Hi everyone.Been a long time since I have posted anything.I read postings sometimes hoping everything is fine with everyone.Jared had his surgeries n april and august 2004.Since then he has been fine.However he did on 2 occasions show signs of twiching which was diagnosed as focal seizures he was put on seizure medication.Prior to the surgery he had never had any seizures.The lastest problem though was this. On June 8th Jared myself and his sister Jessica were on our way to Vegas for a vacation.Halfway through the trip Jared has an incident .He was complaining about his ears which he alwas does when he just stared blankly his pupils became dialated he turned white as a ghost.I immediatley informed the stewardess who announced for a dr Thank God there was one on board.He examined Jared and found his pulse was very weak.He was unconsious for about a minute.We managed to land in vegas and paramedics met us at airport.He was taken to the hospial and given standard ess including a ct scan. All were found to be normal.About 3 weeks prior to our trip Jared had a spect scan and an eeg both of which were good.I thought not a good idea to fly home so we drove back.We live in ny.Since we have been back he has had an eeg that shows no seizure activity.His dr feels we should wait and see how he is for awaile before doing more tests,His medication has been increased.My question is could this be the start again of not enough blood flow or is it seizures and how to find out.Before the surgeries his main symptom was what they believed at the time to be passing out and it looked the same way to me.I just dont know where to go from here my dr will do pretty much any test I ask but I think the next one would probably be a angio and I hate to put him through that.Is there any other thest that would show blood flow better than a spect scan but not as invasive as an angio.Any suggestions?Take care everyone.                            
                                   Donna

Donna~

This all sounds unnerving.

I have no medical or experiential advice.

Just that my thoughs are with you and I hope this gets resolved soon.

Lots of LOVE,

Linda (LA)

Donna,

My hopes and prayers are with you and the family. I remember when Jared had his surgeries, Jessica and I sent a few e-mails back and forth. (I'm in Cliffside Park, NJ near the GWB).

I too would be concerned. I'm not sure who performed Jared's surgeries or who his doctors are, but  I would recommend a phone call to Dr. Randy Marshall (Neurologist) at Columbia Presbyterian in NYC. Dr. Marshall knows a ton about MM and works very closely with Dr. Connolly (Neurosurgeon). Both are wonderful...and they are close by.

I'll send you a PM with his contact information.

Good Luck,
Greg

Hi Donna,
Sorry about your son's Moya Moya.
I have Moya Moya and had an EDAS in 2000. I was given a Xenon CT  and the results are more quantitative than a SPECT. That is you get actual volume of blood per unit time measurements as opposed to a general view of deficiency. The procedure is similar to an MRA/MRI but includes breathing in Xenon gas and then the rate of depletion is measured.  HOWEVER, it seems this procedure is not widely used or accepted and I'm not sure why. I had it done at the University of Illinois Hospital in Chicago and my neurosurgeon who ordered the test was Dr. Fady Charbel.
Also, I was told that seizures are caused from activity at the surface of the brain which is why there is concern for bypass patients because as you know that is where the surgery is performed. You may want to inquire about this when you visit the doctor.
Hope all goes well.

Russ

Donna, your discription of the incident fits roberts TIA to a tee however robert never lost consiousness..........I am not sure if it is a reoccurence of low blood flow or not. I think anyone who has moyamoya may still have tia's after surgery just not as often
Mike

Not sure is this will help much, but Tammie just had her first bypass surgery Friday.  I happend to ask about one of the meds they were giving her for post op, and the nurse informed me it was for seizures, and that it was standard practice to adminster it for anyone have surgery on the brain.

Joe

I was also given meds for seizures after my surgery after two months then they took me off. I think it is a just a precauti
on in case it could happen.   Skay

Hi
   Thanks for all imput.I think my next step will be to see is we can get the nova blood flow tests done.I am going to fax info to dr tomorroow see what he knows about it and where it could be done.I n my opinion from how it looked to me I dont think i was a seizue and since in the past this was his main symptom it seems to make sense that it was more blood flow related.Will let everyone know how we made out.
                                                                    Donna

[smiley=hiya.gif]

    Hey Donna,   I was wondering what happened to you, I niss talking to you and jessica. Planning a Jersey shore get together this summer, are you game?

   One of the best tests for blood flow is the MRA with contrast and then there's the CO2 cranial doppler, both done at NY presbyterian.   The problem with these tests is that they need a previous test from 6 mos. to a year ago to compare the blood flow. ::)  

    Hope Jared is well,  say hi to jessica and stay in-touch.

    Take care  Tom G. ;)

Hi Donna,

After reading your post I immediately thought of a similar incident with my niece. It was a couple years after her surgeries and she too had never had a seizure before. (To our knowledge) Her eyes were open and dilated and she just stared blankly. We don’t think she could hear or see anything because she would not respond to anyone. She couldn't even hold up her head. Nancy said she was like a rag doll. When she eventually tried to speak her speech was slurred. She then fell asleep and woke up like nothing happened, except for the fact that she bit her tongue. It scared us to death and we thought the same thing you did, that perhaps it was a blood flow issue and a warning of a possible stroke. She went immediately to their local hospital and had the usual tests, with the exception of the angio, just the CT angio, and all were negative and showed nothing. My family was not at all comfortable with no answers as to why that happened, so they flew to CA. to see her surgeon who did her surgeries, Dr. Steinberg. He said she needed all the tests again, the SPECT, Angio, the works to get definitive answers. Long story short, all her tests came out great. In fact, her blood flow was better then it was in her last test. Dr. Steinberg said, in my words, that some MM patients are sensitive and tend to have seizures. They put her on an additional seizure medication, (I believe Carbatrol) along with adjusting her Neurontin and thank God all is well.

I told you all this in hopes that you’d feel somewhat comforted knowing that similar incidents like this can occur, yet everything may be ok with the blood flow issue. I’d still definitely follow up with the appropriate testing to be sure, but in our case it’s been almost 2 years since that seizure experience and she’s doing absolutely wonderful. I pray the same for Jared.

Please keep us posted.

Mar

Hi, Donna

How scarey for you!  I'm glad nothing has shown trouble yet, but you have to wonder what makes them have these episodes! Since no one mentioned aspirin,etc. I tho't I'd relay our experience:  Kyle was about 8 years old and 4 1/2 yrs post-stroke, EDAS (bi-lateral) when we noticed garbled speech.  He told us it had happened before and would go away in a few minutes!  (It had happened earlier at school).  He also mentioned having some vision issues.  At the time, he had been off aspirin therapy (40.5mg/day) for about 2 years.  His neurologist put him back on aspirin immediately and ordered MRI/MRA.  The tests showed no problem areas.  That was 6 years ago and he has remained on the aspirin with no other episodes.  So if Jared is not on blood thinners, maybe ask your Dr. if it might help.  Hope you get some answers!!

sue

HI
    thanks evryone for your posts.Other than the kepra Jared takes he is not on any aspirin.I have asked the dr.many times and he doesnt seem to think he needs it.I have an appt august 1 with the neuro clinic at columbia and I will ask the drs there.It is so hard trying to make the right decisions.Because of Jareds downs syndrome sometimes I dont know if he is telling me the symptons he could be havieng so its like guess work.and by the way Tom the shore sounds like fun let us know when you are plannig to go and we will try to make it.
                                            Donna

Donna, Gosh that sounds pretty scary.I know exactly what you mean about knowing if he can tell you all the symptoms he's feeling. My daughter also ahs down syndrome.she's 10, and her surgeries were 5 yrs ago.I never know exactly what's going on with her it seems to be a lot of guessing and looking to people here who can tell me how they feel and what they exoerience.This helps me to make sense of all that she goes through in a day.She survived several strokes one very severe,and has some issues that we still deal with.She's doing great,but there have been times I know something is wrong but she can't quite verbalise it.Her speech is coming along so I pray for the day she can tell me exactly how she feels.she can be crying,and still say"I'm fine".I think she thinks this is all normal because she doens't know any different.I hope you can find some answers to all of this please keep us updated. Oh yeah kathleen is on asprin everyday and I bleieve will be for the rest of her life.Many prayers for your family.
Mary Grace