I was diagnosed with TTS in March of last year after a year and a half of treatment and testing. I had the surgery November of last year and I could not be happier! I'm not sure who you are considering for your surgery (if you are even considering surgery), but MY advice would be to skip the ortho. The doctor that did my surgery is a reconstructive plastic surgeon. I know it sounds crazy. At least I thought it did. Plastic surgeon? Come on. Let me tell you, she is a genius. She has worked with many diabetic and non-diabetic patients with PN. She has done a lot of research and is extremely knowledgable about PN.

About the surgery: honestly, my pain is no where near where it was a year ago when I was diagnosed. I'm only six months into recovery and she said that I should not even begin to judge the effects of the surgery for 12 months. I may not be fully recovered, but let me tell you: if this is the best it gets I can live with it. This is much better than before.

After seeing this doctor I found that I also have TTS in my other foot that I thought was fine. Here, my other foot was just not as bad. It was determined after the sensation and strength tests that I had it in both feet.

Then I thought to ask her about my hands. Five years ago I began complaining to my medical doctor of pain in my hands. They tested me for carpal tunnel and said I didn't have it. I've dealt with the pain for so long, I never thought to ask her about it. That's when she told me that I had PN.

The TTS is only the location of the nerve compression. Just like CTS is only the compression of the nerves in the carpal tunnel, TTS is the compression of the nerves in the tarsal tunnel. She said that the EEG (I think that's what it was called) is not really the most accurate form of diagnosis when dealing with PN and it probably was just not showing up yet. She said if I would have that same test done now I would fail it miserably.

Sorry that was so long. Hope some of it helped. I'd be glad to chat with you about all this. I remember wishing I had someone to talk to when I was first diagnosed. Well, that's why I'm on here. I'm still looking for people who know what I'm going through!

Take care.

I had carpal tunnel surgery shortly after I was Dx with PN in my feet. To me a light came on but apparently not to the neuro doc Dx'ing me. He went ahead and tested my feet (nerve conduction study) because I was complaining of symptoms at the same time as he tested my hands for surgery. I'd had carpal tunnel syndrome for most of my adult life. Which seems odd to me unless there is a problem that I've inherited somewhere along the line. That is, that there's a problem anatomically that I'm not aware of.

So it would seem I need to find out or rule this out...however they may be able to do it.

See, that is the part that I do not understand! I just dont understand where this came from. It was a little over five years ago that my hands started hurting. Then a little over two years ago when my left foot began hurting. They just started hurting. I had no trauma. No illness. I'd been tested for thyroid problems and diabetes. Nothing.

I just want someone to tell me where it came from! All I've heard so far is that is is probably genetic. I'm just concerned because I do not know if the surgery I just had will cure me forever, or if it will cure me for 10 or 15 years. I'm only 31 and I have kids, a job, etc. I need my hands and feet to work! If it doesn't work in 15 years, then what do I do?! It would just seem to me if I could find out what was causing the PN I could try treating it from that angle.

Not to pry, but have you been given an explanation as to your PN?

I was told my PN was idiopathic. The neuro I saw didn't go past the basic tests to rule out auto-immune disorders or diabetes. So I don't really know where it came from or why.

With the carpal tunnel surgery I know people that have had the surgery twice. So I suppose it could be done for the TTS as well. It's not a one time thing in other words. If you have it once it doesn't mean it can't be done again.

I'd like to know more too. Because at this point I feel like we're throwing meds at just the symptoms without identifying or treating what might be an underlying cause. And there is a time factor to carpal tunnel syndrome I know...don't know if it applies to TTS too, that is if the condition goes untreated for long enough permanent nerve damage can occur and then the surgery is of limited value. Though with what I'm learning here there really may be no such thing as permanent nerve damage.

My doctor also told me that I could develop permanent nerve damage if untreated with my TTS. That is why she wants to do my right foot before the severe pain kicks in. I've already shown sensation loss and muscle weakness in that foot. I go for that surgery on the 8th of May.

I see her tomorrow about my hands. My hands are really bad! I'm thinking about asking her to do my hands (or one hand, I don't know what this surgery entails yet) on the 8th instead of my foot. I'm already scheduled for surgery, so why not just switch limbs?

This is crazy. I just want to figure out what is wrong and fix it. I'm not really sure how the PN could be hereditary because my grandmother is the only one that I know that also suffers with it, but it is because of her diabetes. I do not have diabetes, so I just do not understand.

I think I'm going to go back and see my regular doctor and have him refer me to a specialist to do more diagnostic testing. I've just been focusing on getting rid of the pain and I think it's time to focus on the problem.

And a good source of posible tests are the Liza Jane spreadsheets:

www.lizajane.org

Also a good way to track test results over time for patterns, and to get doctors to consider things that may be outside their immediate awareness.

Both carpal and tarsal tunnel may evolve simply due to local compressive forces on the nerves in those areas--admittedly, there is less space in those areas for nerves to pass through than in other areas, so the wrist and ankle areas are more prone to compression--but in my experience, many cases of carpal or tarsal result from other conditions, and therefore decompressive surgery may be of limited value if the other conditions are not addressed. For example, hypothyroidism is often associated with carpal tunnel; there seems to be a mechanism, as Mrs. D has described, in which incompletely metabolized waste products resulting from low thyroid function lodge in the area of the wrists and lead to nerve symptoms--normalizing thyroid function helps.

Many cases of carpal and tarsal tunnel probably are related to the double crush phenomenon with nerves--a compressive force is applied to nerves already compromised by some other condition, and while neither condition alone produces major symptoms, the combination of both does:

http://www.tifaq.org/archive/double-crush.txt

http://www.ncbi.nlm.nih.gov/pubmed/1...ubmed_RVDocSum

Did they do a nerve conduction study on your hands? What does that show? My feet show permanent nerve damage...or did back then. I'd like to see what a study shows now. If there's permanent nerve damage the surgery will relieve some of the symptoms but any symptoms tied to the nerve damage will still be present after the surgery. I'd request they find out which of your limbs is the worst and do that one first. The hands take about 6 months to heal back to 100%. Full strength returning and all that. Don't know how long the feet will take. But I'd want my feet well healed before they did my hands. And I'd do that first unless the damage is more extensive in my hands. Cause there's no way you can walk on crutches with a hand that's recently been operated on. Can your foot wait 6 months post CTS surgery? This is what I'd be discussing with my doctor(s).

I guess it would be a case of doing the worst foot or hand first. And that would be based on testing. You're going to have a rough row to hoe for a few months. But afterwards things will be much better. It's well worth the surgery...at least it was for me.

Thanks for the timely links, glenntaj. These articles have given me much food for thought and something to be explored and either ruled in or out. Now to find someone well versed in this dept...someone I can trust to know what they're doing and what they're looking at as far as testing goes.

I had no crutches with my TTS surgery. I was walking that day and every day after. I only missed two weeks of work after the surgery. I'm six months out now and I'm really doing well with it.

My hands were just tested today (for the first time in five years). They are bad. I have no feeling at all in the palm of my hand or wrist. The test results are horrible. The scheduling people were out for the day so they are going to call me tomorrow to schedule the first surgery on my hands. She is going to do them one at a time and do them about six to eight weeks apart. The results from both hands were pretty similar, so she is going to do my left hand first because that is the one that causes me the most pain. I'm hoping these surgeries are as easy as my foot was.

I'm still scheduled to have my right foot done next week. After that I'm having all my records sent to my medical doctor and I want to get to the bottom of this.

Oh, and the one doctor mentioned my PN being idiopathic. I guess we may be in a similar boat!