Welcome, Guest. Please Login or Register
Moyamoya.com
 
NEW search box below... Search Moyamoya.com with Google!
  HomeHelpSearchLoginRegisterEvent CalendarBirthday ListDonate  
 





Page Index Toggle Pages: 1
Send Topic Print
MM SINCE 1992 (Read 1124 times)
terra42519
New Poster
*
Offline


I love YaBB 1G - SP1!

Posts: 5
burnside, USA, KY, Kentucky
MM SINCE 1992
Oct 22nd, 2009 at 6:06pm
 
My mom was diagnosed with MM in 1992..She was only 28 years old..The doctors told her she wouldn't live to be 30..She is 45 now! The doctor's told her that MM normally affected children,and it was rare to be diagnosed at her age..She has had so many strokes,the strokes mainly affected her right side,she lost her motor skills after her first stroke,after working with a speech therapist she regained her speech,only to have it taken for good from another stroke Sad She has tunnel vision they declared her legally bind. She has seizures alot also
It's scares me to death,Because my sister and I have to be tested every 8 years for MM..And now that I have a daughter of my own she also has to be tested..
What are the chances of it running in the family? The doctors told us it was an inherited disease ..I've seen how MM took the live of a healthy women and turned it upside down..It's so scary to life in the shadow also thinking that could me..I'm 26 years old and the fact knowing my mother was only 2 years older than I am now when she got diagnosed is sooo scary!!
Back to top
  
 
IP Logged
 
Little Luca
Senior Poster
****
Offline


Whatever it takes

Posts: 343
Somerset West, South Africa
Gender: female
Re: MM SINCE 1992
Reply #1 - Oct 23rd, 2009 at 4:52am
 
Hey Terra

Sorry to hear about your mom. She should be seeing a neurologist more familiar with moyamoya. The strokes she's having can possibly be stopped and her life expectancy extended. Without knowing much about her particular situation, what is her current neurologist waiting for? A fatal stroke? Please see the link below which has a list of doctors familiar with moyamoya:

http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?board=surgeons_board

Find one closest to you and get her scans to him ASAP for another opinion.

Regarding your fear of it being hereditary, I'm not sure. I think this topic has been discussed a number of times on here. Maybe someone else has more info on that. If you've been tested a number of times in past and the tests have indicated nothing, then try not to worry too much. Moyamoya is not a death sentence if caught and treated on time. The treatment being surgery.

Good luck and know that there are a number of people on this forum going through what you're going through.

Stay strong
Mark (Luca's Dad)

P.S. Your doctors wrong about it normally affecting children. Moyamoya doesn't discriminate, it likes people of all ages.
Back to top
  

1st stroke in September 2008
Bi-lateral mm diagnosis
2nd stroke in November 2008
Left side surgery in December 2008
Doing just great!
 
IP Logged
 
Mar
Ex Member


Re: MM SINCE 1992
Reply #2 - Oct 23rd, 2009 at 2:24pm
 
Hi Terra,

Mark is absolutely correct. This disease effects all ages. Without knowing your Mom’s specifics, I would still wager that she’s had it a long time before her diagnosis in 1992 but was simply undiagnosed, like we see so often. This is a rare and progressive disease and the medical community lacks knowledge and experience about it, so we often also see improper direction for treatment. In most cases this is a successfully treatable disease, but promptly with an experienced MM neurosurgeon, and tragically it sounds as though your Mom did not have the surgery promptly after her diagnosis to avoid those additional strokes that come with this disease if not treated.

As far as MMD running in a family, all I can say is what we know so far, and that is… the cause of MM is unknown. This disease may be hereditary and multifactorial. Some genetic predisposition is apparent because it tends to run in families 10% of the time, so researchers think it may be the result of inherited genetic abnormalities. However, it may occur by itself in a previously healthy individual or in association with certain other diseases/disorders and syndromes as well. The association with other diseases may not necessarily be the cause of MM, but warrants consideration in the research.

The conventional wisdom seems to be to watch your family for symptoms, such as involuntary movements, headaches, dizziness, seizures, TIA’s (numbness or tingling) or any cognitive issues.  Again, that’s why learning all you can about MMD is so important. You would then know the signs/symptoms and get the immediate attention that this disease deserves, and most importantly with an EXPERIENCED MM Neuro. Please do not go to the doctors that said it only affects children. That's an immediate red flag to their MM knowledge/experience.

Second opinions are very wise when dealing with a rare disease and they’re easy now a days with the technology. I have to agree with Mark. Your Mom should get a second opinion. It could possibly save her life. This disease only gets worse over time and will result in a stroke/hemorrhage or death if not treated.

Mar
Back to top
  
 
IP Logged
 
terra42519
New Poster
*
Offline


I love YaBB 1G - SP1!

Posts: 5
burnside, USA, KY, Kentucky
Re: MM SINCE 1992
Reply #3 - Oct 23rd, 2009 at 2:33pm
 
She has a neurologist  that she has to see once every two months, She is on Coumadin and Neurontin along with many other meds. She has to get her Coumadin lvls  checked twice a week..With being on  Coumadin,any surgery is very dangerous..Heck a Dentist won't even clean her teeth w/o a big safety ordeal..She hasn't had a stroke in a while but still has seizures often..She has mood swings often..She is on pain meds for her headaches,and valium to help her stay relaxed..U.C. in Cincinnati is who diagnosed her with MM..I'm sure doctor's know way more now about it,then they did back then..I'm not sure surgery is her best bet now,maybe back then if she was given the opition..She has been through so much through the years  Embarrassed It's just so sad and scary
Back to top
  
 
IP Logged
 
Becky
Old-Time Poster
*****
Offline


Stroke10/03, Diagnosed6/04,
Unilateral Surgery9/04

Posts: 532
Minneapolis, USA, usa, 303, 84, MN, Minnesota
Gender: female
Re: MM SINCE 1992
Reply #4 - Oct 23rd, 2009 at 4:38pm
 
Welcome to the famliy Terra.
I am sorry to hear about your Mom. DO NOT stay with that neurologest. PLEASE find a MM specialest. They will be able to help your mom. She Still could get the corrective surgery and possibley gain some of her life back! Her headachs are possibly from lack of oxygen and the mood swings are from that as well. It is like your brain is trying to say "Help me I can't breath" DO NOT coniunue to WAIT!! IT IS NEVER TOO LATE!!!!!
I will pray for you to find a Doctor on the list Mark said to look. If not Please send her infromation to Dr.Stineberg his name is ontop of the list.
Please save her life and get the second opinion by a MM Expert,
Becky
Back to top
  

What doesn't kill us, makes us stronger. And sometimes leaves a cool looking scar.     STA-MCA bypass and EMS Surgeries done at same time at the Mayo clinic
 
IP Logged
 
Lore
MM.com Benefactor
***
Offline


My brother Kevin (Cubbie)
has Moyamoya

Posts: 819
Delaware, USA, usa, 419, 133, OH, Ohio
Gender: female
Re: MM SINCE 1992
Reply #5 - Oct 23rd, 2009 at 8:08pm
 
Hi Terra and Welcome to the MM Family.

I'm sorry to hear your mom has had a rough time of it. I agree with Mark, Mar and Becky who have given you excellent advice.

I can only add that I live in Ohio, my brother went misdiagnosed for four years, had two strokes, TIAs, seizures and blood on the brain. The doctors in Ohio either took a wait and see approach, admitted they had little to no experience with MM or they suggested I take my brother home to live out whatever life he had left.

I found this site, sent my brother's films/test to Dr.Steinberg at Stanford and the rest is history. My brother had two successful STA-MCA surgeries at Stanford in 2005. He is alive and doing well given all he had endured prior to the surgeries. He could not speak and had no abstract thinking ability. Today he can speak and has regained most of his abstract thinking ability. Not only did Dr. Steinberg give my brother a second chance at life, he greatly improved his quality of life.   At least give it a shot and send your mom's films to Dr. Steinberg for a second opinion. He will render an opinion at no charge.

When my brother was on Coumadin, before he got to Stanford, he had multiple TIAs daily. Once he got off Coumadin, the TIAs stopped. Also, he is on Keppra to control the seizures. Is your mom taking any anti-seizure meds?

I, like you, was saddened to see my brother deteriorate like he did so quickly and it was very scary but it doesn't have to be if you can get to a MM Specialist. A MM Specialist may be able to help your mom even if another doctor doesn't think so. Like Becky said "It's never too late" and it's certainly worth a try to see if your mom can be helped.

Please know we are here to support you and your mom. If there is anything I can do to help, please don't hesitate to email me.

Lore
Back to top
  

"What lies behind us and what lies before us are tiny matters compared to what lies within us." - Ralph Waldo Emerson
 
IP Logged
 
terra42519
New Poster
*
Offline


I love YaBB 1G - SP1!

Posts: 5
burnside, USA, KY, Kentucky
Re: MM SINCE 1992
Reply #6 - Oct 26th, 2009 at 7:14am
 
Lore,
      Yes my mom is also on Keppra along with Coumadin and Neurontin,lortab 7.5 3 times a day and valium 10mg 3 times a day and seroquel and a blood pressure pill there are a few others but I'm not sure the names right off.. Seems like to me way to much meds for one person  Embarrassed
Back to top
« Last Edit: Oct 26th, 2009 at 7:25am by terra42519 »  
 
IP Logged
 
PaulaMart
Junior Poster
**
Offline


I Love MM.com!

Posts: 84
Spain
Gender: female
Re: MM SINCE 1992
Reply #7 - Oct 27th, 2009 at 5:36am
 
Hi, I don't want to confuse you, but I think that the medication that your mother is taking should be adjusted by a Neurologist with MM experience. I think that in most MM patients, are used antiagregants such as aspirin and not anticoagulants (coumadin) because of the risk of bleeding. For example, in Paula's case, she was taking a calcium channel blocker which acted as vasodilatador but in US Drs withdrawn it because they said that could decrease her blood presure ... hope it helps.
Back to top
  
 
IP Logged
 
mattsmom
Junior Poster
**
Offline


My son, Matthew, has moyamoya.

Posts: 59
Albuquerque, USA, usa, 180, 215, NM, New_Mexico
Gender: female
Re: MM SINCE 1992
Reply #8 - Nov 4th, 2009 at 1:18pm
 
Terra,

I agree with everyone else here.  You need to find another doctor.  While I agree that they may not have known as much in 1992, it saddens me to know that no one took it further.  Dr. Scott perfected his procedure as long as 1985. 

The seizures are probably due to damage from the strokes.  You can't get back what has been lost -- but you  might be able to alleviate current suffering and definitely prevent further damage. 

I know you said your mother has lost her speech -- but I am sure she has adapted to some other form of communication.  Talk to her.  Find out what SHE wants to do . . .

AND GET ANOTHER DOCTOR!!

Kim -- mom to Matthew, 17, diagnosed with mm at 7, three strokes, and doubly rare with renal artery stenosis that led to removal of the kidney

(we went to Boston from NM for his surgery in 1999)
Back to top
« Last Edit: Nov 4th, 2009 at 1:20pm by mattsmom »  
ksanchezs  
IP Logged
 
mattsmom
Junior Poster
**
Offline


My son, Matthew, has moyamoya.

Posts: 59
Albuquerque, USA, usa, 180, 215, NM, New_Mexico
Gender: female
Re: MM SINCE 1992
Reply #9 - Nov 4th, 2009 at 1:25pm
 
I also wanted to post this from a q & a session with Dr. Scott:

Does moyamoya disease run in families? Do my affected child's brothers and sisters need to be checked for the presence of the disease? 
 
In our own series, we have 19 patients (twelve families) where there are either siblings with the disease, or a parent-child syndrome. One operated patient has two children, one of whom has the moyamoya disease. One patient has two other siblings who have the disease. In general, however, a familial or genetically transmitted form of moyamoya disease is rare in the Western Hemisphere. There is no current method of determining before birth whether the developing fetus is likely to have the disease. As of March 2008, we have not recommended that siblings of affected patients be studied by MRI/A or angiography unless there are compelling reasons to do so, such as symptoms that suggest temporary loss of blood flow to the brain, such as stroke, TIAs, seizures, and so on. We have recommended that identical twins be studied, as well as siblings where there is a strong family history of stroke at an early age. Although the average age for the development of symptoms is around 7 years, no one know when the artery narrowing first begins, and it is certainly conceivable that an MRI/A during the first year of life might not detect the potential presence of the disease. 


I hope that will be able to make you feel  more confident about you, your sister, and your child.  Dr. Scott had seen more than 100 patients when I met him 10 years ago.  If he doesn't worry too much about it being hereditary, I would feel more confident.  I am not saying to ignore symptoms.  You do need to be MORE aware.  But I hope it eases your worries. 

Kim
Back to top
  
ksanchezs  
IP Logged
 
JenniferCBradley
New Poster
*
Offline


I Love MM.com!

Posts: 1
Re: MM SINCE 1992
Reply #10 - Oct 23rd, 2019 at 6:10am
 
I am really glad to see what an amazing post you shared. we all here want to know the disease it's in this generation became a very common problem yet. It sch a helpful post I believe all the post which could help every person in his tough situation. We work on the same purpose review that we want to provide to people with a good service.
Back to top
  
 
IP Logged
 
Page Index Toggle Pages: 1
Send Topic Print



Moyamoya.com Forum » Powered by YaBB 2.4!
YaBB © 2000-2009. All Rights Reserved.


©2003-2018 Web Vision Enterprises LLC All Rights Reserved. All information on this site is protected by international copyright laws. You may not re-distribute any information from this site without written permission from Web Vision Enterprises LLC and the webmaster of this site. Violators will be prosecuted.

You may view our privacy policy and financial disclosure statement here





Valid RSS Valid XHTML Valid CSS Powered by Perl Source Forge