MrsDeej wrote on Sep 24^th, 2008 at 10:33am:

Amy, It's pretty much the norm for an MRI, angiogram, SPECT with and w/o diamox, probably some blood work, possibly a psych. appt. (don't worry, you're NOT crazy), and maybe a Xenon.

Did I miss something?  I wasnt told anything about any of those tests.  I mean I had the angiogram a couple of weeks ago.  Which showed that I am immediate need of the surgery which I am getting done next week (on my right side).  

Am I supposed to have those other tests first?  And if so...why arent I? Now I'm sort of worried that I'm not getting everything done that needs to be.  Can someone help please shed some light.  Thank you.

God Bless...

First off, it really depends on what your doctor has already done.  I do know that you said you already had an angio done.  Have you had any type of profusion testing?  

Dr. Steinberg is the leading expert for MM disease, and is VERY thorough.  (His standard practice if it hasn't been done prior and sent over from other physicians)

Really all I can say is that doctors have different practices.  Ultimately it's your body and if you feel confident in your surgeon, that is your decision.

God Bless...
Steph

Some people have been diagnosed Just by the angio. I am a mild case so I had to have the pleasure of having alot of tests. The most unplesent is the SPECT with and with diamox. Just be thankful you didn't have to do that!

All of us are diffrent and are at diffrent stages. My stroke was miss diagnosed and I was on blood thiners that I needed to go off of before my surgery. My surgen wanted to secedual mine right away. I was so worried I would have another stroke before my surgey. I lucked out and was fine.

I will pray for you. Wish you all the best and a speedy recovery.
Becky

Hi Fred,

I wouldn't worry too much about what tests you are being required to have compared to another patient.  As Becky said, "All of us are at different stages."  I don't believe there is a "Standard" procedure or set of rules set in stone that every patient must have the same tests pre and post op.  Many of us have had similar testing done, but, not all of us had the EXACT same tests--not even at the same time.

Some doctors may be able to diagnose a patient that has a case of the flu with only 2 symptoms--others may need the patient to present him/herself with more flu-like symptoms before making the proper diagnoses.

You will notice that all are cases are different.  Our surgeries are different (EDAS vs STA-MCA), our recovery times can be different, our pre/post symptoms can be different, and, last but least, our pre and post testing/follow-up can be different.

Please do not worry if you are not having the same tests as Amy.  The main thing is that you have been properly diagnosed and are on the right track in receiving the best care possible.  The amount of tests someone receives doesn't necessarily determine the quality of care one is receiving.  It is what their medical professional is doing with the test resuts that matters.  Of course, it's my opinion.  ;;D   As the saying goes..."Quality is better than Quantity."  ;)

Take care,
Shan

This is what I love about this website.  You ask...you get answers.  

Steph, I dont even know what a profusion test is.  So I am going to assume no.  But I do have confidence in my surgeon...be it not as much confidence as I would have in Dr. Steinberg, but I am not so fortunate as to be able to make that far to see him.  Although I do find myself blessed that I have found a surgeon that's more or less local to me with MM experience.  None the less...thank you very much for your response.  BTW..just for my own personal curiosity...what is profusion testing?

Becky, I am truly sorry that you had to go through such unpleasant things to get your diagnosis.  Although I guess I would see it as a blessing that your case was so mild.  BTW...what is a spect scan with diamox...and what makes it so unpleasant.

Shan, thank you for your encouraging words.  It helps to be given a different perspective to see things from.  In my initial post...I was just so worried that I wasnt getting all those tests done.  But as I am seeing it now...maybe I'm just lucking out.  

God bless you all.  I know that is starting to seem like a cliche saying now...but I truly do mean it.  I'd hate to think I was going through all this without this ability to come here anytime I want to get answers like I have gotten.  

I pray everyday for the people on this site and all those who have yet to find it.  (I pray even more that people wont have a reason to find it at all).  However there is the need.  And thank God above that DJ and I assume (MrsDeej) DJ's wife have made this place.  

God bless and take care all...

Fred

Fred,

Thank you for the kind words.  It is our strong belief that this website has and will continue to save lives because of the information here.  That is the goal anyway.  Getting all the right information is imperative considering many doctors are so unfamiliar with this disease.  As for your question about perfusion testing (SPECT), here is a link that explains the thorough process.  

http://www.moyamoya.com/cgi-bin/yabb/YaBB.cgi?board=news;action=display;num=1086889571

The perfusion testing show the blood flow in the brain.

Hope this helps!!