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Need good Neurologist/Surgeon in FL (Read 3551 times)
Arianne120
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Need good Neurologist/Surgeon in FL
Sep 27th, 2012 at 1:37pm
 
Hi I live in Polk County. But, of course I work in Hillsborough county. I had a stroke in March right after I had my baby girl in February. I'm 25 years old. Smiley Lakeland Regional Hospital doctors told me that I had moya moya disease and referred me to Tampa General Hospital. They transferred me there about 2 days later.

When I was @ Tampa General I met with Dr. Decker. We did another MRI- and their MRI showed that I didn't have moyamoya. Last week, I had a CT Angio of the neck done with contrast done as perscribed by my doctor (Dr. Burgin, who is also working wiht Dr. Decker @ USF)... the results showed that I may have moya moya anyways. The back of my brain were showing signs of that puffy smoke look. I'm doing an MRA tomorrow to confirm. I'm scared and don't know too much about this. I get to find out next week October 3rd, if I do have it. To be prepared.... which surgeons and questions should I ask. It shows that there is no cure. With the surgeries as treatments... do you still get a strok after? I don't really understand. I am so glad to have found this. Please... help. If you are in the area or in Florida. I would love to talk. You can call or text me at 813-seven-64-1512. And I love this site.   Smiley
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hrsridermom
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Re: Need good Neurologist/Surgeon in FL
Reply #1 - Oct 3rd, 2012 at 12:39am
 
Arianne, I sent you a text.  Hope I got the number right.  Call me if you want to talk.  We live in Tampa too!
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Destin's mom
 
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Arianne120
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Re: Need good Neurologist/Surgeon in FL
Reply #2 - Oct 3rd, 2012 at 10:33am
 
Thanks Donna! I really appreciate this. I love this site. I texted back. Smiley I'll definately be calling.
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Aps
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Re: Need good Neurologist/Surgeon in FL
Reply #3 - Oct 28th, 2012 at 7:55pm
 
I had ventricular hemorrhage in July 2012 and after Angiogram, it was detected that I have moyamoya. So far we have taken opionions from Dr Gary Stanford CA, Dr Gary provided opinion based on the angiogram disk we sent and he recommends STA-MCA surgery. I have also consulted Dr Rosenwasser at Jefferson, Philadelphia and he recommends indirect EDAS surgery. We consulted Dr Connolly at Columbia and says based on the MRA/MRI perfusion blood supply to the brain is good and he does not recommend surgery at this point. We had another opinion at John Hopkins, Baltimore and Dr Judy Haung recommends idirect bypass EDAS surgery. It is really hard to decide what to do as few doctors are recommending surgeries and others do not. if blood supply to the brain is good, is there really a need for surgery?
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Arianne120
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Re: Need good Neurologist/Surgeon in FL
Reply #4 - Oct 29th, 2012 at 9:59am
 
Hi,

I feel the same way. Right now I'm in the process of figuring out as to weather or not I will need surgery. I'm getting conflicting information between my neurologist and my neurosurgeon. After reading my past medical records after the stroke that is also conflicting with what they say.
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hrsridermom
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Re: Need good Neurologist/Surgeon in FL
Reply #5 - Oct 29th, 2012 at 3:54pm
 
When Destin had her surgery the plan was to do the direct.  That way you get immediate results. When her surgeon got in to her brain he said her vessels were too small for direct so he did the EDAS and she just had to wait a few months to grow more.  It worked great for her.  I don't know the other 2 surgeons but I put a lot of faith in what Dr. Steinberg says even though we have not seen him. 
Arianne, was it Dr. Durgin that said you didn't need surgery?  He seems like a "wait until something happens" kind of doctor.  Destin won't see him after having him tell her she just needed to wait until something happened.  She's going in next week for a CTA.  she's been having some numbness issues that are increasing in frequency.  Then she will see Dr. VanLoveren at TGH.
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