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l think I have tts - some questions

Posted by William in Chicago on 7/22/04 at 17:22 (156078)

Greetings! I've been dealing w/ what appear to be tts symptoms for a long time - over six months - and finally went to a DPM for a consult. I had an mri done that was inconclusive, got fitted w/ orthotics (which have helped, somewhat), and gone in for pt. I'd say there has been moderate improvement, at best.

I'm a 35 y/o old male and extremely active/athletic. I've been playing ice hockey year round for the last 20 years and I'm also a dedicated cyclist. Since the probs. w/ my feet, hockey has been out and my cycling has been reduced, but the problems I experiecne are more or less there in varying degrees. My DPM isn't sure if it's the nerve, post. tib. tendonitis, or tendonitis in general. PT has helped, but only to a point.

I guess my questions are as follows:

1) If I decide to go w/ surgery (this will be an absolute last resort), will I eventually be able to resume my activities w/out limitation? I'm ok giving up hockey, but not biking.

2) Do they ever do a type of exploratory surgery for this? B/c it sounds like our symptoms could be a number of diff. things and determining nerve compression is dubious at best, do they ever go in to peek and then make a definitive diagnosis if it's not the nerve? Do nothing if the nerve is indeed not compressed?

3) In a worst case post surgery scenario, what can one expect? My DPM has told me that although success is usually around 60%, things can't really get worse from an unsuccessful surgery. True? Do I risk walking w/ a limb for the rest of my life or only being able to stand for 10 minutes at time?

4) Who does more of these types of surgeries, DsPM or orthopedic guys? Are there sport specific people out there for this?

5) Is anyone reading this post an athlete and, if so, have you had tts surgery and how have you recovered?

Many thanks in advance and I wish you all the best health!

THanks,
WIlliam

Re: l think I have tts - some questions

~mark~g~ on 7/22/04 at 22:09 (156087)

william,
1)possibly
2)not in my case and not from what i've heard. you would think they would.
3)you could have a nerve severed, lose feeling or have constant numbness and tingling. mine is worse after surgery. i am 6 months post-op, walk with a limp and can't stand for 10 minutes.
4)i think DPMs but mine would not do it. my ortho foot specialists who did my surgery was supposed to be one of the best, but have since learned not in my case. my new ortho says that DPMs usually are hasty in doing tts surgeries. he has told me that my ortho surgeon didn't do a very good job and that he himself will no longer do tts surgery. he believes only a dr. who specializes in the precision it takes to work around neves should do them. he has recommended a neurovascular surgeon. from what i know now
i would not have had the surgery. i am searching for treatment in my area like what dr.sandell practices(massage and strict stretching and exercise program) which others have had great success. just wish i knew these options before surgery.
5)i was a competitve snowboarder and mountain biker. 6 months post-op and am just doing some road riding spinning easy gears. it does hurt. ice afterwards. and swimming 45 mins. 3 days a week. i have a hard time being on my feet for any amont of time.
surgery as a last option! it is a slow recovery and potentially permanently disabling. best of luck to you!!
lance is king!! ~mark~

Re: l think I have tts - some questions

Pam S. on 7/22/04 at 23:22 (156092)

Dear William
I am from the Chicago area and can give you two good referrals. One is Dr. Kelikian in the city. I am not sure of his first name. He is an orthopedic foot/ankle surgeon. Also, Dr. Steve Haddad in Glenview, IL. He is also a foot ankle surgeon. He did my TTS release several years ago. I would gather as much info as you can, read past posts as there is soooo much info (more than you ever wanted to know about TTS) but I certainly wish I had known about this board before I had jumped into this surgery.

l)BIKING I do not understand why people cannot bike sitting down on low gears without pain with this condition???? Will someone explain that? It is low impact etc. I am scared to try it but I do a recumbant bike at the gym with not problem. I was an avid race walker, tennis player, hiker etc. Now I swim and do various things at a gym. My husband is a huge biker and answers only to 'OH Lance.....' I would like to get a cruiser and bike on the trails. Do I dare? No standing. What about spinning class?

My surgery was considered successful but I am not l00% pain free. Some of my pain seems to be creeping back if I do something crazy like stand for an hour or walk for fitness. I am better but I was in crazy pain prior to surgery. Your decision to have the surgery will depend upon a definitive diagnosis, exhausting all conservative treatments and really just how much pain you are in.

Have you had an NCV or nerve conduction test? Do a search on here about those. Many people explain that test very well. Mine was positive and that is how I really knew I had TTS. Yes, TTS pain can be in your arch and so can PF.

From what you have written, you are young and strong and would most likely recover very nicely from the surgery. It is NOT easy and we have all had different experiences. I have never heard of any exploratory surgery.

MOST IMPORTANT POINT is to find a surgeon who is very experienced with this type of surgery. Ortho Foot/ankle are usually the best trained. ASK what their success rate is and how often they perform this type of surgery. Dr. Haddad does alot of very complicated foot ankle surgeries and does not specialize in TTS but I can tell you he is very well regarded in his field. So is Kelikian. I really cannot imagine you would be WORSE but it is possible. Just keep in mind there is a chance you will not be that much better. There are several on this board who have traveled to a Dr. Dellon (do another search on him) and he is supposed to be terrific with nerve related surgeries.

There are meds you can take like Neurontin (do a search) which really help with nerve pain. Gather all this info. and make an appt. with one of these guys. They will be impressed with all you know!!!! I take Neurontin and it really helps me.

You really have to get a difinitive diagnosis. Stick with PT. It can take a long time for that to help. Believe it or not, I end up in PT every year to keep my foot pain under control and I had this surgery in 99.

I get depressed every time I answer a question because this all sounds rather overwhelming I am sure. It is really a crazy, life altering deal which no one has ever heard of.(except us!!)

I think I have said enough. Remember, I am not a Dr. Just dealt with this for alot of years. Yes, I am glad I had the surgery because I could not live with that intense nerve pain. It is really an insidious pain. You really can lead a normal life with this once you get over having to give up a few things. I KNOW how tough that is. Don't panic. You are only beginning this journey and you will get lots of support and help here.

Good luck, Pam

Re: l think I have tts - some questions

cindyp on 7/22/04 at 23:47 (156093)

1) If I decide to go w/ surgery (this will be an absolute last resort), will I eventually be able to resume my activities w/out limitation? I'm ok giving up hockey, but not biking.

(yes you can resume most activities but it will take a bit of time. you cannot just jump back into the old routine.

2) Do they ever do a type of exploratory surgery for this? B/c it sounds like our symptoms could be a number of diff. things and determining nerve compression is dubious at best, do they ever go in to peek and then make a definitive diagnosis if it's not the nerve? Do nothing if the nerve is indeed not compressed?
( No my dr. looked at my mri and said that is what it was. there is i think no sense going poking a prodding and then really causing damage.)

3) In a worst case post surgery scenario, what can one expect? My DPM has told me that although success is usually around 60%, things can't really get worse from an unsuccessful surgery. True? Do I risk walking w/ a limb for the rest of my life or only being able to stand for 10 minutes at time?
( Things can always get worse. But if you get a dr. who has done many of thse surgeries Foot and ankle reconstrutive surgeon you can have a very good outcome. I do not walk with a limp and can stand like a normal person.) Again however this took time to accomplish.
4) Who does more of these types of surgeries, DsPM or orthopedic guys? Are there sport specific people out there for this?
I don't know who does more than others. I guess you have to ask a better expert. Dr. Z can give you good names. do not jump into this i saw nine dr.s before i got to somebody willing to help me.

5) Is anyone reading this post an athlete and, if so, have you had tts surgery and how have you recovered?
no having had tts for as long as i did i was unable to walk much less be athletic. i am however able to walk and be 90 % normal now. I don't run or anything but i am no longer in agonizing pain. again do not rush into this but be advised it takes time to recover. by time i say over a year .

Re: l think I have tts - some questions

LARA on 7/23/04 at 05:36 (156099)

1) If I decide to go w/ surgery (this will be an absolute last resort), will I eventually be able to resume my activities w/out limitation?

Maybe, maybe not. Depends on if you you improve and how much.

2) Do they ever do a type of exploratory surgery for this? B/c it sounds like our symptoms could be a number of diff. things and determining nerve compression is dubious at best, do they ever go in to peek and then make a definitive diagnosis if it's not the nerve? Do nothing if the nerve is indeed not compressed?

I doubt it. I've never heard of it. Most (all?) doctors will tell you
that surgery on the foot is more problematic than surgery above the knee - the blood circulation just isn't as good at the extremeties and chances of infection, scar tissue etc. are greater than with most other surgeries. There are things to do to make this less likely, but not guarantees.

3) In a worst case post surgery scenario, what can one expect? My DPM has told me that although success is usually around 60%, things can't really get worse from an unsuccessful surgery. True? Do I risk walking w/ a limb for the rest of my life or only being able to stand for 10 minutes at time?

The worst case is things will get worse. There are people on this board who have reported being worse after surgery. It's not the most likely outcome, but it seems more frequent that with most other surgeries I've heard about.

Actually, the worst case might be RSD, but my opinion is that worry about RSD is like worrying about injury wtih sports. Certainly a possibility, but not a reason to stop if reasonable care is taken. There are lots of other better reasons to be cautious with TTS surgery.

4) Who does more of these types of surgeries, DsPM or orthopedic guys? Are there sport specific people out there for this?

Some doctors do see a lot more of sports patients than others (not sure if it counts as a specialty).,and I've found them (be it an orthopedist or podiatrist) to be better with TTS. If you have a professional basketball team nearby (basketball as opposed to other sports because basketball is so much harder on the feet than most sports - at least sports with team doctors) I'd see if I could found out who the doctor for the team is and see what he has to say.

5) Is anyone reading this post an athlete and, if so, have you had tts surgery and how have you recovered
sorry - no help here, I've avoided surgery so far.

Re: l think I have tts - some questions

Ed Davis, DPM on 7/23/04 at 10:18 (156116)

William:
This is rarely something to do exploratory surgery on. A nerve conduction velocity test can help rule in or rule out TTS. An MRI can determine the condition of the posterior tibial tendon. Plenty of top notch docs in Chicago like Lowell Scott Weil, DPM, podiatrist for the Chicago Bears.
Ed

Re: Thoughts on a Doctor

Carol D on 7/23/04 at 16:16 (156145)

I had surgery done by Dr.Haddad 13 months ago. I had very severe symptoms before surgery. I had searched long and hard for an MD and chose him, in part, becuase he had written a chapter about nerve entrapment in an orthopoedic text book. He ordered an MRI which showed a small tumor on a nerve. He is very committed to excellence and precision. I am now 95% recovered. I am able to attend low intensity aerobics 3 x a week--bike up to 25 miles a day etc. I am 65, so this is about the same level as before surgery. The important thing is to get as good a diagnosis as possible before having surgery. Dr. Haddad would be a good choice in your area.

Re: l think I have tts - some questions

Marty in SLC on 7/23/04 at 19:44 (156159)

Are you sure you have TTS??

I would suggest a nerve conduction test.

What kind of medication are you taking.

As far as the questions I think you have gotten some great posts.

1. If there's a cyst or an obstruction changes are good you will recover fully. Your young and only had this 6 months.

2. no

3. worse, but for the most part no improvement. (if nothing found that was wrong)

4. no sure

5. yes .... competed in karate for years. no more competing for me.

good luck

marty

Re: l think I have tts - some questions

William in Chicago on 7/24/04 at 11:50 (156199)

First off, thanks to everyone who resonded to my post! Your advice/input has been invaluable and I really appreciate it greatly. Nothing like people helping people!

People have mentioned nerve conduction tests here, and I'm curious as to which. Is it the VAS test? EMG? something other. Also, from what I've read in other posts, it appears that these tests are not entirely reliable. Have any of you or how many of you have had tests done that have conclusively determined that it was a nerve entrapment? Has anything else determined conclusively TTS (I know 'syndrome' indicates symptoms, etc.)

In my case, they really have no idea what's going on and have narrowed it down to a few possibilities. I'm content to continue w/ my regime of PT, stetching, ice, strengthing, etc. for an indefinite period. Some days are better than others, but from what I've read in re surgery that seems like quite an ordeal. I had my ACL done when I was 16, and TTS recovery seems more uncertain/longer than that, and that was 1986.

Again, thanks so much to all of you who responded w/ recommmendations and info. All the best health to all of you!

Re: l think I have tts - some questions

LARA on 7/25/04 at 08:59 (156227)

The Nerve Conduction TEst is the NCV test. I believe (but am not certain) it often is conducted along with a EMG test so sometimes may be referred to NCV/EMG, or referred as just one but the other one is also done.

The NCV test is very reliable. That means if you perform the test twice, you'll get approximately the same reading.

It is also fairly valid - that means that it is telling you what you think it is telling you. The major problem with the NCV test is the false negatives. If the NCV test comes back postive for TTS, you undoubtedly have TTS. However, if it comes back negative for TTS, it doesn't mean you don't have TTS.

An MRI can look at your Tarsal tunnel and IF there is something there impinging on your tibial nerve it MIGHT show up. A mass is likely to show up. A varicose vein might show up.

Another non-invasive treatment that doesn't require stopping any of the other things you are doing and helps some people are compression socks. They were magic for me. OTher people have had some success. Other people don't like them. As best I can tell, they work best when there is no known mass (or a known varicose vein). If there is a mass (other than a varicose vein) I woudl think the compression sock would just squeeze things worse. However, the compression socks works because of hydrolics with varicose veins. They may (just a hypothesis) also work to squeeze out accumulated fluid for people whose TTS is related to water retention.

I haven't had surgery, but my impression is the same as yours. The doctors I trust have pretty much recommended against surgery if I can have a reasonable life without surgery - even if they can determine there is a varicose vein or other mass in my foot. My pod doesn't care to do an MRI because even if she found a varicose vein (she suspects I have one) she would recommend against surgery since I've learned to live with TTS.

Re: l think I have tts - some questions

William in Chicago on 7/25/04 at 14:04 (156235)

Thanks for your comments and suggestions, Lara. Where does one find compression socks and what brand has worked for you?

Also, do you take any medications to alleviate any part of the problem?

Thanks again in advance!

Re: l think I have tts - some questions

LARA on 7/26/04 at 11:24 (156272)

I initially got my compression socks from the podiatrist and a medical supply store. However, I think that was so insurance could cover them, as I ahve seen them in drug stores (often advertised for people with varicose veins) and recently saw them in a catalogue for air travel. There are some semi-compression socks made out of cotten or such, that have a little extra elastic around the arch - I think advertised for running. I love them, their comfy, but it's not those. YOu want the ones that look like nylon socks (actually, they are nylon socks, justt stiched to have much more pressure on the leg. I've never paid much attention to brands I've seen them in mild, moderate, and something stronger than moderate but I don't know what they call it. I use the milds and moderates.

I like the anklets best, but can't always find them in drug stores. The knee-highs take a little getting used to - but much preferable to the pain of TTS. They aren't real sexy looking - but I figure they are more sexy than a person in pain!

I used to take NSAIDS - prior to a diagnosis. It helped a lot, but didn't stop the progression and eventually my stomach couldn't take it anymore. I've been offered neurontin, but haven't tried it yet.

Re: l think I have tts - some questions

Laurie on 7/31/04 at 17:49 (156673)

Good Luck to you. I've had 2 TTS surgeries done on the same foot...the first by the Eagles Ortho and the second by Dr. DeJesus (from Dr. Dellon's office in Baltimore MD). If you choose to do the surgery, I highly recommend you go to a nerve specialist. Not an orthopedic or a podiatrist. I have been told by some of the best doctors in Phila when my first surgery didn't take to not mess around with it and Baltimore was the only place to go for this type of problem. Wish I would have done some more research before the first one because although my Ortho doc was one of the best in PA (which was all I needed to hear), he's not the best for TTS. Dr. Dellon/Dr. DeJesus's office will be able to determine in 1 test if you have TTS or not. MRI's, EMG's, Ultrasounds won't tell you like their nerve test. I'm about 3 months post 2nd surgery and I'm in PT and go 3 times a week. I'm getting better but I know I have some time to put into it before I'll be able to stand more then 10 minutes let alone back to chase after my 2 small kids or run the 5 miles a day that I use to do Way back when before the injury but I'm told I'll be able to. Going into it I knew that I'd see the full results in 1 year's time so I'm being patient and at this point it looks good. Good Luck to you...

Re: Laurie - excellent post!

Darlene on 7/31/04 at 22:38 (156690)

I just want to say that this is an excellent post - very informative!
What type of tarsal tunnel problem did you have? What exactly did they do in your surgery? It must be hard with 2 young children.
Darlene

Re: l think I have tts - some questions

Terry D. on 8/01/04 at 20:20 (156737)

Hi William,
I am 54 and had tts in May of 2003 so I'm 14 months post op. Dr. Dellon did my surgery and found a cyst about the size of a quarter wrapped around my nerves especially the calcaneal (sp). Interestingly I went to LA to have a world reknowned neurosurgeon take a special kind of 3D MRI called MR neurography which can see periphal nerves....he totally missed the tumor! I thought that would have been helpful knowing it was there. Anyway I ended up in Baltimore with Dr. Dellon.
I was in accute pain before surgery. Lost 21 lbs. due to lack of sleep and incrediable pain. Went from 170#s to about 150#s in about 6 weeks.
I was essentially pain free the day after surgery. Didn't evven have to take any pain medication for the surgery.
My foot though was very numb and very tight where the incision is. I walked in the water and stretched daily.
Little by little the feeling has come back in the skin at the bottom of my foot. But I still have a tightness where the incision is and quite a bit of muscle numbness alone and under my little toe.
I was a runner. That has pretty much come to a halt. I can jog a 400 meter and walk one for about 1.5 miles but it is uncomfortable. My foot isn't the same. I've not lost hope yet.
I am seeing Dr. Sandell in Minneapolis. He is terrific. He provides deep tissue massage and thereapy to help break up the scar tissue. I've only gone twice...tomorrow will be my 3rd. I'll keep everyone posted.
In retrospect. I still would have the MR neurograpy done in LA but make sure the Dr. looks for ALL possible causes of tts. Then I wouldn't have anyone else but Dr. Dellon do the surgery in Tuscon or Baltimore. He is the most knowledable surgeon in the country with tts.
But where I would really differ from what I did is I would have Dr. Sandell rehab me. I don't care if I had to fly to Minneapolis once every two weeks. It's so critical to have the correct kind of therapy ...that Dr. Sandell provides. His sessions with me last 1.5 hrs.
Encouragingly, you should have no trouble biking. I bought a recumbent this summer and bike daily. Also, swimming, lifting weights etc should be no problem. If you come out pain free hockey will be a minor concession.
Best of luck,
Terry

Re: Terry D

Darlene on 8/01/04 at 21:41 (156744)

Thank you for your great post. What kind of wait was there to get into see Dr. Dellon? I'm hoping for a consult. appointment.

Thx.

Darlene

Re: l think I have tts - some questions

marie on 8/02/04 at 19:09 (156784)

William before you even begin to think of surgery you need to be diagonosed with tts. I did not have the surgery. I made the decision to try every noninvasive treatment out there. I can walk, run a little, ride my bike, stand in line....almost normal. Don't jump into surgery...exhaust all the other treatments before you even consider it. These are the things I have done that gave my life back...............sorry old timers...I post this alot for new comers and I know it seems redundent.

I was dx with tts in 2002. TTS symptoms began in 2000. My first symptom was tightness in my knees. I thought it may be arthritis so I ignored it. In the summer of 2001 my feet began to bother me. In August I had a major flare up that literally knocked me off my feet. Assuming it was arthritis I thought I better consult my GP. He prescribed some arthritic medications but there was no improvement.

I was referred to a Podiatrist. He is a wonderful doctor. His concern was that some of my symptoms were not typical of tts so I went through a battery of additional tests before they began to treat me. Recovering from tts is like having another full time job.

I went from a wheel chair and scooter to walking two miles in the Multiple Sclerosis walk. A cause dear to my heart.
My goal this year is to walk six miles. I may not break a record for speed but I know I can do this.

This is what has helped me.

Physical Therapy

Ice (frozen peas work well) for swelling. About 5-10 minutes per ankle. Two-three times a day as needed.

Light stretches......very light.

Medications: Neurontin 300 mg 3x daily, 50 mg elavil

Vitamins that I sware by: MSM, Glucosamine, Vitamin C, Magnesium. Some have had success with vitamin B6 and 12.

Compression socks and mens support socks.

Birkenstock shoes. I am especially fond of Arizona and other soft bed styles.

Progesterone cream on my ankles and knees twice daily.

My hubby massages my meta tarsals, ankles, calves and thighs. At first this was done twice a day. Now I only ask for a massage once or twice a week. NEVER massage the tarsal area vigorously. My PT and I found that out the hard way. It was a major setback.

Some have had success with Ibuprofin creams.

Light non weight bearing exercises.

Distraction from pain. My brother, who has MS, suggested emmersing myself in activities or projects that would take my mind off my feet. It helped me maintain my sanity.

Everyone is different. What has helped me may not help you. Please feel free to add what has helped you.

Re: Terry D

Darlene on 8/02/04 at 22:21 (156798)

I initially emailed Dr. Dellon and received an immediate response the next morning. I flew to Tuscon as that was quicker then Baltimore. I think I only needed about a 10 day advance....maybe two weeks but my initial consult, and the schedule for surgery were quite easy. I also saw him this June in Baltimore and I only called two weeks in advance.
Best of luck,
Terry