moxiecat74
New
- Messages
- 24
- Reaction score
- 0
- Points
- 0
Hey everybody! The school year has taken its toll on my free time and energy levels. I just wanted to update ya'll on my condition.
Here goes...Lamictal and I did not work out. I was very close to jumping off of a bridge. I had the worst anxiety. It was truly awful.
I called my neurologist and told him but he never returned my call. I quit taking it and by noon the next day I was back to being myself again. 
I saw a new primary care and he freaked out that I had quit my meds (even though I had only quit that morning). He insisted that I call my neurologist again. So I did. Talked with the receptionist. She talked with the doc and he told her to tell me to keep taking the Lamictal. I say NO WAY and she said "Well that is your choice. I will tell the Dr." He has not called me back.
My new PCP sent me to a neurosurgeon. I saw her yesterday. BAD NEWS. I have a massive brain tumor that is going to require MAJOR, high-risk brain surgery. They are going to have to remove the right half of my skull, my right eye socket, and most of my cheek bone to get at the tumor as it is growing on the base of my skull. The surgery will take a minimum of 10-12 hours. Surgery is the only option. Radiation & chemo have little to no effect on my type of tumor (epidermoid cyst). It is not membrane bound. My neurosurgeon says that it is the consistency of instant mashed potatoes. White, waxy flakes that are very sticky. My own personal tumor is gigantic. She has never seen one this big. It completely surrounds my optic nerve, my carotid artery, and several other major blood vessels. There is a 0% chance that she will be able to remove the entire tumor because of where it is located and a 100% chance that it will recur. I get to do this all again sometime down the road if I survive this time. The risks involved include a low possibility of blindness and/or death and a moderate to high probability of stroke. There is also the chance of personality changes, memory problems, and weakness on my left side. Yippee!! After surgery I will be in the ICU for 1-3 days and then remain in the hospital for several days following. The biggest concern after surgery is brain swelling and infection. Aseptic meningitis is a possibility. The minimum recovery time if everything goes perfectly is 6 weeks. I am scared to death. I really am beside myself at the moment. I just found out about all this yesterday. I had to leave school today. I just couldn't take all of the people. I know that they mean well but I would lose it every time somebody would make me repeat the diagnosis.
Has anybody else had brain surgery? I could really use some advice/support. I have found doctors at Duke & Johns Hopkins that accept my insurance and I think that I'm going to go to either or both for second/third opinions.
My surgeon says that my seizure activity may not go away after the surgery and I'll always have to be on anti-convulsants. She has prescribed me Keppra. Does anybody know anything about this med? After the terrible Lamictal incident I'm leary of trying anything else.
I really appreciate anything ya'll can tell me. It is so nice to have a place to go to ask questions. Thank you!
Heather
Here goes...Lamictal and I did not work out. I was very close to jumping off of a bridge. I had the worst anxiety. It was truly awful.
I called my neurologist and told him but he never returned my call. I quit taking it and by noon the next day I was back to being myself again. I saw a new primary care and he freaked out that I had quit my meds (even though I had only quit that morning). He insisted that I call my neurologist again. So I did. Talked with the receptionist. She talked with the doc and he told her to tell me to keep taking the Lamictal. I say NO WAY and she said "Well that is your choice. I will tell the Dr." He has not called me back. My new PCP sent me to a neurosurgeon. I saw her yesterday. BAD NEWS. I have a massive brain tumor that is going to require MAJOR, high-risk brain surgery. They are going to have to remove the right half of my skull, my right eye socket, and most of my cheek bone to get at the tumor as it is growing on the base of my skull. The surgery will take a minimum of 10-12 hours. Surgery is the only option. Radiation & chemo have little to no effect on my type of tumor (epidermoid cyst). It is not membrane bound. My neurosurgeon says that it is the consistency of instant mashed potatoes. White, waxy flakes that are very sticky. My own personal tumor is gigantic. She has never seen one this big. It completely surrounds my optic nerve, my carotid artery, and several other major blood vessels. There is a 0% chance that she will be able to remove the entire tumor because of where it is located and a 100% chance that it will recur. I get to do this all again sometime down the road if I survive this time. The risks involved include a low possibility of blindness and/or death and a moderate to high probability of stroke. There is also the chance of personality changes, memory problems, and weakness on my left side. Yippee!! After surgery I will be in the ICU for 1-3 days and then remain in the hospital for several days following. The biggest concern after surgery is brain swelling and infection. Aseptic meningitis is a possibility. The minimum recovery time if everything goes perfectly is 6 weeks. I am scared to death. I really am beside myself at the moment. I just found out about all this yesterday. I had to leave school today. I just couldn't take all of the people. I know that they mean well but I would lose it every time somebody would make me repeat the diagnosis.
Has anybody else had brain surgery? I could really use some advice/support. I have found doctors at Duke & Johns Hopkins that accept my insurance and I think that I'm going to go to either or both for second/third opinions.
My surgeon says that my seizure activity may not go away after the surgery and I'll always have to be on anti-convulsants. She has prescribed me Keppra. Does anybody know anything about this med? After the terrible Lamictal incident I'm leary of trying anything else.
I really appreciate anything ya'll can tell me. It is so nice to have a place to go to ask questions. Thank you!
Heather
