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Rena

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Hi, My son Tyler was diagnosed
with MM in 2003

Posts: 467
, Colorado, USA
Gender: female

Not sure what is happening...
Oct 22^nd, 2010 at 3:47pm

My son Tyler was diagnosed with MM Feb 2003. He had the STA surgery by Dr. Steinburg, (sorry if i misspelled his name) June 2003. He then had a few seizures til around Sept. 2003, we found that blowing was causing them.

Tyler is now experiencing loss of feeling and use of his limbs. So far he has lost the use and feeling in his right leg 4 times and just the use once. He has lost movement in his left foot twice. His right hand has been affected twice with loss of movement and use of his fingers, he was still able to move his thumb. Once his left hand seemed weaker also, but that is hard to gauge since his left hand is affected by his stroke when he was 11.

He also has moments of confusion, and can no longer go anywhere alone, since he forgot his way home from school once. Tyler is 19 and has been walking home from school for over a year. The neurologist here are confused, since he is affected on both sides of his body at different times, sometimes both legs were affected at the same time.

Has anyone had any of these symptoms? Undecided

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I've learned to never underestimate the impossible. -Blake Sheldon-&&There are no failures, just options tried. -Thomas Edison-&&

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dmm

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I Love MM.com!

Posts: 36

Re: Not sure what is happening...
Reply #1 - Oct 23^rd, 2010 at 6:52am

My daughter (18) has unilateral moyamoya and had a left STA-MCA bypass done June 2009.
She has had similar problems as your son.
Between Christmas and April she had four episodes, first was movement in right leg,then right arm and leg, then right arm and lastly speech, right arm and leg. Each time it has taken longer for movement to return, up to a week. Her speech returned after 12 hours.
Then three weeks ago she lost movement in her left side. This was the first time her left side had been affected.
This week she collapsed and hit her head on the tiles, then lost movement in her right side. Her speech was also affected. She appeared dazed and confused. Not sure if that had something to do with the fall.
Each time she has experienced a severe headache prior to the episodes. Everytime the MRI's have been clear and the doctors can't explain what caused them. The doctors think they may have been caused by stress or complex migraines. I asked local doctors if it could be seizures. They didn't think it was but did say they could do an EEG to check but discharged her before doing it.
We too are looking for answers and would like to hear from others who have had these issues. Or have any suggestions.

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twinsmom Experienced Poster Offline 16 year old twins with MM Posts: 128 hollis, USA, NH, New_Hampshire Gender:	Re: Not sure what is happening... Reply #2 - Oct 24^th, 2010 at 2:36pm Rena, Have you called Dr. Steinberg? I think that would be my next move, if my daughters were having those symptoms. Sorry not to be of more help. Good luck, we'll be thinking of you!! Kristen
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dmm New Poster Offline I Love MM.com! Posts: 36	Re: Not sure what is happening... Reply #3 - Oct 25^th, 2010 at 5:38am Unfortunately here in Australia we do not have anyone who specialises in Moyamoya. I have sent an email to Dr Steinberg and am waiting for a reply.
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Rena

Senior Poster

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Hi, My son Tyler was diagnosed
with MM in 2003

Posts: 467
, Colorado, USA
Gender: female

Re: Not sure what is happening...
Reply #4 - Oct 25^th, 2010 at 2:41pm

DMM
They did put Tyler on seizure meds, since at the beginning they thought he was experiencing Todd's Paralysis after a seizure. However, when his "episodes" started affecting both sides and different limbs they ruled that out. With Tyler each episode is shorter. His first one was 12 hours and if it is the first time for a limb it is up to 9 hours, if the limb has been affected before it is usually 2 hours now.

He does have an appointment with a neurologist here. I just wanted to get him with his own neurologist, so if needed it would be easier to communicate with Dr. Steinberg. The ER neurologist are great here, but only follow Tyler is I have to keep taking him to the ER. We are relatively new to this location, hence Tyler not already being followed here.

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I've learned to never underestimate the impossible. -Blake Sheldon-&&There are no failures, just options tried. -Thomas Edison-&&

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Rena

Senior Poster

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Hi, My son Tyler was diagnosed
with MM in 2003

Posts: 467
, Colorado, USA
Gender: female

Re: Not sure what is happening...
Reply #5 - Oct 27^th, 2010 at 7:17pm

Just met Tyler's new neurologist today. We know how rare it is to have MM. Can anyone tell me the chances that the neurologist Tyler gets sent to actually assisted Dr. Steinberg with preforming STA bypasses in 2003!

Had Tyler had his surgery in July 2003 instead of June 2003 this neurologist would have seen it happen! Grin

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I've learned to never underestimate the impossible. -Blake Sheldon-&&There are no failures, just options tried. -Thomas Edison-&&

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Mar

Ex Member

Re: Not sure what is happening...
Reply #6 - Oct 28^th, 2010 at 12:34am

dmm wrote on Oct 25^th, 2010 at 5:38am:

Unfortunately here in Australia we do not have anyone who specialises in Moyamoya. I have sent an email to Dr Steinberg and am waiting for a reply.

Hi DMM,

I can't say whether Prof Marcus Stoodley, in Sydney Australia, is a MM specialist or not, but many MM members here from Australia, have spoken very highly of him concerning his MM knowledge and experience and said he really knows his stuff. Have you tried to contact him?

Incase you haven't seen the thread about him in the Surgeons with Bypass Experience
section, here it is:
http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1181213093

I also noticed in one of your other posts that you asked to be directed to a website for more info, and I just wanted to say, IMO, there is no site out there with as much MM info as this one. Look up in the right hand corner under Links
. There is a wealth of MM knowledge here.

Rena,

I'm so sorry to hear Tyler is having problems. I hope you get some answers. Keeping you all in my thoughts and prayers. Smiley

Mar

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Rena Senior Poster Offline Hi, My son Tyler was diagnosed with MM in 2003 Posts: 467 , Colorado, USA Gender:	Re: Not sure what is happening... Reply #7 - Nov 9^th, 2010 at 5:09pm It's not his MM. His angio showed good collateral blood flow. Now to find out what is going on...
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Rena

Senior Poster

Offline

Hi, My son Tyler was diagnosed
with MM in 2003

Posts: 467
, Colorado, USA
Gender: female

Re: Not sure what is happening...
Reply #8 - Dec 11^th, 2010 at 4:11am

Tyler's episodes have stopped. We never did find out what was causing them. The only thing the doctor thought might be the problem was stress. He thinks Tyler was worried about the TIA he experienced on July 31st and was stressing there was a problem with his MM. Once all test were ran and we found out the surgery areas were working well his worries were put to rest and the episodes stopped.

We know what caused the TIA, Tyler had been off his aspirin for a surgery he was scheduled for and went to an outdoors concert. Just a bad combination of MM and being a Teen! At least Tyler is more aware of his needs to stay well hydrated and on aspirin now.

Oh and one good thing that seems to have come from this: Tyler's writing level has increased by 3 years! Not sure if the episodes have reconnected something or not, but this is a great thing to have just before going to college!

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I've learned to never underestimate the impossible. -Blake Sheldon-&&There are no failures, just options tried. -Thomas Edison-&&

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DFior

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I Love MM.com!

Posts: 22
Long Island NY
Gender: female

Re: Not sure what is happening...
Reply #9 - Jan 10^th, 2011 at 9:46pm

I think our children must have a deal to anxiety when they are experiencing these symptoms. I believe my granddaughter is very anxious and afraid especially when she has episodes. I want her to have some counseling but we need to find one that takes her insurance and we will have a $60 copay. We will do it. I can't imagine what she is thinking as this has been so scarey for us all and she is only 9 yrs. old.

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