Home The Book Dr Articles Products Message Boards Journal Articles Search Our Surveys Surgery ESWT Dr Messages Find Good Drs video

TTS surgery

Posted by Ellen F. on 10/09/02 at 19:21 (097164)

i was diagnosed month and a half ago with bilateral TTS. I had 1 injection of cortisone that lasted about 5 days before aching came back. The Dr. i'm going to says that he won't give me any more injections because the Neurontin and Zonegran(i tried both had reactions to both) i'm not able to take. He says that the shots and pills work together and it is pointless to continue with the injections. He is wanting to do surgery on the left since study said was worse than right foot. I have more problems with the right it seems. I am really leary about he surgery,i'm reading long recovery and crutches, therapy,etc. He has done 20 of these in past year and says has a good outcome. I have problems also with my right wrist and have had a plate and screws in it, which complicates the issue with crutches. I also have read that 6 to 12 mo. of conservative treatment before considering surgery. Any suggestions? Any comments? I'd like any at this point in time, since i'm thinking about not having the surgery. i can bear the discomfort at this point in time, some of the problems is when i'm in the car for over an hr. and go to get out for a few minutes my feet don't seem to work at all, it is like they won't move or something. I have more problems at night with both calf muscles and heel of the right foot. i'd appreciate any suggestions. The Dr. also said the right foot will get worse after the left is worked on because of the weight on the right foot. thanks.

Re: TTS surgery

Lara T on 10/10/02 at 08:12 (097206)

Before going for surgery, I'd check out whether to try any of the other possible treatments. Several weeks ago there was a thread on this. All I could find (with my limited computer skills) was the below, but others responded with other ideas and more information.

My personal favorite are compression socks (they come in OTC, Rxmild, RX-moderate & RX-even more but not sure the name - severe doesn't sound like a name they would give a treatment). My doctor started with the RX. I don't know if the OTC would have provided much relief although I use them occasionally now.

No one around here seems as enthralled with them as I am. I don't know if that is because they don't work for most people, or because few people are offered the option. I do know some people have tried them and found it aggravated the pain. The reason I like to suggest them is they are relatively inexpensive (expensive socks, inexpensive treatment), and if they don't work, you can just take off the socks and go on to the next thing (I assume, I've not heard of anyone who didn't like the socks saying the socks continued to aggravate the condition after they took the socks off).

However, there are lots of choices. Below is the beginning of the thread on possible treatments and you should be able to find the rest of the thread by searching the archives. I was collected a much longer list and I'll try to find it and if I do I'll forward it to the board.

Possible Treatments View Thread
Posted by Lara T on 7/23/02 at 09:46

A question about what treatments are available came up on the TTS message board. It thought it might be more appropriate here. Even though this board is not focused on TTS, I've learned from reading that even those of us with a 'definitive diagnosis' may not have what we think - and those without the diagnosis sometimes have TTS - the area is just too new.

So, the question was, what are the possible treatments for TTS (and for this board I'll add other pains). Here is the list I can think of thus far (a few more things have been added since the TTS question for those reading both boards)

NON INVASIVE
compression socks
Vitamin B
ESWT (for PF, not TTS)
Capsazin cream
Ibuprofen cream

MINIMALLY INVASIVE (but not necessarily without significant side effects)
Cortisone shots
Medications: NSAIDS
Medications: Neurontin, Elavil

INVASIVE
PF release surgery
TT release surgery

Re: Compression socks

AS1 on 10/10/02 at 08:22 (097209)

I tried them for 3 days and absoultuely hated them. They
squeezed my arches, where I have most of my pain.

Re: Treatments to cons before surgery

Lara T on 10/10/02 at 08:28 (097210)

I went through the archives while taking the train across country earlier this year, and came up with the following notes. I didn't get through everything. It's a list of everything I saw mentioned. Some provide immediate relief but little long-lasting relief (which isn't to denegrade it, we all need rest sometimes even if only for awhile). Some are controversial. I simply wrote down things that were mentioned.

I hope others will contribute to the list, I'll add them to a master list and maybe they can get posted somewhere.

HOME REMEDIES
-Ice
-hamstring stretches (see thread on Julie's stretches) but be careful, stretching inflamed tissue is problematic. If pursuing this, check out the archives, or get a good professional to advise you)
-'aggressive stretching'
- taping (see instructions on web site)
-rest (!!!!-very effective. I found this easiest when life intervened and forced me to rest - I got a fungal infection and had to soak my foot 4x/day, I had knee surgery, etc. I've considered making one day a week 'a day of rest' to keep me ahead of the pain.)
-Epson salt soak
-yoga

DRUGS-OTC
-Nsaids
-COX-2 Inhibitors
-Glucosamine & Chondrotin (person reporting said brand makes a difference)

DRUGS-RX
-neurontin
-muscle relaxants
-flexril
-Jade
-elavikl

SHOES
-Merrill
-new Balance
-Dansko clogs (these have an added advantage of being able to be word with professional outfits).
I have found that finding a shoe store that is run by a person who also makes orthotics is very helpful. I go in, describe my feet's problems, and get a recommendation of what shoes to consider. My daughter and I have two different problems, got two different recommendations, and are happy with our choices. I also searched for such a store when on vacation and needed shoes so as to reduce the time I had to spend finding the kind of shoes I would need.

OTC:
Nightsplints
DSMO
compression socks (RX probably are required, at least initially, although they are available OTC)

RX:
-orthotics (traditional, Dr. Kiper)
-cortisone shots,
-iontophoresis,
-compression socks
-laser

TREATMENTS:
Massage (deep riction, ART, deep tissue, w/ giofreeze/ ibuprofen cream/Vit 3,
Trigger Point on calves/hamstrings, Rolfing, cross-friction)
ART
ESWT
surgery

Re: Compression socks

Lara T on 10/10/02 at 08:31 (097211)

I'm sorry they didnt work for you. Did the pain go away fairly quickly after you took them off, or did it cause lasting damage? I had so much success with them I like to offer the suggestion, but I didn't have the bad experience. Many of the possible treatments do cause pain and people choose to discontinue them. It's frustrating there isn't a clear=cut protocol to follow that would work for all (even most) people!

Re: TTS surgery

elliott on 10/10/02 at 09:13 (097216)

Hi, Ellen F. Hope things work out for you.

I never heard that before about shots and pills working together and only having value together; I doubt it's correct either. A shot reduces inflammation at the area of injection, possibly providing temporary or permanent relief. A pill can possibly help the nervous system cope with pain. In any case, one or two injections can be worth a try, but you can't continually keep getting them.

You didn't say how symptoms first came on. Based on your description, I would talk to a few other doctors, of varied backgrounds, maybe get some bloodwork done too to test for systemic diseases. Do you have any lower back problems, by any chance? Did you try orthotics? If the origin of your pain is coming from tight calves or some other such problem, a TTS release at the foot would be less likely to help.

There are options other than crutches. One is a sort of adjustable knee cart on wheels. You place the knee with the casted foot on the flat-lying cushioned pad, there's a pole sticking up for your hands to hold on, and you push off with your good foot. It's not too heavy and collapses to fit in a car. Its only real weakness is steps. I might get that if I need another surgery, as the crutches hurt and, given the distance I had to walk in them the last time, I had nerve problems in my hand for some time after. If it comes to surgery, if you ask, your doc's office may be know how to get one, or else check with renters of medical equipment. It might be something like $25 a month to rent or $300 to buy.

Re: TTS surgery

Ellen F. on 10/10/02 at 09:56 (097225)

hi and thanks for your response. I had Avascular Necrosis in my right wrist, leading to a radial shortening about 4 yrs. ago. I can't seem to get the Dr. to even consider the idea that I may have AVN in my heels. Yes, I do have back problems, had MRI which was neg. for disk problems. Have seen chiro. in past for back, he claims is related to 1 leg shorter than other?? had several adjustments, did help back.Dr. that did nerve studies said is not back, somehow they know based on their readings.FYI, i was told wrist was 'classic' carpal tunnel, then was in cast for 6 weeks because whoever read x-ray said was a 'fracture', was neither. I had to see 4 Drs. and go thru MRI, x-rays and fluoroscopy before had definitive dx. I am so glad i checked you guys out, before deciding on surgery, you all have me thinking now. The Dr. said maybe casting, then said no. Maybe he knows how much I hated those shots. in left he did on outer ankle, the right was the killer, he had to hit the nerve. I sure feel bad for anybody that has this. I really like the 'pro active' approach, you guys are great! I get the feeling that everything i mention to him that I've read he doesn't really agree with, but it is not him going thru it, i want to know everything first. I am not a 'classic' case of anything. Past 10 yrs. i have have 7 surgeries. funny but i had a cyst taken off of top of right leg in my thigh that was 'abnormal' and i have done reading and they grow on the nerve. How i found it , pain and burning, very intense every night for about 10 minutes when i laid down. There could be many reasons for all this as you say. I am thinking of checking out this Dr. at Johns Hopkins. I so appreciate all of you and your suggestions they all seem possible and many I haven't tried at all. Evavil, i have it here have taken before for ? fibromyalagia, didn't seem to work, but who knows, this is different problem. I definetly am pleased with all the suggestions. Thanks again.

Re: Compression socks

Ellen F. on 10/10/02 at 10:03 (097226)

i used socks for circulation before, i'm sure they are similar, only complaint was they wouldn't stay up. i might give these a shot, could help i don't know.

Re: TTS surgery

Sharon W on 10/10/02 at 10:04 (097227)

Ellen,

Have you had an MRI of the foot? Since you had a cyst taken off of your right leg, it is possible you might have one in the tarsal tunnel area, and an MRI (or a diagnostic ultrasound, if your doctor can do it) should reveal it if you do.

If there IS what the doctors call a 'space-occupying lesion' in your tarsal tunnel area, then surgery is more likely to be successful than if there is not. And it would certainly be worth KNOWING about, one way or the other, BEFORE deciding whether surgery is the best option for you.

Good luck with all of this.

Sharon

Re: TTS surgery

Ellen F. on 10/10/02 at 10:24 (097229)

i don't disagree, he seems a little anxious to cut me. just made on-line appt. at Johns Hopkins, will see if i get response. He wants to do surgery beginning of Nov. I'm keeping my other 'options' open at this point. Thanks

Re: TTS surgery

Lara T on 10/10/02 at 14:25 (097243)

A guy in Canada developed a 'knee crutch'. It sounds a lot like the 'knee cart' (and probably is more comfortable for flat services that the 'knee crutch' but the knee crutch can do stairs. It has it drawbacks but works for some people. The guy who invented it was/is a farmer and broke his ankle - he needed a cruch he could use that allowed him to use his hand.s

Re: TTS surgery

Ellen F. on 10/10/02 at 14:53 (097247)

sounds great, and may work. i am hoping i don't need the surgery, going to try and hold off until i get at least 2nd opinion.

Re: TTS surgery

Sharon W on 10/10/02 at 15:54 (097253)

Lara,

Pretty cool! A 'knee crutch...' sounds like a good idea. How do you come up with tidbits like that??

Sharon

Re: TTS surgery

Lara T on 10/10/02 at 19:17 (097279)

Desperation.

Actually, I saw it on some news magazine show several years ago, and after my feet went 'down the tubes) when I wanted to give my foot relief as rest seemed to be the most effective treatment, I thought of the 'knee crutch' (not it's official name). I am peculiar in that I experience the symptoms absolutely and evenly bilaterally, but if I treat the right foot, both feet get better, and if I treat just the left foot, neither foot gets better. The explanations so far have been 1) it's in your head - the placebo effect, like aspirin is for some people (ignoring the fact that 1) aspirin is known to be effective and 2) if/when aspirin works cuz of the placebo effect, people are expecting it work - unlike me who never expected treating one foot would help both feet!), 2) it's idiosyncratic (the doctor explained this was medical jargon for 'what do you know' or 'who knows why' 3) the body is complicated computer and 4) (my favorite) yea, I've noticed that with some other patients (probably with other medical issues) so I always give shots in the worst foot first and see how much relief both feel get.

Anyway, enough complaining and back to the knee crutch. . .
So. . .I figured if I could rest my right foot, both feet would get better and I went about a google.com search. It took quite a while, and the help of my kids. When I bought it (a year or two ago) you could only get them in Canada (I live a couple hours from Canada fortunately) but at the time someone was working on selling it in the states (Penn I believe, but also mailorder). It can be a little cumbersome, and requires muscles (and tendons) in the back of the leg/knee, so I didn't end up using it as much as I anticipated - but it is an option at times when my foot really needs a rest.

Re: Knee crutch

Sharon W on 10/11/02 at 08:38 (097301)

Lara,

Do you remember the official name of the device -- or, perhaps, is it written on the knee crutch itself? It sounds like a practical thing, especially when it comes to dealing with STAIRS...

(Not that it matters to ME, at this point, but my husband gets gout.)

Sharon

Re: TTS surgery

elliott on 10/11/02 at 08:46 (097303)

As long as you're going to Hopkins, you might want to consider two other very big name nerve docs in the same city, Lew Schon and A. Lee Dellon, both at Union Memorial Hospital.

[]

Re: Knee crutch

elliott on 10/11/02 at 09:12 (097306)

Actually, I believe Scott R still has one left in stock, if I recall for $100 on sale. Here is the link to it he provided a while back:

https://helius.safe-order.net/cgi-heelspurs/a/b.cgi?p=iwf

But hey, I may need that one for myself! Maybe a few of us could buy it jointly, pass it around as needed and share the cost. Or perhaps each of us who needs it post-surgery could keep partially reimbursing the one who originally bought it till the cost is recouped. This would spread out the cost and make it less risky to any individual in case it doesn't work.

[]

Re: Thanks, Elliott!

Sharon W on 10/11/02 at 09:45 (097309)

I don't think it would work for my husband, though; his thigh is too big.

It does look as if it would be quite a bit easier on the OTHER foot (for anyone with billateral problems). And while it does look like it might be hard to get used to at first, it offers a more appealing alternative for those who can't use regular crutches, than either wasting away in a wheelchair or crawling on their knees!!

Sharon

Re: TTS surgery

Ellen F. on 10/11/02 at 19:15 (097353)

it is actually Dr. Dellon that i wanted to see, thought he was at Johns Hopkins?? He is professor there maybe? i may be confused. will check it out further, thanks.

Re: Knee crutch

Lara T on 10/11/02 at 20:56 (097359)

Here's the website.

http://www.iwalk-free.com/

I had to get a replacement part and they were very responsive. I wouldn't hesitate to send your husband's thigh measurement (responding to a subsequent post in this thread) and ask if the crutch would be big enough. AS I remember (it's in the closet right now) the straps were fairly large. I almost ran out of strap to tighten it - there was lots left over for a larger thigh.

Re: TTS surgery

Ellen F. on 10/12/02 at 10:27 (097384)

i checked knee crutch thigh needs to be under 26'(according to the web page) doesn't mean you couldn't see about maybe extension strap of some kind, it is probably a velcro strap. btw, i have been treated like you before with 'weird' symptoms. Took 14 months for me to get my hand fixed, after going to 6 Drs. Keep on looking to you get the help you need.

Re: TTS surgery

Lara T on 10/12/02 at 11:01 (097389)

It's not a velcro strap, although that would be a good guess. Might be an improvement. It's a rubber strap with 'speed bumps' (can't figure out what else to call them) that go through a plastic 'buckle'. It stops at whatever 'speed bump' you want.

I've stopped looking hard (I still keep my eyes and ears open for new things - hence my presence on this board) since I got my compression socks! Prior to that I probably could have been talked in to amputation! I'm envious it only took you 14 months - took about 2-3 years of up and down before I got to compression socks!

Re: TTS surgery

Ellen F. on 10/12/02 at 12:00 (097392)

i actually had the problem long before the surgery, but i never saw a dr. i guess i thought it was 'carpal tunnel' and it would just go away. probably had total of 2 yrs. went thru casts, shots, etc. have you ever been checked for avascular necrosis, you know you can get it in your heels. that is my concern with the TTS surgery because of the artery involvement i don't want to end us with avascular necrosis. are you able to work and and stand and walk ok now? i know from previous post that you are big advocate of compression socks. i have so much amunition to take to my Dr. since getting on the message boards here, it has been really helpful. only thing is i think he will not agree with some of the suggestions, i'm not sure why.(except he wants to do the surgery). I am going to explore my options for sure. i don't think i'm at the point you were at (amputation), but i know what you are saying as i was there with my hand. i have big problems with pain meds, can't take anything like Percocet. I took it for yrs. for migranes, even the site of one almost makes me puke. thanks for all the help to everyone on the site btw.

Re: Compression socks

Lara T on 10/15/02 at 16:24 (097559)

I can't imagine compression socks not staying up. They are knit so tight! I wonder if we are talking about hte same thing. In any case, the mild compression socks come in anklet & knee high. It would be tough for the anklets not to stay up.

Re: Compression socks

Ellen F. on 10/15/02 at 18:54 (097565)

i had some 'Ted' hose which have elastic qualities and are used for circulation that Dr. prescribed after surgeries and also at one point Dr. thought i had blood clot(ended up being a growth on my vein/nerve), anyway not really a per se compression sock, but i'm sure is similar in that pressure is applied. they don't really stay up too well to the thigh high area. where do you get the compression socks? I imagine Dr. would have to order and then i'd have to check with different drug stores, do you have to be 'sized' for them? are they bulky? do they make your feet warm? I guess i really don't know much about them. you can write me back if you want, i'm curious.

Re: Compression socks

Lara T on 10/16/02 at 06:59 (097602)

There are OTC compression socks that many people buy for varicose veins. I don't know if they would work for TTS, particularly while symptoms are severe. I wear the OTC ones sometimes now depending on what I'm doing (i.e. wearing) and how my feet are that day. But I don't know they would have done much while trying to get things under control.

The mild anklets I have are RX and I got from my doctor, but if your doctor doesn't have them, prescriptions can be filled at medical supply stores. The mild and moderate socks come in knee highs (therefore no problem with staying up on the thigh) I believe the next level up come in panty hose, but I'm not sure. My experience is that the podiatrists are more familiar (and friendly towards) compression socks for TTS than orthopedists. Don't know if that's a fluke, local custom, or general.

Re: TTS surgery

Lara T on 10/10/02 at 08:12 (097206)

Before going for surgery, I'd check out whether to try any of the other possible treatments. Several weeks ago there was a thread on this. All I could find (with my limited computer skills) was the below, but others responded with other ideas and more information.

My personal favorite are compression socks (they come in OTC, Rxmild, RX-moderate & RX-even more but not sure the name - severe doesn't sound like a name they would give a treatment). My doctor started with the RX. I don't know if the OTC would have provided much relief although I use them occasionally now.

No one around here seems as enthralled with them as I am. I don't know if that is because they don't work for most people, or because few people are offered the option. I do know some people have tried them and found it aggravated the pain. The reason I like to suggest them is they are relatively inexpensive (expensive socks, inexpensive treatment), and if they don't work, you can just take off the socks and go on to the next thing (I assume, I've not heard of anyone who didn't like the socks saying the socks continued to aggravate the condition after they took the socks off).

However, there are lots of choices. Below is the beginning of the thread on possible treatments and you should be able to find the rest of the thread by searching the archives. I was collected a much longer list and I'll try to find it and if I do I'll forward it to the board.

Possible Treatments View Thread
Posted by Lara T on 7/23/02 at 09:46

A question about what treatments are available came up on the TTS message board. It thought it might be more appropriate here. Even though this board is not focused on TTS, I've learned from reading that even those of us with a 'definitive diagnosis' may not have what we think - and those without the diagnosis sometimes have TTS - the area is just too new.

So, the question was, what are the possible treatments for TTS (and for this board I'll add other pains). Here is the list I can think of thus far (a few more things have been added since the TTS question for those reading both boards)

NON INVASIVE
compression socks
Vitamin B
ESWT (for PF, not TTS)
Capsazin cream
Ibuprofen cream

MINIMALLY INVASIVE (but not necessarily without significant side effects)
Cortisone shots
Medications: NSAIDS
Medications: Neurontin, Elavil

INVASIVE
PF release surgery
TT release surgery

Re: Compression socks

AS1 on 10/10/02 at 08:22 (097209)

I tried them for 3 days and absoultuely hated them. They
squeezed my arches, where I have most of my pain.

Re: Treatments to cons before surgery

Lara T on 10/10/02 at 08:28 (097210)

I went through the archives while taking the train across country earlier this year, and came up with the following notes. I didn't get through everything. It's a list of everything I saw mentioned. Some provide immediate relief but little long-lasting relief (which isn't to denegrade it, we all need rest sometimes even if only for awhile). Some are controversial. I simply wrote down things that were mentioned.

I hope others will contribute to the list, I'll add them to a master list and maybe they can get posted somewhere.

HOME REMEDIES
-Ice
-hamstring stretches (see thread on Julie's stretches) but be careful, stretching inflamed tissue is problematic. If pursuing this, check out the archives, or get a good professional to advise you)
-'aggressive stretching'
- taping (see instructions on web site)
-rest (!!!!-very effective. I found this easiest when life intervened and forced me to rest - I got a fungal infection and had to soak my foot 4x/day, I had knee surgery, etc. I've considered making one day a week 'a day of rest' to keep me ahead of the pain.)
-Epson salt soak
-yoga

DRUGS-OTC
-Nsaids
-COX-2 Inhibitors
-Glucosamine & Chondrotin (person reporting said brand makes a difference)

DRUGS-RX
-neurontin
-muscle relaxants
-flexril
-Jade
-elavikl

SHOES
-Merrill
-new Balance
-Dansko clogs (these have an added advantage of being able to be word with professional outfits).
I have found that finding a shoe store that is run by a person who also makes orthotics is very helpful. I go in, describe my feet's problems, and get a recommendation of what shoes to consider. My daughter and I have two different problems, got two different recommendations, and are happy with our choices. I also searched for such a store when on vacation and needed shoes so as to reduce the time I had to spend finding the kind of shoes I would need.

OTC:
Nightsplints
DSMO
compression socks (RX probably are required, at least initially, although they are available OTC)

RX:
-orthotics (traditional, Dr. Kiper)
-cortisone shots,
-iontophoresis,
-compression socks
-laser

TREATMENTS:
Massage (deep riction, ART, deep tissue, w/ giofreeze/ ibuprofen cream/Vit 3,
Trigger Point on calves/hamstrings, Rolfing, cross-friction)
ART
ESWT
surgery

Re: Compression socks

Lara T on 10/10/02 at 08:31 (097211)

I'm sorry they didnt work for you. Did the pain go away fairly quickly after you took them off, or did it cause lasting damage? I had so much success with them I like to offer the suggestion, but I didn't have the bad experience. Many of the possible treatments do cause pain and people choose to discontinue them. It's frustrating there isn't a clear=cut protocol to follow that would work for all (even most) people!

Re: TTS surgery

elliott on 10/10/02 at 09:13 (097216)

Hi, Ellen F. Hope things work out for you.

I never heard that before about shots and pills working together and only having value together; I doubt it's correct either. A shot reduces inflammation at the area of injection, possibly providing temporary or permanent relief. A pill can possibly help the nervous system cope with pain. In any case, one or two injections can be worth a try, but you can't continually keep getting them.

You didn't say how symptoms first came on. Based on your description, I would talk to a few other doctors, of varied backgrounds, maybe get some bloodwork done too to test for systemic diseases. Do you have any lower back problems, by any chance? Did you try orthotics? If the origin of your pain is coming from tight calves or some other such problem, a TTS release at the foot would be less likely to help.

There are options other than crutches. One is a sort of adjustable knee cart on wheels. You place the knee with the casted foot on the flat-lying cushioned pad, there's a pole sticking up for your hands to hold on, and you push off with your good foot. It's not too heavy and collapses to fit in a car. Its only real weakness is steps. I might get that if I need another surgery, as the crutches hurt and, given the distance I had to walk in them the last time, I had nerve problems in my hand for some time after. If it comes to surgery, if you ask, your doc's office may be know how to get one, or else check with renters of medical equipment. It might be something like $25 a month to rent or $300 to buy.

Re: TTS surgery

Ellen F. on 10/10/02 at 09:56 (097225)

hi and thanks for your response. I had Avascular Necrosis in my right wrist, leading to a radial shortening about 4 yrs. ago. I can't seem to get the Dr. to even consider the idea that I may have AVN in my heels. Yes, I do have back problems, had MRI which was neg. for disk problems. Have seen chiro. in past for back, he claims is related to 1 leg shorter than other?? had several adjustments, did help back.Dr. that did nerve studies said is not back, somehow they know based on their readings.FYI, i was told wrist was 'classic' carpal tunnel, then was in cast for 6 weeks because whoever read x-ray said was a 'fracture', was neither. I had to see 4 Drs. and go thru MRI, x-rays and fluoroscopy before had definitive dx. I am so glad i checked you guys out, before deciding on surgery, you all have me thinking now. The Dr. said maybe casting, then said no. Maybe he knows how much I hated those shots. in left he did on outer ankle, the right was the killer, he had to hit the nerve. I sure feel bad for anybody that has this. I really like the 'pro active' approach, you guys are great! I get the feeling that everything i mention to him that I've read he doesn't really agree with, but it is not him going thru it, i want to know everything first. I am not a 'classic' case of anything. Past 10 yrs. i have have 7 surgeries. funny but i had a cyst taken off of top of right leg in my thigh that was 'abnormal' and i have done reading and they grow on the nerve. How i found it , pain and burning, very intense every night for about 10 minutes when i laid down. There could be many reasons for all this as you say. I am thinking of checking out this Dr. at Johns Hopkins. I so appreciate all of you and your suggestions they all seem possible and many I haven't tried at all. Evavil, i have it here have taken before for ? fibromyalagia, didn't seem to work, but who knows, this is different problem. I definetly am pleased with all the suggestions. Thanks again.

Re: Compression socks

Ellen F. on 10/10/02 at 10:03 (097226)

i used socks for circulation before, i'm sure they are similar, only complaint was they wouldn't stay up. i might give these a shot, could help i don't know.

Re: TTS surgery

Sharon W on 10/10/02 at 10:04 (097227)

Ellen,

Have you had an MRI of the foot? Since you had a cyst taken off of your right leg, it is possible you might have one in the tarsal tunnel area, and an MRI (or a diagnostic ultrasound, if your doctor can do it) should reveal it if you do.

If there IS what the doctors call a 'space-occupying lesion' in your tarsal tunnel area, then surgery is more likely to be successful than if there is not. And it would certainly be worth KNOWING about, one way or the other, BEFORE deciding whether surgery is the best option for you.

Good luck with all of this.

Sharon

Re: TTS surgery

Ellen F. on 10/10/02 at 10:24 (097229)

i don't disagree, he seems a little anxious to cut me. just made on-line appt. at Johns Hopkins, will see if i get response. He wants to do surgery beginning of Nov. I'm keeping my other 'options' open at this point. Thanks

Re: TTS surgery

Lara T on 10/10/02 at 14:25 (097243)

A guy in Canada developed a 'knee crutch'. It sounds a lot like the 'knee cart' (and probably is more comfortable for flat services that the 'knee crutch' but the knee crutch can do stairs. It has it drawbacks but works for some people. The guy who invented it was/is a farmer and broke his ankle - he needed a cruch he could use that allowed him to use his hand.s

Re: TTS surgery

Ellen F. on 10/10/02 at 14:53 (097247)

sounds great, and may work. i am hoping i don't need the surgery, going to try and hold off until i get at least 2nd opinion.

Re: TTS surgery

Sharon W on 10/10/02 at 15:54 (097253)

Lara,

Pretty cool! A 'knee crutch...' sounds like a good idea. How do you come up with tidbits like that??

Sharon

Re: TTS surgery

Lara T on 10/10/02 at 19:17 (097279)

Desperation.

Actually, I saw it on some news magazine show several years ago, and after my feet went 'down the tubes) when I wanted to give my foot relief as rest seemed to be the most effective treatment, I thought of the 'knee crutch' (not it's official name). I am peculiar in that I experience the symptoms absolutely and evenly bilaterally, but if I treat the right foot, both feet get better, and if I treat just the left foot, neither foot gets better. The explanations so far have been 1) it's in your head - the placebo effect, like aspirin is for some people (ignoring the fact that 1) aspirin is known to be effective and 2) if/when aspirin works cuz of the placebo effect, people are expecting it work - unlike me who never expected treating one foot would help both feet!), 2) it's idiosyncratic (the doctor explained this was medical jargon for 'what do you know' or 'who knows why' 3) the body is complicated computer and 4) (my favorite) yea, I've noticed that with some other patients (probably with other medical issues) so I always give shots in the worst foot first and see how much relief both feel get.

Anyway, enough complaining and back to the knee crutch. . .
So. . .I figured if I could rest my right foot, both feet would get better and I went about a google.com search. It took quite a while, and the help of my kids. When I bought it (a year or two ago) you could only get them in Canada (I live a couple hours from Canada fortunately) but at the time someone was working on selling it in the states (Penn I believe, but also mailorder). It can be a little cumbersome, and requires muscles (and tendons) in the back of the leg/knee, so I didn't end up using it as much as I anticipated - but it is an option at times when my foot really needs a rest.

Re: Knee crutch

Sharon W on 10/11/02 at 08:38 (097301)

Lara,

Do you remember the official name of the device -- or, perhaps, is it written on the knee crutch itself? It sounds like a practical thing, especially when it comes to dealing with STAIRS...

(Not that it matters to ME, at this point, but my husband gets gout.)

Sharon

Re: TTS surgery

elliott on 10/11/02 at 08:46 (097303)

As long as you're going to Hopkins, you might want to consider two other very big name nerve docs in the same city, Lew Schon and A. Lee Dellon, both at Union Memorial Hospital.

[]

Re: Knee crutch

elliott on 10/11/02 at 09:12 (097306)

Actually, I believe Scott R still has one left in stock, if I recall for $100 on sale. Here is the link to it he provided a while back:

https://helius.safe-order.net/cgi-heelspurs/a/b.cgi?p=iwf

But hey, I may need that one for myself! Maybe a few of us could buy it jointly, pass it around as needed and share the cost. Or perhaps each of us who needs it post-surgery could keep partially reimbursing the one who originally bought it till the cost is recouped. This would spread out the cost and make it less risky to any individual in case it doesn't work.

[]

Re: Thanks, Elliott!

Sharon W on 10/11/02 at 09:45 (097309)

I don't think it would work for my husband, though; his thigh is too big.

It does look as if it would be quite a bit easier on the OTHER foot (for anyone with billateral problems). And while it does look like it might be hard to get used to at first, it offers a more appealing alternative for those who can't use regular crutches, than either wasting away in a wheelchair or crawling on their knees!!

Sharon

Re: TTS surgery

Ellen F. on 10/11/02 at 19:15 (097353)

it is actually Dr. Dellon that i wanted to see, thought he was at Johns Hopkins?? He is professor there maybe? i may be confused. will check it out further, thanks.

Re: Knee crutch

Lara T on 10/11/02 at 20:56 (097359)

Here's the website.

http://www.iwalk-free.com/

I had to get a replacement part and they were very responsive. I wouldn't hesitate to send your husband's thigh measurement (responding to a subsequent post in this thread) and ask if the crutch would be big enough. AS I remember (it's in the closet right now) the straps were fairly large. I almost ran out of strap to tighten it - there was lots left over for a larger thigh.

Re: TTS surgery

Ellen F. on 10/12/02 at 10:27 (097384)

i checked knee crutch thigh needs to be under 26'(according to the web page) doesn't mean you couldn't see about maybe extension strap of some kind, it is probably a velcro strap. btw, i have been treated like you before with 'weird' symptoms. Took 14 months for me to get my hand fixed, after going to 6 Drs. Keep on looking to you get the help you need.

Re: TTS surgery

Lara T on 10/12/02 at 11:01 (097389)

It's not a velcro strap, although that would be a good guess. Might be an improvement. It's a rubber strap with 'speed bumps' (can't figure out what else to call them) that go through a plastic 'buckle'. It stops at whatever 'speed bump' you want.

I've stopped looking hard (I still keep my eyes and ears open for new things - hence my presence on this board) since I got my compression socks! Prior to that I probably could have been talked in to amputation! I'm envious it only took you 14 months - took about 2-3 years of up and down before I got to compression socks!

Re: TTS surgery

Ellen F. on 10/12/02 at 12:00 (097392)

i actually had the problem long before the surgery, but i never saw a dr. i guess i thought it was 'carpal tunnel' and it would just go away. probably had total of 2 yrs. went thru casts, shots, etc. have you ever been checked for avascular necrosis, you know you can get it in your heels. that is my concern with the TTS surgery because of the artery involvement i don't want to end us with avascular necrosis. are you able to work and and stand and walk ok now? i know from previous post that you are big advocate of compression socks. i have so much amunition to take to my Dr. since getting on the message boards here, it has been really helpful. only thing is i think he will not agree with some of the suggestions, i'm not sure why.(except he wants to do the surgery). I am going to explore my options for sure. i don't think i'm at the point you were at (amputation), but i know what you are saying as i was there with my hand. i have big problems with pain meds, can't take anything like Percocet. I took it for yrs. for migranes, even the site of one almost makes me puke. thanks for all the help to everyone on the site btw.

Re: Compression socks

Lara T on 10/15/02 at 16:24 (097559)

I can't imagine compression socks not staying up. They are knit so tight! I wonder if we are talking about hte same thing. In any case, the mild compression socks come in anklet & knee high. It would be tough for the anklets not to stay up.

Re: Compression socks

Ellen F. on 10/15/02 at 18:54 (097565)

i had some 'Ted' hose which have elastic qualities and are used for circulation that Dr. prescribed after surgeries and also at one point Dr. thought i had blood clot(ended up being a growth on my vein/nerve), anyway not really a per se compression sock, but i'm sure is similar in that pressure is applied. they don't really stay up too well to the thigh high area. where do you get the compression socks? I imagine Dr. would have to order and then i'd have to check with different drug stores, do you have to be 'sized' for them? are they bulky? do they make your feet warm? I guess i really don't know much about them. you can write me back if you want, i'm curious.

Re: Compression socks

Lara T on 10/16/02 at 06:59 (097602)

There are OTC compression socks that many people buy for varicose veins. I don't know if they would work for TTS, particularly while symptoms are severe. I wear the OTC ones sometimes now depending on what I'm doing (i.e. wearing) and how my feet are that day. But I don't know they would have done much while trying to get things under control.

The mild anklets I have are RX and I got from my doctor, but if your doctor doesn't have them, prescriptions can be filled at medical supply stores. The mild and moderate socks come in knee highs (therefore no problem with staying up on the thigh) I believe the next level up come in panty hose, but I'm not sure. My experience is that the podiatrists are more familiar (and friendly towards) compression socks for TTS than orthopedists. Don't know if that's a fluke, local custom, or general.