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First time visitor with TTS

Posted by Aimee C. on 5/31/04 at 19:00 (151646)

Hi, I just wanted to say hello. I've been somewhat disabled for 2 years, and have gone crazy trying to get a diagnosis. It seems I may have found one finally, but I can't be sure. I've seen tons of podiatrists and orthopedists, and a handful of neurologists and rheumatologists, and everyone has said they don't know what it is. Mostly, they've insulted me by assuming it's psychological, said that if it isn't on the MRI it doesn't exist, or admitted to not knowing what it is but assuming that the buck stops there so I need to live with the pain for the rest of my life.

Recently I went to a chiropractor who said that the symptoms are TTS, and he's been giving me a foot massage. A physical therapist I just started seeing has been successfully reducing the swelling. Generally, I feel better for the first time since the initial injury (overwalking carrying too much weight). If anyone lives in the San Francisco Bay Area and either wants a referral or knows of some good doctors/bodyworkers/PTs.

I also would recommend Darlene Cohen's books and website, darlenecohen.net, in terms of coping with the pain and loss. She's got a lot of wisdom.

I've tried Elavil, ice, ice/heat, orthotics, big immobilizing polio-style ankle foot braces, PT, acupuncture, etc. Nothing produced amazing results, but I just bought a foam wedge to put my feet up on, and the massage definitely helps. My doctor said that if I stay immobile, my biggest worry will be my overall health and bone strength, not my foot problems, so I got a tiny Endless Pools swimming pool to rebuild by strength by swimming and water aerobics. I highly recommend that you do as much exercise as you can, without impacting your feet.

I've also given up the sightseeing, etc. I'm single and worry that fewer people will be attracted to me, with these problems, and that I'll have to give more in other ways to keep it balanced. As it is, most of the time I'm too tired from the pain to reach out to meet someone. I've had to bite the bullet and spend more on housecleaners and other services than I can really afford, in order to keep my house in order. I'm a bit overweight and struggle with the lack of desire to diet, wanting some kind of pleasant body experience to balance the chronic pain, vs. the knowledge that my weight doesn't help my feet or my self-esteem.

My life isn't too bad right now, thinking that I may have a diagnosis and that there's stuff I haven't tried yet. I don't know how much hope to have, but even a minor improvement is a great thing. I'm so glad I found this message board!

Re: First time visitor with TTS

Dorothy on 5/31/04 at 19:05 (151647)

Aimee C. - I truly appreciate your post. It is clear and descriptive and it describes a wonderful attitude that shows a lot of self-understanding. I hope you find improved health. Welcome here.

Re: First time visitor with TTS

wendyn on 5/31/04 at 22:17 (151664)

Welcome Aimee! I think you've certainly come to the right place. It can be awfully frustrating when you can't get a diagnosis (I can relate). Good for you for getting the pool, and you're right - as much exercise as you can will be a huge help.

Can you bike?

Re: First time visitor with TTS

Pam S. on 6/01/04 at 17:07 (151730)

Dear Aimee:
I am touched by your post. First of all, you sound like you are truly advocating for yourself and that is so important. There are so many of us who have had insensitive comments made to us by the medical profession. This is all truly a journey and you will learn alot along the way.

I also have TTS and PF (if you hang around here long enough you will learn lots of fun abbreviations etc!!) I also saw lots of docs, and I do not really feel like going thru the whole ordeal because it is boring but is sounds alot like your situation. Many times TTS does not show up on an MRI unless there is a mass there. Mine showed no mass but I had a postive nerve conduction test or NCV/EMG. That is a test that is not real pleasant which measures how fast the nerve travels somewhere. There are folks on this board who sound just like doctors and can describe these things much better than I! Anyway, that test,if positive, is considered quite reliable for TTS. A neurologist or psysiatrist sp? does that test.
I was in so much pain I had the nerve released which gives you about a 50% chance of relief. I am much better but I am not perfect. The surgery is another story, not a piece of cake but I can function much better so in that regard I am happy I did it.

I still get PT because I find so much relief from ionto and massage. Mentally it feels great to be doing something about your situation. I also swim and ride a recumbant bike and I do non standing yoga poses.

I have been told weight is a big issue with TTS. More pressure on the nerve. I know how difficult it is to lose weight because my sister stuggles with weight issues. Elavil can cause weight gain so if you are off of that it is good.

Neurontin is a drug many of us take for TTS burning pain. It does not work for everyone but it has helped me. Once you get a definitive diagnosis you can explore that.

I hope this helps. I am curious as to what your symptoms are? Take care and thx for the tips about Cohen's books. pam (not a doc as you can tell!!!)

Re: First time visitor with TTS

marie on 6/02/04 at 19:38 (151835)

Hi Aimee,

Welcome. :) What a thoughtful post. Well you've come to the right place. Please do not hesitate to vent or ask questions. We have all been there. I would like to know more about what the chiropractor does when you visit. So if you get a chance please elaborate.

See ya around!

best wishes marie

Re: First time visitor with TTS

Aimee C. on 6/07/04 at 00:16 (152185)

I can't bike, unfortunately. I have my stationary bike in the garage with the hope I'll be able to resuscitate it one day!

Re: First time visitor with TTS

Aimee C. on 6/07/04 at 00:21 (152186)

Thanks for the link to the yoga postures, I'll try them! What is ionto? I had 2 nerve conduction studies and both were negative for the tarsal nerve (or whatever it's called). My symptoms include pain on walking or standing, burning in the bottom of my feet, pain around the ankles, slight swelling.

Re: First time visitor with TTS

Aimee C. on 6/07/04 at 00:23 (152187)

Thanks for replying. My chiropractor works on the nerve from the lower calves down through the arch, using a gentle stroke while rocking the ankle slightly. It's hard to describe but it's called orthopedic massage. It's varied in effectiveness, if it's too deep it makes it worse, but I feel a change in the density of the tissue around the nerve now and there's less burning.