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TTS Post-op Has become Reflex Sympathetic Dystrophy Syndrome

Posted by pango on 2/18/05 at 14:13 (169364)

My tts was a failure now I guess my surgeon is protecting himself What is Reflex Sympathetic Dystrophy Syndrome ,Or Chronic Regional Pain Syndrome? Anyone care to take a stab at this one? Dr Z. ?

Re: TTS Post-op Has become Reflex Sympathetic Dystrophy Syndrome

Dr. Z on 2/18/05 at 16:15 (169367)

If this is correct. You need to go to a pain center asap. They will give you an epidural and help control your pain. The longer one waits the less chance of recovery.

Re: TTS Post-op Has become Reflex Sympathetic Dystrophy Syndrome

Anita H on 2/20/05 at 21:46 (169528)

I have had two children with RSDS/CRPS. I have TTS and the surgeon and pain doctor say no to surgery for me because of my susceptibility to RSDS. I appreciate their concern because I know from my children how bad this can be. As has been said, seek a good pain do that truly understands RSDS, immediately. Try aquatherapy with other modalities such as nerve blocks and meds. Anesthesiologists are sometimes the best docs for this - the pain docs, even though it is considered neurological. Keeping the foot or any affected limb warm is very important. Do not use ice! I don't care what the nurse says. Ice is an enemy for those with RSD. My own blog may help: http://momof2rsdkids.blogspot.com which will give you other sites to check out. I was just dxed with TTS, just looked at this board for the first time and never expected to see someone post with RSD! I am getting my second steroid injections next Wednesday. Ouch.

Re: TTS Post-op Has become Reflex Sympathetic Dystrophy Syndrome

Darlene on 2/20/05 at 22:42 (169531)

Anita:

I'm wondering how your diagnosis was made. I ask because it seems that diagnosis for TTS is not very clear cut. NCV studies show many false negatives, but I understand that a positive study is fairly accurate.
Treatment depends on the cause. For example if it is caused by inflammation then cortisone and ultrasound therapy may help.
Did you have an MRI?

Re: TTS Post-op Has become Reflex Sympathetic Dystrophy Syndrome

Anita H on 2/21/05 at 11:34 (169569)

Darlene,
Yes, I did have an MRI. I had a major car accident in 1995. My right ankle was dislocated and torn to the bone, stretching everything including the nerve. The ortho surgeon that sewed it back up said I would probably always have some numbness on my foot due to the nerve involvement. However, my pain waxed and waned over the years, until the past 2 or 3 when it got worse, especially due to exercise/walking or just standing in place. In fact, the pain has gotten so bad it spreads up my leg. The docs really thought maybe I had RSDS. Not one doc offered to x-ray or do an MRI until just two months ago. That is when the scar tissue was seen on the medial side of my ankle. Surprise me because my injury was on the other side, where I know I have calcium deposits, also. The steroid injections did stop the pain for 3 days. My ankle feels as though it is being squeezed, like a tourniquet? I had no idea I had the 'typical' symptoms of TTS until I read them. All these years I have just lived with it, until I felt desperate!

Re: TTS Post-op Has become Reflex Sympathetic Dystrophy Syndrome

Darlene on 2/21/05 at 12:24 (169574)

Hi Anita:
I am not a doctor, just a fellow sufferor - 6 weeks out from Morton's neuroma surgery and experiencing TTS pain.
Regarding scar tissue, I remember Dr. Davis posted some information at this site about an enzyme that breaks down scar tissue. You may want to post a message to his attention in the 'Ask the Doctors' section. Regarding the cortisone injection, I would be curious as to how much of the pain relief is due to the cortisone itself (reducing inflammation) versus the pain reliever in the shot (perhaps marcaine which is longer lasting). Did your MRI show inflammation? Also, I understand that you need to be very careful with cortisone injections in this area - I think because you want to avoid getting it near a tendon. I hope a doc or someone more knowledgable will offer you more information.

Re: TTS Post-op Has become Reflex Sympathetic Dystrophy Syndrome

LARA on 2/25/05 at 11:25 (169875)

Thanks for sharing this Anita. I have a friend with RSD and have been wanting to learn more. This was better than most of the stuff I was able to find when doing a general search. I am very sorry to hear about your family's struggle with the disease. My thoughts are with you.

Re: TTS Post-op Has become Reflex Sympathetic Dystrophy Syndrome

Elaine T on 2/26/05 at 16:05 (169961)

Pango, I'm so sorry you have to go through this. I've had RSD in my ankle, and my hand. The absolute worst pain I've ever experienced. Now that we know I'm prone to developing it, I'm put on Elavil prior to surgery, and for a week after.

It almost always does go away. You have my sincerest best wishes.