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Moyamoya.com Forum › Moyamoya Related Topics › Moyamoya Related Information and Support › Questions to ask Surgeons and Neurologists

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Questions to ask Surgeons and Neurologists (Read 3258 times)

connie1

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Union City, USA, usa, 24, 155, CA, California
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Questions to ask Surgeons and Neurologists
May 10^th, 2004 at 11:25pm

Dear Friends,

I thought this would be a really helpful idea if I could solicit, for myself and other newly diagnosed MM'ers, your advice. Would it be possible if all the individuals experienced with the doctors give me and others questions that should be asked? It would help me get a better idea about who I will be working with (and whether or not I should be) and what the process of both diagnosis and surgery should look like.

General Process includes:
1) Diagnosis
2) Tests include-angiograms, SPECT exams, MRI
3) ?????

Questions for Surgeons:

1) experience with moyamoya?
2) considered specialist?
3) what is the follow up process?

etc, etc, etc.

I hope you all understand my request and thanks again for all the support. I love this website.

Hugs,
Connie

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LisaH

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Be thankful in all circumstances

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ArlingtonHts, USA, usa, 358, 120, IL, Illinois
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Re: Questions to ask Surgeons and Neurologists
Reply #1 - May 10^th, 2004 at 11:52pm

Hi Connie,

I really have to get some work done but one thing you wrote struck a nerve with me. You wrote about followup procedures and doctors. As I see it, follow up is a big problem with MM. Everyone seems to get different advice, warnings and general care after surgery from their doctors. I wish all doctors were on the same page so to speak. Wouldn't you think there are some general guidelines to follow? Smiley

Until later,
Lisa

"Two roads diverged in a wood, and I--I took the one less traveled by, and that has made all the difference." - Robert Frost

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Posts: 721
Wichita, KS
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Re: Questions to ask Surgeons and Neurologists
Reply #2 - May 11^th, 2004 at 3:40am

Good question Connie! Here would by my personal thoughts, given my experience...

General Process:

Tests (in order): MRI (shows any stroke), MRA (shows any problems with the carotids), angiogram (shows the road map of the arteries in the brain and THE diagnostic test that shows the actual moyamoya vessels)
Diagnoses
Interim medication: depending on the situation (stroke or hemorrhage), aspirin or blood thinners until surgery can be done
Additional tests: SPECT (shows the perfusion [or flow] of blood through the brain), transcranial doppler (ultrasound of the carotid arteries)
Referral to a moyamoya specialist or a neurosurgeon with experience doing the STA-MCA (direct) or EDAS (in-direct) procedures

Questions for surgeons:

How much experience with moyamoya? (i.e. how many moyamoya patients have they treated)
Which method of surgery is best for YOUR case (direct or in-direct), and how much experience the surgeon has with each method? (YOUR research is imperative here because there is a definite difference between the two methods and you need to have an informed idea of which method you think is best for you)
How long until the surgery is effective in replenishing blood supply to the brain?
Will I be having surgeries on both sides and how long between each surgery?
What will the surgical recovery process be like?
Will I have any more strokes, TIA's, or seizures after surgery?
What will the follow-up process be like?
Will I have to take any medications after the surgery?
What is the long term prognosis?

Anyone care to add to the list? I'm sure there's more...

Hope this helps to get the list started at least!?

-DJ

Adversity does not build character... it reveals it... I help my neighbor and my neighbor helps someone else. Life is a wonderful circle!

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Re: Questions to ask Surgeons and Neurologists
Reply #3 - May 11^th, 2004 at 3:48am

LisaH wrote on May 10^th, 2004 at 11:52pm:

Wouldn't you think there are some general guidelines to follow?

My personal experience with my surgeries was/is: Three month post-op and annually(ish) thereafter.

My surgeries were 17 months apart, but I should be on a schedule to have both annual follow-ups done at the same time now since I have to travel from Kansas to California for the appointments.

Wink

Adversity does not build character... it reveals it... I help my neighbor and my neighbor helps someone else. Life is a wonderful circle!

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Mar Ex Member	Re: Questions to ask Surgeons and Neurologists Reply #4 - May 11^th, 2004 at 8:29am Excellent Posts!! The guidelines are perfect in my opinion and generally covers everything I can think of that would be applicable to all. Way to go! I know this should help many in our mm family. Deej, you never cease to amaze me. Mar
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