Looks like I have the tentative dates for my annual follow-ups at Stanford.  I should be out there on Oct. 16th for a xenon scan on the 17th (can't wait), and an office visit with Dr. Steinberg on Oct. 24th.

If anyone gets the chance to make it out there during the same timeframe, I'd love to meet up with you!!

DJ

Hi DJ,

Sorry, had to ask what a xenon scan is.  I'm looking it up as we speak.  Do you know if this is "standard" procedure, as I see you mentioned it as "annual follow-ups?"  (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.  Do most have this done yearly?

"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)."

http://www.healthsouth.com/medinfo/home/app/frame?2=article.jsp,0,cc_stroke_stroke3

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.  [smiley=twocents.gif]

Aloha,
Shan

DJ:

I too am curious - Dr. Steinberg requires annual follow ups?  I thought he does a 3 or 6 month follow up and that's it.  

Trina

Hi DJ [smiley=hiya.gif]

Wish we could meet up with you in October at Stanford. However, we won't be there at that time. [smiley=arg.gif]

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?  [smiley=JAW_DROP.gif] Everyone else can't stand it!  Kevin hopes the machine actually breaks so he can have multiple doses of Xenon gas.  [smiley=gocrazy.gif] He cracks me up!  [smiley=crackup.gif] 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. [smiley=thumb.gif]  Let us know your test results.

Hugs,

Lore and Kevin (Cubbie)

Hey Lore,

The xenon thing has me wondering . . . most of the men seem to like it.  I remember David (from Southern Cal) saying he was anxious for his next one.  DJ can't wait for his.  That's too funny about Kevin hoping the machine will break . . . makes you wonder, doesn't it???

I'll be anxious to know Kevin's follow-up dates.  There were so many surgeries in May; maybe we'll have some kind of party or something if it turns out there will be multiple people here at the same time!  Either way, it will be great to see you guys again.

Hugs from out west,
Jill

Hi Jill!

I believe that Xenon gas thing is a "quick" high.  Shoot,
just [smiley=beer.gif]  lol It's got to cost less than the Xenon gas for a "cheap" high [smiley=crackup.gif]  

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 [smiley=cool2.gif] It would really be great to see everyone again and party [smiley=sayyes.gif]

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 [smiley=hurl.gif] lol

We'll talk soon.

Hugs,

Lore

I had the xenon test at my three month post-op and absolutly hated it. They did not get to finish the test because it kind of freaked me out but i know Dj is looking forward to it.

Christy

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

DJ,  I was curious about the xenon thing also.  I don't think we ever had that test.  Maybe Eddie will like it too.  I was also wondering about the follow up issue.  We haven't been seen by Dr. Steinberg since Aug. 03.  Does he care about you more than us? HA HA!  Is he one of your poker pals?  Let me know if you think I should look into getting Eddie seen.  Thanks, MichelleB

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

Michelle and Trina-
Dr. Steinberg told me at my 5-month follow-up that I didn't need to return unless I had problems or symptoms on the other side (I had surgery on one side only).  I do need a yearly MRI/MRA but can have that done locally and send him the results.  

Shan-
I tried a Xenon scan and couldn't tolerate it.  I was told while they love to have that imaging, it's not "mandatory" and other tests will show almost the same thing.  I wouldn't worry too much that there isn't a machine in Hawaii.  Actually, it's good incentive for me to move to Hawaii. HA!!
Chelsie

Chelsie...like Bob Barker says "come on down!"  We'd love to have you, and everyone else here come and visit us in Hawaii!  ;;D 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

I think follow-ups have to do with everyone case and how easy it is to go back to your doctor. At my three month post-op i was told i did not have to go back to Stanford to see Dr. Steinberg unless of problems because i could just send him ny test results from here. At my one year though i was doing so good and had no problems so i do not even have to have any test done at all unless once again i start showing symptoms and problems. So, i think follow-ups just depend on the person!

Christy

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