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When surgery does not work

Posted by Margie on 2/01/05 at 08:55 (168233)

I am not trying to discourage anyone from having surgery for TTS. I do believe every case is different.
I had surgery 2-2000 on one and then surgery 5-2000 on the other. I was only on short term disability so I had to do them close together. That was 5 years ago and there is a lot more information out there now. When I had surgery the percentage rate was 80/20.
I had another EMG done 5-2004 and it is still positive for TTS. But when I go to explain my limitations and pain I suffer continuously. Unable to do any simple things. My pain travels up both legs, making it impossible to sit without elevating my legs. Can walk only a short distance then I have to sit down, elevated. Finding a job and being able to walk into the building, much less drive there is impossible.
If anyone can give my some kind of information, a website something to explain our limitations and pain we suffer from having TTS it would be so appreciated.
I have two dr. reporting that I am permanently damaged in both posterior tibial nerves. And EMG stating I have TTS. But that doesn't seem to be enough.
Please someone help.

Re: When surgery does not work

Geri on 2/01/05 at 10:09 (168237)

Margie; I feel your pain!! I had tts surgery 16 months ago. Still can only walk short distances and have rearranged my life much simpler than before pain from tts.
One of the few things I do to accomodate my lifestyle is using a stool used to view golf tournaments. Spectaters use this to sit on between walking to differnt holes and etc. Whenever I have to wait in a line even two deep I open my stool and sit. I live in Fla. and I cannot tell you the people that ask about my stool, and where to get one. I carry this stool in my car and take it out anywhere I may need to sit down. I use it daily. I don't take it out when I can ride in a scooter, such as the grocery store. It has afforded me much more freedom. I use it in the bathroom of my kids house when we are visiting. I can sit on it to brush my teeth and do my makeup and hair since it is small.
I'm still hoping for improvement and I hope you get some answers from the Doctor's on this site as well as some of the tts sufferers.
Keep hope.

Re: When surgery does not work

Marty SLC on 2/01/05 at 12:16 (168245)

Geri,

I think you will still see improvement. 16 months isn't long enough i don't think. Hang in there

Re: When surgery does not work

Geri on 2/01/05 at 19:12 (168276)

Marty: Thankyou for your encouragement. There are so many that suffer from this foot problem. There is not a min. of any day that I do not feel my foot and I know Margie is the same. The pain level fluctuates according to my activity and of course I have good days and bad days. I have more good than bad now and that is a plus. At first I said I was on the 1 year plan for getting pain free, and now I say I am probably on the 3 year plan. Who knows. I am pretty much pain free at night after I take my Neurontin, of this I am thankful.
Margie: my heart goes out to you I hope you find relief soon. I have no answers for you, just keep searching for help. Have you been to a pain Doctor? At least they can help you with pain relief. Good luck, hang in there.

Re: When surgery does not work

skully on 2/01/05 at 21:14 (168283)

I have looked at what seems to be the whole web, lol, for more of a description of tarsal tunnel.

There's hardly anything out there that really talks about THE PAIN and how incapacitating it can be.

Mine is one ankle. My tests are positive but no way am I having surgery. I think mine is too far gone and I think my initial injury is a big part of the cause of my problems - scarring of the nerves. My neurologist thought so too and he was doubtful that surgery would work in my case.

MY tests show severe impairment in that nerve in all branches. I do have good days, but I have bad ones. Today was one. I get a deep bone ache that feels like bone pain - when I broke my hand it felt a lot like this for the 2-3 days after I did it. Sometimes I have sharp, stabbing pains that can make me fall. When I have the bouts of the stabbing pain, I get to where I cannot walk at all - like tonight.

I got a cane and it helps. http://www.fashionablecanes.com If I use it even on my good days I seem to have fewer bad days.

I can't work a regular job. I just can't. I'm not on disability nor have I tried to get it, but I quit my job and I'm working from home. I'm doing ok and it lets me work around the foot.

I have sciatica on the other side and I know its from the foot. When the foot acts up, the back acts up.

But from what I read, its very different in different people. Most descriptions I find, I find here.

Re: When surgery does not work

Julie on 2/02/05 at 01:26 (168300)

Skully, you say you 'know it's from the foot, and when the foot acts up the back acts up', but I think it is the other way around. Has your sciatica been evaluated by a doctor and treated by a chiropractor, osteopath or physiotherapist? Strictly speaking, the condition known as sciatica arises from the impingement of the sciatic nerve in the lower lumbar spine. Branches of this nerve, the longest in the body, serve the lower leg and foot, and problems in those areas can be addressed by addressing the source of the problem: the impingement in the spine.
.

Re: When surgery does not work

Geri on 2/02/05 at 11:24 (168321)

Julie: You are so right. I have sciatica also from a bad gait for 2 years. I had an MRI and had buldging discs at L4-5.
also the tts surgery on the right foot. When one is flared up the other is flared up.
I had 3 cortisone shots in my spine for sciatica. It came back. I am now working with a physical therapist ( who is also my personal trainer). She has me doing some pilates, and other exercises for my sciatica. I have avoided more shots by doing this. It is not gone, but some days it is not there as strongly as others. I believe this is helping me. I have not been on a road trip since Christmas, which really helps. I have one coming up early March, which will be 7 1/2 hours.
I have printed exercises that Dorothy has written about and I include them also.
Skully: Do you do exercises for your back? Have you had an MRI? My back does not hurt. I had no idea that I had buldging discs.
Thankyou Julie for answering us. I know from the social board that you just recently had back surgery. I'm so glad you are doing well. Thankyou for your interest in us on the tts. board, and good luck with your back.

Re: When surgery does not work

Marty SLC on 2/03/05 at 12:41 (168399)

Yes, I would say 3 years is a good goal. I'm 2 years post op now for both TTS and PF and I'm still making gains monthly. But I'v had it 8 years so the nerve are in real bad shape.

Marty

Re: When surgery does not work

Marty SLC on 2/03/05 at 12:48 (168401)

Skully,

I would agree with you about the pain radiating up to your hip. I think in the case of really sickly nerves the pain can go up hill.

Marty

Re: When surgery does not work

Marty SLC on 2/03/05 at 12:56 (168403)

http://www.footsmart.com/HealthCondition.aspx?ailmentId=131

It sates this fact about half way down the page

Re: When surgery does not work

Geri on 2/03/05 at 14:10 (168412)

Marty: It is always so good to validate what you experience with an artical like this. It makes you feel like 'I'm not weird, it happens to others'. Marty do you still have a lot of pain if you walk very long? The worst is that I live on tile floors in Florida. Concrete kills my feet and thats what our tile floors are on. We had these before tts so it is very expensive to change them. Thanks for the info.

Re: When surgery does not work

skully on 2/23/05 at 23:32 (169760)

No, the sciatica is on the other side - Yes, its been evaluated - I've got some bone spurs on the opposite side, 2 doctors have said they are almost positive its from the altered gait I have, protecting the left foot. The sciatica is on the right - it started 8 years after the onset of the tts after a bad accident.

Re: When surgery does not work

skully on 2/23/05 at 23:34 (169761)

Yes, they gave me exercises, and I've had xrays and all. I've got bad bone spurs on l1-L4. My back is fine as long as I can keep my foot settled down. Its my right back, and my left foot. UG!

Re: that link

skully on 2/23/05 at 23:37 (169762)

That's the first link that validates feeling better without shoes. I go barefoot as much as I can - my podiatrist is like, wear supportive shoes, and I'm like I can't, cheap flip flops feel better. I can't stand anything on the side of my ankle. I usually don't even wear socks!