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Remoyamoya? (Read 16736 times)

freckles

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Lakeland, FL
Gender: female

Remoyamoya?
Mar 15^th, 2004 at 4:10pm

Hey everybody,

I am going to be honest and tell you that now I am scared. You see I have already had a surgery to correct my moyamoya on both sides; the first with Dr. Steinberg and the second with Dr. Lewis in Gainsville (which is much closer to Miami). The problem now is that I am once again experiencing TIAs on the left side of my body Undecided

the side that should have been fixed with my first surgery in Cali. I don't know if it's just me, but I think that's supposed to happen! Smiley

The first time around I had the attitude of I have a rare disease that can be fixed, let's get it fixed! Smiley

Cool! If any of you have any advice on what to do pleas let me know. I have another angio with Dr. Lewis either this Thursday or next Tuesday.

Freckles

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babyblue Senior Poster Offline Diagnosed 2003 Posts: 306 kennesaw, USA, usa, 417, 219, GA, Georgia Gender:	Re: Remoyamoya? Reply #1 - Mar 15^th, 2004 at 4:29pm Hi, my name is christy i just joined this family yesterday. i have not yet had any surgerys and continue having tia's. i am worried about having a surgery done and it is not compforting to hear your case. please let me nkow what you find out and i wish you the best of luck. babyblue
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STrantas

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2003

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Philadelphia, USA, usa, 490, 122, PA, Pennsylvania
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Re: Remoyamoya?
Reply #2 - Mar 15^th, 2004 at 4:33pm

Freckles - I think, in order to ease your mind for the time being, you should e-mail Dr. Steinberg. He seems to respond to people really quickly. Are the TIAs frequent? Dr. Scott said I would still experience some infrequent TIAs.

Christy - from experience, like everyone who has had the surgery can attest to, the surgery itself is really not that bad. I, unfortunately, had a stroke after the surgery which took some time to recover from, but the actual surgery is not bad at all.

-Shari

« Last Edit: Mar 15^th, 2004 at 4:36pm by STrantas »

A smile is contagious...start an epidemic!
Dr. Scott did my surgeries - 12/29/03 and 1/5/04

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freckles Junior Poster Offline Moyamoya Survivor!! Posts: 86 Lakeland, FL Gender:	Re: Remoyamoya? Reply #3 - Mar 15^th, 2004 at 4:36pm I am so sorry Christy to scare you . Welcome to the group by the way. I have yet to here about anybody having tia's after having their surgeries. And I had tias for almost two years before I had my first surgery. Again I am really sorry about scaring you. Freckles
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freckles Junior Poster Offline Moyamoya Survivor!! Posts: 86 Lakeland, FL Gender:	Re: Remoyamoya? Reply #4 - Mar 15^th, 2004 at 4:40pm To answer your question Shari yes. They are frequent. I have had about one every other day or two. And I have contacted my most recent doctor, Dr. Lewis. That is how I got the appointment for another angio. Freckles
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babyblue

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Diagnosed 2003

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kennesaw, USA, usa, 417, 219, GA, Georgia
Gender: female

Re: Remoyamoya?
Reply #5 - Mar 15^th, 2004 at 7:01pm

Shari-
Its good to hear the surgery is not that bad. It just scareds me cause i was givin little info on mm and my doctor suggested not to have a surgery, so i thought my only option was my meds. Hearing the stories of others has eased my fear some and we are in the process of talking with Dr. Steinberg. I am just happy that i have found new friends that understand and im on the path to getting help.

Freckles-
Don't worry about scaring me i think its part of the unusual situation we have been given. I will be ok just glad to get as much information as possible. Let me know how things go and thank you for welcoming to this family.

Christy-babyblue

"Life is not a desination, but a journey!"

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Re: Remoyamoya?
Reply #6 - Mar 15^th, 2004 at 8:10pm

Hey Freckles,

Sorry to hear you are having more TIA's! When did you have the surgery on your left side? I experienced small TIA's after both of my surgeries... every couple of days to start with, then they slowed down dramatically. I had a small one on Sept 23rd of last year on my second side (nine months after the second surgery), but nothing since then.

It's good that you have another angio scheduled with Dr. Lewis... better sooner than later... but if you are starting to have TIA's on the side Dr. Steinberg operated on, I would still touch base with him and let him know what's going on! He may have some good suggestions for you.

Be well and please let us know how the new angio goes!

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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LisaH

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ArlingtonHts, USA, usa, 358, 120, IL, Illinois
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Re: Remoyamoya?
Reply #7 - Mar 15^th, 2004 at 11:48pm

Hello Freckles,

I had surgery on my left side at University of Chicago in December 2002. I have had TIAs since. In May 2003 I went to see Dr. Steinberg (and met DJ too!) who told me that the graft I had may not have been big enough. He wanted to do more tests but I eventually ran out of time there. Since then my TIAs have been much worse- a couple every day on average.

I am back at University of Chicago because I have no insurance and getting Medicaid which will only pay in state. U of C really can't explain why I continue to have TIAs but I am having another SPECT and a Doppler this week. They don't want to do another angio now because "it's too dangerous and not warranted at this time". I am now having TIAs on my right side (and incredibly dizzy!) so I think I will have to get surgery for that side very soon. I feel frustrated because the TIAs on the original side haven't gone away even after surgery and wondering if the same will happen after I have the second surgery. As you mentioned, the continuing TIAs after surgery don't seem to be the norm so I can relate that you feel a bit scared and worried. I will be very interested to hear what your doctor tells you after the angio- hopefully you will get some answers!

By the way, when did you have your surgeries? I think I may have missed that- I'm so tired!. Smiley

Hang in there and I'll be thinking of you!
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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Nancy_N.

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My daughter Mandy Has
Moyamoya

Posts: 664
Jasper, USA, usa, 436, 230, GA, Georgia
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Re: Remoyamoya?
Reply #8 - Mar 16^th, 2004 at 7:10am

Freckles,
I have actually read quite a few people having tias after surgery but not lasting for really long periods of time. I have a question out there for people getting dizzy there were quite a few of those over time also that got dizzy spells, do you experience it more severely when laying down because my daughter does, sometimes she says the whole rooms spinning she don't know where she is, is her way of describing it. Once in a while she's dizzy when standing up but rarely.
Thanks, Nancy

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Sara

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I am 15 years post-op
and loving life!

Posts: 208
Houston, USA, usa, 291, 279, TX, Texas
Gender: female

Re: Remoyamoya?
Reply #9 - Mar 16^th, 2004 at 2:17pm

Helo All:

I had my surgeries 14 years ago, when I was 8 and I still have TIA's to this day. I am wanting to get stressed out about reading all these people who don't anymore. But, I know that my TIA's are so much less than they were, that it doesn't seem like a big deal. They don't last long, and they aren't as bad as they used to be. Now, I can just go about my business and no one can tell there is anything going on. I don't get dizzy, though. I just "feel funny" sometimes. I still see my doc all the time. Dr. Martin is great and we just keep in touch and make sure everything is smooth...

Sara

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freckles

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Lakeland, FL
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Re: Remoyamoya?
Reply #10 - Mar 16^th, 2004 at 5:00pm

Hey all

D.J. I had my first surgery late July of 2003, and my second surgery late December in 2004. I actually did not experience any tias after either of my surgeries save one right after I woke up in December after surgery. However, Just at the beginning of this month I begin to have tias regularly. In the beginning it was one a week, now it's at one every other day and they are lasting longer than they did before my surgery. I leave tomorrow for Gainsville I have an appointmnet for Thurday and I'll let you guys know what the doctor says. And I have let California know, we're waiting to hear back. Thanks for your support

Freckles

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dw1 New Poster Offline Posts: 21 Pomona, USA, usa, 65, 209, CA, California Gender:	Re: Remoyamoya? Reply #11 - Mar 18^th, 2004 at 8:49am Hi all, Pardon my ignorance, what differentiates a tia from a seizure? I experienced seizures after my surgeries. I am wondering if I have any tia's as well. Thanks. Doug
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Mar

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Re: Remoyamoya?
Reply #12 - Mar 18^th, 2004 at 10:17am

dw1 wrote on Mar 18^th, 2004 at 8:49am:

Hi all, Pardon my ignorance, what differentiates a tia from a seizure? I experienced seizures after my surgeries. I am wondering if I have any tia's as well.

Hi dw1,

This is what I know about it...Transient ischemic attack TIA is a temporary interruption of the blood flow to an area of the brain. TIAs are usually caused by blockage of an artery. When the blood flow is restored to the brain, the symptoms go away. TIAs are often called mini strokes because the symptoms are like those of a stroke. Within minutes, brain cells are affected, causing symptoms in the parts of the body controlled by those cells. TIAs may affect vision, speech, behavior, and thought processes and may cause loss of consciousness, seizure, dizziness (vertigo), and weakness or numbness on one side of the body. However, unlike a stroke, a TIA does not cause lasting symptoms. Symptoms usually go away after 10 to 20 minutes, but they may last up to 24 hours. Seizures are different from person to person. See, the brain controls how the body moves by sending out small electrical signals through the nerves to the muscles.Seizures, or convulsions, occur when the normal signals from the brain are changed.

I hope this helped... this all can get so confusing. Smiley

Mar

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Annica

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mm

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Stockholm, Sweden, europe, 317, 154
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Re: Remoyamoya?
Reply #13 - Mar 18^th, 2004 at 2:48pm

Hi all and Mar!

I do know what a TIA is since it´s the same word in Swedish and Louise had several of them. I didn´t know what a seizure is (wasn´t in the dictionary) but now I do. You are really good at explaining complicated things Mar so thank you!!
I don´t write here very often but I go here every day and it´s only because it´s difficult communicating in a foreign language. But this site and you people mean so much to me, just wanted you to know that!!
Are there any of you out there who lives with the disease after successful surgeries and NO affects (no symtoms) of the mm at all??? I think perhaps Louise does but I´m worried it´s only temporary.

Take care

Annica

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DianeMain

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My sister, PatM, has moyamoya.

Posts: 126
San Jose, USA, usa, 23, 160, CA, California
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Re: Remoyamoya?
Reply #14 - Mar 18^th, 2004 at 11:18pm

Annica, you're doing much better with English than any of us would do with Swedish! In fact, had you not pointed it out or had a Swedish flag next to your name, I would not have even noticed that English is not your first language. So please don't feel self-conscious.

Diane
P.S. I am a teacher . . . trained as an English teacher . . . and I say your English is wonderful.

"Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us." -- Bill Watterson (1958 - ), cartoonist, "Calvin and Hobbes"

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Mar

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Re: Remoyamoya?
Reply #15 - Mar 18^th, 2004 at 11:36pm

Hi Annica,
Thank you so much for your kind words. You brought tears to my eyes when you said this website means so much to you. That says it all to DJ and excuse me for speaking for him, but that pleases him so much. Their may be miles and a language barrier of some sort, but the love finds its way, doesn't it?...and that is his goal and why we're here. I also want to say that I've talked to several people who have mm and suffer no symptoms after their surgery. Perhaps minor things, but that may be due to the damage done before the surgery. As long as you've had successful surgeries and have follow-up testing, Louise may do wonderful for the rest of her life. I know she'll be in my prayers.

Please keep in touch. Take care and God bless.

Mar

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freckles

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Moyamoya Survivor!!

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Lakeland, FL
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Re: Remoyamoya?
Reply #16 - Mar 24^th, 2004 at 3:12pm

Hey all,
I'm back. On Thursday of last week I had my angiogram and the doctor said that the blood flow to my brain is fine on both sides. The doctor ordered a CT Profusion Smiley

for tomorrow so it's back to Gainsville for me. It's interesting to hear, Sara, that after fourteen years you're still having TIAs. Are they frequent and what does the doctor say about them? I would love to hear from you.
Freckles

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Annica

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mm

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Stockholm, Sweden, europe, 317, 154
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Re: Remoyamoya?
Reply #17 - Mar 24^th, 2004 at 3:21pm

Hi Diane!
I didn´t see your answer until today and I must thank you for your kind words, they really make me feel better about my English! Thirty years ago I spent ten months, as an exchange student, in California but that seems soooo long ago and I feel uncomfortable expressing myself in English but I guess I´ll think again!!
Thank you so much and take care!

Annica Roll Eyes

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Sara

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Houston, USA, usa, 291, 279, TX, Texas
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Re: Remoyamoya?
Reply #18 - Mar 24^th, 2004 at 3:24pm

Hi Freckles!! Cheesy

I am so happy to hear your surgery went well!! Good for you Smiley

!!!

I think the TIA's I still have are very minor. It is not like it was before surgery. I just get a little weak or tingly at times. And now, It will be like the tip of my tongue will tingle. It used to be a whole half of my mouth, to the point I couldn't even drink water. I know you probably know what that's like. My doctor has told me there really aren't really any other surgeries they can do because we are already using all my "extra vessels". Sorry, I am having a hard time finding the terminology. Anyways, the "TIA's" I have now are nothing like what I used to have. My doctor doesn't see what is going on as a problem. I have never been told my sympotoms would completely go away. I had my surgery 14 years ago, and I haven't EVER had a major stroke. Do all of you think I should get a second opinion. I mean, did your nero. docs tell you syptoms would disappear post op???

Help, I am getting worried.

Tongue

Sara

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DianeMain Experienced Poster Offline My sister, PatM, has moyamoya. Posts: 126 San Jose, USA, usa, 23, 160, CA, California Gender:	Re: Remoyamoya? Reply #19 - Mar 25^th, 2004 at 3:45am Annica wrote on Mar 24^th, 2004 at 3:21pm: Thirty years ago I spent ten months, as an exchange student, in California Where in California were you? I am from New Jersey (where PatM lives) originally, but I live in San Jose, California now (since 1997). Diane
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freckles

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Lakeland, FL
Gender: female

Re: Remoyamoya?
Reply #20 - Mar 29^th, 2004 at 3:49pm

Hey Sara

,

I just got back last week from a visit to my neuro. and he put on anticonvulsants. Seems I've been having seizures. He even went so far as to consult with other neurologists and they all seem to concur. He said it was probably due to "the sudden profusion of blood" (his words) to the areas that used to have no blood supply at all. My tias or rather seizures were actually as bad and sometimes worse than the ones before the surgery. It sounds to me like yours are a lot milder, so I don't think you have to worry about seizures though I'm no doctor and he's the one to tell you.

Yes my neuros told me my symptoms should completely stop though occasional and mild tias following months after surgery were normal and everyone on this forum can probably attest to the fact that their neuros said the same thing.

Well got to go, maybe you should get a second opinion just to be on the safe side. You're in my prayers.

Freckles

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Sara

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I am 15 years post-op
and loving life!

Posts: 208
Houston, USA, usa, 291, 279, TX, Texas
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Re: Remoyamoya?
Reply #21 - Mar 30^th, 2004 at 12:23pm

Freckles:

I will ask my nero too, but what drug is the Anticonvulsants. I am on Keppra for seizure, and wonder if I wook what your on if it may be a more fitting drug. Do you know if the med. you are on causes birth defects? I am getting married in 5 months, and we really want to have kids, but the Keppra causes problems with that...

Thank you so much for being here for me to talk to.

Smiley

Sara

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alice_moya

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Re: Remoyamoya?
Reply #22 - Mar 30^th, 2004 at 3:20pm

Hello everybody,
You can take it from me, as I am probably the grandma of this group. I have been through all of this. I had lost the feeling of my hands and feet before and after the surgery. TIA's too. This is all nothing new to me. I understand the fear you are experiencing. Surgery sucks but it's necessary. Hey guys, I'm sixty four and still kickin' (well sort of) Wink

As an aside, even though I am disabled I still try to help others and this is fulfiling to me. I helped a group of people make some money for an MS fund. I wonder if there is a Moyamoya fund out there? Any ideas? This disease needs more research, understand, and publicity.
We all got to stick together.
Love Alice

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Nancy_N.

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Moyamoya

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Jasper, USA, usa, 436, 230, GA, Georgia
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Re: Remoyamoya?
Reply #23 - Mar 30^th, 2004 at 4:18pm

Sara and Freckles,
My daughter 1 year before being diagnosed with MM was misdiagnosed as epileptic (sorry about the spelling) because she was having seizures or so they thought they put her on seizure medication, there was one newer one that came out recently just then when she was misdianosed which unfortunately I can't think of the name of it but it didn't have nearly the side effects that the other meds. did she still would have to discontinue it 6 months or a year or whatever before deciding to have children the other side affects were hurrific of some of the other meds. After being seen by Dr. Steinberg in Ca. he said you realize they were not seizures it was the MM, so even if you've had the surgery you might want to make sure you really are having seizures. My daughter was passing out for 30 secs. to a minute with her eyes moving very very fast under her eye lids and appeared just as a type of seizure. You may in fact be correctly diagnosed but maybe its worth double checking on as you would the MM because misdiagnosis does happen, especially when you have to take such powerfull meds. Hope this helps. Wink

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Sara

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I am 15 years post-op
and loving life!

Posts: 208
Houston, USA, usa, 291, 279, TX, Texas
Gender: female

Re: Remoyamoya?
Reply #24 - Mar 30^th, 2004 at 5:51pm

Thanks for all your responses...

I had my serguries 14 years ago, and just started having partial seizures in July. My seizures make only my left hand shake. I have had one instance where my vision was shaking. Keppra may be the drug you are thinking of, Nancy, because it does not interact with anything else. It gave me a bit of depression when I first started taking it. But, after a few weeks, it was all good again. I just need to ask my doc about med. for when I get pregnant. I am sure he will figure it out. He is pretty good...

Sara Kiss

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