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You can call me Mr. TTS

Posted by elliott on 7/09/01 at 13:08 (052546)

Hi, everyone! I stumbled onto this forum after a web search. I've read the posts here, and am sorry for your troubles. I'm sorry for my own too. Here's my short story: I had bilateral athletic TTS, bilateral TT release, bilateral complications.

Here's the long story, if anyone's interested. (I found it useful reading some of yours; I hope you find mine likewise. Perhaps you will be able to answer some of my questions and me some of yours.) I have a desk job. I started running around '92, and I just loved it. It was my great escape from life's stresses. Weight dropped from 190 to 153. I was in great shape and felt like a lean mean running machine. While nothing special, I got good enough to take a few 5K and 10K age-group medals. Compared to many others, I never ran excessive weekly mileage. About 5 years ago, shortly after using a different pair of running shoes that felt too harsh, I felt something pinch on the medial side of my right foot during a run. Next thing I knew, something was tugging at my heel, and I had burning and numbness along the medial aspect of my foot, ankle, heel and radiating up the calf. This pain would last all day even after the slightest exercise, even after prolonged rest. The usual RICE (if you don't know just ask) didn't work. Went to an ortho who said maybe it's PF and gave me a cortisone shot. He didn't impress me. It worsened over the next two years. I went to a pod who was recommended by a running group; he had sports-oriented diploma prominently displayed. Payed out of pocket to see him because I thought he would know it all. I told him I think I have TTS, he said he thinks not (he was wrong), he taped my foot (which did nothing), and said that given my flat feet, he thinks I should try the $300 orthotics he'd order for me. I said I'd think about it, but I never came back. Went to another pod, older and with better science background, although less attuned to runners. He ordered me hard orthotics. It didn't work. He tried cortisone shots; it didn't work. He was trying to decide whether to send me to a big nerve guy or a big orthopedist. He sent me for an MRI, which showed posterior tibial tenosynovitis (tendonitis of the outer sheath of the posterior tibial tendon). He sent me to a foot & ankle orthopedist in a prominent practice he held in very high regard. Due to my persistent complaints about burning and numbness, ortho sent me to get a nerve conduction test (the standard NCV/EMG), which showed me strongly positive (scores above 7) in both the medial plantar nerve and lateral plantar nerve of the right foot, and beginning signs of TTS in the left foot. Surgery was scheduled to perform both a TT release and a posterior tibial tenosynovectomy (where they open up the tendon and clean out the inflamed tissue). Surgeon told me that if I didn't do the tenosynovectomy now, there's a good chance I'd need to do it later. He promised me it wouldn't weaken my foot and that I could return to running shortly. Shortly after the nerve conduction test but before surgery, my left foot, which didn't feel quite right for a few weeks, broke out in tingling at the medial malleolus, sometimes radiating to the heel and medial four toes. (Maybe this ironically was caused by the hard orthotics meant to help the first foot, but I'll never know for sure. It could've been my running gait.) It seemed almost too coincidental that the surgeon just didn't believe me. Had surgery on right foot as described in Aug 99. Tortuous veins were observed. Wore uncomfortable cast for 3 weeks with foot in plantarflexion, then another cast I could weight-bear on with foot in dorsiflexion. Surgery didn't go well. Most of the burning and numbness disappeared, but I still had mysterious medial and heel pain, and much worse, my foot was so weak on medial side where it wasn't before and often near collapse, perhaps because he messed up my tendon, which, despite the MRI, had no visible physical weakness before surgery (e.g. through single-heel rise test), or perhaps because a mess of scar tissue was created, which I'd attribute to poor technique (second MRI was somewhat inconclusive). In addition, my metatarsals got crushed by too tight a first cast, to the point where the fourth metatarsal almost certainly had a stress fracture (although xrays were inconclusive), and now, two year later, I have either a neuroma or something else in that spot. The pain there has lessened somewhat with constant toe stretching exercises. I am still struggling with this foot. Trying to run on it (after doc's OK) didn't help either, and the last time I tried, 8 months ago, right after turning 40 (gulp!), something else tore from the medial side of my foot at the spot which felt all wrong after surgery to the front top of my foot. Before this last thing happened, went to see a big name nerve surgeon mainly for left foot, whose supposedly infallible, 100% accurate machine, considered more experimental by others, missed TTS in my left foot (and possibly right foot as well). Went to a second ortho, another big TTS name, one more attuned to athletes who trusted my complaints and first nerve conduction test. MRI on left foot was negative. Performed TT release on left foot July 00. Observed one of the largest veins pressing on my nerve he had ever seen in his career in connection with TTS. Due to continued troubles with right foot, ordered a bone scan which detected a navicular stress fracture in right foot. When I got that who knows, but there is evidence I had it close to the time of my first surgery (xrays with first surgeon after surgery because of metatarsal problems), but whether I got it before or after (or even during!) surgery is unclear. Could barely walk. Second ortho told me to try a boot cast for 4 weeks, for second time. Boot cast was so painful to heel (pain I was suspicious was caused by entrapment of the medial calcaneal nerve, entrapment possibly missed during surgery) that I chucked the boot cast after 3 weeks. Took forever to heal, but foot is not much better. Two months ago I was a hair away from being crippled; now it's somewhat better, still weak when I step a certain way, as if it will collapse, but what exactly went wrong is still unclear. In the meantime, although I had some initial relief in left foot, I felt a tinge just forward of the medial malleolus in this foot after surgery, but it was initially livable. Tried briefly to run again (with doc's OK), which didn't help either foot. Tinge in left foot was getting worse. I also noticed I couldn't wear some shoes. The tinge worsened into sometimes terrible localized tingling to the point where now I can't wear just about all my shoes, including walking and running shoes; if I do, even for a few minutes, the tingling becomes unbearable and lasts all day. A hard shoe is better than a soft shoe, and must not touch my sensitive area at the ankle. Complicating this is that my right foot has different needs than my left foot (cushioned heel and shoe is better than hard). So my general pain level is lower after surgery on left foot, but I can't wear any shoes. Have one pair of boots which are OK. In case the vein in left foot is the culprit and if only it had been stripped at time of surgery, second ortho told me that veins as a matter of course are not usually stripped during a TT release because that can cause yet more problems, and it's not a certainty it is the cause of the TTS. Suggested I go to a vascular surgeon for an opinion. Went three weeks ago to big name vascular surgeon who said stripping the vein is relatively routine, but he didn't think the vein was the cause of the TTS, and he may be right, although I gathered he didn't know much at all about TTS, his patients being mostly elderly needing vein stripping. I have had two more nerve conduction tests, the last in February 01, in which I tested positive for TTS in both feet, with the right foot's numbers virtually unmoved since the first pre-surgery testing, and the left foot rising to high levels after an initial dip following surgery. Second ortho was considering a re-release of right foot, but after problems with his own (er, my) left foot, he's reluctant to deal with me at all, thinking I may have some as yet undetected neurological disease and he can't help me. I don't agree with that because my condition was clearly running-induced, and because I had a complete bloodwork evaluation showing negative on all the standard tests. (But now my left hand is having some relatively minor nerve trouble; I attribute it to either using a right-handed computer mouse or to the crutches I used following the first surgery, which gave my hands a big beating. I'm not sure of anything anymore. I sometimes wear a carpal tunnel brace. We'll have to see how this plays out.) He said I'm welcome to go to someone else, but said I could come back after bone scan on right foot (which this time was negative). I haven't gone back yet. Not sure what to do anymore, dejected about life and no running, sorry I had surgery and yet wondering if more could provide relief.

Not too long ago (exactly when is unclear), I developed sciatica on right side, which two months ago became unbearable. MRI showed L4-L5 bulging disc pressing on sciatic nerve. Exactly what caused this (my guess is my bad right foot, but big name neurosurgeon doesn't think so) or how it relates to TTS is a bit unclear. Neuro gives my only 20% of getting better and 80% of getting much worse and needing surgery. Had low opinion as to getting cured by physical therapy or chiro. Well, I'm not in the mood right now for that, so I started taking power yoga, which is helping. There are poses which might help the feet as well, but it will take much time. First impressions are that the left foot might be getting relief at the ankle but possibly at the expense of spreading the pain elsewhere, but at this point I want to try something rather than nothing.

Other things I've tried:

Neurontin: did nothing.

neuropathy gel from Florida: cuts the pain level in left foot down perhaps 30%, but is of limited use, because I don't need it if I don't wear shoes, and it does not provide enough relief if I do. I use it on bad days and before or after I do wear shoes.

Other gels: two others from same company which didn't do anything for either foot

magnets: just started with them. Never thought I'd be trying stuff like this. I wear seven 1 5/8 inch bionorth 2450 gauss magnets on right foot placed on every pain spot, and one on left foot below medial malleolus, although usually anything touching that spot irritates it, so I either don't wear it or place it lower down. I realize there's no hardcore research backing up their efficacy, but they do seem to be doing something. Perhaps it's the positive attitude of the hope it's giving me that it might be working. Whatever. We'll see.

I'm hoping that a lot of time off will lead me to recovery, but I have strong doubts, given it's two years later on first foot and one year on second foot. At least first foot is bewtter than it was two months ago. I'm generally very depressed, both because it looks like I'll never run again--something which meant so much to me--and also because both feet are a mess. I have some better days, and I occasionally can ride the rather expensive (for me, at least) road bike I bought to replace the running, but not always. Sometimes I feel like each ride will be my last, but I'm not even sure which foot will be the one to end it for me. But I need some exercise, for my sciatica if nothing else.

Well, that's my story and I'm sticking to it.

Re: You can call me Mr. TTS

Jack H. on 7/11/01 at hrmin (052777)

Read your story and here's mine. Started having pain in 1988! Right ankle only. Had torn it up in the 60's playing softball but no problems since then until '88. Went ot podiatrist. Made me orthotics which costs a bunch and did nothing. Orthopedist injected it several time. Had first Tarsal tunnel release in the 92. Helped for a year. Then big time pain. Same orth did second release, but not til 95--found artery grew branch into the nerve. Asked me if it didn't hurt. I said I had told him 'yes, but only every time my heart beat'. Second surgery helped for another year. In '97 had my third which was incredibly painful and really only helped for about six months. My FOURTH surgery is scheduled for 7/31/01. Wish me well.

I have nothing but pity for anyone with TTS. It's incredibly painful at times and very debillitating. Pain pills help a bit. Neurontin and celebrex did zip. Like to hear from any other sufferers.

Good luck.

Re: glad to make *someone * feel better :-) (nm)

elliott on 7/11/01 at 10:43 (052793)

.

Re: I'll call you Mr. One-Footed TTS :-)

elliott on 7/11/01 at 10:57 (052795)

Sorry for your predicament; I really am. Every time you have repeat surgery, the risks of complications and weakness get higher, and in the case of TTS, the expected results are worse, in great part because it is more likely that scar tissue will re-form over the very same area released, again trapping the nerve(s).

Did you ever hear of and if so consider a vein wrap? It was perfected only in 1989 and only a few places in the country do the procedure. For those with failed initial TTS surgeries who seem appropriate candidates either before or due to what's observed during surgery, what they do is, rather than just repeating the same TTS release, they take a saphenous vein from your lower leg and wrap it around the nerve(s), helping to prevent scar tissue from re-forming there. Of course, results are not perfect nor is 100% relief likely, and it leaves one with a hideous scar running up the side of the leg from ankle to knee and can leave one with permanent discomfort there as well, but as a last resort, it has saved some from lifetime disability, and might be a better shot than just another release.

Re: You can call me Mr. TTS

Lori R on 7/11/01 at 11:58 (052810)

Elliott,

Sorry to hear about everything you've been through. I have had problems/pain in both my feet for over 4 yrs. I was finally diagnosised last month with TTS. Prior to the diagnosis I had never even heard of TTS. I am currently looking for a new ortho surgeron as the one that diagnosised me doesn't want to deal with me anymore because I was asking too many questions. Apparently he is a very big name doc and works on many high profile athletes and doesn't have time to deal with little old me. I wanted to respond to a comment you made in your original posting. You mentioned starting to have problems with your hands, I also have problems with mine. The ortho surgeon I'm looking to replace said that often people who have TTS also have carpel tunnel syndrome in their hands. He did not give any reason or go into detail and I haven't seen anything posted here but in my case it does seem to be true. I've been concentrating on my TTS because it is worse and limits me more than the hand problems but I would like to find out more about the relationship between the two.

Good luck, Lori

Re: to Lori R. - new ortho

Andrea R. on 7/11/01 at 12:43 (052815)

Lori,

Try http://www.aofas.org to get a list of the foot and ankle orthos.

Re: relationship between carpal and tarsal

elliott on 7/11/01 at 12:45 (052816)

My understanding is that there likely is no relationship if there was a specific cause as to the nerve entrapment, especially trauma (e.g. ankle or hand fracture) or running (whatever the exact cause, there certainly was repetitive stress that led to it). There can, of course, be a relationship if one has a systemic illness such as MS, rheumatoid arthritis, B12 deficiency, etc. I tested negative for the whole long list. Of course, there's probably a gray area where some just have sensitive nerves and mysteriously acquire both carpal and tarsal. My hand is the least of my problems. I think I can lick that by wearing the carpal brace, at least while I sleep. Thanks for your thoughts and good luck on your own problems.

Re: carpal and tarsal

GinaC on 7/11/01 at 15:35 (052853)

I have bilateral carptal tunneland ulnar nerve entrapment at the wrist, and TTS. Once the systemic causes were tested and ruled out, the doctor explained the multiple nerve problems as 'bad luck' - guess that pretty much sums it up! Had open pf release and tts surgery in March and am heading towards a wrist surgery in August; not one of my better years!

Re: You can call me Mr. TTS

Matt L on 7/12/01 at 07:46 (052923)

Elliott,
Curious who the big-time tts surgeons that you saw and your impressions of them. I'm currently seeing one and may have to consider surgery. Is either or both in the Baltimore area? If so, please let me know your experience(s). Feel free to email me at mlerner@nas1.com if you prefer not to name names in 'public'. Thanks.

Re: relationship between carpal and tarsal

Lori R on 7/12/01 at 15:06 (052967)

Gina and Elliott,

So I'm not the only one here with both carpal and tts! At least I'm not alone. Gina, I hope your wrist surgery goes well. I'm more in Elliott's league, my carpal isn't that bad and is being controlled with conservative methods. However, like everyone here, I can't say the same about my tts.

Take care,
Lori

Re: email

elliott on 7/15/01 at 06:19 (053231)

You sure your email address is correct? I've tried sending several times and it keeps getting bounced back.

Re: relationship between carpal and tarsal

Leslie W on 8/29/01 at hrmin (058331)

Hi: I read your comment about there being a relationship between MS and Tarsal Tunnel---I have both and am now in the process of researching to see the best route to go for the Tarsal Tunnel Syndrome. Please advise me of where I might read more about the TTS being caused by the MS or at least related to it. I appreciate it! Leslie

Re: You can call me Mr. TTS

Jack H. on 7/11/01 at hrmin (052777)

Read your story and here's mine. Started having pain in 1988! Right ankle only. Had torn it up in the 60's playing softball but no problems since then until '88. Went ot podiatrist. Made me orthotics which costs a bunch and did nothing. Orthopedist injected it several time. Had first Tarsal tunnel release in the 92. Helped for a year. Then big time pain. Same orth did second release, but not til 95--found artery grew branch into the nerve. Asked me if it didn't hurt. I said I had told him 'yes, but only every time my heart beat'. Second surgery helped for another year. In '97 had my third which was incredibly painful and really only helped for about six months. My FOURTH surgery is scheduled for 7/31/01. Wish me well.

I have nothing but pity for anyone with TTS. It's incredibly painful at times and very debillitating. Pain pills help a bit. Neurontin and celebrex did zip. Like to hear from any other sufferers.

Good luck.

Re: glad to make *someone * feel better :-) (nm)

elliott on 7/11/01 at 10:43 (052793)

.

Re: I'll call you Mr. One-Footed TTS :-)

elliott on 7/11/01 at 10:57 (052795)

Sorry for your predicament; I really am. Every time you have repeat surgery, the risks of complications and weakness get higher, and in the case of TTS, the expected results are worse, in great part because it is more likely that scar tissue will re-form over the very same area released, again trapping the nerve(s).

Did you ever hear of and if so consider a vein wrap? It was perfected only in 1989 and only a few places in the country do the procedure. For those with failed initial TTS surgeries who seem appropriate candidates either before or due to what's observed during surgery, what they do is, rather than just repeating the same TTS release, they take a saphenous vein from your lower leg and wrap it around the nerve(s), helping to prevent scar tissue from re-forming there. Of course, results are not perfect nor is 100% relief likely, and it leaves one with a hideous scar running up the side of the leg from ankle to knee and can leave one with permanent discomfort there as well, but as a last resort, it has saved some from lifetime disability, and might be a better shot than just another release.

Re: You can call me Mr. TTS

Lori R on 7/11/01 at 11:58 (052810)

Elliott,

Sorry to hear about everything you've been through. I have had problems/pain in both my feet for over 4 yrs. I was finally diagnosised last month with TTS. Prior to the diagnosis I had never even heard of TTS. I am currently looking for a new ortho surgeron as the one that diagnosised me doesn't want to deal with me anymore because I was asking too many questions. Apparently he is a very big name doc and works on many high profile athletes and doesn't have time to deal with little old me. I wanted to respond to a comment you made in your original posting. You mentioned starting to have problems with your hands, I also have problems with mine. The ortho surgeon I'm looking to replace said that often people who have TTS also have carpel tunnel syndrome in their hands. He did not give any reason or go into detail and I haven't seen anything posted here but in my case it does seem to be true. I've been concentrating on my TTS because it is worse and limits me more than the hand problems but I would like to find out more about the relationship between the two.

Good luck, Lori

Re: to Lori R. - new ortho

Andrea R. on 7/11/01 at 12:43 (052815)

Lori,

Try http://www.aofas.org to get a list of the foot and ankle orthos.

Re: relationship between carpal and tarsal

elliott on 7/11/01 at 12:45 (052816)

My understanding is that there likely is no relationship if there was a specific cause as to the nerve entrapment, especially trauma (e.g. ankle or hand fracture) or running (whatever the exact cause, there certainly was repetitive stress that led to it). There can, of course, be a relationship if one has a systemic illness such as MS, rheumatoid arthritis, B12 deficiency, etc. I tested negative for the whole long list. Of course, there's probably a gray area where some just have sensitive nerves and mysteriously acquire both carpal and tarsal. My hand is the least of my problems. I think I can lick that by wearing the carpal brace, at least while I sleep. Thanks for your thoughts and good luck on your own problems.

Re: carpal and tarsal

GinaC on 7/11/01 at 15:35 (052853)

I have bilateral carptal tunneland ulnar nerve entrapment at the wrist, and TTS. Once the systemic causes were tested and ruled out, the doctor explained the multiple nerve problems as 'bad luck' - guess that pretty much sums it up! Had open pf release and tts surgery in March and am heading towards a wrist surgery in August; not one of my better years!

Re: You can call me Mr. TTS

Matt L on 7/12/01 at 07:46 (052923)

Elliott,
Curious who the big-time tts surgeons that you saw and your impressions of them. I'm currently seeing one and may have to consider surgery. Is either or both in the Baltimore area? If so, please let me know your experience(s). Feel free to email me at mlerner@nas1.com if you prefer not to name names in 'public'. Thanks.

Re: relationship between carpal and tarsal

Lori R on 7/12/01 at 15:06 (052967)

Gina and Elliott,

So I'm not the only one here with both carpal and tts! At least I'm not alone. Gina, I hope your wrist surgery goes well. I'm more in Elliott's league, my carpal isn't that bad and is being controlled with conservative methods. However, like everyone here, I can't say the same about my tts.

Take care,
Lori

Re: email

elliott on 7/15/01 at 06:19 (053231)

You sure your email address is correct? I've tried sending several times and it keeps getting bounced back.

Re: relationship between carpal and tarsal

Leslie W on 8/29/01 at hrmin (058331)

Hi: I read your comment about there being a relationship between MS and Tarsal Tunnel---I have both and am now in the process of researching to see the best route to go for the Tarsal Tunnel Syndrome. Please advise me of where I might read more about the TTS being caused by the MS or at least related to it. I appreciate it! Leslie