DJ,
Thanks for your wisdom.  I have been in telephone communication with Dr. Steinberg's office.  However, I have had the privelege to meet with Dr. Connolley's directly since I live in NJ and he practices in NYC.  The questions that you listed were exactly what I asked when I was with him.

I wanted to find out did you only go for a first opinion with Dr. Steinberg or was he further in your process?

I am really torn about which procedure to go with.  For practical reasons it seems that in-direct might be the way for me to go as far as surgery. 

Thanks for the response.


Charlotte.

Again, I've updated the original post with new information...

DJ wrote on Jun 10^th, 2004 at 1:46pm:

hHey, I have a question:      I have a torn rotor-cuff in my left shoulder, which is the same side I had the stroke on.  I also have a slap tear and a ripped bicept muscle.I am in pai 24/7 and my Dr. won't give me anything for pain.  I had 5 weeks of therapy but they don't know when it might heal.  They say that the shoulder area takes the longest to heal. I saw one orthapedic surgeon who refused to do sujrgery because I had 2 strokes during surgery.  My neurologist said that it should be fine if they watched my blood pressure and kept it stable    Has anyone out there had surgeries after the moya-moya surgery and how did everything go?

                                                 kathy a

Hi  Janice!
       Thanks for the reply.  Now if I can just convince the Dr.




                                                          Kathy

Hi Debora,

I'm not a doctor, but from all that I've read and the many cases I've seen here.. I'd have to say, yes, it is possible. In fact, I've talked to many who have said, for them, MM has been misdiagnosed for many years. Every case is different with MMD, because of the many various factors involved with each individual. For my niece, she was 20 years old before she was diagnosed with MMD, and only God knows how long she had it before her 4 massive strokes.

If MMD symptoms are present, (such as, continuous headaches, numbness, TIA's, etc.) There are simple tests, such as an MRI/MRA that can help determine whether further neurological tests are needed. The problem is, many doctors never look for MMD, and waiting is dangerous.

I certainly pray it's not the case with the boy you mentioned, but (God forbid) if it is, thank God, there is successful treatment in most cases, with an experienced MM specialist.

Mar

Hi Debora,

I agree with Mar and she hit on the main point that MMD is commonly either misdiagnosed or undiagnosed or both. I am not a doctor but I can share my brother's experience  and my own thoughts on the matter with you.

My brother Kevin who is now 48 went misdiagnosed and undiagnosed for 4 years even after he had a significant stroke. In retrospect, he had signs of MMD in his thirties. He actually experienced numbness and tingling in his limbs but thought nothing of it at the time because it was not dibilitating. Then came the TIA's and blackouts. Then came the stroke which was significant in that it took his speech and abstract thinking which has improved tremendously with therapy and over time. One symptom Kevin never had was a headache or migraine.

MMD has been found in infants clear through to age 67
and possibly beyond that.

The problem is most doctors are unfamiliar with MMD and therefore, they are not looking for MMD. Unfortunately, my experience has been that MMD isn't usually found by accident or early detection. It is usually found after some extreme circumstance such as limbs being affected or migraine headaches, TIA's, seizures and stroke. If MMD was more widely recognized by doctors, perhaps some would not have to experience the extremes if they could get help earlier. It's like anything, early detection is of the utmost importance.

Actually, when I look back, I believe Kevin had signs/symptoms even earlier than in his thirties. It is very possible to have the signs and symptom for years. Kevin is probably a good example of that. So for the 15 year old to have the symptoms and signs doesn't surprise me at all.

My experience has been one can have the signs and symptoms but not necessarily to the degree that get the attention of the doctors to do certain tests and especially an invasive test like angiogram or even MRI/MRA and some, although they have the symptoms don't necessarily have them to extreme.

Even though Kevin had signs and symptoms 13 years before his stroke, even after his stroke, tests did not reveal the MM collateral vessels. Even when the collateral vessels were detected on an angiogram, the doctor had no idea what it was. So, it is different for everyone. But I have to believe that one can have the symptoms and not experience the extremes necessarily until later in life and on the other hand, there are MM folks who have had all the extreme signs and symptoms at a very young age and all at once.  Again, it is different for everyone.

In my opinion, MMD symptoms can mimic other conditions and an individual may have one or two symptoms while others have multiple symptoms. I suspect this can be very confusing both to the indivuidual experiencing the symptoms as well as the doctor trying to diagnose the problem. I do however, believe there are "common" symptoms that are a signal that it might possibly be MMD. Keep in mind, most doctors are unfamiliar with MMD and I have had doctors who have said to me they have never heard of MMD or seen MMD. Unfortunately, some of these were neurologists. More reason to bring attention to MoyaMoya disease.

I hope this helps.

Lore

Hi everyone,
2 weeks ago my doctor told me I have mm disease, they keep me 6 days in hospital for all difference test, I'm home now, and have appt. with dr @ UVA on next Monday, Im nervous, what next? can you tell me?
Thank you ,

Kieu (Q)

Hi Deborah,

My daughter had a stroke at 18 months old, went through all the standard testing, doppler, ct, mra, mri and even angiogram. We were told she had arteriosclerosis and there was nothing they could do.  Years later at age 14 she started having TIA's and after a year of going from neurosurgeons to vascular surgeons she finally ended up at Shands in Florida where for the first time last month we heard of moyamoya.  We are going to meet with Dr. Pincus tomorrow to figure out a treatment plan.  Thanks to all for the great information on this web site.  And now we know the right questions to ask.

I posted a couple weeks ago.  My daughter is still undergoing testing to figure out why she is having stroke symptoms.  She had a MRA and a MRI, and her neurologist said she does not have moyamoya.  However, I am still not convinced.  Her symptoms are exactly what I have seen many describe as Moyamoya.  She has continued to deteriorate over the last month, and we are very scared.  Her MRI does show strokes that she had in the past, but doesn't seem to have new activity.  Yet, she continues to decline. My question is whether you can have an MRA/MRI scan that shows that the arteries look fine and still have moyamoya.  Would the scan definately show the blockage?  Has anyone else had similar problems with diagnosis?

I agree with katjim.......

insist on an angiogram!! if you insist...they will order it.
good luck

My 15 year old  son is being tested for moya moya in a few weeks.
He has had siezures for about 4 years now, but looking back on it we think that these may have been mini strokes.  Can anyone tell me if they had any learing or concentration problems growing up with this disease? 
Does everyone experience seizures? and if so, did you experience seizures as a child? 

It’s hard to answer that question without knowing your specifics. It would depend on what type of surgery you had. For example, because of the way a temporal artery is utilized in the different types of surgeries, additional surgeries may or may not be possible. An experienced MM specialist would best know that answer for you after some testing. I would guess you probably had an "indirect" type of surgery at age 3, but in any case, a MM specialist just may have an alternative approach to help you, more so than most doctors because of their MM experience. 

IMO, you have no choice but to try and have another type of surgery to help provide additional blood flow, or you will continue to have strokes or God forbid worse. Please try and get to an experienced MM doctor ASAP. There are answers out there, but finding the right doctor is the key.

Mar