Brain surgery

[moxiecat74]

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

[Bernard]

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.

That does sound risky.

You might ask about Gamma Knife surgery (which doesn't involve cutting anything). I found one small scale study which appears to show it as being effective for epidermoid tumors:

Radiosurgery of Epidermoid Tumors with Gamma Knife: Possibility of Radiosurgical Nerve Decompression

more info

[brain]

I sent a PM someone who has Gamma
Knife Surgery experience to come over here
to share with their experience, it's less
invasive and it's been working for them and
plus their anti-epileptic drug's have been titrating now
half of what they were taking before and
they're still being titrated downwards slowly
in a progressive manner.

That person had only 2 seizures since that
Gamma Knife (which is AWESOME) considering
that party was going through tons of them a
day and was drugged to death and having had
several surgeries already.

I hope that person registers and signs up,
I had sent them the link so they can read
your message.

All I can do is cross my fingers and say a
prayer and hope they register and post!
Because that person had their Gamma Knife
done at John Hopkins.

[Bernard]

Jeff? You can try sending him a PM.

[brain]

Bernard - I forgot about JEFF, He's
another one who had Gamma Knife
Surgery too ... Go for him too!
The more the merrier - His was
successful too!

[moxiecat74]

Hey,

Thanks for the advice. I did ask about Gamma Knife and was told that my tumor is too big. Gamma Knife is effective on small tumors. The surgeon said that it would be too much radiation on my brain. She said that if/when it recurs, then it can be an option but right now it wouldn't work.

Thanks,
Heather

[renee97]

Regarding the advocate of Keppra (which I take and do not like), ask this person about Neurontin. It may (or may not) be the best for you type of seizure, but I would suggest almost anything except Keppra. Even Lamictal (which I am currently tapering off of) is better than Keppra. At least that's my experience!
Lisa Renee

[Bernard]

Taking vitamin B6 supplements can help minimize the side effects of Keppra.

[Nancy]

AAwwwwhhhhhhhhh Heather, How VERY scary. I kinda' know what you're going through so I understand a bit. I'm so very sorry this is happening to you.

Do you have time to get a second opinion? That's an important step if at all possible.
And remember that the surgeon is REQUIRED to tell you all the "bad" stuff no matter how horrible it is.
I heard the bad stuff and I came through two scary surgeries just fine
I'm holding you in my prayers.

[RobinN]

I am sure glad Nancy came to the rescue, because I have not clue what you are going through, and yet I got all choked up, just thinking about it.
I too am wishing you all the best.

[brain]

Sending some hugs your way Heather

[vtsammy]

Heather,

I am sorry to hear about what you are going through. I have gone to John Hopkins Hospital and they have great doctors. Myself residing in Virginia as well, it wasn't too far of a drive up to Baltimore. Good luck, and I'm sure that everything will turn out ok.

Sam

[Zoe]

Hello Heather,
I had two brain surgeries. The first one was to remove a large AVM [deformed blood vessels} that were leaking,causing strokes. At that time much of my right cerebral cortex had abscessed from the weight of the deformed arteries, forming a large fistula [cyst]. I was having bleeds when they found it and had gone suddenly blind in the left field of vision in both eyes.
Much of my right hemisphere was removed and my left side was paralyzed.
I developed spinal meningitis as a complication of the surgery and developed intractable seizures afterwards.
I over came the paralysis. My second brain surgery was to try and control the seizures and it didn't work. I did eventually overcome them
Brain damage, even a lot of brain damage, isn't necessarily "irreversible".
If you are able to do so, perhaps you will get a second even third opinion to be sure the surgery your current dr wants is what is best for you. When and if you do have the surgery, you can make some plans in advance on what to do if you are paralyzed, or experience any of the worst case scenarios your dr is telling you about. There is a method that has been very successful in helping people overcome paralyisis developed by Edward Taub, at the University of Alabama. This is a link to the health care system there:
http://www.taubtherapy.com/default.aspx?pid=61452

So that's one option you can check out in advance or have on hand if you need it. They train people in their technique so there may be some hospitals near you using it.) You are dong a lot to cope now, and surely you will continue to do so, no matter what happens. I will keep you in my thoughts and prayers.

[POSITIVEPERSON]

Hi Heather: I have no idea what your going thru,but their was a time I was so fed up with my szs in 1994. That I was willing to be operated in Montreal. Luckly I never got operated . MY prayers and thoughts are with you for a successful operation and a successful recuperation !!!!!!!!!

Riva

[Nancy]

Heather - I thought about you and prayed about you so much last night ... I wish I had your email
I understand that you are facing a LOT and it's understandably terrifying. OMG

My surgeries, compared to yours, were like appendicitis. But, just the words "brain surgery" are so terrifying and ..........well, for me at least, the words were worse than the actual event. Oh, it was no fun and was difficult but was not nearly as bad as I expected.

I thinking and sending you gentle hugs. I hope and pray that you are really getting them.