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8 Months post TTS Release

Posted by Laurie on 3/09/04 at 17:28 (146555)

I had my TTS release 8 months ago and I'm finding the more I use my right foot the more it hurts. My doctor still hasn't released me to return to work yet and has me on Neurotin to help calm the nerve. He's now talking about redoing the procedure or wrapping the nerve. Anyone have these problems with the recovery or have had the nerve wrapped?

Re: 8 Months post TTS Release

Terri on 3/09/04 at 19:40 (146564)

I was warned that the surgery doesn't always work and may need to be done again, same for people with carpal tunnel syndrome. Haven't heard about the wrapping procedure personally. How's the Neurontin working? I'm a little surprised you weren't already on it post-surgery, most of us were and still are.

Re: 8 Months post TTS Release

elliott on 3/10/04 at 10:13 (146602)

Laurie, can I ask exactly what and where were your pre- and post-surg symptoms? Was there an MRI? What was found at surgery? The more detail, the better. Thanks!

elliott

Re: 8 Months post TTS Release

Laurie on 3/11/04 at 17:05 (146736)

Before the procedure my foot and leg felt like it was going to sleep and numb at times. I couldn't move my toes, my foot was often swollen (worse after walking), and when the doctor flicked just below my ankle I felt electric type painful shocks down my foot to my toes. It often felt like my toes were being pulled. When I first injured my foot (by tripping and my foot went straight back), the top and inside of my foot was purple and was so for about 3 months. I had a partial tear to my posterior tibial tendon, which wasn't diagnosed until 4 months after the injury. 2 sets of x-rays just after the injury showed no fractures. 2 sets of EMG were done and they were both negative. I had the TTS done 12 months after the injury. Now, the feelings I'm having are really sharp pinching feeling like someone has a death grip on my ankle and is quite painful. I feel this even when I first wake up. My foot always feels swollen but isn't always noticeable. I can move my toes now, but the more I do the more my foot swells. The more I walk the more it hurts. I'm starting to get the 'falling asleep feeling in my foot below my toes and in my leg and the pulling feeling in my toes seem to be coming back. If I'm on it more then a few minutes I feel a burning sensation on the scar. I just had another MRI and it shows the tear has healed and the thickness is gone, but my doctor said after reviewing my films that he saw hot spots. I am on the Neurotin and it does seem to help a little. I use Lidoderm patches but I have to be careful. They do take more of the edge off, but I find that I'm up at night with more pain then before I guess because I'm using my foot more.

Re: 8 Months post TTS Release

Laurie on 3/11/04 at 17:11 (146738)

I was told it may need to be done again, but I honestly had no idea this soon. The Neurotin does take some of the edge off, but it makes me really tired and loopy. Some days I'm really dizzy which I think is partially why I'm not back to work yet. I admit, I didn't research the procedure before the operation. I only researched the doctor. I wish I did so I would understand a little better what's happening to me. I was starting to think I'm being a big baby about this or this is just the way it's going to be (which is hard to take considering I'm only 32 and in good condition). I was told I'd be out of work for 6 - 12 weeks. I was barely walking at 12 weeks, I had no idea! I still would have had it done, but my employer probably would have appreciated more notice on my leave.

Re: 8 Months post TTS Release

Claire on 3/12/04 at 04:22 (146763)

Hi Laurie, I completely sympathise with you. I am having TTS release in London at the end of March. It is so frustrating to think we have out whole lifes head of us and we have these problems. Luckily i have really researched the operation, because i had Mortons Neuroma in 2002, which i didn't research at all, consequently pushing myself too hard in the recovery period. I don't know if this has contributed to TTS or it was there before. I can't believe you are still off work, they must be able to give you an explanation as to why you are taking so long to heal?

Re: 8 Months post TTS Release

Laurie on 3/12/04 at 06:29 (146765)

Good Luck with your procedure at the end of the month. I hope it turns out for you.

My doctor was telling me up to about the 4th month, that although it's like carpal tunnel, it's much more complex and since you don't walk on your feet (giving 5 X the weight in pressure while doing so), the recovery can take 6 months. He told me from the beginning that this procedure shouldn't be taken lightly which is why he made me wait 9 months to have it done. At about the 7th month, he sent me for another opinion. My insurance company so far has approved up to the 6 months of disability and I'm in the process of getting the balance approved now. I do think that being on the neurotin (it makes me really tired to the point I have to close my eyes and even sleep some days after the 2nd pill and dizzy at times) and the fact that my job sometimes requires me to be one my feet all day or I'm in and out of my car some days to different sites has something to do with why I'm out. My employer is starting to get a little frusterated I think because they are changing my job description. I did start working from home 4 hours a day last week to show that I am trying to get back to work. I'm just as frusterated as them!

Reading some of the studies, I feel like I'm right in line with the average. I was reading that 9 months seems to be the avarage recovery for this but was very surprised that only about 80% in the one study found releaf. Another study showed that something like 35% had to have it done again, and 15% of the total had to have the nerve wrapped. The study mentioned that most people who get TTS have flat feet, run and have had injury to the posterior tibial tendon...I am all of those.

Let me know how it goes...I'll be thinking about you!

Re: 8 Months post TTS Release

elliott on 3/12/04 at 09:09 (146775)

Laurie, in reading over this thread, I have a few thoughts.

As much as I can make out from your description, it seems your TTS was caused by trauma: 'tripping and my foot went straight back'. I'm not 100% sure what that means, but that's OK. I take it you had just a pure TTS release, or was there some other repair (e.g. to a tendon) done as well? I think whoever you are seeing has to figure out whether there has been any injury (that caused either the TTS or other related symptoms) that has not yet been addressed. You should also give some thought to whether the surgery itself gave you something you didn't have before.

The main TTS nerves are both motor (related to muscle control) and sensory (related to feeling and sensation). It sounds to me like you have some distinct motor deficits, and yet the EMG showed nothing. If you are far worse in the toe movement department than before, it may pay to get another EMG, maybe from someone different this time.

As Wendy was wondering, I'm not sure why so many here are being given neurontin post-surg. Neurontin should not be needed to cope with post-surg pain. It's also masking the surgical results. Neurontin is a drug geared towards long-term pain reduction for those who need to cope with unresolved nerve pain, and the dosage should be built up over a period of time. And yes, it can make you sleepy, dizzy, disoriented. Under normal circumstances, when one gets the usual TTS release, he/she takes the usual post-surg pain-killers for a couple of weeks, the stitches get removed, and then walking resumes almost immediately (the TTS surgery does not go in too deep). Sure, the nervy results are unpredictable and can take a long time, if ever, to settle down, but if people are having trouble walking months later, there probably were other possibly unresolved or newly created issues going on.

I would not rush into a second surgery, especially if you are not in constant nerve agony; results for revisions generally go way down. The vein wrap may help address recurrence of nervy symptoms, but probably not many of the other things you are complaining of. It may pay to go for a few opinions to the big TTS names around the country and see if they can arrive at a clear picture and what to do about it.

I also have flat feet, ran, and had an injury to my posterior tibial tendon. Small world. :-)

Re: 8 Months post TTS Release

elliott on 3/12/04 at 09:10 (146776)

Claire, did your Morton's problem clear up?

elliott

Re: 8 Months post TTS Release

Claire on 3/12/04 at 10:01 (146779)

Hi Laurie... I can only imagine your frustration but it is good you can work four days a week from home to prevent the boredom from driving you insane. Are you in pain all of the time still? Are you experienicing the condition bi-laterally? I think my surgeon has suggested six weeks off work, I'm lukcy enough to have a very suppportive company being me, they pay all of me health fees and i get fully paid whilst off.
I have flat feet too and have always engrossed myself in lots of activities and worn silly shoes so all of these things must have contributed to my TTS. Try and stay positive i know it is SO hard, i hoep you have family and friends giving you lots of support. Have you thought about trying any alterative therapies to encourage the healing process?

Re: 8 Months post TTS Release

Claire on 3/12/04 at 10:06 (146780)

Hello Elliot. The procedure was a success and the mortons neuroma pain disappaeared but seems to have created other problems in the process. I still have a light pain in the area at times, my surgeon has suggested this is because of the TTS. The TTS did not materialise immediately after the operation and seems to be getting worse and worse by the month. I was back at the gym after 2 months and working in promotions at weekends so these activities may have aggrevated the symptons, who knows?!

Re: 8 Months post TTS Release

Laurie on 3/12/04 at 10:10 (146781)

Thanks for you response.

Nothing else was done during the surgery, just a TTS release. He decided at the last minute not to stitch the tendon. (and said after reviewing my MRI done 8 months post surgery, he was glad he didn't because it healed really nicely) He did cut out a 'fat pocket' but nothing else.

I do have constant pain, it just get's worse during the day with movement. I have a hard time standing for more then a few minutes (although, first thing in the moring I can stand about 30 minutes before feeling like I have to sit) during the day. By dinner time I can't stand to stand at all. Keep in mind, I'm working at home and sitting 4 hours straight then up and down a few times before dinner time and I don't drive but maybe 2 miles a day.

I was given the neurontin months after surgery because when touching on and around the scar I just about jumped out of my skin.

I have gone to 1 other orthopedic and he has made the same suggestions as my doctor. I am now being referred to someone who does many TTS releases during a year (after my doctor finds one that doesn't just do high profile people). If you have any doctors that you know of (I'm in PA), I would like to give them a call.

I'm not crazy about another round of surgery, but I can't imagine another altnerative that will stop this pain. I already did the changing of the doctors (the doctor that did the surgery was the 2nd I went to), tried everything under the sun for 9 months then surgery was suggested. I hate the thought of doing that again...19 months after the injury.

Re: 8 Months post TTS Release

Claire on 3/12/04 at 10:10 (146782)

CORRECTION SPELLING MISTAKES (SORRY TYPING WHILST AT WORK): I think my surgeon has suggested six weeks off work, I'm lucky enough to have a very suppportive company behind me, they pay all of my health fees and i get fully paid whilst off.

Re: 8 Months post TTS Release

elliott on 3/12/04 at 10:19 (146783)

Laurie:

The trouble you have standing for more than a few minutes: was that only after surgery or even before? What exactly makes you sit down? Pain as in nerve pain, or something else? Did you feel like you initially got substantial nerve pain relief only to have it return? Or what?

Where in PA do you live?

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Re: 8 Months post TTS Release

Laurie on 3/12/04 at 15:52 (146809)

I had pain before surgery too while standing. It's been so long that I don't remember. I remember the pain and soreness in my ankle and the numbness in my foot and leg, and I couldn't move my toes (and my foot was visably swollen). I felt like I was always shaking my leg as it it would wake it up. I don't remember having the tight grip type feeling in my ankle though.

After surgery the tingling/going to sleep feeling was gone. It felt fine as long as I had it up. The only problem I had was when I stood up, even it it was just for a second on crutches. Then I felt a throbbing feeling and that lasted about 4-5 weeks. I assume that's normal. I did have about a 5 inch incision in my foot. The burning sensation isn't always there. I'm starting to feel tingling in my calf which at first I just thought it was from pushing myself as told to do by the doctor. His thought was that maybe I just needed to get over the hump. Now it seems like he's thinking otherwise. When I walk I get this same types of sensations, but my toes start to feel like they are being pulled and the swelling sensation gets worse. Some nights it looks swollen, most nights it just feels swollen. When I started walking around 5 weeks after surgery with a cam walker boot, I felt like I had a really sharpe knife in my ankle and sometimes like there was a butcher knife in the heel and ankle. I still feel this sometimes but only if I'm carrying something heavy or pushing something like a vacume or walking around without my sneakers or stop/go driving does it too.

I live in eastern PA, just outside Philadelphia.

Re: 8 Months post TTS Release

Terry D on 3/12/04 at 21:57 (146833)

Laurie,
Pa isn't too far from Baltimore where Dr. Dellon practices. it might be a good idea to see what her thinks. He did mine and i'm pain free but still have some numbness.
Terry

Re: 8 Months post TTS Release

elliott on 3/13/04 at 21:52 (146903)

Laurie, a lot of failed TTS surgery cases seem to complain of the nervy problems spreading further up their calf, sometimes even to their knee. Not that that is necessarily your your case, though.

Eastern PA? Great! I have two recommendations:

1. Dr. Kieran Mahan, DPM, who heads Temple's podiatry institute in Philadelphia and does clinic there. He's written on TTS too.

2. Dr. Lew C. Schon, a foot/ankle orthopedist at Union Memorial Hospital in Baltimore (about 1.5 hours away). He is a very big TTS name. He sees loads of failed TTS surgical cases. He does the vein wrap, should that be necessary.

If you need yet more opinions and are willing to travel to the other side of PA and beyond, I can give additional names. Strongly suggest you see the above two for starters. Your problems are complex enough that a few opinions would not hurt.

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Re: 8 Months post TTS Release

Laurie on 3/14/04 at 07:58 (146922)

I tried making an appointment with Dr. Schon about a week ago and was told he didn't do anything with the nerves. I thought that was odd because he was suggested to me by 2 doctors. While looking for another known TTS doctor on line, I saw that Dr. Schon had just done a TTS release on one of the Philadelphia 76ers in January so I called again. This time I was told that it must have been a 'special case'. I'll take that as he only does high profile individuals. Thank you for all the info. I'll give Dr. Mahan a call and see what he has to say.

Re: 8 Months post TTS Release

elliott on 3/14/04 at 08:39 (146925)

Laurie, whoever you spoke to must have been uninformed. He always has a waiting room full of 'regular' people. He operated on me twice--TTS on one foot, neuroma on the other--and I don't have a sports contract. Just call the number appearing next to his name on this link

http://www.gcoa.net/Foot-And-Ankle-Doctors.asp

and make an appt. It takes a while to get to see him the first time, but it is worth the wait.

Re: 8 Months post TTS Release

Laurie on 3/14/04 at 15:46 (146959)

Elliot,

This is the number I called, twice. How long ago where your 2 procedures? I filled out the form to contact the office...maybe I'll get an appointment that way.

Re: 8 Months post TTS Release

elliott on 3/15/04 at 08:44 (147030)

Laurie, I had a TT release on left foot, July 00; neuroma excision on right foot, Oct 03. I've met 'regular' people from PA in the waiting room who were there to see him.

Call again and just try to make an appt. That is the same number I call. If you have a hassle, tell them several doctors told you that due to the complexity of your problems, you must see Dr. Schon, and that you are willing to wait as long as it takes for an appt. The people answering the phones don't necessarily know what Dr. Schon's areas of specialty are. Perhaps if they get too backed up with new patients they close it up for a while, but I am not sure of this. Seeing him is important, so be persistent if necessary. PS-he's a very nice man when you finally get to see him! If he truly is closed up, another on his staff, Dr. Miller, also is familiar with such problems and can do the vein wrap if necessary. But see if you can get Schon first. Let me know how it goes.

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