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Lilian

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Leiden, Netherlands, europe, 222, 235
Gender: female

question, did I get it back?
Oct 28^th, 2006 at 12:03pm

Hi this is very important for me to know.

I was diagnosed with MM when I was 17 and had surgery at that age as welll.
I never had any problems after that and could cope with things quite well.
But yesterday I suffered a severe headache en this afternoon I felt very strange and I almost fainted.
I never had this before and after this I felt ok again
So I don't think I have got the flue.

Can anybody tell me if I should be concerned?
Because I was totaly freaked out by it.
Did I get MM back?
Or was it just a coincidence?
I already sent my neurologigst an email about it and I hope she will respond to it soon.

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Mar

Ex Member

Re: question, did I get it back?
Reply #1 - Oct 28^th, 2006 at 2:23pm

Hi Lillian,

It’s so good to hear from you again, it’s been a while, but I’m so sorry to hear you had a scary incident. I know you’ve been through a lot in the past and it must be frightening to think you could go through anything like that again. If I remember correctly, you had Dr. Scott. We all know he’s one of the best. So I feel confident that he’ll check into your symptoms and get to the bottom of it.

There could be many other reasons for your symptoms, and not necessarily MMD, but a simple MRI/MRA can investigate that, but it's always good to be concerned and contact your doctor to be sure.

In regard to your MM coming back... The surgery you had “bypassed” your MM affected brain vessels and attracted new blood vessels to restore blood flow to your brain, but it wasn't a cure. It's a very succesful treatment for MMD, but after surgery each patient may have a different degree of blood flow that's restored due to their individual factors involved and type of surgery they had, but the surgery is to retsore blood to the brain and reduce the chances of a stroke, but it's not a cure. I have never seen additional MM problems after a successful surgery on both sides, but individual factors make it hard to say it couldn't happen or other problems may occur for other reasons. I wish we knew more.

In any case though, it’s good you contacted your doctor. You’re educated with all this and know to act on anything suspicious immediately to get some answers as to why.

Please keep us posted. You’re in my thoughts and prayers.

Mar

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Lilian Junior Poster Offline Posts: 99 Leiden, Netherlands, europe, 222, 235 Gender:	Re: question, did I get it back? Reply #2 - Oct 28^th, 2006 at 4:35pm thanks for your message mar,I will keep you posted. If I don't receive an answer on Monday I will make a phone call. So at that time I can give you more information
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tomg

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West and wewaxsation at
wast. What I crave.

Posts: 216
HowellNJ, USA, usa, 499, 119, NJ, New_Jersey
Gender: male

Re: question, did I get it back?
Reply #3 - Oct 29^th, 2006 at 10:13am

   Hi Lillian, I dont think that we've ever coresponded.
   However With our history, any strange or disturbing feeling, especially symptoms like you have described, deserve immediate attention.
   Now I dont mean to scare you but you need to take charge of this and a simple phone call to your doctor will put your mind at ease. I know that when ever I have called Dr. Connolly with a strange feeling, (even if it was just anxiety) He would call my local hospital ER and order what ever scan he thought was best.
Either way thst's the best thing to do.

Take care Lillian    Tom G.

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elaine

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I love YaBB 1G - SP1!

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Sanford, USA, usa, 465, 285, FL, Florida
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Re: question, did I get it back?
Reply #4 - Oct 29^th, 2006 at 2:04pm

Hi Lilian, I was 48 when DXed w/mm during my first surgery on New Years Eve 1998 I had my second surgery Aug. 2000. My last angiogram was in Nov. 2003
and it showed I had narrowed conciderability in both frontal lobes, I flew from Ohio back to Florida (where I had both surgries) and saw my surgon that done my second surgery and he agreed that I had narrowed and didn't think I needed surgery again at that time, so in Nov. 2005 just before I moved back to Florida I had an MRI-MRA and that showed I had either No flow or very slow flow......Now I keep having these bad spells where I almost faint and have to hold ny head for a minute or two to keep from passing out, I told my Primary Care Dr. and he said to have my surgon sechule me an angiogram but my surgon said my primary care Dr. had to do it, so as of today No one will schule it and I feel like I could have a stroke anytime now....My surgon said he can't schule it because I have to have it done before I see him and my Primary Care Dr. says he doesn't know exactly what I need......So I am at a loss.....I definately think you should contact Someone, Probably the surgon------GOOD LUCK
4

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Elaine

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Lilian Junior Poster Offline Posts: 99 Leiden, Netherlands, europe, 222, 235 Gender:	Re: question, did I get it back? Reply #5 - Oct 29^th, 2006 at 2:24pm elaine, that's a sad thing to hear! I hope I will get the help I am asking for and I hope you will get that as well! I already sent my surgeon an email, so I hope I will have an answer by tomorrow. thanks for your message.
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Nancy_N.

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My daughter Mandy Has
Moyamoya

Posts: 664
Jasper, USA, usa, 436, 230, GA, Georgia
Gender: female

Re: question, did I get it back?
Reply #6 - Oct 30^th, 2006 at 9:41am

Elaine you have to be much more persistant, tell them they'll have a law suit on they're hands if anything happens to you (not that you'll do that) but to scare them into it........ anything....whatever it takes, this is your life they're playing with. They should order an MRA instead its a better test for MM....call them both everyday until you get satisfaction, they'll get sick of hearing from you and hopefully give in. Obviously somethings going on. That makes me so mad that they are doing this to you sometimes Drs. can be real jerks.
Your Neuro. in my opinion should be handling it. How about contacting the surgeon any maybe they can call the Neuro. and insist the tests be done...KEEP TRYING everything you can. Why didn't they do anything in 2005 when it was blocked off again? Keep us posted, and good luck...eventually someone has to help.
Nancy

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Lilian

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Leiden, Netherlands, europe, 222, 235
Gender: female

Re: question, did I get it back?
Reply #7 - Oct 30^th, 2006 at 10:03am

I just called my hospital in Holland to ask for my neurologist and I was treated extremely rude by her assistent whom I got on the phone.
didn't even ask why I was calling and just told me my neurlogist was busy and that I should call back 13 november
stupid woman
It is an emergency
I am not calling to chat
And that's what I told her.
But she wouldn't listen and just told me the phone number and time I should make the phone call.
It was so rude and I was really angry when I hung up.
So I hope she will respond to my email annyways.
I hate things like this.

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mg12061

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Albany, USA, usa, 492, 84, NY, New_York
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Re: question, did I get it back?
Reply #8 - Oct 30^th, 2006 at 10:22am

I'm very upset to hear the way some of you are treated by the Dr.'s.I'de like to add my 2 cents here and put a different perspective on this.I don't have MM,but my daughter does.If she was experiencing any symptoms that you have described,I would have had her to the ER immediatly, and not leave until they gave me a straight answer, and did the proper tests. I know none of us would ever take a chance with our children's health.Well as adults we forget that WE deserve the same treatment,and we need to take controle and make sure that we don't slip through the cracks that some of these dr.'s have made.I know I'm guilt of it too,putting my own health second,but this disease is so unpredictable that we need to be careful, and never let anything go that doesn't seem right.Even if the Dr.'s don't know about MM all they need to know is that you're succeptible to strokes and TIA's and they should take that very seriously,and order tests to find out if that's what's happening.I'm so sorry when I hear that anyone ahs to go through so much just to get someone to lsitne to them.I keep all my MM family in my prayers.
mary Grace

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Lilian Junior Poster Offline Posts: 99 Leiden, Netherlands, europe, 222, 235 Gender:	Re: question, did I get it back? Reply #9 - Oct 30^th, 2006 at 10:40am thank you for your message mg the problem is, I am in Sweden at the moment with my boyfriend. We are planning to move here permanently, and we won't be back untill december. But I want answers now. I just wish my dr would reply to my email. I would feel so much better than...
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mg12061

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Albany, USA, usa, 492, 84, NY, New_York
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Re: question, did I get it back?
Reply #10 - Oct 30^th, 2006 at 10:55am

Have you tried going to the ER? It doesn't matter if they don't know much about MM you can educate them about it and they can also get in contact with your Doc.He has to answer them if they call him.At least they can get the neccesary tests done right away no waiting a month or weeks.By the way I'm still online if you want to chat,sorry I missed you I was checking my e-mail
Mary grace

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Lilian Junior Poster Offline Posts: 99 Leiden, Netherlands, europe, 222, 235 Gender:	Re: question, did I get it back? Reply #11 - Oct 30^th, 2006 at 11:18am no I haven't done that. I am still a tourist here so I don't think they can help me here
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Mar

Ex Member

Re: question, did I get it back?
Reply #12 - Oct 30^th, 2006 at 2:02pm

Lillian,

I think you did the right thing in e-mailing Dr. Scott as well about your concerns. Hopefully he’ll respond and help direct you knowing your MM history. Did you explain that you were out of the country and that your neurologist is not taking you and your concerns seriously?

I don’t understand how they can’t help you there? I understand they may not be experienced with MMD, but when any patient comes to any medical facility with your MM history/brain surgery, and with possible TIA symptoms, can’t they at least evaluate you or order an MRI/MRA and send Dr. Scott a copy to get some answers?

Elaine,

You’re too educated about MM and know the risks involved to accept that kind of a reply from either doctor. Demand one of them schedule your test ASAP or get another doctor that will. If your arteries have proved to have narrowed considerably, you’re the one at risk for a stroke or possible death, not them. I agree with Mary Grace… then get to a ER immediately, then they have help you.

Smiley

Mar

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Lilian

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Posts: 99
Leiden, Netherlands, europe, 222, 235
Gender: female

Re: question, did I get it back?
Reply #13 - Oct 30^th, 2006 at 4:51pm

Quote:

Lillian,

I think you did the right thing in e-mailing Dr. Scott as well about your concerns. Hopefully he’ll respond and help direct you knowing your MM history. Did you explain that you were out of the country and that your neurologist is not taking you and your concerns seriously?

I don’t understand how they can’t help you there? I understand they may not be experienced with MMD, but when any patient comes to any medical facility with your MM history/brain surgery, and with possible TIA symptoms, can’t they at least evaluate you or order an MRI/MRA and send Dr. Scott a copy to get some answers?

Smiley

Mar

I haven't spoken to my neurlogist yet just to her assisten and she was very rude.
I will wait for the answer of doctor scott and my own neurlogist. Before I go to the hospital here.

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Lilian Junior Poster Offline Posts: 99 Leiden, Netherlands, europe, 222, 235 Gender:	Re: question, did I get it back? Reply #14 - Oct 31^st, 2006 at 5:16am I received an email back from dr scott and he thinks I should have a MRI / MRA and compare them to older ones. He asked me if I had a recent MRI MRA done, which is not the case. So I expect this will happen soon.
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Lilian Junior Poster Offline Posts: 99 Leiden, Netherlands, europe, 222, 235 Gender:	Re: question, did I get it back? Reply #15 - Oct 31^st, 2006 at 9:15am My sister called the hospital and my neurologist is planning a MRI for me and when she has done that, she will call my sister back. So I expect it to happen soon.
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mg12061 Old-Time Poster Offline Posts: 946 Albany, USA, usa, 492, 84, NY, New_York Gender:	Re: question, did I get it back? Reply #16 - Oct 31^st, 2006 at 1:12pm That's great.I'm so glad that things are moving toward getting you an answer.Keep us posted. Mary Grace
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Lilian Junior Poster Offline Posts: 99 Leiden, Netherlands, europe, 222, 235 Gender:	Re: question, did I get it back? Reply #17 - Nov 2^nd, 2006 at 8:18am I am getting an MRI within two weeks. I don't know the precise date yet, but I hope to get that soon.
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elaine Experienced Poster Offline I love YaBB 1G - SP1! Posts: 200 Sanford, USA, usa, 465, 285, FL, Florida Gender:	Re: question, did I get it back? Reply #18 - Nov 2^nd, 2006 at 7:16pm I too am gonna see about an MRI--MRA I just don't tolarate it very well.....too chlosttaphobic.........They have to sediate me......I was always told that an angiogram was the best test for MM but since neither of my Drs. will schudule me one I will ask for MRI--MRA,,,,, Thanks for everyone that cares..........Elaine
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Lilian Junior Poster Offline Posts: 99 Leiden, Netherlands, europe, 222, 235 Gender:	Re: question, did I get it back? Reply #19 - Nov 6^th, 2006 at 9:16am my mri will be on the 18th of november
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Daley New Poster Offline Hi I am Daley 11 years old Posts: 2 Wijk bij Duurstede, Netherlands, europe, 224, 238 Gender:	Re: question, did I get it back? Reply #20 - Nov 7^th, 2006 at 2:15pm Hoi Lillian, waar krijg jij je mri en wie is jouw specialist. Daley's zijn specialist is dr Braun in Utrecht en is geopereerd in Zwitserland door dr Yonekawa, misschien heb je hier iets aan. Als je eventueel vragen hebt kun je ons bereiken op 06-18476533. We wensen je veel succes. ouders van Daley.
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Lilian Junior Poster Offline Posts: 99 Leiden, Netherlands, europe, 222, 235 Gender:	Re: question, did I get it back? Reply #21 - Nov 7^th, 2006 at 4:48pm ik krijg mijn scan 18 november in amsterdam(VU) mijn specialist is dr scott uit Boston en uit amsterdan dokter M Visser
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Lilian Junior Poster Offline Posts: 99 Leiden, Netherlands, europe, 222, 235 Gender:	Re: question, did I get it back? Reply #22 - Nov 25^th, 2006 at 6:21pm I will have the results of my MRI on 4 december Hope to tell you more at that time..
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