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momkaren Experienced Poster Offline I Love MM.com! Posts: 126	Question about surgery performed at Boston Hosp Apr 17^th, 2011 at 11:48pm Does anyone know if Boston Children's Hospital performs the the other surgeries that may be needed for mm other than the EDAS(Pial Synangiosis? I know this is the one they prefer, wondering if they do the others and how often? Does anyone know how many of these surgeries have been done there?
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Becky Old-Time Poster Offline Stroke10/03, Diagnosed6/04, Unilateral Surgery9/04 Posts: 532 Minneapolis, USA, usa, 303, 84, MN, Minnesota Gender:	Re: Question about surgery performed at Boston Hosp Reply #1 - Apr 19^th, 2011 at 5:34pm momkaren, I am not sure, since I had mine done at the Mayo Clinic in MN. You may find the answer in the Surgens with bypass experence section, Dr.Scott is on of the top with the inportant topics. Sorry I could not be more helpful. Becky
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momkaren Experienced Poster Offline I Love MM.com! Posts: 126	Re: Question about surgery performed at Boston Hosp Reply #2 - Apr 19^th, 2011 at 7:08pm Thanks Becky. It seems to me that I am hearing and reading more about the Pial Synangiosis surgery than the others and was wondering in what situations the other surgeries are performed. Did you have the Pial Synangiosis done? How are you doing?
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Becky

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Stroke10/03, Diagnosed6/04,
Unilateral Surgery9/04

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Minneapolis, USA, usa, 303, 84, MN, Minnesota
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Re: Question about surgery performed at Boston Hosp
Reply #3 - Apr 20^th, 2011 at 8:08am

momkaren,
I did not have the Pial Synangiosis done. I had both the STA-MCA and EMS surgery done at the same time on the same side. My Health could not be better. I currently am juggeling a wonderful husband, a full time job as an engineering aid, and I am a part time student finishing my BS in Electrical Engineering. The more time goes by the better I feel and the more activites I can do like staying out late(4am) with friends. I still get tiered but naps are great for that pick me up. I get migraines everyonce and a while but less and less now. Please note that my experence will be diffrent then others.
I hope this helps,
Becky

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What doesn't kill us, makes us stronger. And sometimes leaves a cool looking scar. STA-MCA bypass and EMS Surgeries done at same time at the Mayo clinic

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saboliz New Poster Offline I Love MM.com! Posts: 13	Re: Question about surgery performed at Boston Hosp Reply #4 - Apr 20^th, 2011 at 10:31am Becky how long have you been in recovery? When did you feel good enough to resume your regular routine? Lz
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Becky

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Stroke10/03, Diagnosed6/04,
Unilateral Surgery9/04

Posts: 532
Minneapolis, USA, usa, 303, 84, MN, Minnesota
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Re: Question about surgery performed at Boston Hosp
Reply #5 - Apr 20^th, 2011 at 11:52am

Lz,
I have been in "recovery" for @ 7 years. I say i am still in recovery because I feel better everyday, and my migraines have been steadily decreasing in frequency and magnitude.

Before the surgery I woke up with a major migraine that the medication just dulled the pain to a steady light throbbing. About a month after my surgery I was able to resume my full time job (40hrs a week). I had a migraine everyday but I did not wake up with a migraine so my neurologist slowly decreased my Topamax until I stopped taking it about 6months after my surgery.
Another 3 months I returned to school. I have always been a part time at school (one to two classes a semester), because I am studding to get my BS ins Electrical Engineering. I pushed myself hard and found out I had limits to how much sleep I needed to how crabby/migraines I would be/get. Now that more time has past the more I am able to stay up late on the weekend with friends, or stay in a club with loud music.

So I guess what i am trying to say is I felt like I was able to return to MY regular routine was 9 months after my surgery if you count going back to school. If you only count work, family, and social things than 1 month after my surgery.
Hope this helps,
Please let me know is you want to know more or give more details about my experience.
Becky

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What doesn't kill us, makes us stronger. And sometimes leaves a cool looking scar. STA-MCA bypass and EMS Surgeries done at same time at the Mayo clinic

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yunnanababy Experienced Poster Offline My daughter had her surgeries in October 2009 Posts: 137 Indianapolis, IN USA Gender:	Re: Question about surgery performed at Boston Hosp Reply #6 - Apr 20^th, 2011 at 1:31pm Momkaren, Under the "Important Topics" section of this message board, the topic "Choosing the right surgery" is listed. There are several posts there that describe the different types of surgeries and when each seems to be the preferred method. Best, Jennifer
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momkaren

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Re: Question about surgery performed at Boston Hosp
Reply #7 - Apr 20^th, 2011 at 7:26pm

Becky,

So happy to hear you are doing so well.

Jen,
I did check out that link. I'm not sure yet exactly what situation my son is in. I was told the Pial synangiosis would be best for him. I am now waiting for his records to be sent to Boston Children's Hospital. I am still confused about how to know which surgery is best.

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hrsridermom

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Tampa, USA, FL, Florida
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Re: Question about surgery performed at Boston Hosp
Reply #8 - Apr 20^th, 2011 at 10:17pm

momkaren,
When Destin went in for her surgery we thought she would be getting STA-MCA bypass (direct) but her blood vessels were too small so Dr. Lewis chose to do the EDAS (indirect). The direct gets blood supply to the brain right away but the EDAS takes a few months. Your surgeon will probably discuss all of that with you. He will know which is best. Try not to worry, even thoguh that is difficult to do.

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Destin's mom

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Becky

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Stroke10/03, Diagnosed6/04,
Unilateral Surgery9/04

Posts: 532
Minneapolis, USA, usa, 303, 84, MN, Minnesota
Gender: female

Re: Question about surgery performed at Boston Hosp
Reply #9 - Apr 21^st, 2011 at 8:14am

momkaren,
I agree with hrsridermom. If it is more information on what your MM specialest surgen type or types of surgery I would recomend writing down all the questions you have about each type for the two of you to discuss. I personaly was only schedualed for the STA-MCA but there was discussion of the EMS if needed. Taht might be the same case for you. Agian a discussion with your surgen is recomended.
Stay Strong and keep us posted,
Becky

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What doesn't kill us, makes us stronger. And sometimes leaves a cool looking scar. STA-MCA bypass and EMS Surgeries done at same time at the Mayo clinic

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saboliz

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Re: Question about surgery performed at Boston Hosp
Reply #10 - Apr 21^st, 2011 at 10:10am

Becky,
thank you for telling me your story. Today is my 1 month and I have not had the desire to work. I am walking 25 minutes a day trying to get motivated.

MomKaren,
My surgeon and his staff are wonderful. He explained everything to me. We also did a test the night before to see how much blood flow I was actually getting. I was 100% blocked on one side and 50% on the other. This was to give him a comparison before the surgery and after the surgery. Also so that he could double check to make sure the STA-MCA was the right surgery for me. Your surgeon should explain all of this to you. I hope you do get into Boston Children's Hospital. My brother is in Boston and has two boys. It is a great hospital. Hang in there and have faith. I know it is hard. I agree with Becky write your questions down. I now have a journal that I keep every day to make sure I don't miss anything.

Liz

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« Last Edit: Apr 21^st, 2011 at 10:13am by saboliz »

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momkaren

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Re: Question about surgery performed at Boston Hosp
Reply #11 - Apr 21^st, 2011 at 3:47pm

Thanks guys! The worst part is (or was) so far is that I have 2 pages of questions that I had with me when my son saw the neurosurgeon here at childrens Hospital of Philadelphia Tuesday. The dr. came in the room and when I started asking questions, he had to pull out my sons file! Don't think he ever reviewed my sons case! He wasn't even able to, or didn't want to, pull up his MRI, MRA and review it with me! I cut the visit short, knowing there was no way I was having him cut into my sons head! This dr. did tell me that my son's blood vessels are probably to small for the direct surgery. I think so too, my son is 11yrs old, but very small for his age and always had a small head! I would prefer the direct method just because it starts working right away. I just want to get the ball rolling, I am scared and worried every day that he will have another stroke! I am waiting for his medical records to be sent to me and I will be overnighting them to Dr. Scott.

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pamR Junior Poster Offline mom of 15 yr old twins, one with MM Posts: 62 Sellersville, PA Gender:	Re: Question about surgery performed at Boston Hosp Reply #12 - Apr 21^st, 2011 at 9:26pm Unbelievable! Sorry your appt. didn't go well. Dr. Smith went over EVERY detail with us on our first appt. with him. I am sure you will find the answers you need from Boston. Keep us all posted!
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mattsmom

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My son, Matthew, has moyamoya.

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Albuquerque, USA, usa, 180, 215, NM, New_Mexico
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Re: Question about surgery performed at Boston Hosp
Reply #13 - May 3^rd, 2011 at 11:05am

I was just reading the Boston's Children's Hospital's moyamoya site. They state that the pial is better for small children due to their smaller blood vessels. They never "cut" into the vessels, just redirect them.

My son had his surgery almost twelve years ago . . . and he is doing very well. I love Dr. Scott, but will admit to my bias!!

Kim -- mom to Matthew, 19, 3 strokes at 7 due to moyamoya

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STrantas

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Re: Question about surgery performed at Boston Hosp
Reply #14 - May 3^rd, 2011 at 1:37pm

Momkaren - I had my surgeries with Dr. Scott over 7 years ago. He does do other surgeries, if needed. I had a prior surgery for TMJ - same area - on my left side - when I was 16. He didn't have a good artery on that side to use...so he actually did the method where they turn the muscle flap inside out - (I think it was a muscle flap!).

But I had the indirect (pial synangiosis) on the other side and I know people say it isn't possible - but I felt a big difference right away. Going from multiple TIA's a day to none! (Disclaimer: Everyone's experiences are different, this is just my experience...I'm not a doctor....yada-yada).

I would definitely ask your son's neuro if he thinks his case is acute or not - and, of course, Dr. Scott and Dr. Smith...

-Shari

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Dr. Scott did my surgeries - 12/29/03 and 1/5/04

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momkaren

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Re: Question about surgery performed at Boston Hosp
Reply #15 - May 3^rd, 2011 at 6:57pm

Thanks Kim and Shari. The info you give me makes me feel better about the whole thing.

My son is very small for his age and has a small head. I'm guessing they will not do the direct surgery. Just wishing they could so that the blood flow would improve immediately. I'm scared every day that he'll have another stroke!

Had problems with getting his records from Children's Hospital here. Now I will be picking them up myself tomorrow and sending them to Boston. I was not pleased with the neurosurgeon my son has at Childrens hospital here. I am going to ask Dr. Smith if he recommends anyone here in Philadelphia. I can't believe hat Children's Hospital here in Phila has more than 30 neurologists, but on 2 neurosurgeons!

I am just anxious to get the ball rolling so I am not constantly in fear my son will have another stroke!

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