This blog started out with me trying to fight (what was diagnosed as) Chronic Fatigue Syndrome by having a healthy lifestyle. I also wanted to lessen my carbon footprint in the process. My plan was to chronicle the changes I made in my life to "save myself and the planet" (which was my old title). A few months after I began this blog I was diagnosed with a brain tumor. It changed the direction of blog, so I needed to change the title.
Wednesday, January 20, 2010
Surgeon Meeting: Getting Nowhere Fast
I met with my neurosurgeon today and I am left with more questions then answers. My neuro did not discuss my case with him and he did not know what the epilepsy board recommended. This lack of communication is infuriating. I do not blame my surgeon and he seemed embarrassed by the situation. Since my last hospital visit I feel my care at this hospital has decreased. I have some hypotheses on why this is happening, but none make me feel better about this. The surgeon mentioned that the last two MRIs showed I have Mesial Hippocampal Sclerosis, which is atrophy of my hippocampus. This is not even related to my tumor! It causes medically intractable seizures. The surgeon did not have much info on this as his job is to get rid of it not really analyze it. I got most of my info about this condition from the internet. I find something really wrong about this situation. From what I read it seems that this damage will continue unless it is removed. That makes more sense for why they want to operation soon and not really give my new medication a chance. If what I read is true the medication does not have a chance. I still cannot process having a THIRD surgery. I am annoyed that no one noticed this Mesial Hippocampal Sclerosis in the past 10 years of MRIs. It also makes me wonder if it is new. The surgeon was not sure and was looking into it. My neuro spoke of the slow waves on the EEG being new, so I think this might all be related. If this is new from my last EEG (just a year ago) then I really see a need for this surgery. But that does not make this any easier. I cannot believe I may have to go thru this all over again. This surgery will be much more aggressive then the last, so the recovery will be more difficult. I am not sure how much more of this I can take emotionally. I just want to go on with my life and not have these constant halts. The epilepsy surgical board is meeting on Wednesday morning and my surgeon will call me afterwards. I must have answers to my questions by then, I cannot wait in the dark anymore. I am also pursuing a second opinion as this is a huge decision (yet again).
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1 comment:
Hi Jaime,
I've just red your blog entry for today and re-red yesterday's.
I'm really glad to hear you're seeking a second opinion - that sounds like a wise course of action given as you say it's a huge decision you need to make and there are some questions you need answers to or opinions on.
I'm sorry to hear there's been a lack of communication within your overall medical team - hopefully your surgeon will stir them up!
If Scotty was here I'd ask him to beam me over for supportive cuddle and a long back rub but I'm not sure your husband would be convinced when I said we were having a medical discussion!
Sending support and sending hugs from South Australia :)
Ed.
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