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Does the TTS surgery work?

Posted by Dot W on 8/26/03 at 14:10 (128058)

I just received the TTS diagnosis after the nerve conduction study. I have been so careful with my hands since I use a PC all day but never gave my feet a 2nd thought. I am on Nerontin 600 mg at night only so my feet don't keep me up or wake me up every night. I have just been fitted for orthonics which I should get in a couple weeks or so. My doc even gave me some B-Complex vitamins that he said might help with the nerve problem. Still....he said that it all depends upon how much pain I can stand, how much of this can I endure as it keeps getting worse....burning, electric tingles, now accute pain almost 24/7. If the conservative methods don't work, he said I should think about surgery. --- I would LOVE to hear from anybody who has had the surgery. Esp those who are long enough past it so I can hear how the recovery went, did the pain get better, how long were you unable to walk, I mean....the REAL DEAL from REAL patients. Thank you to anyone who is willing to share their TTS surgery story!

Re: Does the TTS surgery work?

Steve G on 8/26/03 at 15:04 (128072)

Dot - you can do a search on the message board for 'Tarsal Tunnel Surgery' - you will get hours worth of reading that will cover - diagnosis, success rates, personal experiences, recovery advice, etc, etc.

Re: Does the TTS surgery work?

Sharon W on 8/26/03 at 15:26 (128075)

I would also try searching for 'TTS surgery'.

Sharon
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Re: Does the TTS surgery work?

Sharon W on 8/26/03 at 16:52 (128082)

Dot,

Here's my story:

I had TTS surgery almost 13 months ago.

You can expect to have a very long incision, probably about 5 to 8 inches long (depending on how much has to be cut). The incision will be swollen at first, even if it is not infected, and you will no longer see that 'trench' between that bump on the inside of your ankle and the back of your heel, because the swelling will make it look poofy. It should NOT be an angry color of red, and you should NOT start running a fever a couple of days after the surgery -- those are signs of infection.

Most likely, however, you won't even get to see it that first week, because your doctor may put you in a splint and tell you not to take it off yourself. I wasn't supposed to touch my foot to the ground at all for almost 3 weeks. I was instructed to put ice on over the splint (I actually used a big bag of frozen peas) for 20 minutes out of every hour while I was awake. I was careful to keep a towel under the peas, to keep moisture off of the splint.

That first day, I was actually in very little pain; my Dr. had injected my foot with Marcaine to numb it. The worst pain really kicked in about 3 days after the surgery. For about a week after that, my foot burned like FIRE, and I was VERY glad I had painkillers! I could definitely feel that my foot and ankle were all swollen up, inside that splint. And my toes were numb -- at first I had trouble even moving them, and sometimes they were ice cold even though it was the hottest part of a Texas summer...

Once I stopped taking painkillers all the time, I realized I still had lots of painful tingling in my toes and forefoot, and lots of burning on the outside bottom of my foot past my heels. I also still had painful tingling in my ankle sometimes, too, plus a whole lot of STINGING in the area near the incision -- but NOT as much burning and radiating pain as I had on the inside of my ankle before the surgery.

12 days after surgery my podiatrist (she did the surgery) took the splint off and put me in an inflatable boot cast. She still did not want me beginning to walk on that foot for another week, however.

After 3 weeks I was sent to physical therapy with instructions to gradually begin putting weight on my surgery foot while wearing the air cast, still using crutches at first, and then a cane, and then just walking in the cast. After 6 weeks, I was finally 'allowed' to start wearing shoes again (well, my Birkenstock sandals, anyway! -- it was longer before I could squeeze my sore foot into a 'real' shoe.)

I've been lucky. 4 weeks after the surgery, I was already feeling a whole lot (maybe 40%) better than before I went 'under the knife'. 8 weeks after the surgery, I was in about 70% less pain than before the operation. At this point, 13 months after surgery, my TTS pain is about 80% GONE.

My scar thickened as the months went by. It is still somewhat pink and rather ugly, but that is unimportant compared with getting rid of all that pain I was in before my surgery. True, not ALL of the pain has gone away, but I still consider my surgery a success. (I think the TTS itself had probably already done some damage to my posterior tibial nerve that wasn't repairable, and I really don't expect to ever recover 100%.)

Good luck to you! If there's anything else you want to know, I'll help if I can.

Sharon

Re: compression socks

lara on 8/26/03 at 19:59 (128105)

Whenever I catch someone considering surgery, I try to write and suggest you try compression socks first if you haven't already. I was looking at surgery but hesitating because I didn't to find four weeks when my family didn't need a chauffeur! The doctor gave me compression socks to try while I waited for the window. They don't work for everyone, but they work for a lot of people (although not a lot of people on this board). For me, they were the difference between a sedentary life dreaming of amputation, crawling around on the floor, and avoiding liquids so I wouldn't have to get up and go to the bathroom, and a very nice life without sports (I took up painting though and it's just as fun) - I can clean the house and do the grocery shopping (what a deal) and other things. I never did have the surgery and most doctors have recommended against surgery for me since I can have a nice life without it.

I tried Vitamine B (it works for some people, not me), and a few other things. The difference compression socks made for me was such that I call them 'magic socks' (which they aren't). I've been offered the Neurontin but have held off on that because I understand one of the side effects has to do with memory, and I'm in school in a program intensive for rote memory. So far I really don't need the neurontin to live a nice life, althoug perhaps if I want a more active life.

Re: Does the TTS surgery work?

Evie G on 8/26/03 at 22:27 (128119)

I will let you know in a couple of months. I had Tarsal tunnel release, plantar fascia release & achilles debridement on Aug 14, 2003. My foot is a little numb right now, but not too much pain. I took pain meds for 1 day and stopped. I just keep icing and elevating. I will be getting my stitches out in 3 days and I will continue to be on crutches until the end of September. I can't wait to see if this has worked. It better because this was my 2nd surgery on my foot in 2 years and there is nothing worse than foot pain.

Re: Does the TTS surgery work?

Pam S. on 8/26/03 at 23:01 (128121)

Dear Dot:
I was where you are back in 99 and I was in so much pain I just jumped right in and had the TTS release without any research or really knowing what I was getting myself into. I really thought the surgery was tough and it took me a year to get over it. I do not want to scare you and if you have time to read past posts there are many who have had success with this surgery. I do think TTS is relatively rare and those who find this board may tend to be those who continue to have problems. Why else would we spend our time reading a foot problems board (Even though the people here are wonderful so now I am hooked...watch out!!!)

My surgery was successful but some of the burning seems to be coming back believe it or not. I have learned on these boards that is you do not have a mass in the tunnel there is a chance that the pain can come back over time. I would recommend you get an MRI if you have not done so. You might ask your dr. about that issue. Make sure your dr. has done many of these types of surgeries. Ask.

How long have you been on the Neurontin?I am still on 400 and it helps alot. Have you tried Elavil? Also effective for nerve pain. The compressions sock is definitely worth a try.

Your doctor's statement that it all depends on how much pain you can stand is true. If your life is really being affected by this and you have tried everything, including physical therapy, then you probably should go for it. Make sure you do tons of reading from here etc. before you make the decision. It is not brain surgery but it is your feet and it sure is hard to NOT be on them.

Good luck, and keep us posted. Pam

Re: Does the TTS surgery work?

Sharon W on 8/27/03 at 08:58 (128134)

Dot,

There are some things I should add to my comments. TTS surgery is risky and it is very important to do ALL the tests to identify as closely as possible what is happening in your foot and ankle FIRST. There are quite a few possibilities for what can cause this type of foot pain, and TTS is several of them.

Your chances for successful surgery are probably better if you have something IN your tarsal tunnel area that can be removed, rather than if you have nerve compression at the tarsal tunnel that is caused by the way you walk and/or by a problem with swelling and inflammation. And there are other conditions that can cause pain VERY similar to TTS, too. Among the things that can sometimes cause very similar foot pain and are (apparently) sometimes misdiagnosed as TTS: nerve damage or 'slipped disks' in the back; plantar fasciitis; peripheral neuropathy; fibromyalgia; RSD (a terrible chronic pain syndrome).

Obviously, if you have surgery for TTS but the TTS was a misdiagnosis in the first place, the surgery isn't going to do you much good!! It's extrememely important to be sure you have the right diagnosis, and the first step of course is to have a thorough clinical office exam by a good foot specialist. (Hopefully you've already had that.) Before surgery is considered you I believe you should ALSO have either an MRI of the foot and ankle or a diagnostic ultrasound, to find out whether or not you have something IN there putting pressure on the nerve (your chances for success with surgery, according to many doctors, are better if you do). You should also go see a neurologist or someone who does nerve conduction testing and have an EMG and an NCV test done, and be sure to ask them to CHECK TO MAKE SURE THERE IS NOTHING WRONG IN YOUR BACK. Having a bone density test (I guess that is done on the heel, I didn't have one) may be worth the time and expense, too.

I said that TTS is 'several' of the possibilities, because TTS can be caused several different ways (as I explained earlier), and there are actually more than one condition called TTS. There is the classic TTS that involves entrapment of some kind (it can be caused by different things) inside the tarsal tunnel or lacinate ligament itself. This entrapment can be caused by something INSIDE the tarsal tunnel, or just outside it, pressing on the poterior tibial nerve and putting pressure on it. If your doctor does an MRI or a diagnostic ultrasound and finds out that this is the case, then There is also another type of entrapment, called 'DISTAL tarsal tunnel syndrome,' involving the same main nerve (posterior tibial nerve) but further down, after it has branched into the somewhat smaller nerves of the foot. The entrapment in this case is typically found in an area called the 'porta pedis.'

TTS surgery is risky. Statistics quoted for success with this type of surgery vary widely (I've seen as low as 42% and as high as 94% -- but I really don't believe the 94%). The recovery period is long and painful; typical recovery takes about 2-6 months, but in some cases it can take up to a year or even longer. There is a risk of scar tissue developing around the nerve as a result of the surgery and the nerve becoming entrapped all over again. And you should know (even if your doctor never mentions this) that there is a significant risk of being WORSE after that recovery is finally over with, instead of better (just judging by posts on these message boards, I would guess that's probably at least 10%, but the actual figure might be somewhat less).

So since the surgery is risky, before surgery is considered, ALL of the appropriate testing should be done, and other treatments should be attempted if they haven't aready been used for PF (orthotics, for example, and steroid injections into the tarsal tunnel area, and perhaps physical therapy or iontophoresis or immobilization (wearing a cast).

And before you make that final decision for surgery, or at least before you actually go under the knife, there are some other things you definitely need to discuss with your doctor. Surgery is a lot like getting married -- SO many young couples in love never TALK about even the basic practical things involved in a marriage, like who will handle what part(s) of the finances, if finances will be combined or if the bills will be shared, how many children you will want and when, etc. etc. etc. All the focus is on having the perfect WEDDING, not the perfect MARRIAGE. Well, it is at least as important to look at the big picture, to plan for your RECOVERY after the surgery, as it is to make sure everything about the surgery itself goes smoothy.

Now I am always telling people here on these boards who are considering TTS surgery how important it is to ASK your foot surgeon, AHEAD OF TIME, what after care schedule he has in mind for you and, specifically, when you will being PT and what he would do if you showed signs of excessive scar tissue development around the nerve.

BEFORE the surgery, ASK your surgeon about the following:

1) What painkillers does the doctor plan to prescribe for you to take home after the surgery and how long does he/she expect you will be needing them? ('Tylenol or Advil should be OK; call me if you think you need something stronger' is NOT the right answer to this question!! Darvocet isn't strong enough for the pain you'll have after this surgery, either.)

2) What will be used to immobilize your foot and ankle immediately after the surgery (cast, splint, etc.) and for how long will she be using it?

3) When will you begin physical therapy? ('I don't usually recommend that for TTS surgery' is NOT a good answer for this question!)

4) For how long will you be non- weight bearing? (That means, 'How long will it be before you can put any weight on her foot?) Will I need to rent a wheelchair, or get crutches?

5) How long will it be before you can put her full weight on it again, and wear a normal shoe?

6) How often will you be seeing him/her (your doctor) for after-care appointments, and how will you recognize if something has gone wrong?

7) If, after 2-6 months, you should start to develop a problem with scar tissue around the nerve(s), how would your surgeon normally handle it? Does he/she use repository steroid injections to soften up the scar tissue, send patients to a physical therapist for ultrasound treatments and/or massage to help break the scar tissue up, recommend certain stretches or exercises to help keep your foot and ankle flexible?

Your doctor might not be able to give you an answer for some of these questions until AFTER the surgery, when he knows the full extent of the damage that the TTS has done inside her foot and how much surgical work he had to do in order to repair it. But at least, he will know that those questions are things you will be wanting an answer to... and anything he hasn't already answered before the surgery, you can ask him again afterward.

Sharon
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Re: Does the TTS surgery work?

stella on 8/27/03 at 10:12 (128140)

well i had my surgery on may 22nd and i am in lots of pain and still can not walk. It is very frustrating. I have had cortizone shots, and on pain killers. I can not afford neuotrin but am on ultram now. But its terrible. I cant walk still in a wheelchair. Lots of tingly and buring sensations. My dr yesterday is sending me now to another dr and he thinks i should see a chiropractor cause my lower back i dont know why that makes any sense. I hope u have better luck

Re: Does the TTS surgery work?

Dot W on 8/27/03 at 10:59 (128147)

I am so sorry to hear about your continued pain. I haven't read much in my searches that is encouraging about this surgery. That's why I was so curious to find an actual person who had gone thru the experience to get an 'up close and personal' view, so to speak. Maybe I'm not thinking straight but part of me really believes that if I am going to continue to have the same kinds of pain AFTER the surgery, then maybe I just need to resign myself to living with this. One site I was reading stated a less than 40% rate of improvement. --- My feet woke me up at 2:30 a.m. this morning. Actually was dreaming of bees stinging my feet!

Re: Does the TTS surgery work?

stella on 8/27/03 at 13:49 (128165)

i still have the compression sock on and an ace bandage wrapped around that. I am hoping someday this will go away. And i am hoping maybe i didnt get the wrong diagnosis myself. I have had a bad back but havent gotten it take care of in a long time. Adjustments and that for scolosis. But that hasnt bothered me in a long time. I dont have money since i havent worked in feb like i said so things are really bad here i cant even afford meds. I have tried public aid and the free meds sites and all that all rejected me. I really hope things work out well for u. I feel mine did not work at all.

Re: Does the TTS surgery work?

Dorothy on 8/27/03 at 17:58 (128200)

Stella ~ Every time I read your posts, I think strongly that you need someone to help you find better help. If things are 'really bad' as you say, why would public aid reject you? Have you made them fully aware of what is going on with you? I would suggest you sit down and write out everything that is bothering you - make a thorough list - and take it to public aid, take it to social security, take it to community mental health and wherever else is in your town. If they can't help you, ask them for a referral to someplace that can. You sound like you have lots of problems but don't quite know how to address them and could use what we have discussed here: an advocate. If you are involved with a church, ask your minister because he/she might be familiar with sources of help. Call your hospital social worker... etc etc. I would also suggest you go to the library and find reading material on being more assertive for yourself because it sounds like you feel at the mercy of everyone. Maybe your best first step is to determine for yourself what you want to happen and what you think should happen for your own well being? Do you have family who can help you? Are you eligible for any 'senior' help?

Re: Does the TTS surgery work?

Mark T. on 8/27/03 at 21:00 (128229)

I battled the pain of TTS for about 5 years and after all the other treatments failed , I decided to have the surgery. I had the carpal tunnel surgery and it took about a year before my hand was at 100% I had my TTS surgery last Oct. The past 2 months I have been pain free.
It took about 6 weeks for my stitches to heal and I was in greater pain than before the surgery. Streaching exercises and ice and little by little, I started walking again on the 8th week. The next 3 months, I still didn't see any difference before or after the surgery. Around the 7th month I started noticing my foot improving.I still do streaching exercises 3 times a day and ice my foot down after work each day. I also believe losing 40 lbs helped a lot too.

I had an EMG and NCV done on both my hands and feet. My doctors tested also ran tests for a pinched nerve in the back and neck before I had the surgeries.

My foot doctor told me that 7 out of 10 people have relieve from the TTS surgery, but if you let it go for too long, the surgery will not help you. After the surgery, I had a tube with a suction bulb inserted in my foot to help relieve the swelling for about a week. All I had was a gauze wrapping and an Ace bandage around my foot and a walking shoe for 8 weeks. When it was time to start to place weight on my foot, at first it was very stiff and felt like it was locked in one position. I gradually streached my foot little by little each day and bought some fitness bands and did foot curls to get the strength back in my foot. I was off work for 10 weeks.

Everybody heals at differently rates. Some people are walking on their 3rd week while others it takes 3 months or longer.

Re: Does the TTS surgery work?

stella on 8/27/03 at 22:46 (128238)

i went to public aid two times and both times they said no. Reason was one my bf was making over 1200 a month so they couldnt help with food stamps, and then i didnt have kids or were pregnant. That really upset me because its my choice not to get pregnant right now. My state is really messed up. Social security i tried and they said rejected me saying that my case is severe and that in 12 months i should be up and back to work for retail sales. I appealed that letter and am waiting to hear back from them. As far as senior help??? I am 25 i dont know what u mean by that. My mother helps me pay rent and thats a big help. I dont know its all too much

Re: Does the TTS surgery work?

Dorothy on 8/28/03 at 00:50 (128254)

I didn't know your age and was just trying to consider all potential avenues for you to get some assistance. Could your bf ?boyfriend? or your mother be of some help by trying to connect you with someone or an agency that might actually help you pull together all the issues that are overwhelming to you. Such a person is called a case worker or a case manager or a social worker - someone like that. For example, if you go to community mental health for counseling and for treatment for depression (if you receive or are considering such treatment and have no funds, CMH would be a good resource for you), you might be able to connect with a case manager and if you get a good one, they can really help you in a lot of areas of life.

I am not trying to 'butt in' in any way to your affairs, but you just sound like you are having trouble dealing with everything and need to sort things out with someone who is knowledgable and who will be very frank with you once they understand what your issues are.

It seems to me that you need to first evaluate for yourself exactly what are your problems and put them in some kind of order of importance - that might change from day to day... and then tackle them one by one. Getting your thoughts organized will help you get some control over some of the problems or at least help you present them to someone who might help. For example, is it pain that is your number one problem? What kind of pain? Where and how often? Is it financial troubles that are your number one problem? Is it depression? I am not asking you to answer ME. I am suggesting that you have this conversation with yourself and then perhaps with someone knowledgeable who can help you work through them.

Re: Does the TTS surgery work?

lauriel on 8/28/03 at 14:59 (128304)

Dot, I had TTS surgery in December and haveonicled my ups and down on this board - if you do a search lauriel under both this site the the surgery site, it may give you some insight. I do feel after reading the all of the posts here on the surgery I am very grateful my rehab has been fairly smoooth (with some setbacks along the way). Even thougth I now feel about 85-90% recovered from the surgery, I still have the zingers for which I had the surgery. I am told this is normal because of dealing with the nerves. Now if this continues over the next several months then I know it didnt help. But I had to give it a try.
Laurie

Re: Does the TTS surgery work?

Terry D on 8/28/03 at 16:45 (128312)

Dot,
I had my surgery by Dr. Dellon May 19th. I am a football coach. I just finished double day practices. I was nearly 100% pain free from the operation...but was still on neurotin so that may have masked the pain. I was in a bandage for 1 week. I did not put weight on it. For the next two thru 6 weeks I was on crutches all the while putting a little more weight on the foot. I also swam and biked nearly every day.
On the 4th of July I was off crutches. At the end of July I jogged a slow lap on our track. By Aug. 11th I was able to stay on my feet almost all day and coach two sessions of football.
My foot still is numb and the scare feels tight and if I over do it I get a little shooting pain. I ice the foot after each practice too. But the feeling is coming back slowly. Almost the entire area of skin on the botom of my foot is sensitive to touch.
I had a ganglion cyst which wrapped around my nerves. I know the pain you are in.
Conclusion, I would make an appointment with Dr. Dellon. He has exceptional experience with this surgery. It's worth traveling to him.
Maybe an MRI would be beneficial too as maybe you have a tumor...which is actually a good thing...Then they know what is causing the TTS.
I believe I'm healing and will be almost perfect in 6-9 more months.
Hope this helps.
Terry

Re: Does the TTS surgery work?

Dot W on 8/29/03 at 10:01 (128349)

I am new to all 'boards' and when I clicked a different button I see tons of responses that I missed the first time. Wow! Thanks so much for all the information! I have a lot to read (I'm printing everything now) and a lot to think about.

I just rec'd the diagnosis a couple weeks ago after the nerve conduction study but the recommendations I've seen here about the MRI, etc., sounds like good common sense. I was diagnosed with heel spurs, plantar fasciatis about four years ago. I also have had sciatic nerve problems on and off for about ten years. (I'm 46 years old.) All the posts here have given me info I can walk into my podiatrist's office with...questions, etc., so that I don't go blindly into the operating room.

Pam asked about the Neurontin. I've been on it for about three weeks. 600 mg just at night. It still makes me feel groggy in the morning even when I take it as early at 7pm. The post from Lara about Neurontin impacting memory is worrysome but so is waking up at 2 a.m. in agony. I guess I will play it by ear for now. I just returned to school this fall so we'll just have to see if I can remember my studies. Perhaps just taking the drug (albeit a large dose) once a day before bedtime will not give me as much side effects.

I should get my custom orthonics in a week or two. I have high hopes that will help. I will check into the compression socks. I hadn't thought of that remedy.

This is such a treasure trove of helpful information!!! Thank you, thank you, everyone!

Re: Does the TTS surgery work?

kristi o. on 8/29/03 at 22:07 (128422)

Dot,

I had a successful TTS release on February 28 of this year. I felt I healed pretty quickly; I got my stitches out 9 days after surgery, and the next day began walking with only one crutch. By 2 weeks, I was sore and limping, but not using the crutches. The doctor told me just to take things at my own pace, so I did.

Most of my TTS pain went away fairly quickly; within a month for sure. However, I was only diagnosed with TTS a few months before I decided to go ahead with the surgery. I agree with Mark, that from what I've seen, the better results seem to occur when a patient does it sooner rather than later, i.e. when there is less/no permanent damage.

By May, I started back at my gym attending step aerobics with my ankle wrapped. I probably pushed this too hard and should've waited a little longer to start back. However, I am 6 months post surgery and now I go 5 days a week with hardly any problems.

My only complaint is that my incision is still a little tender. I only wear tennis shoes when I work out; the rest of the time I wear my Birkenstocks because anything rubbing on it tends to make my foot hurt. However, I consider this a small concession to make considering the amount of pain I was in before surgery. Especially since my Birks are super comfy.

I hope this helps in some way. Everyone's experiences are so different. Good luck!!

Kristi

Re: Does the TTS surgery work?

chris on 9/02/03 at 08:47 (128539)

Hi! Looks as though you have already gotten a lot of responses.

I was dx with PF in Jan '00 and then dx with tts in Aug'00. After many unsuccessful non-surgical treatments I had surgery in Nov'00.

Today, I remain completely pain-free. In fact I just returned from a 2 week trip to Europe where I walked so much I lost 4 pounds! the only pain I had in my feet were from the blisters.

If you have any specific questions, feel free to ask!

Re: Does the TTS surgery work?

EC on 9/04/03 at 08:31 (128754)

I got the double whammy diagnosis of bilateral TTS. I had tried a wide variety of nonsurgical treatments with no lasting relief unless I was in a drug induced haze. I tried ultrasound, physical therapy of every shape and description nothing worked. So after deciding that it was worth the risk of the two bad outcomes from the surery no change or worse pain. I had the release surgery done on first one ankle then after significant improvement from the first surgery I had it done on my other ankle and things went great for the first 5/6 months after the second surgery. I had even with my doctors blessing made it back to running. Then the rug was pulled out from under me and the pain was back. Now a year later it is like I never had the surgery or enen worse. I have now been told by a new doctor that I never should have had the surgery since the MRIs had been clear meaning there was not any sign of a mass or growth pinching the nerve. Also since the first sugery revealed the same thing no growth or mass just a tight nerve canal the second surgery really should not have been done. Now the big question, was the around seven months of little to no pain and normal life worth the risks of surgery?? Yes, if I am going to have to live a much less active life due to chronic pain then I am gla d I was able to have a few more memories not tainted with pain. I can only tell you my story and wish you good luck!!