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TTS

Posted by Ken S on 8/06/04 at 22:49 (157117)

I am new to the site and have been diagnosed with TTS after PF Surgery. Tried all the orthotics and meds..took the peripheral polyneuropathy tests which came back negative. Now comes the big surgery as a final treatment under a workers comp claim and I am very concerned about this step. Any input is appreciated. Ken S

Re: TTS

Dorothy on 8/07/04 at 01:42 (157127)

You might want to do a search on this website at the beginning of it where you can search the message boards, entering 'TTS' and/or 'Tarsal Tunnel Syndrome' and spend some time reading what various posters have written about their condition, about their surgeries, etc. It might be a good place for you to start. I'm sure others with TTS information will respond to your post here.
Best wishes to you -

Re: TTS

mark g on 8/07/04 at 02:37 (157130)

ken, i had tts surgery under work comp. i had sugery 19 months after injury. i did not know about tts or this site at the time. from what i have learned, surgery must be ABSOLUTELY the last option. i thought i had come to my last option, but would definitely have tried more specialized therapy with what i have learned. which is the most difficult thing to do, along with finding a competent surgeon who tells you straight up what you may encounter. i found neither! and from today's
appt. my new ortho. says i need the tts surgery redone. he said the surgeon who did the operation did an incomplete release. i also had a disclocating peroneal tendon repair at the same time. this also needs to be redone. both sites have more pain in a greater area than presurgery. add on what feels like pf and knee, hip, back pain from 2 years dealing with this. now i am feeling tts and pf like symptoms in the other foot. now i am exploring trying to go see dr. sandell in minn. to see if he can offer help. he treats chronic pain and soft tissue injuries, without the knife! there has been much chatter about him on the 'treatment' board. the last thing i'll do is let a doctor cut me again. which they hastily seem to do. i know dealing with the adjuster for work comp. is a huge hassle and the waiting is terrible. learn as much as you can about tts. i have spent hundreds of hours getting information. this message board is a wonderful resource. keep a notebook and document every conversation with your claims rep. and every doctor visit, therapy whatever. that has helped me greatly. they will try to cut you loose and will likely offer little. don't be pushed around. the more you know the easier it is dealing with everyone and the less you will get jerked around. have you had therapy? mri, ncv? mine were both negative. if you decide on surgery, go in with a list of questions. from what i have learned, find a neurovascular surgeon, i didn't have one. who has extensive experience with tarsal tunnel. some people find improvement, but most do not. my doctor told me 90% succes rate with 10-12 weeks recovery. i believe most on this site put it at 40-60% with 7-18 month or longer recovery or never. so it is worth exploring all options with those odds. it's aslo crazy how doctors demonize each other. the orthos i saw said absolutely do not let a dpm do it. the dpms said they have the most foot training. all chiros are quacks and aren't based in medicine. that therapy is not that effective, only post-op therapy. one post-op foot-ankle ortho i saw said he won't do tts surgery, 'asolutely have a neurovascular surgeon do it'. so i know how mind numbing it gets. hopefully, this will help some.
perhaps you can avoid the trip i've taken. best of luck! hang in there.
~mark~

Re: TTS

LARA on 8/07/04 at 11:25 (157145)

This is something I saved from previous posts - kept adding to it as people mentioned things that worked. Haven't really organized it yet, but if you wait for me to organize it you might have to wait another year to get the information, so I post it as is.

THINGS THAT HAVE WORKED FRO SOME PEOPLE
Medications:
Neurontin, Topamax, Ultracet, Percocet, Vicodin, Mexitil, Benfotiamine, Methylcobalamin, Amitriptyline
Alpha Lioic Acid, Pure Borage Oil, B-Complex,
Ibuprophen, Celebrex,
LIFE STYLE
quit smoking,
meditation
OVER THE COUNTER MEDS
pain patches,
capsaicin cream, BioFreeze, cold packs
orthotics,
compression stockings (my personal favorite -east, cheap and very effective for some people)
massage,
RebuilderMedical
****************************************
TREATMENTS FOR PLANTAR FASCITIS &/OR TARSAL TUNNEL SYNDROME.
(The two are not combined because treatments are interchangeable. They are combined because 1) many treatment do help both conditions 2) some people with diagnosed PF actually have TTS. I don't know if the reverse is true.

TREATMENT #1: never go barefoot
Treatment #2 don't cheat and go barefoot just to run upstairs, or get something from the other room.
Treatments 3. . . . .:

SHOES
Merrill (all Merrill are not created equal check out the particular shoe)
New Balance - (all New Balance are not created equal check out the particular shoe)
Some people have also mentioned Nike.
Dansko clogs
Find a shoe store that is run/owned/managed by the people who make orthotics. They often have 1) the expertise to know which shoes match your symptoms and 2) a good selection of shoes. As bonuses, you don't have to sift through a lot of lousy shoes and the stores are often modest in size and so service is prompt and responsive. (The ones I know about carry Merrill, Dansko & New Balance).


NON INVASIVE
-prayer
-orthotics (traditional, Dr. Kiper),
-compression socks
- taping (see Scotts heelbook, online)
-nightsplints or strassburg sock
-ice (daily and/or after activities. You can get ice packs that fit -nicely to the foot). I've heard reports of this being much more successful than would be anticipated, even 15 min/day at the end of the day
stretching
- (check out thread called 'Julie's stretches in the archives)
-My experience is that direct massage of the inflamed area makes PF MUCH worse. I am currently getting professional massage from arch to toes only, and focussing on trigger points in calf, hammy, and even quads. I have one point on my calf (that thin strappy lateral muscle, talus?) that if you rub across the trigger point it feels like you are rubbing the arch
cast and crutches
. It was not a boot cast, but rather the hard fiberglass kind they use for fractures.
go sockless (PF) several people report relief from PF symptoms no one is sure why

TREATMENTS: Massage (deep friction, ART, deep tissue, w/ biofreeze/ ibuprofen cream/Vit 3, Trigger Point on calves/hamstrings, Rolfing, cross-friction), ART, ESWT, surgery
-aggressive stretching
-contrast baths
-Pilates, strengthening, and balance exercises, etc.
-boot cast, cam walker, etc. to immobilize foot
-massage sandals
-Vitamin B/B12 (some people take mega doses - be careful as to which vitamins can cause toxic reactions)

-ESWT (for PF, not TTS?)
-ART (type of massage)
-Trigger Point Massage Therapy

HOME REMEDIES
Ice
hamstring stretches
'aggressive stretching'
taping (see instructions on web site)
rest
Epson salt soak
yoga

-Capsazin cream
- Ibuprofen cream
Oral dose packs of cortisone have helped some. Also there are much more powerful topical creams that can be compounded by a pharmacist at the request of a doctor that can be much more effective than otc ibuprophen cream. They may contain ingredients like ketamine, ketaprophen, gahapentin, etc. A lot of these medications are much better at not only killing pain, but preventing the nerves from over firing. Even simple ibuprofen cream could be compounded by your local pharmacist.
oitin (In the past I experimented with different brands. SOLGAR is the one that works on me. When I first started taking G/C I started with SCHIFF brand from a neighbor who had it (she bought it from Costco). I tried getting a cheaper brand at my health food store, other than Solgar, but it didn't work.)
Oral dose packs of cortisone have helped some. Also there are much more powerful topical creams that can be compounded by a pharmacist at the request of a doctor that can be much more effective than otc ibuprophen cream. They may contain ingredients like ketamine, ketaprophen, gahapentin, etc. A lot of these medications are much better at not only killing pain, but preventing the nerves from over firing. Even simple Ibuprofen cream could be compounded by your local pharmacist.

*************
MINIMALLY INVASIVE (but not necessarily without significant side effects)
-Cortisone shots
-OTC Medications:
Glujcosamine & Chondrotin (person reporting said brand makes a difference)

Antiinflammatories (There are many anti-inflammatory drugs out there with patients responding very differently. What works best for one patient if often not what works best for the next. Ed)

-NSAIDS aspirin, ibuprofen
-COX-2 Inhibitors= Vioxx, Celebrex, . . .

I'm not sure how the following pain relievers are classified. If anyone knows, please let me know.
-Mobic (Mobic is as a drug halfway between a classical anti-inflammatory and a cox-2 inhibitor. Mobic can thus be harder on the GI system.)
Bextra

-Rx Medications: Neurontin, Elavil
-PT like iontophoresis (sp)? with a steroid




DRUGS-RX
neurontin
muscle relaxants
flexril
Jade

INVASIVE
-PF release surgery
-TT release surgery

When NOTHING works:
-consider a pain management clinic/doctor.
(I'm not sure how long you should suffer, or how many things you should try first. If in doubt, call a pain management doctor and ask.
2 things to consider:
1. a pain management doctor will know how to manage pain. She or he won't necessarily know what treatments you haven't tried for PF/TTS that might work.
2. Many of the the treatments pain management has are heavy duty drugs. This isn't bad. But I would want to be sure I'd tried lots of other stuff first.

Posted by john h on 3/02/2000
i was thinking today of some possible treatments for PF that no one has tried:
1. Faith healer
2. In some societies they beat your feet with a cane if you do something bad. Might help?
3. Witch Doctor? Hey! Why not it beats a cortisone shot!
4. Radiation. Tie a rod of plutonium 238 around your foot.
5. Bio-feedback. good luck!
5. Break both legs which will force you into bed for 4 or 5 months. (something less drastic which I tried unintentionally but very effectively - get a fungal infection requiring soaking 6x day for a week, or have knee surgery).
6. Psycharisit. some idiots think the pain is in our head.
7. I once had a wart on my hand. my grandmother had me rub it with a dirty wash cloth and then bury the cloth. For real- the wart went away. Unfortunately, my wife does not keep any dirty dishcloths around.
8. Get a boyfriend like Brad Pitt or girlfriend like Julia Roberts and forget your pain.

SURGERY:
As frequently said, a last resort. Most poeple get better. Some aren't
any worse off after the recovery period. Some people are worse off.

Re: TTS

Terri on 8/07/04 at 11:45 (157147)

Ken,
Mark G is right, only have surgery as a last option. I have bilateral TTS and had surgery in Jan of this year on the right foot. I jumped right in to surgery because my dr convinced me that it was the only option. He stated I could try all the treatments out there but would only be wasting my time and money as they just don't work and surgery would eventually need to be done. 'Why put it off', he said, 'you'll only be doing more damage to the nerves by waiting and then maybe even surgery won't work.' I found this site right before my surgery was scheduled, and even though I was warned about it, I did it anyway because my dr was very convincing.

Things were good for awhile, then I had some complications. Now I'm looking at more surgery to repair a tendon and remove scar tissue. I'm trying to avoid that and will only go under the knife again as a last resort, basically if I just can't walk! I found a new dr who almost cried when he saw what was going on with me. He's had to fix my previous dr's other patients too many times and is now testifying against him in a malpractice suit. If you do decide to go ahead with this surgery, ask your dr how many TTS releases has he/she done and what is their success rate. Ask if you can talk to any of their patients for their opinions.

Whatever you decide, good luck and keep us posted on how you're doing.

Re: TTS

Marty in SLC on 8/07/04 at 14:32 (157159)

this is a gold mind !!!! thanks lara

Re: ps lara

Marty in SLC on 8/07/04 at 14:34 (157160)

do you know who it was that bought the rebuilder? first posted person in your list

Re: TTS

Marty in SLC on 8/07/04 at 14:36 (157161)

terri, what are your complications?

Re: TTS

Eric on 8/08/04 at 04:21 (157190)

Im new to this site also, but have read alot about TTS. I might have had this for over five years now, but only have been in a sort of treatment for about nine months. I used to be a very active person and im currently in the Navy in Iraq at the moment and I believe I have TTS bilaterally. I have all the symptoms down to the tee, so its real convincing I have this. My doctors are still kinda in the rule out phase but im sure of it. I have to take pain medication or I become completely wiped out and with a mirgraine. Im currently taking tramadol and naprosyn, both analgesic and nsaid. Ive had a emg done in march that was positive for latency with the medial nerve, which is basically a great indication for having tts. I been in denial for a long time cause I love soccer, im military and im only 29. Ive always been told I have flat feet so I have always taken a motrin(ibuprofin) and blew it off. Well time has come and im in so much pain now I cant go with out pain meds, i take them all day long now. This is tearing my career apart as well as my family. I feel so helpless, I lay there every night in bed in pain until I fall asleep and often wake up in the middle of the night in pain. Its like a nightmare, ive put something off for so long now I feel im like so far deep im never going to get out of this. Well anyway I dont know about surgery yet, hopefully something soon though. Im trying steriodal injections next, though I think surgery is the only way for me.

Re: TTS

LARA on 8/08/04 at 08:49 (157192)

My first response is THANK YOU - and your family - and for devoting your life to our freedoms.

The list above has many things that work quite well for some people. I'd start with the non-invasive things and work my way through the list. Compression socks are an easy one because you can go about and live your life while trying them out. But then I'm their biggest cheerleader because they were such magic for me. They don't work for everyone. However, don't think I wasn't 'that serious' a case. At the time I got the compression socks I was fantasizing about amputation as perhaps the most workable solution and would crawl on the floor on occasion.

Re: TTS

Eric on 8/08/04 at 10:16 (157195)

Very humbling thank you, Im not sure the opinion of most back home. But I can asure we are doing alot for the people of Iraq, an Iraqi man was hugging me just a few days ago after we saved his wifes life. She was hit by a motar some militants fired while she was tending her garden in front of her home.

Re: TTS

Darlene on 8/08/04 at 12:54 (157200)

Hi Eric. It's amazing to be communicating with you when you are in Iraq and I am here in Canada.

It would be helpful to know the reason for your tts - An MRI might tell you. If it's due to inflammation, then the steroid injection might help, but I understand that you shouldn't have more than 3.

You mention flat feet. You may be overpronating and putting extra stress on the tarsal tunnel area. Do you wear orthotics? Where do you feel the pain?

I'm sure other people will tell you this too. If you are planning to have surgery, go to someone who has a lot of experience and a good track record.

Darlene

Re: TTS

Eric on 8/08/04 at 13:14 (157201)

I think its due to a healthy life of soccer, sports, and military. I had an MRI done which showed excessive fluid around the achilles tendon, but that all that was noted. MRI is only able to detect deformity or tumor/tissue build up violating the tarsal space.

I started orthotics last years, and they have help alot. Im experiencing tremendous burning/tingle pain in the posterior malleolos region. With tinnels(tapping the tarsal space) I get a shock to my big toe.

Im gonna try kenelog or celestone(steroidal injection) as soon as I get my hands on it here.

Re: to Marty in SLC

Terri on 8/08/04 at 20:09 (157223)

Marty, I have a significant amount of scar tissue that is now wrapped around the nerves and the tendon is full of fluid, beyond what is normal for ordinary tendonitis, and it's wrapped in scar tissue too. Plus the fact the 1st dr didn't do a complete release.

My new dr has told me unfortunately the only thing he can do is surgery to try and correct this, which of course can lead to scar tissue developing again. Like I said in my earlier post, the only way this is going to happen is if I just can't walk any more. I quit taking my Neurontin too which just makes it that much worse.

Re: TTS

Ann L on 8/08/04 at 21:26 (157229)

Eric,

Unfortunately, the most vocal are those that are not in support of our soldiers. Many of us support our military and bless you for the hardships you endure in the name of freedom. I wish you luck and blessings both in your tour of duty and in your fight with TTS.

Ann

Re: TTS

LARA on 8/09/04 at 13:21 (157265)

If excessive fluid is involved, I'd really try some compression socks. THey were magic for me (the difference between crawling on the floor and fantasizing about amputation, and leading an normal-looking life.) and your symptoms and history sound similar to me. If you can't get them over there, maybe your wife or friend and mail them to you (how good is the mail?) They can be gotten in most drug stores I think. At least I've seen them in the NOrtheast and West coast. They are the same ones that people wear for varicose veins.

I think mine was caused by a healthy life of tap dancing as a child, jogging in college, and tennis on and off (and on when the symptoms appeared).

Good luck.

Re: TTS

Terri on 8/09/04 at 17:14 (157294)

Oh yeah, Lara...been there done that! I bought a pair of the compression socks, look like trouser socks too so they fit right in with work clothes. I really didn't notice a difference one way or the other, I too have a lot of fluid around the tendon (see my post further up to Marty in SLC).

Re: TTS

LARA on 8/09/04 at 21:34 (157333)

It's good to hear stories about real people getting real help over there. These kinds of stories don't lend themselves to news programs over here. I hope the woman will be o.k. - and you too. Must be awfully emotional.

Re: TTS

LARA on 8/09/04 at 22:09 (157335)

Yea. They don't work for everyone. I often encourage trying them not so much because I think they are God's gift to Tarsal tunnel, but because they are relatively inexpensive, and easily reversible if it doesn't work, and if they do work, they can be magic. Sorry they didn't work for you. : (

Re: ps lara

LARA on 8/09/04 at 22:12 (157336)

I don't even know what the rebuilder is. Sometimes I get tired of chasing dead ends, and I've been lucky that compression socks give me a nice life.

Are you referring to Dr. Kiper?

Re: ps lara

Marty in SLC on 8/09/04 at 22:36 (157338)

http://www.rebuildermedical.com/

I only know of one person from this site who bought it. Said it helped some.

Re: to Marty in SLC

Marty in SLC on 8/09/04 at 22:37 (157339)

why did you quit the neurontin?

how does your doctor know the first surgery wasn't a complete release?

Re: TTS

Eric on 8/09/04 at 23:04 (157341)

I am gonna try to get some stockings. Mail is good here but its not an option for me, I cant get my wife to send me anything. My podiatrist back home told me I should try them also. I kinda just shrugged her off on it, how can a guy be sexy in those /laugh. I found some kenalog so im getting some shots today, I hope it helps.

Re: TTS

LARA on 8/10/04 at 10:24 (157372)

PREVIOUS POST: how can a guy be sexy in those./laugh.

LOL. Yea I know what you mean about those 'sexy compresson hose'. HOwever, just think, it's a lot sexier to be yourself, than to be interacting with people while in constant pain, or restricting human companionship to that which can be done while sitting! I remember being a flaming bitch when my feet were really bad. I'm sure my compression socks made me a lot sexier than when I was a flaming bitch in my nice clothes and beautiful, shapely, well-shaved legs!

Sorry about your wife. If you want to post your address (are you allowed to do that?), I imagine you might get a few packs from folks on the board - I'll send you some. Good luck.

Re: TTS

Eric on 8/10/04 at 11:59 (157381)

I dont know how people go about email here or if it is allowed. Id love to hear from you all, your history and what you have done in the battle of tts. Ill pass on my email im using here in iraq, please feel free to email me ty. If you would like to send a care package ill give info through email. Plus I will share with my patients out here and even the lil Iraqi kids. We had an adorable little girl here the other day(she broke her ankle), but we sent her off home safe with her father.
(email removed)

Re: TTS

LARA on 8/10/04 at 20:22 (157460)

I'd love more about what you are doing, but as a happily married mother, I'm not real confortable corresponding one-to-one. Another suggestion might to start a thread on the 'social board' and then many of us can correspond with you at the same time about non-TTS stuff and you can tell us stories.

Re: TTS

Eric on 8/11/04 at 09:06 (157493)

Oh im sorry if I offended you, I just want to learn here is all. Im just very curious how others delt with this, Id like to know first hand. I want to see hope and be pain free. I feel im just way to young to have this(29), its just hard to deal with. Hehe Im not here for other social reasons at all, im happily married also. I will try a post on the social boards maybe, but its really about lifestyles with tts is what I want to know, not a mean to communicate anything but.

I had a shot of kenalog the other day, procedure went well, just the right ankle for now. My ankle was numb for a few hours cause the lidocaine. But now its back to the same pain, maybe over the week it will help we will see.

Re: TTS

Eric on 8/11/04 at 09:15 (157495)

Oh im sorry if I offended you, I just want to learn here is all. Im just very curious how others delt with this, Id like to know first hand. I want to see hope and be pain free. I feel im just way to young to have this(29), its just hard to deal with. Hehe Im not here for other social reasons at all, im happily married also. I will try a post on the social boards maybe, but its really about lifestyles with tts is what I want to know, not a mean to communicate anything but.

I had a shot of kenalog the other day, procedure went well, just the right ankle for now. My ankle was numb for a few hours cause the lidocaine. But now its back to the same pain, maybe over the week it will help we will see.

Re: TTS

LARA on 8/11/04 at 11:48 (157524)

No offense taken at all. I was actually kind of intrigued, and would love to hear more about Iraq, but just didn't feel comfortable with the private correspondence. Please stay on this board to talk about TTS - and include stories from Iraq if you can. They like to keep the topic boards relatively on topic so people can find what they want. So if the topic gets too off-topic, we should probably move over to the social board, but no need to stop talking on this board about how to live with TTS. And I don't think what has occurred thus far is contrary to the spirit. The intent isn't to muzzle conversational styles and giving personalities to the people who's names we regularly see - just make the boards manageable. Also, I found by visiting the board regularly I just started picking up information. You'll actually probably get more information about living with TTS from the boards than private conversations. YOu can get several answers to the same question from different viewpoints.