need a road map

[punchy sue]

Hello - My name is Susan and I was diagnosed with complete LBPI seven years ago after a car accident. The first part of this is going to be boring medical speak so skip it if it's not your cup of tea. I had nerve graft surgery with Dr. Belzberg three months post injury. My phrenic nerve was attached to the axillary nerve and my spinal accesory nerve attached to the suprascapular nerve. Theses grafts were successful in re-innervating my deltoids and my suprascapular muscle thus fixing the sublexation of my humerus and scapular junction. Also, T4- T6 intercostal nerves were grafted to my mucsulocutaneous nerve. This procedure, unfortunately, never took so I have zero muscular movement below my deltoids. Along with all of these grafts, Dr. B choose to attach my T4 and T6 sensory nerves to my median nerve. Unfortunately, this graft did work so if I put an ice cube on my left palm, it feels like it is under my arm pit. This is extremely annoying and serves no purpose but to increase sensory input to my brain, which is what all my medications are trying to stop.

So here I am seven years later and instead of my pain decreasing it has gone the opposite way. In the beginning the nerve pain centered on my hand and radiated to my elbow. Now my whole arm up to my pecs and back to my scapula experience pain. My triceps, which have had feeling from the beginning, are now so super-sensitive I have an extremely hard time finding a way to sit or sleep. Since I don't have Horner's Syndrome, it's difficult to judge to what extent C8 and T1 are injured. I'm looking for any good ideas of what I can do from this point. I can only assume that I have some sensory nerves that have become more impinged overtime, either by scar tissue or by change in bone position or muscle atrophy. The pain is driving me nuts and my temper is so much quicker. My current drug regimen is Neurontin 300mg x 3, Cymbalta 60 mg, Xanax 1mg and finally Hydrocodone 7.5 mg/ Ibup 200 mg 1/2 tablet twice a day. If you know of any doctors or procedures that might be helpful to my current situation, I would be truly grateful. I'm in a bad way and need some help.

THANX
LOVE SUSAN

[pieface]

Hey

I was told of a operation where they put a small box in your stomach with a wire attached to your neck (inside body) that it sends up electrical pulses to kill the pain you charge the box at night by holding the charger up against your stomach.

Also there is a operation call DREZ,where they burn away your sensory nerves in your spine i believe ( im not 100% sure )
to help kill the pain.

There options worth looking into as been in pain all the time is not a nice way to live.

I tried neurontin at the start and they did nothing for me,but when i tried lyrica they where far better,worth a though.

keep the head up

[tawnip]

[url]http://en.wikipedia.org/wiki/Transcutan ... timulation

There are variations of this type of device. My son had one and it didn't work well for him, but he also has brain damage. I know several other people who use the type that is surgically installed in their back and they love it. You start out with it taped on so you can adjust the device. Once you get that down, it is placed inside your body. You'll need to find a pain management doctor, which it looks like you have a lot of practice with.

Good luck,
Tawni

[ipeverywhere]

Have you talked to Dr. Belzberg? Might be a good place to start. It does sound like your sensory nerves have moved/activated and it would be worth talking to a few docs. The DREZ is pretty radical surgery but can be used if there is no function and only pain.

[worldbabin]

Hi Susan. It's been some time since you posted. What did you eventually do? How has it worked out?