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Moyamoya.com Forum › Moyamoya Related Topics › Moyamoya Related Information and Support › I am new and also confused

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I am new and also confused (Read 14981 times)

gotchlorine

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Our daughter, Tara, lives
with MM

Posts: 776
San Jose, USA, usa, 24, 158, CA, California
Gender: female

Re: I am new and also confused
Reply #25 - May 10^th, 2005 at 2:11am

Dear Ha,

Wow, you've made some big decisions over the last few weeks! I can only imagine how confusing it was for you, given the varied recommendations from the doctors. My opinion, of course, but I believe with all my heart that you've made a wise choice. Dr. Steinberg is as expert as you'll get with MM the disease. As the old saying goes, "better safe than sorry". Waiting to see what could happen with MM is certainly taking a gamble.

As I mentioned in an earlier post, my 18 year old daughter had her surgeries with Dr. Steinberg last June. 11 months post-op, she has become kind of the local "poster child", and loves helping others go through the surgery experience. We live about 1/2 hour from Stanford, so would love to meet you and provide whatever support we can while you are here. I will send you a private message with our phone #s, in case you'd like to talk before you come to California.

In the meantime, congratulations on your upcoming graduation! I hope it goes well! You will be in our prayers, and we will look forward to speaking with you soon.

Hugs from out west,
Jill

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Hikaisista

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Posts: 12
Honolulu, USA, HI, Hawaii
Gender: female

Re: I am new and also confused
Reply #26 - May 10^th, 2005 at 1:56pm

Aloha Ha,

I have been reading your post over the past few days. I truely can relate your confusion and frustration! I just returned from North Carolina...I had a bypass and two indirect flaps and am still recovering in Hawaii.

Up until I made my decision to have the surgery done, I was in constant turmoil and received many opinions. My Neurologist was always on the right course. He recommended from Day one to have the bypass done. I then went on to get another opinion and the second opinion suggested that I have a stint put in but after much discussion, it was determined that that procedure was much more risky than the bypass. I ended up with two more opinions and they all let to me having my bypass. I do not have clearly definited moyamoya vessell but I have early moyamoya like vessell and stenosis of the MCA. I had 3 TIAs and a small stroke before being diagnosed w/Moyamoya.

Anyway, to make a long story short, I had my surgery on April 26th and returned home to Hawaii on May 2nd. Dr. Takanori Fukushima was my neurosurgeron and I can not speak of him more highly. He is a world reknowed neurosurgeron that has seen well over than 50 cases. Infact, he is a doctor that has been trained in Japan and has performed many of the surgeries in Japan, Hawaii, West Virginia, and Duke. He is quite amazing and people come from all over the world to see him. My husband, a physician himself, was also very impressed w/him. As for Dr. Fukushima telling you may not need the surgery, I don't know what to say. But I do know, that you have to do what you think is right. Seek out the best...and if that is surgery, go for it. Once you make up your mind to do it....believe me you will feel much better.

My thoughts and prayers are with you.
With Much Love and Aloha,
Colleen

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Posts: 25
nashville, USA, usa, 371, 194, TN, Tennessee
Gender: female

Re: I am new and also confused
Reply #27 - May 23^rd, 2005 at 8:50pm

Hi everyone,

Thank you Colleen, Jill, Diane, and everyone. I didn't have access to internet very often for a while.

I went to Stanford to take the Xenon test this morning. The test was terrible and they had to stop it half way. I felt like I just came back from another world after the test. Please kindly let me know if anyone was in the same situation.

I met Teresa the first time. She was amazing! Teresa scheduled a SPEC scan test for me but I already had it at Vanderbilt. I will see Dr. Steinberg tomorrow and will have the surgery on Wednesday, which I haven't known the exact time yet.

Jill, I got your phone number from Teresa. I will try to call you today.

Thanks again and best regards,

Ha

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kotipup

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My daughter, Daphne, has
Moyamoya

Posts: 247
Landenberg, USA, PA, Pennsylvania
Gender: female

Re: I am new and also confused
Reply #28 - May 23^rd, 2005 at 9:02pm

Ha,

I am so glad your Xenon CT scan went well! Good luck on your surgery Wednesday. You are in very skilled hands!

I am so glad that you like Teresa, and you'll be contacting Jill. They were wonderful to us while we were out in Stanford for my daughter's surgery (this past March)

I think you have made a wonderful (and brave!) decision. My thoughts are with you. Please let me know if there is anything I can do.

Jenny (mom to daphne)

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