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My experience (so far) with TTS

Posted by Kristi O. on 3/05/03 at 21:23 (111951)

Hi all,

I haven't posted before, but I have been keeping up with the message board since I thought my foot problem MIGHT be TTS. I just wanted to share what my experience has been because it has been so helpful for me to read all of your experiences.

About two months ago, my right foot 'fell asleep' and wouldn't wake up. It happened in my sleep, so the cause was not apparent at first. My mom wanted me to see the doctor who did my scoliosis surgery when I was younger to make sure it wasn't something in my back. In the first visit, we pretty much ruled out my back. There was a positive Tinel's sign (he tapped on my ankle and I felt even more pins and needles than normal). So he sent me for an MRI. It showed 'something' in my ankle, so I went for EMG/NCV testing. The NCV was negative for Tarsal Tunnel, and the EMG was negative for any nerve damage in my back. At this point, I was really upset because I thought the doctors just didn't know what was wrong with me. This whole mess was interrupting my regular life. I enjoy going to my gym 4+ times a week, and I just couldn't do it because of the pain I was in. I didn't know the NCV could be negative, and still have TTS. I learned later at my doctor's appointment that the NCV is only positive after some of the nerve has already 'died', and a negative test doesn't rule out TTS. Next, I had another MRI to rule out that this 'thing' in my ankle wasn't inside the nerve -- meaning I would need to see a neurosurgeon. It wasn't. That MRI was done on 2/20/03, and he scheduled me for an exploratory surgery for the afternoon of 2/24/03. I was so thrilled that something was finally going to be done about it!!

I want to say that I feel for all of you who have struggled with this condition for years in many cases, and I admire your strength. The past couple of months has been enough to put me almost at my wit's end! I know a lot of you frown on doing surgery so early, but for me I felt it was the best option. I was ready to get it over with, and move on.

After the surgery, the doctor told me it was definitely TTS, and there was scar tissue from previous ankle injuries trapping the nerve. Unfortunately, I fell in on my ankle in one of my gym classes 6 or 7 months ago and my ankle has been really unstable since then. I sprain it often, and I don't feel like I can trust it. The main problem is that I never let it recover, never resting or taking any time off my regular activites. I never really thought much about spraining my ankle all the time, but from now on, I'm wearing an ankle brace to the gym!! If that doesn't work, the doctor told me there is a procedure that he can do to tighthen up the ligaments and stuff to make my ankle more stable. Hopefully, I can avoid that. Anyone have any experience with ankle instability?

At any rate, I am 9 days post-op and feeling pretty good (except I just came down with strep throat.. argh! And the DAY before I finally get to go back to work.. go figure). I got my stitches out today (which was painful for me) and was told the rest of my recovery is up to me... doing whatever I feel like I can. Up until now, I was supposed to keep it elevated and no weight bearing. I started trying to put weight on it today. I'm certainly not ready to ditch the crutches, but I'm thrilled I am through with splints and stuff. It'll be slow, but I'm glad I had this surgery done. The first two days were the worst, but it's been all downhill since then. I don't have needles and pins in my toes and foot anymore! Although, I have had some weird sensations since the surgery ---mostly temperature related, feeling extremely hot or cold. The doc says that will go away.

Anyway, I just wanted to say thanks to all of you for providing information on a condition that doesn't seem to be very common. I wish you all the best. I'll be keeping up with you of course, and one of these days I might have something useful for somebody and actually post something!

So mainly this is to say thanks for all of you for sharing your experiences, and I hope that mine might also be beneficial to others.


Re: My experience (so far) with TTS

Carey on 3/05/03 at 22:39 (111963)

I have had a lot of experience with ankle instability. Right now im 16 years old but when i first hurt my ankle it was december of 2001. I was put in a walking boot for 6 weeks, then when it did not get better the doctore suggested surgery for an extra bone i have in my foot. After that i visited another doctor. For a year, he diagnosed it as tendonitis. I went through physical therapy, orthodics, cortisone shots but nothing every got better. I play sports year round in my high school and nothing seemed to work. For the longest time i wore an air cast or taped my ankle before games because i was fearful they were going to roll again. I have learned though that even though PT hasnt helped my foot it has strangthen my ankle and made me feel more comfortable playin sports on it. A couple months ago, my doctor suggest i mgiht has TTS and i got an EMG/NC. When i went to see my doctor he said i clinically had TTS but the NC was borderline. He suggested surgery but wanted to get a second opinion from a foot specialist. Although the numbness and pain never really goes away in my foot, have learned that working to build up the strenght in my ankle to keep it from rolling. Alos after working out, icing it a good idea. At least for me to keep down the swelling.

Re: My experience (so far) with TTS

Kristi O. on 3/07/03 at 00:27 (112087)


Good luck with your ankle. Sounds like you've been through a lot. I will ask my doctor to give me some exercises to help strengthen those muscles in my ankle in addition to wearing some type of brace or taping my ankle when I work out. I hope you don't have to have the TTS surgery because of course surgery is risky, but when it works, it's great! I know I still have a lot of room for stuff to go wrong, but I am so pleased already.

Thanks for the advice!


P.S. Have ditched the crutches for the past 6 hours now! Tomorrow, I'm only going to take one to work :) YAY! I HATE crutches.