I've gained 30lbs on Depakote (I'm 5'1", so DAMN), my hair is falling out to the point you can see bald patches, and I STILL have pain but it helps. My Dr. has given up on me and I can't get in to see her until September, so I can't taper off or switch meds. I just wanted to type this out bcs GRRRRRR. I have been having a "flare up" for 11 months straight at this point, on and off pain for 8 years, and I just wish at least I had my normal body weight and my hair. I know those are silly things to want. But I want SOME semblance of normal.
I had an fMRI for a Motor Cortex Stimulation surgery last week. This is my "only option" surgery. Meds don't work, but I am scared to become a cyborg at age 30. MVD is one thing, because they go in and fix something (NOT to diminish the decision to do it, the recovery, and all that comes with an MVD, I know it is a HUGE deal). But I'm not considering that. MCS you get a device implanted in you that you have to deal with every day for the rest of your life. No more MRIs or Ultra sounds. A titanium plate in your head. Not being able to go through airport security scanners and needing a special medical card to fly. A remote to control the impulses to your brain. Having to reset the frequency at the Dr. every 6 months. Having to either recharge the battery every few days if it is rechargeable or having to have surgery to change it every 5 yrs if it isn't. But I want relief. We all want relief. I want my life back. I want a job again, other than laying around crying in pain.
I don't know. This didn't make any sense. I just needed to babble.
I soooo understand! I have gained 45 lbs since starting my current meds in March and my weight is still going up! This is depressing enough but when my doctor told me this week he could not allow me to return to work in a few weeks it was devastating! I knew I couldn't drive and can't walk straight because I'm always dizzy and off balance and I knew the pain was still there but there was a part of me that kept fighting and said I can work! It is your last bit off independence and it gets stripped away! I try to hide the pain and all the other symptoms but I know people can see. I get the looks everywhere I go-is she drunk or on drugs because I'm wobbling and stumbling. It just gets depressing. I'm sorry you have to deal with this too. I hope someone finds a way to help you! (I guess I needed to ramble too-sorry)
Hi Virginia Girl. Thanks so much for your comment. I am so sorry to hear that you are having to deal with the dizzy/off balance effect. I know how hard it is not to be able to work. I had to drop out of my last year of graduate school and haven't been able to work since (almost a year). I greatly miss the social aspect of working. I go for interviews, and then I realize I am not in a state to be able to work yet. My husband got me a cat. We have dubbed the kitty a Dr. and he really lifts my moods. I am glad you felt comfortable rambling here, although it didn't seem like a ramble to me. Best of luck to you!!
In 2008 I attended a TN national conference in Dearborn Mi. Dr Ken Casey performed one of these operations while we were there. The girl was elated that she could dial in her needs to control pain. She was up and walking if I remember correctly a day later as she attended the final dinner. She could hardly wait to go home and go rollerblading again with her dog. She was a young female in her late twenties with visual impairment.
I thought this was awesome she was going to be able to have a better life. I know you everything will go well for you. Hugs and best wishes and let us know after how you are doing
Chippy
Hi Chippy. Thank you for your words of encouragement. I scheduled my MCS surgery today for mid-August. I am feeling really hopeful that it will help me manage my pain!!