I was told my PN was idiopathic. :rolleyes: 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.

I would agree with further testing.
 

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!

Really? I imagined being on crutches for a week or so at least. That's good to hear!

It does sound as if we have many of the same issues. Good luck with your hand surgery. It was a blessing for me and I hope it has as good a outcome for you as it did for me. :)