Meds or Brain Surgeries?

[dbobsnodgrass]

dear Friends, This is my first time posting on this site. I was diagnosed with Trigeminal Neuralgia on 01/24/07. !st drug given was carbitrol XR, an extended released tegretol. Within 3 weeks, I developed toxic epidermal necrolysis, spending 5 days at Shriners Burn Center in Boston. The 60% 2nd degree burns over my body has a 20% mortality rate. Still the facial pain was worse. I was give cyclosporin, an anti rejection med for kidney transplant patients. My neursurgeon could not touch me for 6 months. I was suppose to have an MVD, which turned into a full craniotomy and lasted two weeks. 5 weeks later, I had stereotactic radiation surgery, which lasted two weeks. Last December, I had a 2nd stereotactic radiation surgery which lasted 3 months, the upcoming MRIs' showed that it missed by a pinhead; taking some mylar sheathing from my visual cortex, and putting my right side at 60%. I fall alot, my neurologist said that after 1 -2 weeks of physical therapy, my right side will never come back. My vision gets blurred to double to peripheral shadows several times each day, never to get better. The nerves are too close to my brain stem. I take 34 pills each day; neurontin 3600mg, namenda 300mg, klonopin 6mg, lamictal 450mg, prozac 20mg, ativan 6mg, baclofen 90mg...I couldn't get it up if I tried. I get very wet, but anthing near an erection, is not going to happen. I have tried every med on the market. So is it my surgeries or my shopping cart of meds? Help, please! bob

[tic chick]

bob,

wow. you certainly have been through a lot! your question is kind of like asking, what came first, the chicken or the egg?

most of the drugs you are taking would kill anybody's sex drive.

first, i would probably ask your doctor to refer you to a urologist. they can do an ultrasound of the veins in your penis, to make sure everything is physically okay. there is another thread in this forum about injecting drugs directly into the penis to get erections. see if the urologist would do that and if that method gives you an erection.

if not, then i would ask your neurologist which of your meds you can cut down, mainly the klonopin, ativan, lamictal and prozac. if you can't cut down any of them and no drugs can give you an erection, you have to look at perhaps a penile implant.

i'm assuming you're in a committed relationship or married, cause this is important to you. talk about it with your partner. see what her feelings and ideas are.

don't give up and don't let your doctor push away questions about resuming a sexual life.

good luck, cause it's going to take some time and thought to solve this, but it doesn't sound hopeless!

take care of yourself,
jeannie

[Jim59]

Jeannie is right on!! Make your first stop the urologist and you'll never regret it! He or she will help you. I know this first hand.
Jim