Which Neurosurgeon Should I Use?

Discussions about the illness, treatments, doctors, etc.

Which Neurosurgeon Should I Use?

Postby stefanie0823 » Sat Mar 24, 2018 7:19 pm

I've been living with a cerebral cavernoma for years, and I've never really experienced
any severe symptoms other than migraines, which I've had since childhood. About a month ago I got a severe migraine - and when the migraine stopped I was left feeling off-balance 100% of the time and I had developed a nystagmus. Long story short my neurologist called for an MRI and proved that my cavernoma had bled. It's located somewhere between the occipital lobe and the cerebellum. I visited a neurosurgeon and after reviewing my last 3 MRI scans he explained to me that my cavernoma has bled several times before but it wasn't caught until now (I'm not happy about that). He said that it should be treated and that he doesn't usually see ones like mine that are left untreated for that long. I'm going to another neurosurgeon for a second opinion but I expect to hear the same thing.

My issue is this: I live in PA and there are two hospital groups that I would consider to be "good" in most ways, but they are not nationally ranked for Neurosurgery. The first neurosurgeon that I spoke with was the head of his department, and he explained that he's worked with angiomas for decades. I'm not sure about the second one since I haven't had an appointment with them yet. Brain surgery is so serious, so should I consider going to one of the "top hospitals" who are ranked high in Neurosurgery (which, by the way, my insurance will probably not cover too much because they would be out-of-network)? Has anyone ever gone to their local hospital which may not be nationally ranked for this type of surgery? I'm terrified of all of this. I also had a baby 6 months ago so I have a lot of other worries related to my cavernoma. What have some of you done with respect to your surgery?
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Re: Which Neurosurgeon Should I Use?

Postby Elizabeth » Sun Mar 25, 2018 5:04 pm

I'm sorry you are having trouble now. Mine became active after my first baby. My baby was 6 months old when I was diagnosed after they finally agreed to an MRI. I personally would not consider brain surgery with anyone but the best. Even though I am in close proximity to UCLA, a top ranked neuro hospital, I went to phoenix to have Spetzler do my surgery. Not a chance, I would have considered my local "in network" doctors. I actually switched my insurance do I could see whoever I wanted to see. Sometimes, you can get an out of network exception if none of the in network providers are qualified...just depends. My recommendation is to find the best doctor you can. He says he worked with angiomas for decades...Ask how many of these surgeries he has done? What are the outcomes? Same location as yours? Etc..I'm paranoid, but brain surgery is a big deal. No hacks are working on my brain.
Diagnosed September '09 with one CM centered in the right insular cortex/basal ganglia. Saw many, many doctors and had surgery 12/10/10 with Dr. Spetzler. I am thrilled to have this bleeding thing out of my head even though I suffered a stroke during surgery. Have had/ continue to make an amazing recovery. http://www.thankfulforeveryday.blogspot.com
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Re: Which Neurosurgeon Should I Use?

Postby stefanie0823 » Sun Mar 25, 2018 5:46 pm

@Elizabeth, thank you for your response. My husband and I have been talking and we are willing to explore highly qualified NS's even though the cost will be high. I'm going to reach out to my insurance to see if they will work for me in any way (changing insurance unfortunately isn't an option for me). I'll search for a doctor possibly on the east coast first.

PS this website & forum is amazing. I don't feel so alone, and it gives me hope!
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Re: Which Neurosurgeon Should I Use?

Postby Elizabeth » Sun Mar 25, 2018 10:38 pm

If you can get to Chicago, Dr. Awad is the doctor I would be looking at personally. Now this is my cynical jaded opinion...but my insurance experience has been nothing short of a complete pain. Mine will do anything to not pay even when they're supposed to. I've had to fight with them over most things, but good news is eventually I usually get them to pay. If you can prove that you need an out of network expert...they can grant exceptions...I finally got an exception for an eye doctor I needed after my surgery, but I had to prove that no other doctors could help me...which was true. I had to call and fight with them to pay each claim...but they paid most of them eventually. My take on surgery... You have one chance to have the surgery, if you need it, and a lifetime to live with the outcome. Only the best will do in my opinion. Best wishes!

And yes, AA is awesome!!! I wouldn't be here myself if it wasn't for the awesome people that helped me along the way...that's why I stick around...its a small thing I can do in gratitude for what I was given. :)
Diagnosed September '09 with one CM centered in the right insular cortex/basal ganglia. Saw many, many doctors and had surgery 12/10/10 with Dr. Spetzler. I am thrilled to have this bleeding thing out of my head even though I suffered a stroke during surgery. Have had/ continue to make an amazing recovery. http://www.thankfulforeveryday.blogspot.com
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Re: Which Neurosurgeon Should I Use?

Postby Michelle2000 » Wed Mar 28, 2018 3:09 am

stefanie0823-

You may want to check out the AA Centers for Excellence. http://www.angiomaalliance.org/pages.aspx?content=482
My son's surgery was at Mayo Clinic. It was out of network, but we couldn't get pediatric neurosurgery in network, so insurance paid. My husband is also seen there by Dr. Flemming. She's an excellent neurologist. My husband doesn't have a neurosurgeon, so I don't know who the best is for adults at Mayo, though Dr. Lanzino has a good reputation.

Best wishes,

Michelle
17 year old son with brainstem CM resected in March 2010, CM at C2-C3,
CCM2 mutation; DH & BIL with multiples in brain and spine; (MIL - deceased spine & brain)
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