*** Pain Free after Peripheral Nerve Stimulator ***Posted by Henry C on 7/31/03 at 09:09 (125774)
I have suffered from severe Tarsal Tunnel Syndrome (TTS) for seven years and since my life can be described as pure hell. In all that time, one thing has kept me going and that has been the fact that I was unable to accept the fact that I would have to live with pain for the rest of my life. I was very angry and could not accept the fact that I might have to live with this. I never gave up and was determined to find relief. After three operations and a very long rocky road that day has finally come.
I would like to share my latest experience with all of you in hopes of inspiring someone like myself not to loose hope and settle for a life filled with pain.
First of all, I have been seen and operated on by some of best doctors in the country. I was first diagnosed with TTS by Dr. Mark Myerson in 1997 and had TTS decompression surgery in November of that year. The surgery was not a complete success and I soon found a new burning and aching sensation that would not go away on the bottom of my foot. I was referred to Dr. Lew Schon who performed a TTS decompression surgery with vein wrap in March of 2000. Again the vein wrap surgery did not relieve my pain.
Still determined to find relief, Dr. Schon implanted a Peripheral Nerve Stimulator in my leg on May 15th of this year. The surgery was a success in more ways then I could have ever imagined. I am almost completely pain free today and once again enjoying life. It may not happen for everyone, but my will power to overcome TTS has allowed me to regain happiness again.
I was quite nervous about having this operation. Dr. Schon had told me that I would be very limited in my activities. The wire connecting the stimulator and the electrode, which is attached to my nerve, is very breakable. I would have to avoid any activity that involved a repetitive motion with my leg. Since I was in constant pain anyway, I was already avoiding the activities that I once enjoyed like running and snow skiing.
Before the operation, I inquired on this message board for information from anyone who might have already had this procedure. There was no response, so I would now like to share my experience for anyone else considering this option.
I traveled to Baltimore on May 14th and had the surgery on the afternoon of May 15th. Dr. Schon and I met before the surgery and he had me outline the area of pain on the bottom of my foot with a black Sharpie pen. I was taken into the operating room and put to sleep. A five inch incision was made on my left leg right above the incision that made in the vein wrap operation. An electrode measuring approximately two inches in length was sewn onto the nerve right above the incision.
To ensure that the electrode was properly attached to the nerve, I was awakened and an external stimulator was connected to the electrode. The stimulator was turned on to the desired area was effected. Much to the surprise of Dr. Schon and the Medtronic technician, the whole area on the bottom of my foot that I had marked was completely numb. Dr. Schon pressed on the bottom of my foot with his fingers and a pen to test the area. This procedure was repeated several times to ensure that the stimulator affected the correct area. Now that the electrode was properly placed, I was put back asleep.
The external stimulator was disconnected from the electrode and the wire attached to the electrode was fished up my leg under the skin to a place on the inside of my thigh approximately four inches above my knee. A two-inch incision was made and the stimulator was connected to the wire and place under the skin. A large square bandage was placed over the incision on the thigh and the lower leg was placed in an open faced type cast with ace bandages.
I was awakened in the recovery room and was shortly taken to a hospital room. The next morning the Medtronic technician came to my room with the stimulator's remote control unit. I was instructed on its use and turned it on. The bottom of my foot was numb and I felt a strange tingling sensation over the entire area on the bottom of my foot. The feeling felt much like the same sensation that you feel when your foot falls asleep. The Medtronic technician uses a stimulator programmer, which is much like a large PDA to adjust the stimulator. The programmer can adjust the voltage level (0-10 volts) that is applied to the nerve and can monitor how much battery life is left in the stimulator. I was told that at the level I had the stimulator set, the battery would last 120 months. Later that day, I was up on crutches and the next morning, I was released. I was sent home with instructions to stay in bed with the exception of going to the bathroom.
Two weeks later, I returned to Baltimore to ensure the stimulator was still operating correctly and to have the stitches removed. My leg was also x-rayed to establish a base line of the placement of the stimulator, wire and electrode. I was then instructed to turn on the stimulator and stand on my foot. I was told that more time would be required to allow the stimulator to settle in my leg and I was placed in a walking boot and instructed to begin walking without crutches as tolerated. A return appointment was made for six weeks.
For the next two weeks the wire was quite visible in my leg. When I would bend my knee, I could actually see the wire spiral inside my lower leg. I also noticed that I had lost the feeling on the inside of my knee. It was probably due to the routing of the wire.
I used the crutches for about a week and a half and completely removed the walking boot after two and a half weeks. I found walking to be quite difficult.
Also affected by TTS was my sleep, I had a very difficult time getting any more then several hours of good sleep a night. I went to my local doctor and was prescribed 50MG of amitriptyline to be taken at bedtime.
After six weeks, I returned to Baltimore and once again the Medtronic technician checked the simulator. I had been using the stimulator a lot more and I was told that the battery would last another 90 months. Dr. Schon saw me and he was very happy with the results of the surgery. I was told that the battery would last longer if I would occasionally turn the stimulator off when I was not on my feet.
Since that time, my life has continued to return to a normal routine. I used the stimulator and have been able to walk and control the pain. That was until last Sunday, July 27th. On Saturday, I attended a local crafts fair and did a good bit of walking. That night, my foot was sore and I had to turn the stimulator up more then normal. At noon on Sunday, I sat down and turned the stimulator off to give my foot a break and conserve the battery. By accident, I left the house that day and forgot to turn the stimulator back on. The whole afternoon the bottom of my foot felt kind of funny. It did not burn or ach like before, but it seemed to itch.
That feeling went away and I have not needed to use the stimulator since. My foot feels better then it has in the last seven years. I am practically completely pain free and really enjoying life again.
Will this last and for how long? That's a very good question that I have been asking myself. I really don't know, but right now, I'm beginning to have a complete life again. All I can say is that maybe miracles can really happen.
For all of those out there suffering this terrible condition called Tarsal Tunnel Syndrome, there is hope. I only prey that my condition continues and that this possibly inspires others not to give up!
Re: *** Pain Free after Peripheral Nerve Stimulator ***BevN. on 7/31/03 at 10:18 (125779)
Thankyou for posting that, it is really interesting . I hope you remain pain free forever :) I keep wondering if I could just hook up my tens unit up on the bottoms of my feet(for my PF pain) but it would be hard to walk that way :D
Re: *** Pain Free after Peripheral Nerve Stimulator ***Steve G on 7/31/03 at 11:06 (125782)
I have followed your posts, and I am really glad that this is working for you!
Re: *** Pain Free after Peripheral Nerve Stimulator ***Aly on 7/31/03 at 11:20 (125784)
What a fantastic story - good for you for hanging in there and not giving up. Good luck!
Re: *** Pain Free after Peripheral Nerve Stimulator ***Sharon W on 7/31/03 at 11:41 (125786)
This is WONDERFUL news! \:D/
It gives us all renewed reason to hope, when we hear a story like this. I hope that your pain never, ever returns!!!
Re: *** Pain Free after Peripheral Nerve Stimulator ***Terry Z on 7/31/03 at 13:49 (125797)
This is great news!!! Do you think this could help with RSD in my foot? Somedays I think I'd try anything to have a normal life again. My TTS surgery was a success but this RSD is driving my crazy. Did your insurance cover these costs out of state. I'm not even sure what state your from.
Re: *** Pain Free after Peripheral Nerve Stimulator ***Dr. Z on 8/01/03 at 09:45 (125871)
Great news!!! This is one of the few pain stimulator sucess stories I have heard about. Good luck and a continued pain free life.
Re: *** Pain Free after Peripheral Nerve Stimulator ***Henry C on 8/01/03 at 09:46 (125872)
I am from West Virginia and have Blue Cross/Blue Shield insurance. The cost of the operation was covered by the insurance company.
As for helping RSD, well I really don't have any idea. It wouldn't hurt to check it out.
Re: *** Pain Free after Peripheral Nerve Stimulator ***Laurie R on 8/01/03 at 11:02 (125883)
Hi Henry , I have been waiting for your update... Thank you so very much for remembering to do so ... Some people get better and they forget about all of us .. What an awesome story ... I hope the best for you . I hope you stay pain free...... Thank you again ,Laurie R
Re: *** Pain Free after Peripheral Nerve Stimulator ***marie on 8/01/03 at 19:39 (125940)
What kind of doctor is Dr. Schon? Thank you for sharing. It's very interesting.
Re: *** Pain Free after Peripheral Nerve Stimulator ***Ed Davis, DPM on 8/01/03 at 20:20 (125949)
Dr. Schon is an orthopedic foot and ankle surgeon. One of his areas of interest is the vein wrap procedure.
Re: *** Pain Free after Peripheral Nerve Stimulator ***Dr. EDTerry Z on 8/02/03 at 06:51 (125964)
Do you think this could help RSD in the foot? This would be something I would consider in the future if nothing else works.
Re: *** Pain Free after Peripheral Nerve Stimulator ***Dr. EDEd Davis, DPM on 8/02/03 at 14:50 (126015)
If one has RSD, any type of trauma including surgery can make it worse. My inclination would be to move forward with a surgical procedure on an RSD patient only if there is a good chance of improvement. The vein wrap is a means of protecting the nerve from the pressure of further entrapment.
It is not a treatment for RSD directly, although if one was convinced that continued trauma to the nerve was exaccerbating or maintaining the RSD, then it could be considered.
Re: *** Pain Free after Peripheral Nerve Stimulator ***BrianG on 8/02/03 at 15:55 (126016)
Way to go Henry !!!! I'm happy that you finally found your answer. You didn't give up, you saw the best doctors that you could, and it all paid off for you.
Good deal !!!
Re: *** Pain Free after Peripheral Nerve Stimulator ***Dr. Z on 8/02/03 at 18:44 (126028)
This might be an answer for you. Have you seen a neurologist.