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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board
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Old 05-08-2009, 05:32 AM   #1
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Crps?

I was in a severe car accident in Sept '08, and have had three surgeries. The third surgery was to fix a torn PCL in my right knee. I opted for it because my tibia bone was sagging behind my knee. They did a nerve block and then put me under with general anasthetic. The next day, my foot was still numb, and swollen which i thought was still part of the nerve block and surgery. After three days, my foot was still numb, and could barely move it. After removing the dressings on my knee, i noticed a lesion on the right side, just below where the knee joint is. Still my foot was numb, and could barely wiggle my toes and only move my foot inwards and downwards. Then my foot became extremely hypersensative, still numb in parts, and there was an onset of increased constant pain in my foot, that ran halfway up my shin.

About a week later my symptoms included swelling, warm/cold surface temps, reddish / purple colors, constant hypersensativity, pain, and numb/tingly-ness. I saw my surgeon and he said i likely had nerve compression of the perinial nerve perhaps due to the dressings and leg brace being on so tight, with the addition of the swelling post-op.

So the pain only got worse, i now have foot drop, and can only move my foot inwards, downwards, and slightly wiggle my toes. But can't bring my foot up, or move it outwards. Still same symptoms, and finally went to a neurologist where they say i have Complex Regional Pain Syndrome (CRPS) Type II or aka: RSD / Casauglia ??

I have been taking neurotin and been having nerve blocks which have made the pain manageable. I also sleep with a night foot brace to help with the foot drop. I will also have a EMG done soon. Docs and therapists are optomisitic and say that i should get function back in my right foot and the pain should subside eventually...However, after reading everything online, there seems to be no cure and that some people get better, some don't.

I am in the military and have had an active lifestyle, etc. This condition has really put a hamper on my hopes for full recovery from my accident and will probably leave me with disability.

So i was wondering if anyone on here has or is going through what i'm going through and would share thier thoughts and comments.

Is there anything i should be doing in addition to neurotin, pain meds, etc?

What questions should i ask when taking the EMG? Should i get a MRI - and will that show any nerve damage?

Has anyone fully recovered? If so, how long did it take?

 
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Old 05-08-2009, 06:57 AM   #2
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Re: Crps?

Try to get to an RSD doc at the very best teaching hospital or medical center that you can. Since you say you are military I am assuming that you are in or around Virginia Beach. Perhaps they have some specialists at John Hopkins? Or in DC? Try to get the docs at the base to help you with getting a referral to the best guys you can find. It will be worth the effort. Won't Champus (or whatever the military insurance is called) cover a referral outside the system if it comes from the treating physician?

Good luck. Sandy (a military brat)

 
Old 05-08-2009, 01:16 PM   #3
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Re: Crps?

I am stationed in the DC area, and have been going to Bethesda Naval Hospital. Military health insurance (TriCare) i think will only do outside referrals only if care is not available at a military hospital / clinic, etc. So i'm pretty much stuck with Docs at the Naval Hospital. I will look into trying to get a doc there to put in a outside referral if they know of a RSD speciality clinic.

However, with all the wounded military from Iraq / Afghanistan, i'm sure that CRPS/RSD has been seen before at Bethesda...as in it shouldn't be anything new.

Does anyone know of a docs that have experience with RSD/CRPS in the DC/Northern VA area?

 
Old 05-09-2009, 12:05 PM   #4
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Re: Crps?

Quote:
Originally Posted by afadave2 View Post
I was in a severe car accident in Sept '08, and have had three surgeries. The third surgery was to fix a torn PCL in my right knee. I opted for it because my tibia bone was sagging behind my knee. They did a nerve block and then put me under with general anasthetic. The next day, my foot was still numb, and swollen which i thought was still part of the nerve block and surgery. After three days, my foot was still numb, and could barely move it. After removing the dressings on my knee, i noticed a lesion on the right side, just below where the knee joint is. Still my foot was numb, and could barely wiggle my toes and only move my foot inwards and downwards. Then my foot became extremely hypersensative, still numb in parts, and there was an onset of increased constant pain in my foot, that ran halfway up my shin.

About a week later my symptoms included swelling, warm/cold surface temps, reddish / purple colors, constant hypersensativity, pain, and numb/tingly-ness. I saw my surgeon and he said i likely had nerve compression of the perinial nerve perhaps due to the dressings and leg brace being on so tight, with the addition of the swelling post-op.

So the pain only got worse, i now have foot drop, and can only move my foot inwards, downwards, and slightly wiggle my toes. But can't bring my foot up, or move it outwards. Still same symptoms, and finally went to a neurologist where they say i have Complex Regional Pain Syndrome (CRPS) Type II or aka: RSD / Casauglia ??

I have been taking neurotin and been having nerve blocks which have made the pain manageable. I also sleep with a night foot brace to help with the foot drop. I will also have a EMG done soon. Docs and therapists are optomisitic and say that i should get function back in my right foot and the pain should subside eventually...However, after reading everything online, there seems to be no cure and that some people get better, some don't.

I am in the military and have had an active lifestyle, etc. This condition has really put a hamper on my hopes for full recovery from my accident and will probably leave me with disability.

So i was wondering if anyone on here has or is going through what i'm going through and would share thier thoughts and comments.

Is there anything i should be doing in addition to neurotin, pain meds, etc?

What questions should i ask when taking the EMG? Should i get a MRI - and will that show any nerve damage?

Has anyone fully recovered? If so, how long did it take?
This treatment did not help my son's CRPS-Type I, which, from my experience, seems even trickier to treat since there's no evidence of nerve damage and no specific trauma that can be fingered as the trigger of the condition, but it may bring some relief to your situation and since you're associated with the military, you may be able to participate in the study. Competitive Technologies, a company that deals with medical assistive devices, has recently received distribution rights for a machine invented by a doctor in Italy that has been used successfully to treat various neuropathies including RSD and cancer pain. It's non-invasive with no side effects. The company is in the process of starting a clinical trial at the Walter Reed Institute in VA. Ask around or contact the company directly via their web site. Google CTT Competitive Technologies and click on link to the right about a pain therapy device for more information.

 
Old 11-23-2010, 12:45 PM   #5
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Re: Crps?

I'm also in the military with CRPS and belong to a support group on Facebook for Military and Veterans with RSD/CRPS. I hope you can join.

 
Old 11-24-2010, 09:46 PM   #6
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Re: Crps?

Hi afadave2, Wow your symptoms are so like mine, everything. I had foot surgery dec 09,
immediately I had numbness and couldnt bend flex wiggle my toes, could only move foot inwards and downwards, went to neuro was dx with dropfoot and peripheral neuropathy, then had severe color changes red to deep purple, hypersensitivity set in, went to ortho he said rsd set me up with physical therapy and pain management I did physical therapy 3 x's a week for 12 weeks I can now lift my foot up, but my toes dont move I have lost that forever, the pain has become very intense a burning like someone has peeled back several layers of skin and poured alchohol on it, stabbing pains, tugging pains and the horrible bone pain. I am taking neurotin, vicodin, catapress patch, and elavil. My pain management doctor immediately started doing sympathetic nerve blocks, I got some relief but for 3 days only. My RSD has spread up my entire leg and to both hands. I just did a trial for the spinal cord stimulator last week, which helped alot. My docs office called today and said the insurance company approved the permanet one yeah. The EMG on someone with RSD can be very cruel and I would not do it. they could not finish the test on me because of the hypersensitivity and I was in a horrible flare for about 10 days afterward. You should be doing physical therapy have the doctors mentioned that? do it right away like I said I have lost the movement in my toes forever. Good luck .
kelly

 
Old 11-26-2010, 12:11 PM   #7
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Re: Crps?

Quote:
Originally Posted by kellyevans40 View Post
Hi afadave2, Wow your symptoms are so like mine, everything. I had foot surgery dec 09,
immediately I had numbness and couldnt bend flex wiggle my toes, could only move foot inwards and downwards, went to neuro was dx with dropfoot and peripheral neuropathy, then had severe color changes red to deep purple, hypersensitivity set in, went to ortho he said rsd set me up with physical therapy and pain management I did physical therapy 3 x's a week for 12 weeks I can now lift my foot up, but my toes dont move I have lost that forever, the pain has become very intense a burning like someone has peeled back several layers of skin and poured alchohol on it, stabbing pains, tugging pains and the horrible bone pain. I am taking neurotin, vicodin, catapress patch, and elavil. My pain management doctor immediately started doing sympathetic nerve blocks, I got some relief but for 3 days only. My RSD has spread up my entire leg and to both hands. I just did a trial for the spinal cord stimulator last week, which helped alot. My docs office called today and said the insurance company approved the permanet one yeah. The EMG on someone with RSD can be very cruel and I would not do it. they could not finish the test on me because of the hypersensitivity and I was in a horrible flare for about 10 days afterward. You should be doing physical therapy have the doctors mentioned that? do it right away like I said I have lost the movement in my toes forever. Good luck .
kelly
Kelly,

I was diagnosed with CRPS Type II (RSD) in May of '09. Its been over a year, and right now things are manageable for me. The good thing was they caught my condition early. I went to pain management at the Naval Hospital and did two lumbar sympathetic nerve blocks, along with physical therapy, and medication. Things have calmed down for me. I still have numbness, tingly sensations, cold skin, and color changes, but i can manage, function, and carry on with my life. I too still have loss of movement in my foot/and toes.

I believe i'm one of the fortunate ones that things have somewhat recovered. Not everyones symptoms subside, but i will say in your case, give it some time. It took me about a year - a long and painful year. Stay away from any tobacco products, alcohol, etc. They impede nerve regeneration. Additionally, keep active with your physical therapy. Force yourself to move the affected area, and use it as much as you can. That helps. Also, I would take water and rice grains and pour over my foot to get the nerves sensativity back in order and get it used to stimulus. Try that as well.

good luck and stay strong!

Last edited by afadave2; 11-26-2010 at 12:16 PM.

 
Old 12-08-2010, 01:58 PM   #8
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Re: Crps?

Quote:
Originally Posted by momofrsdkid View Post
This treatment did not help my son's CRPS-Type I, which, from my experience, seems even trickier to treat since there's no evidence of nerve damage and no specific trauma that can be fingered as the trigger of the condition, but it may bring some relief to your situation and since you're associated with the military, you may be able to participate in the study. Competitive Technologies, a company that deals with medical assistive devices, has recently received distribution rights for a machine invented by a doctor in Italy that has been used successfully to treat various neuropathies including RSD and cancer pain. It's non-invasive with no side effects. The company is in the process of starting a clinical trial at the Walter Reed Institute in VA. Ask around or contact the company directly via their web site. Google CTT Competitive Technologies and click on link to the right about a pain therapy device for more information.
Hi sounds like me. I broke my leg in Korea and retired from the Army at about the time everything went south. Being in the Infantry wasn't easy. Word of advice apply for VA disability when you get out. I have foot drop also which doesn't help. The brace can get painful but it keeps yoiur foot up. I have been dealing with this for 15 years through VA and I finally got a referra outside when the pain clininc which exists in name only couldn't do anything. I have a series of blocks and the Dr said the only reason he ois doing them instead of a SCS is that is the VA protocol.

Keep your records together and file when you leave the service. Send ALL medical records with your VA application and stay on top of it.

 
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