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Question about other signs of Moyamoya (Read 6298 times)

gelika

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Parker, USA, CO, Colorado

Question about other signs of Moyamoya
Jul 11^th, 2008 at 5:00pm

Hi,

I am new here and almost a year ago my daughter was diagnosed with congenital Morning Glory Disc Anomaly and Coloboma. Actually none of the doctors we have seen (there were 3 different ones) know really what is going on. Anyway, because of the Morning Glory Disc Anomaly they requested my daughter go in for an MRI and MRA which she did last November to see if she has moyamoya. They said she did not. They did say however that the wanted her to have MRI's and MRA's every two years to make sure nothing develops. I have been trying to find information regarding Morning Glory Disc anomaly related to moyamoya but can't find any that I really understand. I was curious if there is anyone out there that had MGDA or Coloboma that was told they have Moyamoya. My daughter has no other signs that I am aware of. Any help would be greatly appreciated. Thanks!

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Mar

Ex Member

Re: Question about other signs of Moyamoya
Reply #1 - Jul 11^th, 2008 at 10:04pm

Hi gelika,

Welcome to our MM family!

I’m sorry to say that I have no specific information that may help you regarding MGDA, but I can say that I have read about it being associated with MMD in some cases. It’s been said that because doctors rarely give children (carotid, cerebral) angio’s for MGDA symptoms, that MMD goes under recognized. In fact, the reason I’m responding, is to tell you that MMD goes undiagnosed or misdiagnosed all the time and if your doctors aren’t familiar enough with this rare disease, they too may not diagnose it soon enough. The definitive test for MMD is an angiogram.

You do not always have signs or symptoms with MM. This disease can be totally silent, if the brain's blood supply can be maintained by the other blood vessels, (MM vessels) but there lies the danger with this disease because you’re always at risk for a stroke, so prompt diagnosis and treatment is vital.

I sure hope someone else can shed more light on this for you and I certainly hope and pray your daughter does not have MM. I just wanted you to be aware of the fact that we often hear of doctors missing the diagnosis of MMD if they’re inexperienced with it, but I’m so glad to finally hear someone in the medical field is at least considering MM as a possibility so prompt treatment can be given if diagnosed. We rarely see that.

You and your daughter will be in my thoughts and prayers.

Mar

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Lore

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My brother Kevin (Cubbie)
has Moyamoya

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Delaware, USA, usa, 419, 133, OH, Ohio
Gender: female

Re: Question about other signs of Moyamoya
Reply #2 - Jul 11^th, 2008 at 10:15pm

Hi gelika,

I want to welcome you to the Moyamoya family however, I probably won't be of much assistance to you.

I am not a doctor or a clinician and I don't personally know of any Moyamoya patient that also has MGDA and therefore, don't know if there is a direct correlation between the two.

There may be others on the site who are either familiar with or have experienced both MGDA and Moyamoya who will respond.

Although you mentioned your daughter has no other symptoms that you are aware of, you also mentioned none of the 3 doctors you have seen appear to really know what's going on. For that reason, my suggestion would be to get an expert opinion from an experienced and knowledgeable Moyamoya specialist.

Again, welcome to the Moyamoya family.

Lore

"What lies behind us and what lies before us are tiny matters compared to what lies within us." - Ralph Waldo Emerson

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gelika

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Parker, USA, CO, Colorado

Re: Question about other signs of Moyamoya
Reply #3 - Jul 11^th, 2008 at 10:35pm

Hi Mar and Lore,

Thank you both so much for responding so quickly. After I had posted, I actually sent an e-mail to the office of Dr. Steinberg to see if he would be interested in viewing her MRI and MRA. I just received the CD in the mail today of her MRI and MRA. I'm hoping someone at his office will get back to me. It would just make me feel better knowing what a specialist actually says instead of 3 ophthalmologists who really don't know.

Lore, you said that the definitive test for MMD is an angiogram. Hannah had an MRA which I think is similar but without the dye. Is that correct? Should she actually be having an angiogram with the dye?

Like I said, thank you so very much for your quick responses. I hope someone else can read this and shed more light on it as well.

Sincerely,
Angelika

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Mar

Ex Member

Re: Question about other signs of Moyamoya
Reply #4 - Jul 12^th, 2008 at 8:17am

Hi Angelika,

There’s no better MM expert on earth than Dr. Steinberg. You are so very wise to get a second opinion!! It saves lives when dealing with a rare disease!

Someone will definitely get back to you from the office and explain what to do next and where to send the films. They’re wonderful like that.

As far as the angio goes, Lore is absolutely correct. The angio is the definitive test for MM because it actually shows the MM vessels. The way I understand it is, the MRI/MRA can give the initial indications of MMD, but IF they know what they’re looking for and at. Unfortunately we’ve seen many misdiagnosed or undiagnosed with an MRI/MRA. I don’t know if Hannah will need an angio or not, I think Dr. Steinberg will tell you if he thinks it’s necessary for your next step. That’s the life saving part of a second opinion with a MM expert.

I’m so proud of you for doing this research!! The road you’re taking will definitely help give you the safe and accurate answers you need when dealing with this rare disease.

God love ya!

Mar

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Shan

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MM Survivor ~ May 27,
2005

Posts: 849
Honolulu, USA, usa, 376, 346, HI, Hawaii
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Re: Question about other signs of Moyamoya
Reply #5 - Jul 15^th, 2008 at 2:35pm

In all fairness... I have to chime in and say that Mar's response above is merely "her" opinion... And before I receive an influx of negatory responses to this post, I am not disagreeing that Dr. Steinberg is/is not a MM expert. I personally believe him to be a MM expert...amongst a handful of others--as many of you are a living testimony of his God given gift. He has literally been a blessing to many and has saved and changed many lives. Again, my personal opinion I've formed due to this site and from speaking with patients of his. However, a disclosure identifying her statement would be appropriate in this case.

Quote:

"There’s no better MM expert on earth than Dr. Steinberg."

I just feel that in all fairness to newcomers to the site, we need to truthfully identify what are documented facts versus what we feel/believe to be the truth (our personal opinion).

To Angelika & Hannah,

Obtaining additional opinions is absolutely the right thing to do (in my opinion) Wink

And I in no way am trying to discourage you from seeking advice from Dr. Steinberg. As you can see from this site, he has been instrumental in many people's lives...and has offered them a "new lease" on life. Keep the faith and know that we're here to support you! Smiley

Take care,
Shan

"Love, Accept And Respect All Things And All Situations In Life … They Are Especially&&Designed For Your Personal Learning" ~Howard Willis

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Shan

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MM Survivor ~ May 27,
2005

Posts: 849
Honolulu, USA, usa, 376, 346, HI, Hawaii
Gender: female

Re: Question about other signs of Moyamoya
Reply #6 - Jul 15^th, 2008 at 6:38pm

Aloha Angelika,

Not sure if this may help, but your daughter's diagnoses interested me, so I decided to read more about it, and found this study/paper that references both MGDA and Moyamoya...

Krishnan C, Roy A, Traboulsi E. Morning glory disk anomaly, choroidal coloboma, and congenital constrictive malformations of the internal carotid arteries (moyamoya disease). Ophthalmic Genet. 2000;21:21–4. [PubMed]

Another abstract found online...
"We report a new association of coloboma of the iris and optic disc and eczema of the skin in a child who developed stroke due to Moyamoya syndrome."
http://www.indianpediatrics.net/may2004/may-496-499.htm

Take care,
Shan

"Love, Accept And Respect All Things And All Situations In Life … They Are Especially&&Designed For Your Personal Learning" ~Howard Willis

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gelika

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Parker, USA, CO, Colorado

Re: Question about other signs of Moyamoya
Reply #7 - Jul 15^th, 2008 at 11:15pm

Shan,

Thank you for taking the time to respond and do a little research. Of all the research I tried doing on the internet, I don't think I saw either of these. Although some of it is confusing, it sounds like it is good to have the MRI and MRA done. I'm just not sure if her ophthalmologist or radiologist knew what exactly to look for.

Thanks again for helping me out!

Sincerely,
Angelika

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