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Confused about TTS Surgery

Posted by Camilla on 9/16/04 at 13:21 (159986)

I have it in both ankles. I am wondering if I don't have the surgery will it get worse over time? I am trying to do as much research as I can. My doctor wants to do surgery because everything else has been tried. I am not looking forward to the post op and recovery period. Everything I have read makes it sound worse than having TTS. Have any of you out there had the surgery and have had success with it? Or have many of you had the surgery and the pain is worse? I am so confused. It is really depressing.
Any answers greatly appreciated...
Thanks so much for your time

-Camilla

Re: Confused about TTS Surgery

chris on 9/17/04 at 08:19 (160041)

I have had successful surgery. You should be able to do a search under my name to find the posts about it.

Please note that many, many people have not had success with surgery. I consider myself very lucky.

Re: Confused about TTS Surgery

Camilla on 9/17/04 at 09:30 (160043)

Thanks so much for replying. I have read where maybe we don't hear many sucess stories because people feel better and don't log in to talk about it anymore. This sounds logical. I hope I am as lucky as you. I am going to look for your previous posts now.

Thanks again! :-)

Re: Confused about TTS Surgery

LARA on 9/18/04 at 09:44 (160113)

That's true. Most people do get better with surgery. If there is a known mass causing the TTS the odds are even better. IF the surgeon has done lots of TT release surgery, the odds are even better. If you/your doctor are aggressive about scar tissue after the surgery the odds are even better. However, even when the surgery is successful, it is often a very long recovery period. Sometimes the results last for years, but not forever.

All surgeries have risk. Any surgery in the foot has more risks - has to do with the limited blood flow, being so far away from the heart, makes healing harder and take longer. Actually, I've heard it's anything below the knee.

Also, while most people do get better wtih surgery, a significant number are simply no worse, and a smaller, but significant number are worse off after surgery. I don't think the procedure is old enough to have statitistics on reasons for this. Can it all/most be attributed to the techique? cause?

I'm not saying this to talk you out of surgery. Most people are satisfied, I think. But there are signficant risks, and many of those who have had successful surgery on this board will tell you not to do it unless other things don't work. You're smart to be doing your research so that if you decide to do it, you will be prepared and know you made a good decision.

Do you know the cause of your TTS?

Re: Confused about TTS Surgery

Camilla on 9/18/04 at 13:59 (160117)

Thanks for responding, Lara. I was first diagnosed with PF and a heel spur. I used orthotics, rest, excercises, steroids, anti inflammatories, ice and has cortisone shots. I am now on the last thing to try. It is a fairly new thing and the doctor just wants to make sure everything is used before we resort to surgery. It is a sinthetic form of the B1 vitamin. I had the nerve test a month ago and it is in both feet. At that time, one of my feet was worse than the other, Now, they are getting to be equal on the pain scale. I am worried because the foot that I am going to use to bear on my weight on after the surgery is now getting as bad as the one I am haveing the surgery on. I have just accepted that I guess I have to do this because I have exhausted everything else.
I don't really know the cause of my TTS. I was in ballet for 15 years and then went into martial arts. My whole life I have been a doer..a perfectionist and always going. I can't stand to sit. Although, I guess I am going to have to sit now!!!!!!
I am thrilled to have found this message board. I have been reading it for days and there seems to be a lot of knowledgable, nice people here. I think having a support system is a wonderful idea.
What do you do to work on staying away from scar tissue? Did you have the surgery?

Re: Confused about TTS Surgery

Juni on 9/18/04 at 14:38 (160124)

Thanks for all the info! I was first diagnosed with PTT and only recently dx w/TTS. I too was very very physically active on my legs/feet for most of my life (35 y.o. now) -- 2-3 hours of dance & aerobics, stepaerobics, running, and kickboxing. Now I have to learn to relax and simply do yoga/pilates/stretching exercises. It's been a tough lifestyle change. I am seeking treatment for TTS now. If you know any sources of good doctors, please inform me.

Re: Confused about TTS Surgery

LARA on 9/18/04 at 23:21 (160151)

Have you tried compression socks? They were magic for me - but don't do much for many people. I reason I frequently suggest them is they are relatively inexpensive to try (as a treatment, they are expensive socks, about $20), and if they don't work, or hurt, it's easily reversed by just taking the socks off. Before the socks I was looking at surgery, and fantasizing about amputation. They haven't cured me - but have given me a nice life - nice enough not to risk surgery. If you have no known cause, I think they are more likely to help. I didn't do ballet, but I did tap dance my way through childhood, and was doing tennis and karate when I got TTS. Some doctors stick their nose in their about them. But you don't need a doctor to try them - compression socks are available in drug stores - they're the same ones people with varicose veins or post-surgery wear.

Re: Confused about TTS Surgery

Camilla on 9/20/04 at 22:43 (160230)

Sorry, Juni, unless you are in Texas, I don;t know of anyone, but I am sure the people here on this board have some they can recommend. I wish you all the luck I can possibly muster. Don't ever stop looking for someone better than what the solution you have now.
As for the socks, no, I havent tried them. I have tried everything else in the world. And, lately, things are getting much worse. He has me on a b complex to see if this will work. It is the last thing before surgery that he knows of. I trust him because I see him trying everyhting under the moon to avoild the surgery. He has even gone over and over the downfalls to make sure I know. I am glad the socks work for you. At this point, I can bet one into a billion they would not work for me. Good to see that there are some that don't have to have the surgery, tho!

Re: Confused about TTS Surgery

RonB on 9/21/04 at 00:50 (160235)

I have struggled with bilatteral TTS for 5 years now. I can guarentee that you have NOT tried everything in the world! Do not trust your fate to one or two doctors. In many cases you must do the research and ask the questions, request the tests, MRI's, etc. For me it took 15 (including Doctors, PT's, Neuroligists, Pain Management Specialists, Seurgons, etc.) before I was correctly diagnosed and treated for neuropathy. Each person's cause and treatment can be different.

What have you tried so far?

Ron

Re: Confused about TTS Surgery

LARA on 9/21/04 at 21:55 (160301)

If there is no know cause, I would try compression socks (I'm sort of a broken record on this, but they saved me from surgery, and are relatively easy to try. I new within a few days they were helping, although it took a few months before I stabilized at the level I am today).

Re: Confused about TTS Surgery

LARA on 9/21/04 at 21:57 (160303)

Oops. Sorry. I see I already posted this. I know it can be discouraging to keep trying things that don't work - yet another dead end.

Re: Lara

Julie on 9/22/04 at 01:58 (160319)

Lara, I think those of us who have been around for a long time all feel like broken records on our particular specialisms! But don't stop recommending compression socks. There are always new people who have never heard of them and whom they might help.
.

Re: Confused about TTS Surgery

Bill D on 9/23/04 at 14:34 (160396)

To RonB:

Which specialist diagnosed neuropathy? How did he/she detect it? What's your treament? Thanks.