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Why no surgery? (Read 13014 times)
LisaH
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Why no surgery?
Jun 2nd, 2004 at 12:37am
 
I just read two messages on the "Guest Book" from two people that have lived with MM for awhile and have not had any surgeries.  I also know there are a couple of people posting on this board that have not had a bypass surgery yet diagnosed with MM. 

I find this very confusing and completely contradictory to all the research so my simple question is:  Why not? Smiley

For these people, have your doctors told you not to have bypass surgery or have said you aren't a candidate for surgery?   If so, what specific reasons do your doctors give for saying this?  Or, is not having surgery your own personal choice?  If that's the case, what are the specific reasons you have elected to not have surgery?

Keep in mind that I am not suggesting that anyone is in the wrong! Smiley  Simply just curious, and I have to admit, a bit dumbfounded.

Lisa
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tomg
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Re: Why no surgery?
Reply #1 - Jun 3rd, 2004 at 3:07pm
 
Smiley  Hi Lisa this is Tom Gallucci.  I guess I'm one of the people you're refering to.  Dr Connolly looked at all of my recent tests and said what he had been saying from day one.  Aside from the initial stroke,  I am truly asymptomatic and have good blood flow to my brain.  The stenosis is very minimal.  His logic was that Brain surgery is a serious matter and what ever possible benifit there might be was out weighed by the risks.
     Believe me I would welcome the surgery just to get this over with.  It's not an easy thing to live with.  Dr connoly also explained that any future symptoms would appear gradually and not like a freight train.  At that time I would be a candidate for surgery.  I'm sure that's in my future.

Take care,  Tom
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AndyMac
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Re: Why no surgery?
Reply #2 - Jun 3rd, 2004 at 7:37pm
 
I understand what Tom is saying: we have read a series of articles by doctors who are arguing about whether surgery should automatically follow diagnosis.
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Matt
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Re: Why no surgery?
Reply #3 - Jun 3rd, 2004 at 8:13pm
 
AndyMac wrote on Jun 3rd, 2004 at 7:37pm:
we have read a series of articles by doctors who are arguing about whether surgery should automatically follow diagnosis.

Could you please state what articles, what doctors and from where you got this information?? I've been doing research and have not seen any such mention and would like to read these articles you speak of to understand why they would take the risk of a stroke. I notice that u r not from this country. Are they as updated in research where u r from?
Thank you.
Matt
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AndyMac
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Re: Why no surgery?
Reply #4 - Jun 3rd, 2004 at 8:36pm
 
Matt - there are some articles in "Archives of neurology" (I think a US-based forum) which include an article titled "Immediate Surgery for Moyamoya Syndrome?
Not Necessarily" by an E. S. Roach, MD, of the Department of Neurology, University of Texas Southwestern Medical Center, Dallas.  I think if you search the net with these key words you'll find it.  In the same series, Dr Scott argues in favour of surgery (article titled "Surgery for Moyamoya Syndrome?
Yes".)

Don't get me wrong - we argued very strongly for surgery asap for our daughter, following which she was operated on at Great Ormond Street hospital in London last summer, but I was pointing out to Tom that there was an argument between doctors about whether surgery should automatically follow.  Hope this helps.

Andy
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LisaH
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Re: Why no surgery?
Reply #5 - Jun 4th, 2004 at 3:09am
 
Thank you everyone who has so far replied to this post.

Andy- First of all let me say that I am so happy that your daughter had surgery!  Secondly, thanks for posting the article by Dr. Roach as an example.  I don't agree with his logic personally but it's an interesting take on MM.  I wonder though how many patients this Dr. Roach has actually seen and when he wrote this article?  Would you happen to know?  The conflicting opinions on surgery (and they are BIG conflicts in my opinion) scare me frankly.  I feel it hurts those being treated with MM.  I wish all the doctors were on the same page with this because this disease is nothing to mess around with.

Tom- Thank you for answering too!  My big question to you is this:  if you have such good blood flow that you don't need surgery (yet anyway), why did you have a stroke in the first place?  Also, what risks does Dr. C associate with the surgery -besides the usual risks in any surgery?  Do you happen to know if Dr. Connelly has done any extensive research on MM?   Believe me, when I ask these questions I am asking out of curiousity and not sarcasm!   Wink   

When I was first diagnosed, I corresponded with a woman whose doctor told her that the surgery was only for children hence there was no hope for her!  Scared the you know what out of me because I thought I was going to die for sure.  I'm happy I found out otherwise but geez talk about a BAD doctor! Angry   I wonder how many people have died because the doctors gave out wrong advice- either out of innocent ignorance or big egos? Smiley

Well, I look forward  to hearing from others that are not having the surgery, for whatever reasons.  I hope they respond.

Thanks,
Lisa
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DJ
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Re: Why no surgery?
Reply #6 - Jun 4th, 2004 at 1:48pm
 
LisaH wrote on Jun 4th, 2004 at 3:09am:
I wonder though how many patients this Dr. Roach has actually seen and when he wrote this article?


Lisa, I can answer this question because I was able to find the article last night.

Dr. Roach didn't base his statements on any of his own patients.  His statments came from an article in 2001 in reference to a 1997 study of 821 patients in Japan.

Doesn't do us much good in this country in 2004 I wouldn't think...

Just my  Smiley

P.S. I have all of the articles Andy referred to (and more).  If you would like to see them, PM me.
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Laura
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Re: Why no surgery?
Reply #7 - Jun 5th, 2004 at 1:12am
 
Hi Lisa, In response to your asking about MM patients that have been diagnosed and not scheduled for surgery yet, I am one of those patients.  I was diagnosed with MM on l/25/04 after having a stroke in the middle of the night.  I lost all function of my left side for about 30 minutes.  I couldn't talk right either.  It went away about as fast as it came on.  After going to the hospital and determining that I did in fact have a stroke, the hopsital here (Monroe, LA) noticed something on my MRI that looked  funny and they either thought it was MS or a brain tumor.  (I have suffered from horrible headaches for about ll years)  I was then sent to  Dallas, Texas for a second opinion.  There, they did an arteriogram among other tests and diagnosed me with MM.  The neurologist there has me on about 20 pills a day  including strong doses of coumadin ( 9 mg) daily.  He does not recommend surgery at this time and wants to follow me for now.  I go back for a neuclear medicine brain flow test in August to see  how fast it is progressing.  I sent all my test to Dr. Steinberg last month.  He also agrees.  He along with my Dallas doctor talked and they believe that  my MM is in the early stage and will need to be followed for now and determine for surgery as it progresses.  I guess I am just scared that another stroke will follow and I might not be as lucky next time and will have lasting damage.  But, I feel better after having Dr. Steinberg look at it and he felt the same  way.  I mean, he sees this every day and I believe that if he felt that I needed surgery now that he would have told me.  Anyone have any response to this long story???  I am so confused as to where to turn??? Smiley
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Nancy_N.
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Re: Why no surgery?
Reply #8 - Jun 5th, 2004 at 10:45am
 
I was just wondering if 20 pills a day are all necessary? Are they all for moyamoya related things? Did you tell Dr. Steinberg by any chance what Meds. your on? Just wondering.
                         Nancy Smiley
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Laura
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Re: Why no surgery?
Reply #9 - Jun 6th, 2004 at 10:00pm
 
Nancy, Yes, most of these are for the MM.  Several of these are vitamins that are supposed to help with arteries.  B2, Ester C, Mag Oxcide, Coumadin, Verapamil, Benicar, Zanaflex, Fioricet,  Topamax,  Amitriptiline (elivil) and several others that I can't remember right now.  I'm not sure if Dr. Steinberg is aware of all the meds that I'm taking.  I didn't get to talk with him.  I only spoke with Teresa.  But both my neurologist and Dr. Stieinberg spoke and I'm not sure if they discussed what all he put me on or not.  By the time I get through taking all my meds., I'm not hungry for any food!!!  I take some at breakfast, some at lunch and some before bedtime.  It gets old!!  And not only that, I have to go and have my blood levels checked every week to make sure the thickness is the proper level since I am coumadin.  It needs to be at a certain level because if it is too thick, I am at a increased risk for another stroke and if it is too thin, I guess then a bleed is something to worry about.  So, it has to stay between a 2.0 and a 3.0 at all times.  So each week I go and have to get stuck with a needle!!!  Not much fun. Tongue Undecided
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Nancy_N.
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Re: Why no surgery?
Reply #10 - Jun 7th, 2004 at 12:35pm
 
Laura,
             I do agree if Dr. STeinberg feels you don't need surgery now that would make me feel much more comfortable for sure he's the man. I just wonder if maybe you should call him or Theresa and see if you really need all those pills, they may not have talked about it. You very well may need them, but maybe you're putting yourself through all that everyday unecessarily.  Maybe some others on the site can post if they have had to take this many pills each day. My daughter takes 4 in the morning two in the afternoon and one at night but some are for the after affects of her strokes for pain management and attention, and of course her asprin a day. Just trying to save you some gagging lol. Hopefully we will get some feedback.
                                                     Nancy Smiley Wink
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Kristina
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Re: Why no surgery?
Reply #11 - Jun 7th, 2004 at 1:13pm
 
My Dr. at the time of diagnosis (3 yrs ago) too said I did not have to have the surgery right away - b/c of no signs of continuing symptoms, but it would be needed in the future.  He ended his statement with "Both Sides will eventually need to be done".  At that point, I put everything behind me-way too overwhelming.  Now that I have found this website (once my symptoms have began to re-occur) and see how so many people are like me, I am not so scared anymore.  Thanks DJ for the best website ever!    Smiley
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Annica
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Re: Why no surgery?
Reply #12 - Jun 7th, 2004 at 3:38pm
 
Hi Kristina!

Welcome so much to this webside and yes, isn´t it great?
How old are you and do you perhaps have Swedish´ancestors because you do have a Swedish spelled name? I know Kristina is an fairly international name but this is the way we spell it  over here.

I am the only person from Sweden on this site and I have an 8 year old daughter, Louise, with moyamoya and she is doing fine 18 months past surgery. Because of the language I am not able to understand everything on this board but I do understand that this disease has very many different "speeds" so perhaps you have a slow one? My daughters wasn´t and she was lucky to have the right treatment in time.

Take care and ttyl!

Annica
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David
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Re: Why no surgery?
Reply #13 - Jun 11th, 2004 at 12:04am
 
I was told the same thing.  However, three years and one brain hemerrage later I am questioning that reasonning.  The collateral vessels that are created due to the blockages are fragile that you are already at high risk for hemerrage.  Add to that any blood thinners that you are taking and the risk is even greater.  I would say get a second opinion from someone who truely knows what he/she is talking about but get the surgery as early as possible.  Why wait for something bad to happen.  Surgery is pretty much enevitable anyway.

David
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Kristina
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Re: Why no surgery?
Reply #14 - Jun 11th, 2004 at 11:50pm
 
Hi Annica, please forgive me for not posting sooner.  I am not Swedish but my moms side is Irish.  I am 31 years old diagnosed when I was 29.    My symptoms have been minimal until recently.  I am having my surgeries on the 30th and another on the 7th.  I will be at Stanford the same time that David and Hillary-Holly will be there and hope to hook up.  I expect a speedy recovery & to be back to work in no time.  I finally told my friends, family, and my boss yesterday...what a relief....I am ready to face this and be done.  Is there anyone else that you are aware who are preparing for surgery(s). 

My prayers are with all MM sufferers and survivors.    WinkKristina
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janicetedd
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Re: Why no surgery?
Reply #15 - Jun 12th, 2004 at 8:40am
 
Kristina,

I will keep you in my prayers -- keep us posted. 

My sister was diagnosed in 12/97 and kept being rechecked every six months at Mayo Clinic in Rochster Minn.  The last recheck was 09/00 and the blood flow was much better that the drs were going to reevaluate  their diagnosis of mm.  Well the worst happened.  I struggle with wondering how much better her quality of life would be if she had the surgery before the devistating stroke.  But that is history. 

Read everthing you can and go to the best mm docotrs.


Janice
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cji
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Re: Why no surgery?
Reply #16 - Jun 18th, 2004 at 12:04am
 
Before starting my opinion about surgery on MM, I have one question to Janice Did your sister take any medications during the follow-up periods from initial diagnosis?

I think that the purpose of surgery in MM is the future prevention of the stroke. Because the MM is thought to be worsen in life time, however still the exact natural histroy of this disease is not well known. Also in addition, the cause of this disease is not well known. In textbook descriptions, it is called as progressive idiopathic bilateral supraclinoid occlusive arterial disease with/without basal collateral vessels.

Actually this terms are not scientific and it is only the description of this disease. Anyway, the status of Brain perfusion is the hallmark to do surgery or not. If the brain suffers from the lack of blood flow (presented with repetitive or worsening strokes or TIAs), surgery is mandatory. If the patient is well tolerated from the lack of blood flow (minimal strokes or TIAs, not repetitive) the surgery can be delayed until the eventful stroke develops....

You can say that how it disastrous to wait for new strokes will develop.....I agree.....That's the role of the doctors to find out that which patient should be delayed for surgery. I think Janice's sister had increased blood flow to her brain during the follow-up periods....That situation is not well understood in the literature as I knows about. Your sister perhaps can have some clues in this disease, I suppose.

My personal interest (sorry for this word.....) is that MM really needs surgery? What the natural history of the MM patient will have? What's the cause of this disease?

But, now the one point that should do surgery is the symptomatic criteria & evidences of significant decreased blood flow (often diagnosed with Diamox SPECT) and presence of abnormalities of posterior brain circulations....

Thanks....
Take Care, everybody.

Jin-Il
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Nancy_N.
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Re: Why no surgery?
Reply #17 - Jun 18th, 2004 at 12:26am
 
I personally agree with your personal feelings about this also, waiting for a major or more of a major stroke seems rediculous, it almost just seems like a common sense thing to have the surgery before that happens. I wonder if there are other reasons behind waiting, I can't imagine what. I just don't get the Dr's that say wait. My own opionion.
                                 Nancy
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STrantas
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Re: Why no surgery?
Reply #18 - Jun 18th, 2004 at 9:26am
 
I have to agree with Nancy.  Before my surgeries I felt like a ticking time bomb waiting for a serious stroke.  I think, in my opinion, it is necessary to prevent a debilitating stroke if you know, ineveitably that it's going to happen anyway.  Better to have the surgery when you are healthy - then after you have had a debilitating stroke.

Anyway, Jin-Il, your comments are very interesting and insightful.  I wish that more doctors were aware of MM and the importance of the surgery.  Are you doing research on MM??  Do you have a loved one that has MM??  I'm really glad you have joined this board and are sharing your knowledge.  Thanks!   Smiley  Smiley Smiley

-Shari
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« Last Edit: Jun 18th, 2004 at 9:26am by STrantas »  

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cji
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Re: Why no surgery?
Reply #19 - Jun 18th, 2004 at 11:40pm
 
It's great to hear from Shari & Nancy.

Whenever I see the patients, I feel that the God heals the people and doctors...are mere assistant to help the people to go into their presumed way. This thought is not fully from me, and one of my respecting doctor told to me once when I was in Paris studying interventional neuroradiology, two years ago.

I am doing, retrospective analysis of the MM patient with my colleague in one of largest hospital in Korea. About 400 patients are enrolled from 1994 to 2004. I have lots of questions about the MM. Those questions let me try to study about MM.

We are also planning to do some prospective clinical trials upon our future coming retrospective results.

1) Moyamoya needs immediate surgery? : needs more clinically oriented angiographic classifications, needs more reliable perfusion studies tested among various modalities
2) Is it really fatal if left untreated? : should be investigated the cause, the natural history of the MM
3) Which MM patient will have bled/or ischemic? : these 2 outstanding clinical features of the MM needs further interpretations....

Um...  Roll Eyes It's not easy way to going through with these thoughts. However, I am very happy to hear from the people of the board and also good to communicate with your thoughts....

Most medical teachings come out from the patients....

Jin-Il
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janicetedd
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Re: Why no surgery?
Reply #20 - Jun 21st, 2004 at 8:53am
 
Hi Jin-Il

I believe my sister Patty (before her stroke) was on a daily aspirin and a vitamin with a lot of folate.

Glad you are posting on this board.


Janice
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