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Moyamoya.com Forum › Moyamoya Related Topics › Moyamoya Related Information and Support › Diagnosed in NC

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Diagnosed in NC (Read 3827 times)

JeepNerd

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http://moyamoya info.blogspot.c
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Posts: 21
Kernersville, USA, usa, NC, North_Carolina
Gender: male

Diagnosed in NC
Jun 18^th, 2008 at 9:52am

Just wanted to send up an initial posting here where I can communicate about MM.

My wife was diagnosed last week and she is now going thru rehab and expected to have a 100% recovery from her strokes. (Right arm / leg effected)

She is at Forsyth Hospital in Winston-Salem, NC and Dr. Don Heck is her Interventional Neuroradioligist.

Currently her blockage is on the cartorid artery coming in the left side brain, and is very near a major intersection. There is a 95%+ blockage.

Doing the stint has been ruled out since it is too close to the intersection (and brain is feeding itself thru that) and they are concerned the stint would cause further inflammation in that area and cause a major stroke.

They did another MRI, this time with dye, and the brain is currently being profusted at a sufficient level, so they are not pursuing one of the other surguries mentioned here.

She is on Plavix (blood thinner) and they will be following up and watching the situation and blood flow. So right now her treatment is blood thinner and rehab to recover from the stroke.

Will fill in more later, just wanted to get this started, and a HUGE THANKS for having this site here when we needed it. Our family has been able to come in here and refer/read up and that has been a blessing.

http://moyamoyainfo.blogspot.com/

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JeepNerd

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Posts: 21
Kernersville, USA, usa, NC, North_Carolina
Gender: male

Re: Diagnosed in NC
Reply #1 - Jun 18^th, 2008 at 12:55pm

Just a few more thoughts as I read thru the info etc. Dr Heck did review her case with the folks at the Moyamoya clinic and agreed with his plan of action. (and to not do the stint)

Reading thru this I am suspecting we will end up doing the surgury at some point for the bypass and Dr Heck has performed this previously. I have not seen his name on here, but I understand he is getting folks referred to him in this area and he sees 3-4 MM cases per year.

I was wondering what (if anything) we know about long term situation with MMD. I saw that according to NIH a "majority" of folks with the surgury do not have strokes again afterwards. (And without surgury a majority of them do...)

Emily is also diabetic, high blood pressure and high cholesterol and so she has more complications than usual. I assumed MM was part of those but it appears they are unrelated.

Thanks for listening, looking fwd to learning more and being prepared.

http://moyamoyainfo.blogspot.com/

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Mar

Ex Member

Re: Diagnosed in NC
Reply #2 - Jun 18^th, 2008 at 1:12pm

JeepNerd wrote on Jun 18^th, 2008 at 9:52am:

They did another MRI, this time with dye, and the brain is currently being profusted at a sufficient level, so they are not pursuing one of the other surguries mentioned here.

Hi, Welcome to our MM family!

I hope your wife’s doctors have alot of MM experience because your wife’s life may depend upon it. This is a progressive disease. Just because they say, “her brain is currently being profused at a sufficient level” does not mean she doesn’t need surgery or that she is not in danger of another serious stroke or hemorrhage at any time. With MMD, when your brain does not get the proper blood, oxygen and nutrients it needs, it grows it’s own vessels (Collaterals, the puff of smoke) to try and help with the blood supply, but even though those collaterals are helping supply blood to her brain, those collaterals are ABNORMAL “MM vessels”. They are weak and fragile vessels and can rupture at any time and cause a hemorrhage or stroke. Those collaterals are simply not equipped to deliver the volume of blood needed over a long period of time. That’s why all MM patients are at risk of a stroke without surgical intervention. No medications can stop the arterial “narrowing” process from progressing or the MM vessels from developing, so there lies the danger.

I don’t know your wife’s specifics; all I know is the lack of experience with MMD we see all to often in the medical community. We’ve seen many neuro’s go with the “wait and see” approach because their patient had sufficient blood flow, only to eventually have a serious stroke or even death. Waiting with no surgical intervention is always risky. That’s why we always advise new members to get a second opinion. It’s very wise when dealing with a rare disease. It’s also good to learn all you can about MM so no one can steer you in the wrong direction.

This is a very treatable disease with an excellent long term outlook with an experienced MM neurosurgeon.

My continued thoughts and prayers

Mar

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Janko

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Take baby steps...one
step in front of the
other!!

Posts: 209
Kekaha, USA, usa, 326, 333, HI, Hawaii
Gender: female

Re: Diagnosed in NC
Reply #3 - Jun 18^th, 2008 at 3:04pm

Shan had her surgeries with Dr. Takanori Fukushima, here's what she sent a while back:

Shan wrote on Jul 12^th, 2005 at 12:54pm:

I am honored to be one of the many patients of the world renown Dr. Takanori Fukushima, M.D
. One neurological procedure he developed and the delicate instruments used to perform it bear his name. Called keyhole surgery, or the Fukushima dime operation, the procedure involves a five-millimeter incision at the base of the skull instead of the large, open-brain procedures that were used previously. (taken from

http://www.ia.wvu.edu/~magazine/issues/summer2004/htmlfiles/hope.html)

Dr. Fukushima is internationally renowned for his research and clinical work in the treatment of skull base tumors, pituitary tumors, cerebral aneurysms and arteriovenous malformations, trigeminal neuralgia, and hemifacial spasms. Named Honorary Professor at Karolinska Institute, Stockholm, Sweden; University of the Mediterranean, Marseille, France; and University of Berlin, Germany, he served as Professor of Neurosurgery at University of Southern California, Los Angeles and at Allegheny Neuroscience Institute, Pittsburgh, Pennsylvania.

He was formerly a Professor of Neurosurgery at the University of Southern California in Los Angeles. More recently he has served as Professor and Vice-Chair of the Department of Neurosurgery at the Allegheny Neuroscience Institute, and Director of the Center for Skull Base Surgery in Pittsburgh. This past spring, he was invited to Stanford by Dr. Steinberg to do lectures and grand rounds with their staff.

Wink

One of the World's largest experience in Skull Base Surgery.
Wink

Originator of "Keyhole" Microsurgery & Target Surgery.
Wink

Pioneer in Minimally Invasive Neurosurgery Techniques since 1968.
Wink

Developed the first flexible neuroendoscope, in 1969.
Wink

Developed the Fukushima Skull Base Carotid Bypass Surgery, since 1986.
Wink

Inventor of a variety of Fukushima Microsurgical instruments, since 1980.
Wink

Specializes in pathology of Cranial Nerves, over 6000 cases.
Wink

Skull Base Tumors over 3500 operated cases.
Wink

Transsphenoidal Pituitary Surgery over 1400 cases.
Wink

Acoustic neuromas - 850 cases, excellent Facial Nerve (98% success) and hearing preservation (70-80% success).
Wink

Extensive experience with C-P angle tumors, Craniopharyngiomas, Pineal, Jugular Foramen Tumors, and Direct Cavernous Sinus Surgery.
Wink

Cerebral Aneurysm Surgery - 1600 cases.
Wink

Keyhole Surgery to cure Hemifacial Spasm, Trigeminal Neuralgia, and Glossopharyngeal Neuralgia over 5000 operated cases with excellent results.

Dr. Fukushima is now Professor of Neurosurgery at both Duke University Medical Center, North Carolina and West Virginia University and Director of both Carolina Neuroscience Institute and International Neurosurgery Education Foundation and a consulting Professor at West Virginia University Medical Center.
He is also an honorary professor at the Karolinska Institute in Stockholm, the University of Frankfurt and the University of Marseille(see

http://www.skullbaseneurosurgery.com/fukushima.htm

)

I would highly recommend him as your neurosurgeon, or just to get his advice on your situation. While Dr. Fukushima operates at several hospitals worldwide, he has located his Neuroscience Institute in Raleigh, North Carolina. He also currently holds special operating privileges in Florida, Ohio and Pittsburgh.

Carolina Neuroscience Institute & Skull Base Surgery Center
4030 Wake Forest Rd., Suite 115
Raleigh, North Carolina 27609
USA
Phone: 919-239-0264
Fax: 919-239-0266
E-mail: fukushima@carolinaneuroscience.com

NOTE: Edited by DJ to correct the title of the post from "Dr. Nakatori Fukushima" to "Dr. Takanori Fukushima"

You might want to check this out...we have your best interest at heart.

Aloha,
Jan

Everything is not just black and white. Open your eyes, see what the world has to offer....

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JeepNerd

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Posts: 21
Kernersville, USA, usa, NC, North_Carolina
Gender: male

Re: Diagnosed in NC
Reply #4 - Jun 18^th, 2008 at 3:49pm

Thanks for the replies so far!!

Just wanted to send out a bit more info, lots of stuff jammed up in my head.

Here is a link to our Doctor (he studied at Duke Univ for MedSchool, etc) and did his fellowship at Washington Univ (they have a moyamoya center!)

http://www.forsythradiology.com/staff2dd.html

Donald V. Heck M.D.

http://www.excel-imaging.com/our-physicians/donald-v.-heck-m.d..html

He has also consulted on Emily's case with the Moyamoya Center at Washington Univ. which is where Dr Heck did his fellowship!!

They went over the scans and blood profusion rates etc and this is part of their research there with the NIH. Dr Heck (our doc) is also part of the NIH project so we feel that we are in good hands!!

By the way, he mentioned that Washington Univ DOES have some funds there for folks interested in participating in the NIH funded grant in studying moyamoya!!

Our doctor mentioned that if Emily wanted to they might fly her out there to have more tests, etc. (No funding for treatment, just for studying is how I was hearing it, we declined for now)

http://neuro.wustl.edu/patientcare/clinicalservices/moyamoyacenter.htm

Might be a good avenue though for folks who do not have the local resources!!

http://moyamoyainfo.blogspot.com/

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Mar

Ex Member

Re: Diagnosed in NC
Reply #5 - Jun 18^th, 2008 at 8:57pm

I’m compelled to comment about what I just read from the Moyamoya Center at the University of Washington in St. Louis. IMO, it seems to be extremely outdated information or something is totally wrong about the way they describe the facts of MM, because it certainly does not reflect the most recent facts about MMD from leading MM experts. This so called experienced MM center never once mentions the fact that MM is a progressive disease, which every other reliable source does. Their deceiving description of MMD is extremely misleading to new MM patients, IMO. For example, they state:
” There are surgical procedures that may improve blood flow to the brain. These procedures may cause complications, however, and may not always achieve the desired result of improving brain blood flow. Sometimes blood flow to the brain is normal despite the blockages because of connections from normal arteries that bypass the blockages. People with normal blood flow may not have anything to gain from surgery.”

Yet, -- NINDS (National Institute of Neurological disorders and strokes) state: There are several types of revascularization surgery that can restore blood flow to the brain by opening narrowed blood vessels or by bypassing blocked arteries. Children usually respond better to revascularization surgery than adults, but the majority of individuals have no further strokes or related problems after surgery. PROGNOSIS: Without surgery, the majority of individuals with Moyamoya disease will experience mental decline and multiple strokes because of the progressive narrowing of arteries. Without treatment, Moyamoya disease can be fatal as the result of intracerebral hemorrhage.

Also, Dr. Scott, Children's Hospital, Boston- a leading MM specialist states: All patients with moyamoya syndrome will develop progressive narrowing of their brain blood vessels over time, and we have never seen an exception to this rule after more than three decades of studying these patients. Along with this progressive narrowing of the brain blood vessels, the patient's clinical condition also worsens; this is why we believe that surgery to increase the brain's borderline blood supply is so important for most patients.

Those were just two sources regarding the accurate and recent facts about MMD, yet your recent post of this MM center implies a MM patient may have nothing to gain by surgery. Something is wrong with a place that states misleading facts like that. I sure hope you continue to educate yourself about this disease.

I’d also like to mention that MM is a VASCULAR disease, so I don’t understand why anyone would feel comfortable with a neuroradiologist when this disease requires a neurosurgeon with vascular specialty.

PLEASE continue to do your research, but keep in mind that prompt treatment for MM may also be required, especially with a 95% blockage. I don’t know your specific case, I’m simply going with the logic… if your wife has good blood flow, then why the strokes??

Mar

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