Medical Director

I hope this is NOT what you have. But if it is, there are things you can try to make a difference.

 
Old 05-22-2006, 07:46 PM   #6
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Re: Those days when it's closer to give up than fight

If you are like me (over 3 Years) I will NEVER give work comp or any insurance company the satisfaction of giving in or up. That is one of the things that actually keeps me going and keeps my head and heart straight. If you give up, THEY WIN. Is that something you want? They will do just about anything they can to keep YOUR money........It's your's go after it. You deserve to live life to the fullest again. Do what ever it takes to do that.....good luck, keep the faith...

Last edited by cornburner; 05-22-2006 at 07:48 PM.

 
Old 05-23-2006, 12:35 AM   #7
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Re: Those days when it's closer to give up than fight

Wow. I have searched so many hours and have never run across this. I just came from the vascular surgeon yesterday, he was upset that the pain specialist cancelled the bloc he ordered. My pain therapist is good, but his ego is even better. He had chased me out of his place 6 months ago when a PA made an appt. to try the series of shots again. He swore there was no shots that would help, and refused to let me see his partner who is qualified in different ares of bloc, radiography etc. I just can't believe that the vascular surgeon not mention this, unless he was going to try to weed out a mental case. I told him yesterday that I must be mental! He just said to go to the pain guy and he would call there personally and set up the appt. The script he ordered was for a sympathetic nerve bloc!
I had no idea that anyone would write here with this. How I am amazed what prayer does sometimes.

Last edited by ld3340; 05-23-2006 at 12:38 AM.

 
Old 05-24-2006, 03:33 PM   #8
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Re: Those days when it's closer to give up than fight

I am surprised that a pain doc didn't think of RSD - they are the ones who usually treat it... he must be one of the ones who don't know about it.

The vascular guy may have the suspision that is what you have, but has not given you the name of it yet until seeing what happens after a block. When you read about RSD, it can be pretty darn scary. My doc has told me that many docs are VERY hesitant to diagnose you with RSD even if they know you have it. You might come right out and ask him.

I think I would find out how may blocks this pain doc has done too. If he uses a (spelling?) flouroscope to check for needle placement into the nerve. If it is indeed RSD you may need to find a pain doc that is more familiar with RSD for your treatment.
Good luck to you....

 
Old 05-24-2006, 04:35 PM   #9
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Re: Those days when it's closer to give up than fight

Thank you daylilyfan, Now... I woke up this morning with a rash. I havent dated since I fell a year ago, and nothing has changed with soaps or anything else. I just woke up and when I went to jump in the shower both my forearms and the sides of my thighs had a small very light rsd bumpy rash!!! I don't have any itching, but it looks odd, I havent had a rash in 20 years so it was a shocker. I called my vasc surgeon and he said since he prescribed nothing to get a hol of my GP. I called there and told them no fever or any extra pain so they said just watch it. I'm clueless!! I was wondering if this is another part of RSD? At least it don't hurt any worse! Oh I had a blood test a while ago that said I was positive for RA, I hadn't really told the doc's, but I have had a few times where I could hardly walk for a couple days at a time from my hips, I was off anyway so I figured it didn't make a difference to even note. Maybe the rash is from RA?

Last edited by ld3340; 05-24-2006 at 04:47 PM.

 
Old 05-25-2006, 06:26 AM   #10
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Re: Those days when it's closer to give up than fight

just an FYI to ya ld.if you google RSD and click on 'images' you will be really shocked to see just what bizarre skin weirdness can come along for the ride with this particular condition.I have had these really blue dots appear on my RSD knee from time to time.they are not bruise looking like things.they are perfectly round dots that are really a dull blue color.really really freaky.it is actually called "mottling'.getting skin rashes and color changes and swelling are all hallmark signs of RSD.they will just kind of come and go whenever they feel like it.but just try looking up those images.they really are bizarre pics.

just make sure that you are kind of writing down all of this new symptom type of crap like in a daily calender or day planner type thing?just the highlights are okay.this really helps you when you see your doc.this also helps me just to try and remember all of the last months bizarre crap when I see my other docs like my pain doc.this also will give you a better look later on as far as a timeline of events since this condition generally comes up in certain stages so its important to kind of have an idea of just when a particular symptom actually showed itself.Just some suggestions for you.hope nothing else decides to just Pop in on you.just know that this is in most cases,a normal event for us.good luck,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.

 
Old 05-28-2006, 01:30 PM   #11
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Re: Those days when it's closer to give up than fight

Hi and thank you, When the injury at work happened I was doing ok financially. I wasn't rich but I wasn't hungry either. I only lasted about 3 months after the fall, and when comp quit paying I was forct to get County help. Their clinics may have 7 doctors rotating, and you get who is available. I know everything is charted but there has been confusion on med, specialists appoitments and other things that lose importance in the hand off. I chose to leave, and find other help, and ended in the same type of set up!!! I feel better talking with the people here even more than before. I will do as you said, and go back and make a real timeline. I have time to do this so, I'm the one who would benefit. The rash has gone now, and I feel a little better. I am now scheduled for a sympathetic bloc on June 8th. In all, at two different pain places, I have had about 7 shops, and 2 gave me relief for a week or so, with the second one less time. I am wondering if this will interfere with any RSD I may have? This shot was ordered before I began to swell up large. I dropped my blow ups of my MRI to the hospital, it clearly shows a large fracture and broken off spur, which were never mentioned in the original reading, which caused an awful lot of greif for me! I am waiting for the results, they have been delayed for some reason, but I have full copies anyways. Hopefully they see the mistake and I can get comp back in the picture. So, do you think the broken pieces will interfere with RSD? I have looked and cannot find the answer. Thank you again for your help. LD

 
Old 05-29-2006, 06:39 AM   #12
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Re: Those days when it's closer to give up than fight

the RSD is on its own little tangent,or following its own course.The only real impact that those pieces would have would be in the pain dept.just where exactly was the piece located inside your body?this would most likely have to be removed at some pint as having it justa boppin around inside your body could end up causing you even more possible probl;ems.

you know,its probably a really GOOD thing that the swelling is going on when you actually will be getting that symp block.if there IS the possibility that you DO indeed have actual RSD,the block could concievably help reduce the swelling.you could also end up with some reduction in pain.whether or not what you have is actually will show itself with this block in a few ways.if you actually have any sort of actual changes when the block is given this would lead the docs to believe that your pain and other symptoms would be sympathetically generated,thus RSD.

i had this same block done on the sympathetic ganglion up in the neck just so my PM knew for sure that the stinging burning nasty crap I had in my L arm was infact being centrally generated.when he did the block,i got nothing,absolutely nothing in the way of any new signs or symptoms but most of all,the screaming pain was still there going full bore.so,no RSD for me on the upper part of my body,too bad things are not the same down in my lower leg and knee.

i am rather anxious about your block and what actually follows it.this will really help you out alot with getting disability and SSi if it is.and it does sound from what you have stated that you definitly could use the help alot.tho the RSD does suck,alot,there are many different meds and therepys out there these days to try and help you with the sometimes way too overwhelming type of pain this crap brings along for the ride.

hopefully the block will actually help with the pain and the swelling.if the first one actually does affect some area of your symptoms,the usual thing is to follow it up with a couple more.in some poeple,the repeated blocks can actually get this nightmare down to a much more tolerable level.there are quite a few folks on the RSD boards here who have these done regularly with some pretty good results.If you haven't popped into that RSD board on this site yet,you really should,there is alot of knowledge and info there about the ins and outs of this specific type of pain syndrome,and ways of treating the symptoms.i have found the TENS unit to really help me alot with just the deep bone ache part of the pain.once in a great while,if i am lucky,I can actually affect that burning a bit but not nearly as well as with that deep bone ache.the TENS really does help me alot with those godawful flares from the pits of he**.

please let us know how this all goes for you, K?hang in there LD.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.

 
Old 05-31-2006, 09:25 PM   #13
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Re: Those days when it's closer to give up than fight

Thank you Marcia, Made it through another weekend. My 3 Blonde daughters came over and the distraction great. I had seen the vascular surgeon last week, and I was supposed to be wearing the knee hose, but I didn't. I told him it just swelled up and over the hose and made my knee look like a grape fruit. He said it was physically impossible? He also said swelling didn't hurt? This weekend it swelled about 3 inches past my knee, and I had a lot of pain behind my knee. Is that a bad place to get it? Motion hurt and movement was really restricted. Well 2 appts. next week, none this week. The rash seemed to fade allready. And the depression has faded also. It always seems to happen on nice days when there is a lot to do and you can't do it. Thank you for the post Marcia, LD

 
Old 06-01-2006, 12:08 AM   #14
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Re: Those days when it's closer to give up than fight

Hi ID,

I'm not an RSD expert but I can certainly empathise w/your chronic pain. I have 4 bad cervical discs, recently had a dbl fusion w/hip bone surgery yada yada yada chronic migrain bla bla bla have tried every pain med & am still on the search etc...
This note is just to say that I am praying for you.
And I want to recommend a book to you as well....the book of Psalms & while you're in there check out my favorite verse in 2 Corinthians, it's chapter 4, verses 16-18. It talks about a promise we have if we know the greatest Physician of them all! I hope you'll talk with Him on those hard days...He wants to hear.
I know it's difficult, boy do I ever. But check out that favorite verse. When I read it...my perspective changes completely & I know I can make it thru!

Blessings to you, ID. And you do have my prayers.

Jackie H

 
Old 06-01-2006, 06:47 AM   #15
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Re: Those days when it's closer to give up than fight

I just have to ask,why are you seeing this particular type of surgeon and does he even know just what in the heck the human body is capable of actually doing??what a dork.i also cannot actually wear anything even the least bit constrictive on my R leg either.having to have two seperate surgeries on that RSD effected knee because of other problems along with the wonderful constricting ace bandage wraps up the full length of my leg practically made me want to take that leap off the bridge down the road here,WOW,it was really painful.I couldn't even wear that knee emobilizer either only because of the extreme hypersensitivity i have on the inside area of the knee,kinda at the side?I just cannot tolerate anything like any sort of actual brace or anything evenly slightly constricting around that knee at all anymore.kind of unfortunate as I also have another condition in this knee called Charcots syndrome where bracing really IS needed to prevent me from walking freaky and really causing some nasty trauma to the knee.this is caused by the partial desensitization that is being caused by the brown sequard syndrome combined with the spinal cord damage.what fun.i am just loaded with all kinds of new and exciting syndromes now,too many to even list these days.god life really sucks.

for your surgeon,a flippin surgeon to tell you that it is physically impossible for a body part to actually swell to that extreme is just plain stupid and totally wrong.this guy has obviously not ever seen an RSD patient or anyone else with major vascular problems that can result in unbelievable heights of major edema(please tell him to look up RSD,images and see the woman whos leg is about the girth of my body,seriously/freakishly huge.).honestly,my ortho,who is actually one of the top knee guys in the state of MN just walks into my exam room everytime i have an appt with him,takes one look at my legs both right next to each other and just keeps shakin his head,totally amazed at the incredible size of my freakin knee,and now the rest of my leg from top to the tips of my toes.

The huge swelling IS part of RSD.but in my case it is also currently part of my post op complcations.my swelling even before the first suregy made my knee look like one really huge grapefruit.it was a huge rounded knob type knee with a huge bakers cyst that stuck out of right behind my knee about three good inches at the very least.The first time my ortho actually saw my knee,he was just freakin out about the size.he treid doing some aspirating but only actually obtaned about 5 measley ccs,which when you looked at the knee,you would have thought he would be pulling out one huge syringe after another of just fluid.not so.this WAS just the RSD tissue swelling only.

I am not sure why this particular vascular surgeon you are seeing seems totally clueless about possible swelling,honestly,his speciality alone should tell him about just what IS possible due to any sort of vascular impairment,really.I would get a new surgeon if this guy is actually even really needed for anything??I would also check the wall of his office for anything that remotely even LOOKS like a flippin diploma from any real medical school.I just do not understand this at all.i also have a vasomotor malfunction in both legs which is showing itself with splotches of huge spider veins up and down both legs but mostly in the one that does not actually have the RSD.strange.having some sort of vasomotor malfunction is also part of the RSD too.

i am really curious as to what prompted the need for the clueless vascular surgeon in the first place??what did you have operated on and why?

Oh and trust me,swelling CAN and very much DOES hurt,yikes,is this guy even from our planet??when you have swelling anywhere in the body,it forces alot of extra pressure onto the surrounding areas like the nerves and muscles and just the intensity of that stretch of the skin when things get that large,well,come on,it wouldn't take a flippin rocket scientist to figure that out.

honestly LD,please get this surgeon out of your life and move onto another if you still actually need to be seeing one.this guy is just unbelievably stupid,just stupid.I truely am amazed at his total lack of knowledge about this,really.

If you no longer really need a surgeon anymore,i would hook up with a good PM (i cant remeber if you are seeing one now or not??)and also start seeing a good physiatrist or physical medicine doc,they would be the best people to see for this.the combo of those docs would help you alot.

there are definite types of therepys that can help with RSD and the help of a good PM is vital for the pain that comes along with this Dx.where re you having the block done and by what type of doc?whoever is doing that block would be a possle doc to be seeing for your ongoing treatment and care of the RSD part of your problems.just something to look into i guess.

i really hope all goes wellwith that block and it gives you some relief too.but PLEASE honestly start seeing a totally different vascular surgeon if you still feel you need one.Quite frankly,this guy really does scare me,alot.I would never ever let him do another surgical procedure on you,wow what a cluelss idiot.He doesn't even have the basics down,its kinda scarey to think about just what other important things he is missing,ya know?good luck and as usual,keep me posted,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.

Last edited by feelbad; 06-01-2006 at 06:52 AM.

 
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