Hello everyone,

I am new to this site after being diagnosed in May. After all that I've read on this forum and practically every other reliable site on the Internet, I have yet to come across one case that is similar to mine. I had symptoms (migraines and TIAs-weakness in arms and inability to walk provoked in hyperventilation situations) for about 10 years all throughout HS and college and occasionally for a couple of years afterwards. I am 32 years old today and have not had any symptoms whatsoever for the past 8 years. In fact the only reason I finally have a diagnosis is because my doctor ordered an MRI after head trauma suffered while playing contact sports.

I currently live in France and am being monitored by a national research center for rare vascular diseases of the brain and eye (so yes they are specialists in MM) and just yesterday, I underwent all the usual exams and so far, the initial results are normal, with no progression.

EVERYTHING I read says that MM is progressive and that surgery is the ONLY option. My neurologist begs to differ and says there have been patients who do not get operated on and who live to a very old age. I wrote an e-mail to Dr. Scott, whose contact info I actually received from a neurosurgeon in NYC, and I am hoping that he can shed some light. But in the meantime, has anyone else heard of such cases as mine?

THANKS everyone.

chess06,
Welcome to this sight. I have MM Syndrome. My brain perfusion showed I needed surgery after i had a stroke to prevent any TIAs or another stroke. I only have an ocasional migraine since healing from the suergry 4 years ago. I see my neurologest once a year and for the past 5 years I have had no presression. I am glad to hear you have seen a MM specialest and are double checking with Dr.Scott. Please let us know what Dr.Scott's diagnosis is.
Becky

Hi everyone and thank you to those who responded.

As I understand, MM syndrome is associated with an underlying disease such as Down's, sickle cell, thrombophilia, meningitis, etc. The tests I underwent included intensive blood work to check for all this, plus to answer your question Mar, an angio, a scintigraphy (I think this is referred to as a SPECT), a second MRI + MRA (no progression since the initial ones in May), sonogram/Doppler and spinal tap. Granted, I don't have the official, final results yet, but my next appointment with the neurologist is in mid-January, so apparently he does not think my case is urgent. At my initial appt with him, he said the multidisciplinary team would study my case and decide upon the course of treatment: surgery or regular monitoring. This meeting took place last Thursday and I should be receiving a summary report of my results shortly.

This research center is well known and a neurosurgeon friend in the US (non MM specialist) confirms. I have read that quote you put up Mar, and that is why I wrote to Dr. Scott for a second opinion but he has yet to reply.

I will post an update as soon as I hear anything new. But thank you to all. This is really a great site.

I think my symptoms were similar to yours. From pre-school to high school I had chronic severe migraines, and paralysis (left side) evoked by hyperventilation. The paralysis subsided pre teens and the migraines reduced  in frequency post high school. My 1st stroke was at the age of 40 which revealed a previous stroke and resulted in the MM DX. I had the indirect bypass (EDAS right side) several months later and the 1 year follow up angio showed no further progression. The right carotid is near completely occluded and the left is only slightly so with no signs of progression. I decided to have surgery because I concluded it was the best option to reduce the risk of stroke in the right side. I did not have the left side surgery.
Russ

chess06 wrote on Mar 9^th, 2010 at 4:55pm:

It’s a shame; you have totally misunderstood the advice given from this forum. No one has ever advised you or anyone else for that matter, to have surgery; we are not doctors and could never ever say that! We simply state what the MM experts have found over the last three decades studying this disease, and that is that surgery is the ONLY TREATMENT to help avoid that risk of a stroke/hemorrhage that comes with this progressive disease. We have always stated that the progression differs from patient to patient and that no two cases are alike. We ALWAYS advise getting the opinion of an experienced MM neurosurgeon, and then naturally it’s up to the patient or parent to review the recommendation and determine what is best for their particular case.

With that being said, you may have found other cases similar to yours, this is true, I too have seen cases as well, but I’ve also seen hundreds of MM patients who took the advice of the "wait and see" approach and ended up with devastating strokes, and unfortunately many too who have died. So all we can do in this forum is give you and every new member the facts, as we know them, and be there for support. There are no guidelines or protocol for MMD and many doctors out there know little about this rare disease, so it’s dangerous and irresponsible for us not to give you all the facts as we know them.

My prayers are with you.

Mar

These are my opinions - I felt obliged to comment on this post...

chess06 wrote on Nov 23^rd, 2009 at 9:11am:



I don't think enough is know about the MM to make this statement.  While I have seen associations such as those listed above, I can't trust this statement - especially if I were a newly diagnosed patient looking for information.  None of us are doctors.

chess06 wrote on Nov 23^rd, 2009 at 9:11am:


Based on my experience - my case wasn't considered acute either (not urgent), yet I was still scheduled for surgeries within a few months after my diagnosis.

Just my 2 cents..

-Shari

My daughter Amanda is having her surgery in Boston at the end of this month.  Dr. Scott and DR. Smith will be doing a Pial Synag. (indirect surgery) on both sides.  I try to read this site as much as I can and after reading this particular story by chess06 and all the replies, after reading everything I am so nervous and scared!  We have researched and got our second opinion.  From everything we read and talked about with DR. Scott,  it seems the only solution is surgery.  My daughter has not had any strokes,  she gets headaches and they have gotten worse.  She see spots that are like "little granes of sand"  with eyes open and closed.  She had 4 seizures as an infant (they think they were all small TIAs).  I struggled a lot, thinking if we are making the right decision.  This is my 8 year olds life!  I want her to live a long happy life!  I've gone back and forth with many questions like:  are they correct with the diagnosis, she didn't have major strokes or other diagnoses.  Sometimes I look at her and think, she doesn't have this.  But then reality sets in, other times I look at her and something is just not right,  she may be pale,  just seem off.  I've notice now when she has been running or tired - her eyes look blood shot!  This scares me.  It bothers me that I get so worked up if I find out she was running a lot at school (she doesn't take gym right now - shouldn't get over exerted) that's hard to do with an 8 year old.  She can't handle a lot of activity.  She takes an aspirin a day.  The bottom line is,  I want to do anything I can to keep her from getting a major stroke or complication from this condition.  Surgery is our only shot at this from what I can see.  Dr. Scott (our second opinion)  was wonderful with us.  Amanda was diagnosed in October by MRI, MRA and ANGIOGRAM in Pittsburgh.  My husband always tells me.  The pictures/tests don't lie.  She may not have all the s/s that a lot have, but this is a RARE condition.  Dr. Scott even told us it took a While to go over her tests because her particular case is unique.  He said we really found this EARLY!  The disease looks atypical in some respects, but believes she has the real syndrome.  January was when we finally got all the info and made the decison to go with surgery.  We asked if we could wait a few months (didn't want to do it around birthday, holiday or school) then realized we'd be putting it off all the time.  Amanda's safety was our ultimate priority. DR. Scott said it would be safe to wait a few months, as she was not showing any major s/s.  However the disease is progressive, not predictable.  Keep her well hydrated, keep from hyperventilating and overexertion.  We trust this doctors advice.  He is a specialist in MM, which is the most important thing, and like he told us,  not only is he a specialist in this, his whole team is experienced.  That helped us make the decison not to stay in PIttsburgh.  We want the best for Amanda with this being a rare condition.  What if we wait and  one day when AManda is 15 or 20
her life stops or digress forever!!  So to me Surgery is the only option.  I have heard good stories from kids having the same surgery in Boston and other STates.  I am praying Amanda's journey will be safe and surgery will keep her safe!
TAmmy,  MOM OF 8YR OLD AMANDA.  MY LITTLE ANGEL.

i have been reading this thread and i have to agree please do nt wait and see jacob was 2 mths old when he had his first stroke and i will never forget hearing the doctors standing outside jacobs hospital room whispering it looks like something called moyamoya but we have never seen it before so lets just wait and see now mind you i am listening to this i am very scared and didnt know what to do my oldest child had been diagnosed with cerebal palsy and she had a hospice nurse coming in the home we were very close i called her right away and told her what i overheard she researched neurosurgeons and found Dr Scott we sent him copies of all test and he wanted us in Boston then we flew to Boston with in to days of him confirming it was mm remind you jacob was 2mths with 1st symptoms  he was 10 mths when we finally got a diagnoses but my point is  by these doctors here thinking it might be mm and wanting to wait jacob now has severe disabilities from his strokes  and i still close my eyes and remember when he used to could say moma and bottle and ball now  jacob cant speak because of the severity of his strokes so from my experience and i have 3 children with mm my oldest by the way Dr Scott tested her while we were in Boston she too has mm and so does one of my twins and you know after jacob looking back going through test after test with savannah i was told so much it was just one of those things that happens she had a stroke during birth, after recalling all events with vanna its all the same symptoms with jacob as i will say a wait and see is really not a good thing but that is my opinion