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Lets hear some Success/failure Stories

Posted by Mike on 11/27/03 at 02:39 (138840)

After being mis-diagnosed with Diabetic PN and told 'You'll just have to live with the pain' more often than not, I have finally found the right Dr. with the correct diagnosis (TTS). I hope to have go in for release surgery early next year.

My Current Dr. is Dellon trained and seems to know his stuff but Im looking for input from those who have had the surgery (Dellon method) and am trying to figure out the real success ratio. So far Ive been told there's an 80% success rate.

Is there anyone out there who has gone through the surgery and has not been releived of the pain? I am particularly interested in diabetic related issues but will take any info I can get.

Vent if you need to. Im open to any and all responses.

Thanks,
Mike

Re: Lets hear some Success/failure Stories

Dr. Z on 11/27/03 at 08:10 (138842)

I though Dr. Dellon told his patients that the sucess rate was 63% for TTS release

Re: Lets hear some Success/failure Stories

Mike on 11/27/03 at 09:20 (138844)

Could be 63% overall but In diabetic patients with positive Tinel's sign its about 80%. Sorry - should have been more specific.

Re: Lets hear some Success/failure Stories

RonB on 11/28/03 at 13:43 (138878)

It has been some time since I have been on this site. I have been struggling with bilateral TTS for about 3 years. Please do not rush into surgery. Exhaust all other options. My surgery was in June of 2002. It was a failure (and recovery is no picnic). My Dr. boasted a 90% success rate. A 60% rate would be optimistic.

Ron B

Re: Lets hear some Success/failure Stories

chris on 12/01/03 at 07:55 (139082)

I have had successful tts and pf surgery. I'm sorry but I do not know the method that was used. I have about a 4 - 5 scar below my ankle bone running down towards my foot. I believe my doctor removed some fatty tissue, scar tissue and I think some a vein. The pf scar is barely visible but I was just a very scar, I want to say that the doc just snip the PF.

I had my surgery in Nov '00 and have been pain free ever since.

Not sure if this helps, but I would have to agree with RonB exhuast all your resources first.

I should also note that I did not find this site until after I had surgery, but continue to read and post if folks ask about successes.

Re: Lets hear some Success/failure Stories

Kim C. on 12/04/03 at 12:40 (139341)

I have severe bilateral TTS and had the release done on the left foot only. I was walking on it the first day after surgery so that the tendon didn't reattach. I had some relief for around a month, but after that I got worse every day. My doctor warned me that it was a 50-50 chance at best, but I was desperate for relief. I have gotten worse after each surgery! Now they are saying that the nerve damage is permanent and not curable, but treatable, they told me I also had neuropathy. You probably have both TTS and PN. Sometimes the nerve is compressed in the ankle as well as further up in the leg, have your dr check that out.
I am now taking Elavil, an antidepressant which helps nerve pain. I would stay away from Neurontin because there is a lot of debate about whether it has been sufficiently tested for use on nerve pain. (I found NO relief from it, and it can cause seizures.)
Don't be afraid to ask for pain killers that may make your days bearable, I wear a Duragesic patch and it is the best pain-relief I have ever had since this started, it releases the medicine in small amounts gradually, and that seems to keep most of the pain at bay.
Try to use a wheelchair and stay off your feet whenever possible, and get night splints, which may help ease the nerves while you sleep.
I hope you have success with your surgery, good luck.

Re: Lets hear some Success/failure Stories

RonB on 12/04/03 at 17:20 (139362)

Glad to hear you had a success story! They seem to be few and far between.

Re: Lets hear some Success/failure Stories

RonB on 12/04/03 at 17:23 (139363)

HI Kim,
There was a lot of debate on the questionable use of neurontin (by the company) for uses other than seizures. However, it has now been approved for use with nerve pain.
Ron

Re: Lets hear some Success/failure Stories

Kim C. on 12/05/03 at 01:34 (139381)

Hi Ron and all who are searching for relief from TTS,

I have to reply because I want to inform and help other people who might be taking or considering Neurontin. I didn't have enough information before I took it, and I wish that I had. I hope that I can show another side of this matter.

The product insert for Neurontin states that the only approved uses are for seizures in epilepsy, OR management of postherpetic neuralgia (shingles). Although shingles causes nerve pain, that doesn't mean that all types nerve pain should be treated with this drug. It isn't always a bad thing, nor is it illegal to use a drug for an off-label purpose, but you should always be cautious when it is done.

There are numerous articles to be found online about the questionable things the company has done to promote Neurontin. There were studies and papers written and given to doctors, without disclosing the source as the company itself. Many doctors got lots of money to learn about and prescribe it more frequently. The 11 off-label uses account for 80% of the prescriptions written for it. There is a lawsuit(s?) pending regarding the way that the company marketed this drug without having enough data to back it up, on behalf of people who were harmed and/or mislead.

In my opinion anyone taking it, especially in very high doses should do research and question their doctor on it. No one should ever stop taking Neurontin abruptly, since it can CAUSE seizures if you stop without tapering the doses down-it should be done with the help of your doctor of course. Besides dizziness, weight gain and sleepiness, it can also cause changes in your personality, suicidal thoughts and acts, and swelling throughout your body. Someone with an entrapped nerve like in TTS does not need ANY swelling, because it will only cause the nerve to be more compressed and increase the level of nerve pain. Every drug does have side-effects, but when a company acts like this to market a drug, you have to think twice about their motives. $$$

Please do not take my word for it, but look around online and you will see plenty on this topic. I hope this information helps-sorry it's long, but there is so much I want to say to help each person who takes this drug.

Re: Lets hear some Success/failure Stories

Monarch on 12/08/03 at 15:00 (139595)

I've had foot problems for eight years. Had all the treatments from ultra sound, corizone shot, wrappings, rest, orthopedics etc. etc. Nothing has worked. So, on Wednesday, Dec. 10th I'm having TTS surgery and a plantar fascitis relase done on my right foot.

I'm now wearing a walking boot and taking codeine for the pain I have had for far too long.

I'm looking forward to getting on with this and hopefully having some relief from this pain.

I'll check back in after the surgery to let you all know how it is progressing.

This web site has helped me come to terms with what I may have to go through in the next few months. Thanks to you all for sharing. I read about your plights, trials and tribuations during the night when I can't sleep.

Re: Lets hear some Success/failure Stories

Monarch on 12/08/03 at 15:03 (139597)

I've had foot problems for eight years. Had all the treatments from ultra sound, corizone shot, wrappings, rest, orthopedics etc. etc. Nothing has worked. So, on Wednesday, Dec. 10th I'm having TTS surgery and a plantar fascitis relase done on my right foot.

I'm now wearing a walking boot and taking codeine for the pain I have had for far too long.

I'm looking forward to getting on with this and hopefully having some relief from this pain.

I'll check back in after the surgery to let you all know how it is progressing.

This web site has helped me come to terms with what I may have to go through in the next few months. Thanks to you all for sharing. I read about your plights, trials and tribuations during the night when I can't sleep.

Re: Lets hear some Success/failure Stories

Dorothy on 12/08/03 at 16:03 (139606)

What a nice name! I hope that your surgery plans bring a metamorphosis for you from painful feet to not-painful feet. (I'm thinking of Monarch in the butterfly sense, not in the royalty sense)
Many of us, I think, use this site in the same way you do when we can't sleep.
Best wishes to you for your coming surgery. Look forward to hearing your impressions....

Re: Lets hear some Success/failure Stories

Monarch on 12/10/03 at 20:02 (139773)

I'm home from the TTS and plantar fascitis surgery. I had it at 8:30 AM and got home around 1:30 PM the same day. Surgery went well. The doctor said I had a varicose vein pressing on the nerve and they took care of the TTS. Said it should relieve the pain I've had. Let's hope!

I'm on ROXICET. It says to take one pill every 3/4 hours and I plan on doing just that. I must put NO pressure on the foot for 3 to 4 week weeks. I came home on crutches (those to the elbow - I would definitely recommend those) and have a wheel chair at home. The doctor wrote me out a prescription for the wheel chair. Insurance will pay for 80% of the wheelchair. I borrowed the crutches.

One other thing that helped me greatly was a a cd set called, Preparing for Surgery /Reduce pain, fear and stress while healing faster and safer. http://www.AMindful Solution.com -- email: (email removed)

I'll keep you all posted on my recovery. Those of you that have written in the past have help me get through this. (especially when I was up in the middle of the night with the pain!)

I thank you all.

Re: post tarsal tunnel

Monarch on 12/18/03 at 09:03 (140204)

I'm now one week post op of TTS surgery. No news yet as to how sucessful it is. I can sleep now -- someting I could not do before surgery. That may be due to the meds though and not the sucess of the surgery. I'm still on a mild pain reliever and will continue to take it until the foot stops hurting from the surgery. My doctor thinks I will get a lot of relief as he found varicose veins pressing on the tunnel and another tight place that he relieved.

A word of advice: be careful after surgery. Those heavey duty drugs make you very dizzy and light headed. I fell on the second day and bruised my bad leg. Lucikly it didn't effect the stitches around my ankles.

I had my first post op visit and the doctor says the surgery went well and I don't have a lot of swelling. I'm doing some light exercies on the foot to prevent scar tissue. (flexing and small circles) I'm worried about my other muscles though as I haven't been able to exercise my legs for a least a month. I'm going to ask him about PT. I do lift some weighs for my upper body off and on during the day. I think that is helping the upper body.

I can begin to walk in another three weeks. The doctor put a walking boot on my foot so as to prepare the foot how to heal in the righ position. This is comfortable unless I try to move the foot. Hanging tough -- not always easy but I have much to be thankful for.

Re: post tarsal tunnel

Mike on 12/18/03 at 09:49 (140206)

Thanks for sharing Monarch!

Im still trying to get insurance worked for the release surgery - man BCBS is hard to deal with! At this point Im ready to pay for it myself but I cant get a straight answer out of my DR as to how much it costs.

Any idea what your surgery cost? For both feet?

Mike

Re: post tarsal tunnel

Monarch on 12/19/03 at 10:20 (140321)

I never even called my insurance (Anthem)to find out if they would pay for it. Now you have me worried! I was in such pain I knew I just had to do it no matter what! I have no idea what my doctor will charge. I have read that it can be somewhere around $5,000. I will get back to you and let you know.

Recovery is a long . . .slow process. I'm one and a half weeks post op and doing quite well. I only had one foot done. Thank GOD!!!!

If you have the surgery be very careful not to do too much the first week or so. Meds are very powerful!! This was my first surgery (I'm 55) and I had no idea the drugs would make you so dizzy and lightheaded. They are great for the pain though.

Let me know how you are doing. We all need to support each other through this!!!