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Diagnostic process and questions for surgeons (Read 12427 times)
mattsmom
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My son, Matthew, has moyamoya.

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Albuquerque, USA, usa, 180, 215, NM, New_Mexico
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Re: Diagnostic process and questions for surgeons
Reply #25 - Oct 3rd, 2005 at 9:47pm
 
I cannot reiterate what Cara's mom said enough.  Anesthesia is a LIFElong concern for moyamoya patients.  I have this information straight from Dr. Scott himself. 

While I do not regret it, (because it put us on the road to recovery) Matthew was 7 at the time of his initial angiogram that diagnosed his MM.  However, because he was seven, he was knocked out and the anesthesia caused his second stroke.  I guess I can also say that I do not regret it because we see NO long term effects from that stroke.  We see long term effects from his first stroke and his third stroke -- but not the second.  go figure . . .

All MM patients have oxygen level concerns and blood pressure concerns.  MM patients need very stable oxygen levels during anesthesia.  They also cannot have low blood pressures.  In fact, Dr. Scott likes to slightly raise the blood pressure when performing surgery.  (Matthew's body did that by itself due to his blood pressure issues). 

Please, please, please . . . check the anesthesologist too!!!  They must be aware of MM!!!

Kim
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charlottek
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Re: Diagnostic process and questions for surgeons
Reply #26 - Oct 21st, 2005 at 8:04pm
 
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.

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DJ
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Been there, done that...

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Re: Diagnostic process and questions for surgeons
Reply #27 - Oct 31st, 2005 at 10:18pm
 
Hi Charlotte,

I'm so sorry for such a late response to this thread.  You posted your question while I was in California and, for some reason, I'm just running across it now.

There has been a lot of discussion lately about which type of surgery is best.  Obviously, each MM patient and their family has to make that decision for themselves.  I don't think you will find anyone here "bashing" one type of surgery over the other, rather providing as much information about each of their personal experiences in order for people to make an informed decision about which path to take for their treatment.

Please see the thread entitled "Choosing the right type of surgery" located at: http://www.moyamoya.com/cgi-bin/yabb/YaBB.cgi?board=news;action=display;num=1129... hopefully those posts will answer a lot of your questions.  If you still have concerns, please don't hesitate to post them here!

Hang in there and I hope this post isn't too late getting to you!

Wink

DJ
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DJ
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Been there, done that...

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Re: Diagnostic process and questions for surgeons
Reply #28 - Nov 5th, 2005 at 8:43am
 
Again, I've updated the original post with new information...

DJ wrote on Jun 10th, 2004 at 1:46pm:
I've had several requests for this information and wanted to make it a little easier to find.

Here would be my personal thoughts on the general diagnostic process and questions for surgeons...


General Process:

  • Initial tests (in order): transcranial doppler (ultrasound of the carotid arteries), MRI (shows any stroke), MRA (shows any problems with the carotids), angiogram (shows the road map of the arteries in the brain and THE diagnostic test that shows the actual moyamoya vessels)
  • Moyamoya diagnoses
  • Referral to a moyamoya specialist or a neurosurgeon with experience doing the STA-MCA (direct) or EDAS (in-direct) procedures
  • Interim medication: depending on the situation (stroke or hemorrhage), aspirin or blood thinners until surgery can be done
  • Additional tests: SPECT (shows the perfusion [or flow] of blood through the brain), Xenon CT (another test similar to the SPECT. Only available at a few medical facilities around the country)

Questions for surgeons:

  • How much experience with moyamoya? (i.e. how many moyamoya patients have they treated)
  • Which method of surgery is best for YOUR case (direct or in-direct), and how much experience the surgeon has with each method? (YOUR research is imperative here because there is a definite difference between the two methods and you need to have an informed idea of which method you think is best for you)
  • If my type of surgery (direct or in-direct), is not successful in increasing blood flow, can a subsequent (or different type) of surgery be performed?
  • How long until the surgery is effective in replenishing blood supply to the brain?
  • Will I be having surgeries on both sides and how long between each surgery?
  • What will the surgical recovery process be like?
  • Will I have any more strokes, TIA's, or seizures after surgery?
  • What will the follow-up process be like?
  • Will I have to take any medications after the surgery?
  • What is the long term prognosis?


Hope this helps to get the list started at least!?

-DJ

[Nov 5, 2005 edit: With all of the discussions recently about the difference between the different types of surgeries, I've added the 'subsequent surgery' question to the "Questions for surgeons" area above.]


[Nov 20, 2004 edit: I've edited the order of the "General Process" area above, moving the transcranial doppler from an additional test, to the first initial test. My logic is that the transcranial doppler shows good indication of blood flow through the carotid arteries. It is also a much more cost effective test to get the diagnostic process started, rather than jumping straight to the MRI/MRA. I hope this makes sense.]

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Adversity does not build character... it reveals it... †I help my neighbor and my neighbor helps someone else. Life is a wonderful circle!
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SISTER27
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Re: Diagnostic process and questions for surgeons
Reply #29 - Nov 5th, 2005 at 11:30pm
 
Thank You DJ!!
I have just been diagnosed with MM and  Your Questions and general process is a great help to me. I can now go to the Surgeons and ask all the right things insead of being Totally clueless Smiley. Knowing that you been through this is a comfort to me I can ask you and the other how they got past the fear and frustration. Your site is a godsend ;Grin ;Grin !


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Lot of Love &&Michelle
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kathy_a
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Re: Diagnostic process and questions for surgeons
Reply #30 - Nov 27th, 2005 at 8:51pm
 
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
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janicetedd
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Re: Diagnostic process and questions for surgeons
Reply #31 - Nov 28th, 2005 at 7:27am
 
Hi Kathy,

MY sister Patty has mm and just had 4.5 hours of hand surgery.  Came through with flying colors.

Janice
Waterford, MI
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kathy_a
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Re: Diagnostic process and questions for surgeons
Reply #32 - Nov 28th, 2005 at 7:25pm
 
Hi  Janice!
       Thanks for the reply.  Now if I can just convince the Dr.




                                                          Kathy Smiley
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Debora
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Re: Diagnostic process and questions for surgeons
Reply #33 - Jan 10th, 2006 at 5:03pm
 
Would you please tell me whether a person with Moya Moya can survive for several years without knowing she/he has the disease? I came across a case which fits most of the description for Moya Moya but the boy is 15 years old now and has had most of the symptons since he was 2. Could this be possible? Thanks for any help.
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Mar
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Re: Diagnostic process and questions for surgeons
Reply #34 - Jan 11th, 2006 at 1:47am
 
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
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« Last Edit: Jan 11th, 2006 at 1:53am by N/A »  
 
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gotchlorine
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Re: Diagnostic process and questions for surgeons
Reply #35 - Jan 11th, 2006 at 7:16am
 
Hi Debora,

I will add to Mar's excellent post by telling you of our personal experience. 

My daughter was 17 at the time of her MM diagnosis.  She was diagnosed at age 6 with migraines.  We just lived with the migraines until, at age 16, she had a varied order of symptoms with a migraine occurrence.  Her neurologist ordered an MRI, which indicated that she had had two small strokes.  They believe the strokes occurred either while I was pregnant with her or in early infancy.  It took another 8 months for her MM diagnosis.  While we have no absolute proof (other than the two minor strokes), we believe that Tara's MM existed years before we knew of it. 

As Mar said, unfortunately many patients have gone quite some time either undiagnosed or misdiagnosed.  The rate of progression is different with each MM patient.  Sometimes treatment is obtained before a major event (stroke or hemorrhage) happens, and very sadly, sometimes it isn't.  Our hope is that the medical profession becomes better educated about this disease and learns to rule it out, especially when stroke-like symptoms are exhibited by a pediatric patient.

Hope this helps!

Warmly,
Jill
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Lore
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Re: Diagnostic process and questions for surgeons
Reply #36 - Jan 11th, 2006 at 8:08am
 
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
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Debora
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Re: Diagnostic process and questions for surgeons
Reply #37 - Jan 12th, 2006 at 5:35pm
 
Thank you all for replying to my post. I really appreciate it. I'll forward the information and hopefully this will help the family. Thank you!
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moody
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Re: Diagnostic process and questions for surgeons
Reply #38 - Jan 25th, 2006 at 12:14pm
 
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? Sad
Thank you ,

Kieu (Q)
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YuYu
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Re: Diagnostic process and questions for surgeons
Reply #39 - Feb 7th, 2006 at 6:22pm
 
Carol, et al,

Thanks for your post about the anesthesiologist needing to know that the person may (or does) have moyamoya.
Boston Children's Hospital has a specific protocol that they follow when anesthetising children (and adults) with moyamoya (or suspected moyamoya). 

When YuYu had has stroke and was set for his cerebral angiogram the hospital here in NM had never seen moyamoya, and even children with stroke is rare.  Thankfully my friend is a pediatric neurologist at Boston Children's and she was able to convince/educate the docs and anesthesiologists here in NM to follow their protocol - which in YuYu's case may well have saved his life!!

This piece of the proverbial puzzle is elemental in doing angiograms on moyamoya patients!!!

Thanks, and welcome to our new friend from Korea!!
Cheryl in NM - proud Mama to YuYu (4.5 years old, adopted from China last July)
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JuliesMom
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Re: Diagnostic process and questions for surgeons
Reply #40 - Mar 21st, 2006 at 1:54pm
 
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.


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Islandentity
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Re: Diagnostic process and questions for surgeons
Reply #41 - Jul 27th, 2006 at 1:24am
 
Hi Everyone, Thanks for a excellent website, it was recommended to us by our diagosing DR.  After 4 years of reoccuring symptoms, 5 doctors, 3 hospitals,  4 mri's 2 mra's. A EMT-B as a father( me ) our 10 year ols son has a name to put to his symptoms and that name is MOYA MOYA......I will have to tell the story some time ......
when i find the right spot  to put it.......as I borswe this site  I am learning were to find things...........HUGE Thank you to DJ
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emsmom
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Re: Diagnostic process and questions for surgeons
Reply #42 - Oct 2nd, 2006 at 12:49pm
 
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?
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James
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Re: Diagnostic process and questions for surgeons
Reply #43 - Oct 3rd, 2006 at 8:25am
 
emsmom,

I would post these same questions below with the new postings.  An angiogram would tell all.

Jim
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lotsofkids
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Re: Diagnostic process and questions for surgeons
Reply #44 - Oct 3rd, 2006 at 9:55pm
 
I agree with katjim.......

insist on an angiogram!! if you insist...they will order it.
good luck
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Hmmm....seems I'm kinda "special" LOL
 
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simone
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Re: Diagnostic process and questions for surgeons
Reply #45 - Sep 28th, 2007 at 7:36pm
 
;;D Hello, my name is Simone. I am 28 yrs old and I found out I had MM on 2005, I had never heard of it before but becuase of this web-site I know alot. DJ you have helped me out alot. I will be going for my surgery in a couple of weeks and I am so scared and nerves. But I just wanted to thank for all that you have done. ;;D ;;D ;;D ;;D ;;D ;;D ;;D

Simone
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Simone Cooper
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Re: Diagnostic process and questions for surgeons
Reply #46 - May 24th, 2008 at 9:07pm
 
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? 
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julia

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Re: Diagnostic process and questions for surgeons
Reply #47 - Sep 13th, 2008 at 5:13am
 
i just have a question for a surgeon i had a surgery for moya moya when i was just 3 and it was unsuccesfull i still have strokes every few years and i was wondering if having another surgery would do any good
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Mar
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Re: Diagnostic process and questions for surgeons
Reply #48 - Sep 13th, 2008 at 8:52am
 
Itís 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
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Re: Diagnostic process and questions for surgeons
Reply #49 - Sep 25th, 2008 at 11:29pm
 
I have to say all this information is wonderful.   My son not only has MM but also cerbral palsy - because of this he will need a lot of surgeries down the line.  In fact, last December, (before he was officially diagnosed with MM) he had major hip surgery which took almost 4 hrs.  He was not doing to well the first day (lost blood) but I thank God we did not lose him to a stroke because of the moyamoya.  I am sure he had it at this time becuase the previous year he had an MRI / MRA done of the brain and showed some thinning of the blood vessels and carotid artery but no one knew what it was.  Although I am not happy with the dx, but sure am glad I know have information to help doctors in the future!

Thanks All and especially DJ for beginning this website.

Linda
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