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Moyamoya.com Forum › Moyamoya Related Topics › Moyamoya Related Information and Support › Annual Follow-Up

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Annual Follow-Up (Read 2744 times)

Mimi

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I Love MM.com!

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Annual Follow-Up
Apr 5^th, 2012 at 11:53pm

Hi everyone. I am now two years post surgery and I haven't gone in for any annual "checkups." I have a local neurologist In my town and I can also see the stroke specialist who follows my case at Yale--neither one of them is a MoyaMoya "specialist." The neurosurgeon who performed my bypass, Dr. Day, is no longer at Brigham and Women's in Boston.

My question is -- Who am I supposed to see for my annual? Do you normally see the neuro who performed your operation or do you see someone local? Or should I see the doctor in Boston who took over for Dr. Day?

I've been having some issues lately and I need to see someone as soon as possible, but I really don't feel like reliving the stress of navigating through this web of doctors like I had to before my diagnosis and surgery.

Please guide me in the right direction. Thx.

« Last Edit: Apr 5^th, 2012 at 11:54pm by Mimi »

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hrsridermom

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mother of 19 yr old daughter
with MMD

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Re: Annual Follow-Up
Reply #1 - Apr 6^th, 2012 at 8:57am

The first year after Destin's surgery we went back to her surgeon. He is three hours away so after that we had her surgeon write the script for the CT Angio and had the results sent to him. This year we have been lucky enough to find a good neurosurgeon here in Tampa. Turns out our surgeon in Gainesville is leaving Shands. I think he is going back to australia. If he is our friends down under are getting a real gem!

I guess my answer is you should be able to go to a good neurologists and he can order an angiogram. You can always send the results to Dr. Steinberg if you have any questions.

Destin's mom

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Kathymc

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Re: Annual Follow-Up
Reply #2 - Apr 8^th, 2012 at 12:57am

Hi, Dr. Day also did my surgery back in Sept. of 09 and I've had problems starting just 2 months after surgery. I have been seeing my neuro guy at Beth Isreal who is a stroke specialist but it has taken 2 years to get tests done that should have been done all along. Dr. Rose Du took over for Dr. Day and I had to call a year later to see if I should be seen by the surgeon (she was his assistant for my surgery) She ran one CT w/perfusion and said that my bypass did not work at there was nothing more she could do. There is Dr. Oglive at Mass General who is another neuro surgeon for MoyaMoya. I have not seen him yet. But I have seen a Dr. Thomas at Beth Isreal who is also a neurosurgeon who has done and is doing another angiogram on me this month. He is very nice and I would highly recommend him.

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Mimi

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Re: Annual Follow-Up
Reply #3 - Apr 10^th, 2012 at 1:35am

hrsridermom - thank you for replying. I hope you find a new neurosurgeon who you like as much as the one who is leaving. As for Dr. Steinberg, I have never been in contact with him so I don't know if he will be willing to look at my scans. If I can't find anyone else within close proximity, I will contact him and see what happends. The worst he can say is no, and he may be able to suggest someone else close.

KathyMC - Thank you for your suggestions. I am so very sorry to hear that the procedure did not work for you. i will say a prayer for you. I'm also sorry for your experience with Dr. Rose Du. She did not assist with my surgery, but I saw her for my second post op appointment (Dr. Day left the week after my surgery) and I did not like her at all. She was very distracted and did not look me in the eye. I asked her questions and she rushed through the answers and didn't even let me get in many follow up questions. I never went back to see her, which is part of the reason why two years later I still haven't had a post op angiogram. I think I'm going to contact the stroke specialist at Yale --Dr. Schindler-- as he was the one who sent me up to Dr. Scott who then sent me to Dr. Day. I really like him and his coordinator and they always made sure that I saw who I needed to see and had all the necessary tests prior to my diagnosis then surgery. I will keep the names you suggested just in case.
Again thank you for taking the time to respond to my inquiry. I really do appreciate it and I'm so grateful for this site. I'll update after the angiogram. Thanks!

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