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Do people have Tarsal Tunnel Syndrome apart from me ?

Posted , 4 users are following.

treweek
treweek

Since 2004, I have had TTS diagnosed in my left ankle. Over the next 5 years, I had 5 operations by 3 surgeons. Then in 2009, my right ankle developed it, and I have had 2 operations. I have spent years in and out of a wheelchair and am still in one.

The pains through the years have been awful. All the doctors and nurses I have met, have heard of TTS but not met anyone else with it. The only surgeon capable of attempting a cure is in Oxford. I know of nobody else.

It has ruined our lives and retirement. I have not been able to walk for years. Am I the only person to suffer this hell ? The health service just stand and look at you and are incapable of helping my pain.

0 likes, 3 replies

3 Replies

  • godwyn74
    godwyn74

    Posted

    I also have bilateral tarsal tunnel syndrome, since 1997.

    You are right, the pain is awful and no one seems to understand this. It took 18 months before my condition was diagnosed. I have had surgery on one foot but only a small improvement after some years.

    This condition greatly limits normal activity and coping with it involves fine calculations of how much one can do without making it worse. In my case there has been an exceedingly slow improvement over years although recently a deterioration. I am now trying new orthotics. I find ice packs on the ankle area helps a bit or immersing feet in very cold water.

    I note you have had no other responses and this reflects my own experience that one feels very isolated with the condition. There seems to be little medical expertise on offer.

    I would be interested to know how you are getting on.

    godwyn74

  • mandy85
    mandy85

    Posted

    I commiserate with both of you. Both my feet got really sore at the same time about 12 months ago. On the plus side, the swelling, pain in my feet picked up that I was hypothyroid (severely) But since I've been on thyroid medicine it hasn't resolved. Finally went to a specialist who did nerve tests and said I had TSS (didn't tell me much about it!). I'm due to have cortisol injections but am a bit worried, as I've read some negative outcomes.. I had CTS in one hand also, even though I had the op it still feels much the same. I tried the ice when I read your post and it does help a bit. I'm trying to lose weight but very difficult! I'm swimming now instead of walking. I'd be interested in any further developments.
  • Woody1976
    Woody1976 treweek

    Posted

    Hello treweek, I don't have a firm diagnosis yet but I am convinced I have TTS and I would love to know the name of the surgeon in Oxford as I am currently searching for a specialist with some knowlege because as you mentioned, nobody knows or seems to be able to help. Wishing you foot pain relief, thank you.
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