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TTS sufferer, 4th yr after surgery

Posted by Mary on 12/27/03 at 12:12 (140814)

I had my TTS release in 2000 on both feet. Failing to respond to maximum efforts at conservative therapy and the surgeries.
I am unable to walk or sit or stand ect. For only a few minutes at a time before I have to rest, mostly with my feet elevated. I can not wear any shoes or socks without setting intense pain (shooting, burning, sharp stabbing pains). It takes a long time before I feel any relief. What is so scarey is not only is the pain now going up both calfs, behind knees and up both upper legs. I am suffering from simiar pain in my lower back and buttock making it very hard to sit any way.
I am taking neurontin and elavil. Uping my doses trying to find some kind of relief. And sleep on a heating pad with only a feather weight blanket.
I was just wondering if any one out there has had this happen to them and if they have found a way to help.
Any information will be so appreciated.
I have read the article in Reader's digest about chonic pain under studies.
Mary

Re: TTS sufferer, 4th yr after surgery

marie on 12/27/03 at 16:16 (140818)

Yes Mary. Your story is similar to mine. I did recover but it took years and I had to work very hard. I was in a wheel chair and on a scooter for alot of that time. If you read my post below you'll see that part of my daily routine is a strict regimine of vitamins, rest, massage, light stretching and some simple floor exersizes to keep the rest of my body in shape. Frozen peas are helpful in reducing the swelling. Absolutely do not massage over the tarsal area. Understand that this isn't going to get better in a couple of weeks....of course by the sounds of your post you probably know that already.

Find something, anything that can distract you from the pain.....I made pillows...lots of them.

If you have any questions I'll be happy to answer them. I just returned from a light hike in the woods.You'll have to try different methods and vitamins and just see what helps.

best wishes marie

Re: TTS sufferer, 4th yr after surgery

Rose on 12/29/03 at 00:42 (140834)

Is it possible you have developed sciatica? I did following surgery. I have been going to physical therapy and have been doing exercisesnperscribed for sciatica and it has helped tremendously. It was terrible because not only could I not stand, but could not sit more than a few minutes without intesse pain. The exercises are basically back extension exercises with absolutely no forward flexion. I also do the back exercises as well as the foot exercises mentioned in the book PAin Free by Peter Egoscue daily. When I do these daily I need no medication.

Re: TTS sufferer, 4th yr after surgery

BrianG on 1/01/04 at 19:46 (141090)

Hi Mary,

I wondering what type of doctor is treating you for you pain? A pain management specialiast will usually have more treatments at his / her disposal. One of the best treatments now is the Medtronics implantable pumps, and neuro-stimulators. This is what has kept Jerry Lewis going these past few years. He has said that without his neuro-stimulator, he would probably be dead by now. You can check them out at http://www.medtronics.com

Good luck
BrianG

Re: TTS sufferer, 4th yr after surgery

diana on 1/03/04 at 23:59 (141299)

Mary, I had the same symptons you are having except mine started in 1998. First my one first hurt, then the other, and then my lower back. After doing all the usual conservative treatments,for feet I had surgery on one foot which didn't help. I went to a dr about my back, had an MRI showing several buldging discs. I tried Phy Therapy which didn't seem to help, and Nuerotin which did help a little. I finally gave up going to drs and just tried to live with pain upon sitting or standing. Finally after all this time and for no particular reason that I know of I have just started gradually improving. I do go to a water aerobics class now. I started working on better posture and this sounds wierd but I try to sleep with my legs stretched out instead of bent. I stopped wearing tennis shoes and mostly wear clog type shoes with lots of cushion . I, started bike riding, and then started hiking some because I missed it so much.. I thought I'd make myself worse but instead I am better. Maybe time just sometimes takes care of this. Diana

Re: TTS sufferer, 4th yr after surgery

Donna H on 1/14/04 at 23:10 (142050)

Gosh Mary, it sounds like I wrote your post! I am changing doctors due to the frustration; sometimes its like the doctors think you're lying. Like you, I am exhausted after being on my feet only a short while. My feet swell horribly and ache, not to mention the stabbing, shocks, and blow torch inside my feet. I used to hike & swim;now I can barely stand long enough to shower. Neurontin is my only relief. But it isn't helping much lately. I just started having the behind-the-knee and calf problems.
Have you been checked for plantar faciitis? You probably have it as well. If so, there has been success with vioxx. Normally for rheumatoid arthritis, for some people it works for plantar faciitis. About the only decent thing my surgeon did for me. I will be 1 yr post TTS release left foot next month (even though I have it in both feet).Good luck!

Re: TTS sufferer, 4th yr after surgery

Mary on 1/20/04 at 09:28 (142436)

Thank you everyone for your comments. Sorry it took so long to reply. I will just have to learn to live with it until they come up with a solution to our problems. I have tried many different pain killers and nothing helps for nerve damage, neurontin helps some but not enough to be employed with reliability.
Thanks again

Re: TTS sufferer, 4th yr after surgery

Janel K on 1/30/04 at 09:52 (143239)

I had TTS twice now, once DEC 2001 and then last July. I don't know if the second surgery helped yet since my incision never closed and I had to have surgery again in Nov to close the incision. I have been off my foot for 5 months and so its so stiff and doesn't bend yet. I started PT now and am finally getting back on my foot but now I think the incision is opening under my closed skin again. So now I may have to be off my foot again, its so frustrating. No one around here has really ever heard of TTS so it sounds like I'm wining all the time. They said I also have PF but not typical, mine doesn't hurt in the morning but I have pain if the therapist pushes slightly on it. I guess now I just want the incision to be closed for good and then start working on the rest. This is the first time I've seen this web site, its nice to hear that I'm not the only one.