Hi DJ,

Sorry, had to ask what a xenon scan is.  I'm looking it up as we speak.    (Just wondering if I should have one  ...) From what I'm reading, it sounds like another great way to determine blood flow.  Am I correct?  I read in your Diagnostic process and questions for surgeons thread you mentioned that it is similar to a SPECT.  

"What's very nice about xenon CT is that it not only allows us to take a picture of the brain, as a traditional CT does, but it lets us exactly quantify how much blood flow is getting to different areas of the brain, and that's really been a mystery up until now," said Susan Hickenbottom, MD, a UM assistant neurology professor who heads the UM Health System's Stroke Program.
"Thirty days after their stroke and xenon CT scan, patients will receive another scan to see which areas of the brain were affected. By comparing the original scan with the second one, the researchers will be able to tell whether the initial scans can help them predict which areas will suffer most. Eventually, studies may compare xenon CT with other imaging techniques used in stroke patients, including a form of magnetic resonance imaging (MRI) and positron emission tomography (PET)."



Pretty interesting article..also touches on TPA.   "One exciting new option is TPA, a clot-busting drug that can give many ischemic stroke patients a 30-50 percent better chance of walking away from the stroke unharmed."  Then again, this may only pertain to regular type strokes and not specifically those associated with MM disease.  Nonetheless, quite interesting to read.  

Aloha,
Shan

Hi DJ

Wish we could meet up with you in October at Stanford. However, we won't be there at that time.

Kevin (Cubbie) will be going to Stanford for follow-up in November or perhaps early December.

Kevin loves the Xenon gas!  What's up with that?  Everyone else can't stand it!  Kevin hopes the machine actually breaks so he can have multiple doses of Xenon gas.  He cracks me up!  What a comedian!

Layin all jokes aside, Kevin is actually looking forward to returning to Stanford to see Teresa and Dr. Steinberg as well as Joanne "the doppler lady" and the nurses who took care of him.

Best wishes for a continued positive outcome.   Let us know your test results.

Hugs,

Lore and Kevin (Cubbie)

Hi Jill!

I believe that Xenon gas thing is a "quick" high.  Shoot,
just   lol It's got to cost less than the Xenon gas for a "cheap" high    

Yes, we should plan to get together when we return to Stanford.  It would be nice if we could coordinate all the May surgeries since we all (including family members) spent so much time together.  I know Irene had her surgery in June but would like to see her if she can make it when we return for follow-up. That would be so It would really be great to see everyone again and party

I'll have a better idea of when Kevin will return to Stanford after he sees his local doc on October 6th. He had to get the approval from insurance to let Kevin go back to Stanford for follow-up. Go figure! This insurance stuff makes me lol

We'll talk soon.

Hugs,

Lore

DJ,

Me again.  I had an appointment today with my neuro, so I inquired about a Xenan Ct Scan.  Boy does he wonder where do I get all this info?  (The last appointment, I asked about Trileptal and Keppra).  Anyway, he said unfortunately, we DON'T have a Xenan CT Scan here in Hawaii!  Oh brother!  I guess it makes sense though.  If they couldn't find anyone who could perform my surgery, then why would they have such a machine here, right?

Oh well...I'll inquire about having one when I go to North Carolina next March/April for my 1 year follow-up.

Take care,
Shan

Hi Michelle,

Just wonderin'..has Eddie done any other type of annual follow-ups tests since his surgery in 2003?  I was trying to find out too if there is a like are 'standard' follow-up procedures/guideline.  For example, I've come to the conclusion that everyone has an angiogram anywhere between 3 and 12 months post-op.  I know that there may not be that much reserach or studies here in America regarding this disease, so there may not be any real solid guidelines (like they do for heart disease, etc.).  

I'm just bummed we don't even have a Xenon CT scan in my state!

Take care,
Shan

Chelsie...like Bob Barker says "come on down!"  We'd love to have you, and everyone else here come and visit us in Hawaii!  ; Lots of sand, sunny weather, luaus, Hawaiian brewd beer for Lore, and NO Xenan CT Scans, snakes, squirrels, etc...
(I actually tried to spot a live squirrel in NC, but didn't  )

ALOHA!,
Shan

Mandy went back in 5 or 6 months for her follow up and Dr. Steinberg said the same thing she doesn't need to go back unless there is a problem. D.J. goes every year probably because he can and wants to, its your choice. If we want to take Mandy each year we can they told us. The xenox machine is not in very many places or hospitals its fairly new. They said it isn't worth putting people through something thats as invasive as an angio unless there were problems.
                                  Nancy