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I have moyamoya and require an operation. (Read 9725 times)
CmolikB
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Coquitlam, Canada, canada, 68, 368, BC, British_Columbia
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I have moyamoya and require an operation.
May 28th, 2004 at 9:28pm
 
Shocked this is how I feel.  You get some news laid upon you and then life seems to be differant now.  It all started about three years ago I started to get some headaches and I mean headaches like nothing I have ever had before.  So I went to see my doctor and he just sends me home saying that there is nothing wrong,  which to me seems wrong because everbody else knows there own body and if something is wrong something is wrong.  So after the third time I say him he finally sent me to a specialist who requested that should see a doctor at UBC.  So after so we did some tests and had ctscans mri and angiograms then the dreaded news that I have moyamoya.  Next step operation which I have a reserved date set for June23rd 2004 and I am a little scared as my family is.  Please respond to me.  Brent
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LisaH
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Re: I have moyamoya and require an operation.
Reply #1 - May 28th, 2004 at 9:58pm
 
Hi Brent and welcome!

I know you must be scared to death so I'm so happy that you found this board.  People are so helpful here and share their experiences so you won't feel so alone and confused.   So don't be shy about asking any questions- big or small!

It's so very true what you wrote about people knowing their own bodies.  I wish doctors would listen better and take patients seriously.

Now some questions for you just so we can get to know you better.  Besides the headaches, are you having any other difficulties or symptoms?  Did you have a stroke?  How about TIAs?  Do you feel comfortable with the surgeon that will be performing your surgery?  What type of surgery are you having and are you having both sides done?

As for the surgery, I think most of us can say that it wasn't all that bad!  Considering it's brain surgery anyway.  The pain isn't unbearable and recovery is pretty quick.  Because there is no muscle in your brain, brain surgery doesn't hurt as much as say a gallbladder surgery etc.  My jaw did hurt because they had to cut the jaw muscle but I never took anything stronger than Tylenol.  Yes, some people have some complications from surgery (and I will let others share their experience) but overall not too bad.  I think the initial diagnosis and the WAITING is the worst part.

Again, welcome and feel free to ask away and share.
Lisa
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"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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PatM
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Re: I have moyamoya and require an operation.
Reply #2 - May 28th, 2004 at 10:18pm
 
Hi Brent---welcome to our moyamoya family....I share Lisa's sentiments......the waiting is usually the worst part......I am having my 2nd EDAS surgery on June 3rd....I just got the call today that it was moved up from June 4th......I know that you are scared and that the diagnosis, in and of itself, is scary.....we are all here for you to help you through this.....Who is performing your surgery and what type of surgery are they doing?  STA-MCA bypass?  EDAS?  Is the neurosurgeon an experienced moyamoya neurosurgeon?  We are not being nosy...just want to understand more and help you in whatever way we can.......It is easier said than done, but try not to be afraid.....Whatever higher power you believe in loves you and will never let you go, ok?

And, now you have all of us to help you through this scary and difficult time......WE are here for you...PatM Smiley
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"A life is not important except in the impact it has on other lives."...Jackie Robinson&&Worry looks around....Faith looks up......
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CmolikB
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Re: I have moyamoya and require an operation.
Reply #3 - May 28th, 2004 at 11:14pm
 
Hello well the doctor who I think my family and i have decided to do the operation is Dr.Steinberg.  I have read his reveiws and he has taken a look at my imaging so on May 31 and June 3 I am having a spect scan with and without diamox here in Vancouver BC. after which I will  fly over to the states and have a mri done on the 21 of june followed by the operation on june 23rd.  Only my left side of my brain will be operated at this time.  They said they would be doing sometype of bypass.  just have to wait and see to find out more.  In Canada i think the waiting list is way to long perhaps I even could get it done here and it would be free but were not going to wait and see what happens.  as a child early years i would get paralized on only one side of the body and it was totally like i had no control, i guess they call them tia attacks.  Steinberg says i need it done while the doctors here in Canada are twidling their thumbs and it makes me so  Angry that they could do this to me.  What do you think?
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LisaH
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Re: I have moyamoya and require an operation.
Reply #4 - May 29th, 2004 at 2:01am
 
Brent,

Well my own personal opinion of Dr. Steinberg is that he is wonderful and he didn't even do my surgery.  Many people on this board have (or are going to have) their surgery by him.  I'm sure you've read all the posts about people's experience with him.  Just curious, have you been communicating with him by e-mail or what? 

I've been working so hard this past year on universal health care in the U.S. , a similar plan to Canada's.  There are so many people here without health care available to them but I also hear stories like yours about the wait.  I'd be interested to hear how long the average wait is to even get an appointment with a neurologist in Canada.

About your childhood "episodes", were they accompanied by headaches?  Do you still get them now?  And, by the way, how old are you?

Sure sounds like you are on the right path!  Smiley
Lisa
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"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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Re: I have moyamoya and require an operation.
Reply #5 - May 29th, 2004 at 10:13am
 
Hi Brent,

I'm also in Canada.  I'm in Ontario.  My husband was diagnosed with MM in August 2003 after several trips to our ER and many TIA's.  He had surgery in September in Toronto at Toronto Western Hospital.  Wonderful doctors, couldn't ask for anything better!
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PatM
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Re: I have moyamoya and require an operation.
Reply #6 - May 29th, 2004 at 10:57pm
 
Hi again Brent----just wanted to share with you that I also had problems as a child----at the time, they called it "Bell's palsy"......that was in the mid 1970's and the doctors just said that it was something that could come back at any time and that it was "quite common" in teenagers......My biggest problem was on the left side of my face.....my left eye and side of my mouth drooped on and off for about six months.....and, it was difficult since I played a brass instrument and I could not keep my embouchure......my mouth literally kept falling out of my mouthpiece.....now, in retrospect, since the moyamoya may have been congenital, it was probably the mm that was acting up, and not Bell's palsy at all.....I also had headaches during that same time period.......had trouble concentrating at school....I was a sophomore in high school, and it didn't help at all to have the whole left side of my face numb and drooping....certainly did  not help my confidence level....just wanted to share......Lisa...I also stongly believe in universal health care....if you have a chance, pm me and let me know more about the work that you are doing.....will be out of commission from June 3rd till probably the 7th......take care, Pat Wink
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STrantas
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Re: I have moyamoya and require an operation.
Reply #7 - May 31st, 2004 at 6:22pm
 
Brent - I agree with Lisa - you sound like you're on the right path!  The waiting is the hardest part - but you really don't have that long.  Hang in there, and e-mail Dr. Steinberg with any new events or episodes.  I actually kept a medical type journal so I knew exactly what time, what I was doing, and how long each TIA lasted.  It really helped when I went to the hospital to have my surgeries - I didn't have to recall every TIA.  Please keep us posted and ask any questions you like.  We are here to support you!  Good luck!

-Shari
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hillary
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Re: I have moyamoya and require an operation.
Reply #8 - Jun 1st, 2004 at 3:59pm
 
Brent

Stanford is a great hospital, and Dr. Steinberg is a great Doctor....I believe that my daughter and I will be in that area around the time you are having surgery, we will have a follow up appointment with Dr. Steinberg before we move to Texas, would love to meet up with you or visit you in the hospital during your stay if thats alright with you...if not i understand..

Hillary
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CmolikB
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Re: I have moyamoya and require an operation.
Reply #9 - Jun 3rd, 2004 at 8:21pm
 
Smiley Hillary that would sound great the more people I meet and the more understanding I have the better I will be.  My mother and step father as well as my father and step mother will be there for my support plus   contact with my friends over the email.  
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« Last Edit: Jun 3rd, 2004 at 8:22pm by CmolikB »  
 
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hillary
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new braunfels, USA, usa, 279, 285, TX, Texas
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Re: I have moyamoya and require an operation.
Reply #10 - Jun 4th, 2004 at 12:21am
 
do you know for sure what days you will be there?  Holly has an appointment on the 28th of June for a 1 month post op, will you still be there?  Brent, if you want i'll give you my other email, or my phone number and we can talk that way as well.

Hillary
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connie1
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Re: I have moyamoya and require an operation.
Reply #11 - Jun 5th, 2004 at 3:39am
 
Hi Brent,

I was recently diagnosed with MoyaMoya and have not had surgery yet. Though I am not as rehearsed on the disease, I live in the bay area, and I would love to help in any way that I can. Let me know when you'll be here and maybe, I can come by?

Best wishes,
Connie
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CmolikB
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Re: I have moyamoya and require an operation.
Reply #12 - Jun 5th, 2004 at 4:22pm
 
To all my supporters,  I will be having a MRI done on the 21st of June,  then after which my family and I will enjoy San Fran for the rest of that day and the 22nd will be the same.  So on the 23rd of June I will be having my surgery done with Dr. Steinberg at Stanford.  ;Grin  I will be leaving Vancouver on the 18th which is on the Friday and will arrive there on Sunday night or perhaps the lastest Monday morning.  I plan staying there until I think about July 1st.  That is if everything goes okay.   Roll Eyes  Anybody who wishes to visit me while I'm at Stanford and my recovery is more than welcome to visit.  Thanks,  Brent
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« Last Edit: Jun 5th, 2004 at 4:33pm by CmolikB »  
 
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tomg
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Re: I have moyamoya and require an operation.
Reply #13 - Jun 8th, 2004 at 8:53am
 
Shocked
     Hi  This is Tom G. and welcom to our family. I'm sure that you're confused and scared but we're all here and been through that.  This site will give you all the info. hope and prayers that you need to get through this and you will get through this.  First you must seek out the best doctors with Moyamoya experience.  I  believe that you're from canada and I know that McGill University in Montreal has a renowned neurosurgery dept.  This site will give you names of the best in the U.S.
     My brother is a pediatric surgeon and did his surgical residency at Montreal Childrens Hosp.  He is now getting me the names of the best MM surgeons there.  I'll get them to you ASAP.   
By the way get the term dreaded diagnosis out of your thoughts.  There's nothing good about Moyamoya but it's definately treatable by a good doctor.  and don't forget you have us.
Also keep in mind that there are definately worse disgnosis  My sister had brain cancer and I'll take moyamoya any day. 
     If you're open to it our patron saint is saint Philomena, pray to her she helped me.

I didn't get your name but take care, be positive and get the best doctor.
     Tom G.
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Sara
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Re: I have moyamoya and require an operation.
Reply #14 - Jun 8th, 2004 at 3:45pm
 
Hi Brent:

I sent you an e-mail earlier today before I saw your post. E-mail or call me, if you can. And listen to all these wise people on this site. I wish I lives close to where you are having your surgery, I would come visit...

Talk to you soon.

Smiley Sara
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