Hello, my sister was diagnosed with Moyamoya a few years ago.

Since her diagnosis, no help or support of any kind has been offered.

We live in Coleraine, Northern Ireland. There aren't even 2 million people living in NI, so chances are the doctors have never seen this before.

My sister, who is 38, had a stroke when she was four and when she was 11. She has had different health problems through out her life, none of which were seen to be related until the diagnosis - she had epilepsy in her teens, stuttering, slight involuntary spasms, sometimes dazy/dreamy, constant headaches, a tingling in her right arm, and recently she found out that she should have been wearing glasses since childhood.

As a result of the strokes she has a limp on her right leg and does not have full use of her right arm and hand.

A lot of the symptoms seemed to have eased off with age. Apart from the strokes, it was throughout puberty that she showed the worst symptoms. The epilepsy and stuttering and the spasms have now nearly disappeared and she became noticeably more alert.

But she has been admitted to hospital this week because of severe headaches and vomiting and difficulty walking. A scan showed some scars, but the doctors are unsure if they are from the past. My mother says that my sister was ill exactly like this before her last stroke, when she was 11.

Surgery has never been mentioned, nor has any integral approach to her illness - headache management etc been forwarded. Basically she was told: We think you have Moyamoya, good bye.

We really don't know what to do to help her, she has two healthy children aged 5 and 2 but we don't think she is getting the right treatment.

In fairness, as I have mentioned, there probably isn't a doctor in NI who would know how to treat her.

Are there any posters here from NI, or even the UK who have had experience with adult Moyamoya and can recommend a doctor or surgeon that can help us?

Who can we speak to to get help?

Moyamoya has disabled my sister and the NHS has done little to help her, even when they have taken so long (30 years) to diagnose it. It was only this year that it was discovered that she needed glasses as well, and she was told she probably needed them since her childhood.

I have one last question, should her children be checked for moyamoya as well? As far as I know neither show any symptoms.

Hello Niaronski!

I know excactly how you feel!! :-/
As you have probably noticed there are mostly American posters here on the board and not many doctors in Europe practice treatment of moyamoya.

We are from Sweden and my daughter Louise was treated here by a surgeon who we greatly trust. However I think he is a pediatrician (sp?) and it was his very first moyamoyasurgery so he does not have much experience, though did he contact experienced colleagues via mail and phone to get a second opinion.
You might DEMAND that your sisters doctors do the same.
You might also contact some of the members on this board from UK ( by checking the members list and the "map" om the top row. OR you can send me a personal message and I will give you the name and phonenumber to my daughters doctor.

Good Luck to you and your sister!!!

Annica

OMG, your sister’s story is absolutely heartbreaking, I’m so sorry. It upsets me so much when I hear someone not getting the help needed, when I know there is successful treatment readily available here in the USA. I don’t know of any MM experienced doctors in NI, but there have been a few members from the UK that were successfully treated in London. A few members have posted on the “Surgeons with Bypass Experience” forum of this website the following doctors with MM experience: Miss Joan Grieve consultant neurosurgeon National Hospital for Neurology and Neurosurgery, London UK, and another member posted, Dr Thompson in Great Ormond Street Hospital in London.

MM is definitely a treatable disease IF you could find MM experienced resources. All the health problems and symptoms you’ve described throughout her life are all MM related symptoms, it’s so sad that no one has helped her which allowed this disease progress. She could have been diagnosed and successfully treated if the doctors there were only familiar with this disease. As mentioned, MM is a progressive disease and only gets worse over time and with MM you are always at risk of a stroke if left untreated. Surgery is the only treatment for MMD, by introducing new blood flow to the brain by either "direct" or "indirect" bypasses. They “bypass” the blockage, but once a stroke or bleeding takes place, even with treatment, the patient may be left with permanent loss of function. Prompt treatment is vital.

My only suggestion would be to write; call, e-mail any and all neurological facilities or doctors that will listen until you find someone that has MM experience and can treat your sister ASAP. Time is not on your side with MMD, waiting allows for progression and further strokes.

As far as your question, should her children be checked for moyamoya as well? What we know so far is, the cause of MM is unknown, but because it tends to run in families, researchers think that MMD may be the result of inherited genetic abnormalities. So, if her children showed any symptoms at all as your sister did, yes I would suggest having them checked. Early detection is the key. MM can be diagnosed, but you’d need MM experienced medical professionals to detect and diagnose it properly. Even here in the USA, its often misdiagnosed and undiagnosed if they are not familiar with MM and don’t know what to look for. My niece didn’t have any symptoms at all before her 4 major strokes, other than an occasional headache. She was never diagnosed until it was too late and the strokes did permanent damage, but it’s different for everyone because of the many individual factors involved. Learning all you can about this disease will help you a great deal.

I certainly hope and pray your sister can find the help she needs. Please know you have a group of people here who understand and will help you in any way we can. Please keep us posted.

Keeping you all in my thoughts and prayers.

Mar

I have subsequently found out that in the 1980s a female consultant called Dr. Ballentine, from a Manchester Hospital, said she was willing to do surgery but also said that she thought it best to see if my sister's teenage symptoms got better by themselves, most of them did.

The doctor was reluctant to carry out surgery because she said it was a delicate operation.

The damage done by the strokes - causing her to limp and her restricted use of her right arm and hand - was irreversible.

Surgery was not carried out. Strangely my father remembers being asked if there was any chinese ancestry in our family...

This all happened more than a decade before she was diagnosed with Moyamoya.

I will check for other UK members on the site, good idea!

Hi Niaronsky,  I sorry to hear about your sister. I was diagnosed with mm in 2002 but also had two strokes before that. I had by-pass surgery in 2003 at the University of Iowa Hospitals. I have been stroke free since. The surgery does help. I know that I cannot do anything to change things but I live one day at a time and hope to find a cure.

Take care, Sharon

At the moment, the doctors are trying their best to find a suitable medication to stop the headaches.

My mum printed off a few things from this site and the doctor said she had already visited this website to find out more information!!! She gladly accepted my mum's findings, but we still need to find the right medication.

Of course this will not cure the problem, but one step at a time.

My sister has been sent back home with five different medicines to take for her headaches and has an appointment with her epilepsy doctor in a fortnight.

I am only a bystander in all of this, and it is very frustrating.

It is truly heartbreaking for those of us who recognize the symptoms you list and know what you and your family are going thru!  I'm so glad you've found this website!  The surgery is risky, but with an experienced surgeon and anesthesiologist, the outcome can be very good.  Our son had bi-lateral EDAS surgeries after a left-hemisphere stroke 10  yrs ago at the age of 3.  While he still has some deficits due to the stroke, he is mostly as normal as any other 14 yr old.  (ie, people who dont know cannot tell and even those who do know think everything is fine!)
Moyamoya is seen much more frequently in Asians, so that is probably why they were asked about "Chinese" ancestory.  (there's none in our family that we know of, though)  There is a study underway here in Houston (UT Medical Center) looking for a genetic link with MM and other vascular diseases; it appears (in the early stage of the study) that there is a genetic, therefore familia link.  There should be a link w/in this website for information to join the study.
Unfortunately, MM is progressive.  If your sis is showing signs of abnormal activity again and has been diagnosed with MM, the surgeries are probably recommended to prevent further brain damage.  I hope you can help her get to a neurologist/neurosurgeon familiar with Moyamoya.
God bless you all = will be praying for answers for you.

Sue