tss surgery againPosted by Paula P on 3/22/04 at 11:17 (147506)
I first had tss in 2000, on my right foot. I am now going to have surgery again on my right foot next month, I also have plantar fasciitis. I am really praying the surgery works this time. I have tarsal tunnel in both feet, will need surgery on the other foot also, but I am waiting awhile before I do the other foot. I just want to be able to walk again and not feel any pain. Has anyone had the sugery more than once.
Re: tss surgery againPaula P on 3/22/04 at 12:28 (147511)
sorry I meant tts again
Re: ATTN:has anyone had tts to come back after surgery????Pam S. on 3/22/04 at 13:02 (147515)
I have so wondered about this question myself. Has anyone had to repeat the TTS surgery several years down the road. PLEASE all of you who have just had this surgery done do not panic. I am not sure why this happens but mine is coming back also. I am way too chicken to have the surgery done again. I almost feel like the surgery and recovery were so difficult for ME that I will put up with the pain.
Paula, what is your situation? What type of Dr. did your surgery and was there an obstruction. How was your TTS diagnosed - NCV, MRI? Have you tried conservative treatments for the current pain.
I am truly sympathetic to you. You make the decision to have the surgery and expect that you are FIXED. What a baffling disorder this is?????
WE would welcome any of you out there to please respond if you have had TTS to come back and if so what did you do about it. Thanks for posting this Paula!!!! Pam
ps I am seeing my original surgeon this week so ask him these questions and I will report back to you.
Re: ATTN:has anyone had tts to come back after surgery????Elaine T on 3/22/04 at 13:13 (147516)
Being only two weeks post-surgery, I am very concerned about this, because my surgeon made me no promises. He's an orthopedic surgeon who specializes in ankles and feet, and told me from the start that he hopes he will be able to provide me relief. Even the day of surgery, when he told me his findings, and what kind of repair he did, he still said he can't promise that this worked. It is worrisome.
Re: ATTN:has anyone had tts to come back after surgery????Pam S. on 3/22/04 at 13:31 (147521)
I have wanted to post this question for quite some time now but I did not want to WORRY people like YOU who had JUST HAD THE SURGERY. You know, the thing is you, like me we were in terrible pain and you felt you had to do something. At least your surgeon was up front with you about it. Mine was not - that I remember - but I was truly in desparate pain and probably would have done the surgery if he had said my hair would turn orange.....well, maybe.....
I guess the reality is there are no quarantees in life about anything. People who have cancer surgery and chemo have no guarantees their cancer will not come back. Even thou this TTS has really changed my life, I have told myself so many times 'I am not going to die and things could truly be worse...'
I do think those of us on this board with TTS who have gone thru this surgery do caution those of you of our experiences and the trials and tribulations of having this surgery. It is a difficult dance because we do not want to TELL people do not do this it might not work....because I bet there are alot of people out there for whom TTS surgery HAS worked.
I believe you had a varicose vein...right? I think that is really good because it is my understanding that your chances of having much reduced pain are better than mine. I am going to ask these questions once again this week. Is this what your surgeon said to you...congrats you had a vein so you will probably be pain free....????? (Let's try to find some humor in this crazy situation...otherwise we will go out of our minds.right???)
I too have so been where you are....on the couch all these days. The first day you can drive and be out you will feel like KISSING the produce guy in the grocery store!!!!!!!!!!!!!!!!! Write back pam
In my situation...once I get all the facts and feel satisfied with knowing everything I can know and feel I have done everything I can do I need CLOSURE with this craziness. I am just going to meditate, chill whatever and try to move forward with my life even thou I am truly bummed out. I just need to understand this a little better that's all.
Re: Elaine is thinking positive thoughts...positive, positive, posPam S. on 3/22/04 at 13:36 (147522)
Positive thoughts and HEALING THOUGHTS!!!!!!!!!!!!!!!
Re: Just back from the surgeon, and I am walking!!!!Elaine T on 3/22/04 at 18:01 (147539)
Thanks, Pam for your messages. My splint is off, and the stitches are out. He put a pressure bandage on with one of 'those' shoes, and told me to walk, walk, walk, unless it is painful. It is not painful, and I am walking!
He said at this point I may swell up again, therefore, I'm on an anti-inflammatory, and continuing to keep my foot elevated. It's also to reason for the pressure bandage (swelling). I now have to start flexing my ankle, and if the bandage comes loose, re-wrap it.
One week from today I remove the bandage and start exercises that he gave me. See him again in two weeks.
He told me that there were varicose veins compressing three nerve bundles, so he had to do 'a lot of work' in there, down into my heel. He said it will be months before we know if this was a success, because nerve regeneration is a very, very slow process. Although he is very hopeful that he fixed my problem, he makes no promises. I admire him for his honesty.
Re: tss surgery againTerri on 3/22/04 at 20:10 (147559)
Hi Paula. Yes, my dr did tell me right up front that some people do need to have this done again, it doesn't always work for whatever reason. I'm only hoping I don't have to go thru it again myself down the road. Good luck to you and I hope you have wonderful results this time around.
Re: Just back from the surgeon, and I am walking!!!!Pam S. on 3/22/04 at 22:06 (147563)
That is great Elaine!!!! Do you know if you will have any physical therapy to prevent scar tissue? Take it easy and I am glad you feel encouraged. pam
Re: tss surgery againPam S. on 3/22/04 at 22:11 (147564)
I hope I did not distract from your post!!!! How selfish of me to horn in with my issues!!! I really meant my post to be an addendum to yours. I am really sorry you are having problems again. I hope we hear from some other people. Hopefully we can help each other. Terri, I hope you do not have re-peat pain either!!!! Take care, pam
Re: ATTN:has anyone had tts to come back after surgery????Paula P on 3/23/04 at 10:01 (147599)
Pam my surgeon specialzied in foot and ankle surgery plus I asked him if he had ever done tts sugery. He did not give me any guarantees but at that point in my life I just could not take the pain anymore so I opted for the surgery. My tts was diagnosed NCV and MRI. Before the surgery I was taking cortisone shots, pain management which basically is a drug management to help alleviate the pain, it did not work. I now have no choice but to try this again, I have too much difficulty in walking and now have plantar fasciitis which is also very painful, so now I will be having surgery to correct both problems on my right foot. I am praying this time the surgery will fix it, but the doctor cant give me any guarantees. Eventually I will also have to have my left foot done.
Let me know what your doctor tells you after you visit him.
Re: Just back from the surgeon, and I am walking!!!!Paula P on 3/23/04 at 10:05 (147601)
Elaine, I am glad to hear you are walking and there is no pain. I hope you stay pain free forever. Please keep me posted on you progress
Re: question for PaulaPam S. on 3/23/04 at 13:20 (147619)
I have a few more questions for you:
l. What were the findings from your first surgery ie. was there a mass, a varicose vein?
2. Have you considered consulting with this L. Dellon who is often spoken about on this board. He is in Baltimore so I do not know how close that is to you?
3. What did your surgeon say about the chances of this working a second time around?
4. Did you get any relief from the first surgery. one year, one month?
I will e-mail you back after my appt. tomorrow. pam
ps I have PF too and that can cause burning pain also. have you had pt for your PF? sounds like you have really tried everything. I FEEL your pain!!!!!!!!!!!!!
Re: question for PaulaPaula P on 3/23/04 at 22:06 (147650)
I did not have a mass or varicose veins, it was just releasing of the nerves. No I have not considered speaking with L. Dellon as I live in Florida. This is a new surgeon, my original surgery was done in Pa. He said there were no guarantees that this it would work this time, but I have no choice as I need to walk, plus he will be also trying to correct pf. I felt relief for about one year. I had my surgery in 2/2000 and now I have to have it again. I also have tts in my left foot. Pam I am just praying it works this time. I have tts since 1998. I should be having surgery in about 4 weeks.
Re: tss surgery againPaula P on 3/23/04 at 22:07 (147651)
thanks terri I am praying the surgery works this time.
Re: tss surgery againPam S. on 3/23/04 at 23:21 (147652)
I am truly going to PRAY for you that this works for you this time. I am going to pick my surgeons brain for as long as I can (which will not be long). BUT I CAN walk, not for fitness as I swim now, but I can run errands and cook etc. but by the late afternoon I am on ice. Some days it is worse than others. Sometimes I think wearing a shoe rubbing that area makes it worse???? It sounds like you are desparate and not really functioning at all if you cannot walk. I think this is just awful. I really do not understand WHY this cannot be fixed.
My feeling is that it is problematic when there is no defined mass to remove. I wonder if you wear othodics...I did for a good amt of time (because every dr. tells you that is what you should do especially if you have PF) until I realized they made my nerve pain ten times worse. Mine is bilateral also but once I gave up the orthodics the left foot got better over the course of two years. Stay in touch. I do not think I have posted with anyone who has had TTS come back....???that i can remember. pam
Re: tss surgery againPam S. on 3/24/04 at 10:49 (147666)
I will have nothing to report to you today because my appt. was not on the books for some reason and who knows when I will be able to get back in there. BOO HOO.. Sorry pam I will be on vacation next week so more later on. Take care, Pam
Re: Re(vision)elliott on 3/24/04 at 14:31 (147682)
Paula P (and Pam S too):
Sorry about your recurring TTS symptoms. In reading over the thread, I get the impression you are viewing a second release as another try that hopefully will work this time around. I don't blame you for hoping, and I wish you well. But I think you should know it's not just another try. For revisions, the odds of success however defined go down and the odds of potential complications go up (BTW, I don't think this depends on whether an obstruction was found initially). For example, check out this link:
(It may be a good idea to obtain that article before surgery, e.g., by sneaking into a medical library or asking a medical friend to do it for you, or else by paying exorbitant article retrieval fees.)
Before a second surgery, I think it is important to ask yourself what went wrong with the first one. Did you originally get more or less complete relief and only then it came back? Was there perhaps an inadequate release (e.g., due to technique, or else along one of the smaller branches that initally was left untouched)? Or what? It seems that if there was an adequate release the first time around, a standard second release is far less likely to work; see
This conclusion may even follow from common sense reasoning: your flexor retinaculum (laciniate ligament) has been cut away and the nerve freed; what are they going to release if you're already released? Scar tissue? Well, scar tissue increases with each surgery. (I believe it was the above study that led one of the authors to include other options such as a vein wrap as a barrier against scar tissue forming against the nerve and, if that fails, nerve implantation devices. It is my understanding that the vein wrap procedure has a median of around 75%, meaning that 50% of the patients get at least 75% better. Do those odds sound reassuring or deflating?)
Paula, in your case, there are other complications too, e.g., the PF and the bilateral symptoms. PF often goes away with time and conservative measures as talked about on these boards, so it may pay to take it slow with regard to surgery for that. Believe me, I know what TTS pain is like and the desire to just do something. But you have to try and reason out your best course of action, whether that means waiting and trying other things, or perhaps having a different surgery, surgeon, or opinion than the one you anticipate. Regarding not considering seeing an out-of-town doctor, the immediate inconvenience and increased cost will pale in comparison to what you could end up facing for the rest of your life if that surgery doesn't go well. That's not to say you *have* to go out of town, only that you should keep it open as a possibility if the circumstances warrant it. Florida? There is a big TTS name in Birmingham, Alabama--JS Gould, who has written extensively on PF, TTS, and even their interaction:
So, what can you do short of surgery? If I read you right, you seemed to have an adequate release and then had a recurrence. That suggests either scar tissue (more likely in the first year or so), or else biomechanical causes that haven't been corrected. I presume you've tried one or two pairs of orthotics to no avail.
I do have one easy suggestion: change your footwear immediately to something rather different (even if in a category that according to the rules is not meant for your kind of foot) and see if you have any luck with that. When I was in terrible TTS pain and couldn't wear shoes, I discovered some hand-made wooden Swedish clogs. Despite their having a very high heel I thought would never work for my flat feet, they helped me get through some tough times. The open back is great for TTS, the wood is believe it or not soothing while supportive, and I believe the high heel takes some pressure off the PF too. Do a search here on 'Bastad clogs' and you'll dig up my comments. If interested, do a web search on them and you'll dig up several mail-order places that carry them. All you're risking is some shipping charges. Good luck.
Re: WOW!!! Elliott, thank you!!!Pam S. on 3/24/04 at 15:35 (147685)
I am copying your post as fast as I can. I am getting ready to go out of town so I do not have time to respond. More importantly, I hope Paula can continue posting with you since her surgery is so close.
This is just wonderful information and I REALLY appreciate the time it took you to post this. I think I am glad my appt. WAS cancelled today. I can go back in armed with this info. and dazzle everyone!!!! I will stay tuned to everything you all post. Thx, Pam
Re: Re(vision)lauriel on 3/24/04 at 16:21 (147692)
Elliott, I have to agree with the first thing people should change is their shoes to find some relief. I found that certain shoes even tennis shoes and the way it supported my arch (I have a flexible flat foot) made my TTS much worse. I do like clogs though! they have just the right arch support. many people hre have had success with birkenstocks. All all an say is OUCH, they were horrible, so it is a matter of finding what works.
I had TTS surgery in 12/02, I still get occasional sharp pains, but nothing lie I had before the surgery, except I do have PF now - it was starting just before my surgery and has progressed, I have been doing a lot of differentthings to relieve the pain that has helped a lot.
Re: Re(vision)Paula P on 3/25/04 at 11:08 (147750)
Elliott thanks alot for the advice. Since my sugery 4 years ago I have had NCV test, mri and a bone scan. All seem to point to having the TTS surgery again. I have changed my shoes I now wear birkenstock clogs which do seem to help, I have also worn orthotics, pain management and all sorts of medication. I am going to show these articles to my doctor, I should be having surgery again in about 4 weeks, I have TTS in both feet, but only having surgery on one foot now.
Re: Re(vision)wendyn on 3/25/04 at 11:32 (147752)
Elliott - excellent, impressive research.
Your facts confirm my gut feeling: a second TTS release is something to be very wary of. I've seen far too many people on this board go from surgery to surgery and just get worse.
Re: Re(vision)Henry C on 3/25/04 at 12:06 (147756)
I will also have to fully agree with Elliott. My first TTS release was done by one of the top foot and ankle experts in the country. My TTS was a result of another injury and there was no mass applying pressure on the nerve. The surgery did help alleviate the pain associated directly behind the ankle, but shortly after the surgery, I developed a new pain on the bottom of my foot.
After waiting about eighteen months, I elected to have a second surgery, which involved the vein wrap procedure. That surgery also failed to alleviate my TTS pain. I firmly believe that if a mass is not applying pressure on the nerve, that TTS surgery is almost useless. At least it was in my case.
After nearly seven years of suffering, I elected to have a peripheral nerve stimulator implanted into my leg and it worked. Many TTS nerve related injuries can involve stretching of the nerve in which case a release has no effect in correcting the problem.
Re: Re(vision)elliott on 3/25/04 at 13:53 (147771)
Thanks, wendyn. Actually, it's not just research. It's also based on extensive conversations with TTS docs, as well as chitchat with the patients in the waiting room. One patient I met was a lady from PA, a blue-collar worker who had to stand on cold concrete all day long. She had had two TTS releases, each from a different doc, each of whom blamed the other for her continuing problems, which by now included nervy pain running all the way up to her knee. Fortunately, hers had a somewhat happy ending: she had a third surgery, a vein wrap, which in fact gave her, in her own estimation, 75% improvement, enough to allow her to cope and get back to work. She was grateful for the outcome. (I guess the moral of the story is, don't stop at two; get *three* surgeries. :-)) She was wearing shorts and seemingly not at all conscious or concerned about the rather noticeable scar running along the side of her leg from her foot all the way up to her knee.
Re: Re(vision)elliott on 3/25/04 at 13:59 (147772)
Paula P, what I'm trying to say is, even if you for sure have TTS, revision TTS surgery is still a big decision. It may pay to get another opinion from a doc or two who have had experience observing loads of initial failures. They may have a different perspective as to whether they view you as a good candidate for surgery and if so what that would entail. Any chance you'll try those Bastad clogs?
Re: Re(vision)elliott on 3/25/04 at 14:35 (147774)
Henry C, I'm going to differ with you a little bit if that's OK. Firstly, it should be made clear that an initial TTS release can help even without a mass present; see, e.g., the last sentence in
The lead author, a past president of the American Orthopedic Foot & Ankle Society, trained under the same doc as yours did. I would guess the reason the release still helps with no mass is that it gives the nerve a bit more room to move. (BTW, an MRI doesn't always show a mass that happens to be there and so is not definitive as to whether to opt for surgery.)
Second, regarding the vein wrap, it is precisely that very case of when there is no mass present but instead scar tissue snakes over the nerve that a vein wrap (rather than just a standard re-release) has been shown to be appropriate; see
Your case was far from standard. With hindsight it is of course easier to say now you didn't need the vein wrap. You are lucky indeed you didn't get permanently worse from the additional surgeries. If I recall your earlier posts, that very same doc also brought you your eventual cure, which appears almost miraculous.
Speaking of which: are you completely painfree? Are you giving thought to having the PNS removed, or do you still turn it on now and then?
Re: Re(vision)Henry C on 3/26/04 at 06:51 (147802)
I still use the stimulator about one or two days a week. I have a desk job and if I am not standing still in one place for to long it does not bother me. It is just these circumstances that I have decided to keep the nerve stimulator.
I have just started back to the gym, which includes a vigorous walking program, so I imagine that I will be using the stimulator a lot more then I have been.
Re: tss surgery againlizzie on 1/19/05 at 17:25 (167552)
I jusy wanted to tell you that i also have tts and plantar facitis. I have had 5 surgries on my foot. The frist one was when i was 11 know i'm 18 and the doctor wants to do more surgery. Anyway I just want to say i know what your going through.