I am sorry if this is a repeated question, but I don't have the ability to sit and read through all the wonderful posts right now, though I have been (slowly) working on it!
    I was scheduled to have my SPECT test this last week, and I did fine with the first test, but when the second day came around, by fractional chance my nurse noticed that DIAMOX is a "third-tier Sulfa Drug", which on my chart (EVERYWHERE!) is listed in BIG, BOLD letters that I am DEATHLY ALLERGIC to ANY AND ALL Sulfa drug! I was ashamed of myself that I didn't research it (the drug) better; I usually do, and when I got home and checked the list I have of meds to avoid, sure enough, only 12 entries down the list was Diamox! Thank GODS that nurse caught that, or else the MoyaMoya and the PsuedoTumor Cerebri I deal with would have been moot...I'd likely have been DEAD!  :(
  The problem now is: What to do to simulate the 2nd portion of the test without running into Sulfa drugs? The Doctor in Nuclear Medicine at the hospital I was at looked up a few possible solutions, but each one had a Sulfa in it (there are 3 "tiers" to Sulfa drugs, the 3rd being deadly to me, 2nd causing horrible rash, pain and peeling, 1st causing incredible nausea and pain).
    Does anyone happen to know of an alternative that will adequately test what the Diamox was supposed to? They are talking about possibly doing a PET/CT scan, but I am worried that it won't show the same information....
    Any help would be greatly appreciated! We're all quite confused out here...    [smiley=huh.gif]
Blessed Be,
~Jenn~

Hi Jenn,

Good to see you here on the board.  I remember our long discussions from a few months back, and hope you're doing well.

The sulfa allergy is not at all uncommon.  I've seen a number of patients (my daughter included) who have been pre-treated with I.V. benadryl prior to their spect being done.  It has worked fine for everyone I've known, but it may be that your allergy is too severe to attempt that.  Unfortunately I'm not aware of other alternatives.

Good luck, and keep us posted, o.k.?

[smiley=hug.gif] Jill

Hi~

Glad you found out about the allergies soon enough!

I too need the pretreatment that the last poster spoke of. The itching is horrible if I go w/o it.

Good luck and hope you find an alternative.

La

Hi there! Thanks LA and Gotchlorine. Unfortunately I am toxically allergic to all sulfa derivitives, so the pre-treat is not an option for me. But it's a great thing to know so I can let my doctors know for any future patients (Heaven forbid!) that they may have with MM.
I think my doctors were going to try and contact the doctor that is at Stanford that is so prominient on here...perhaps he might have some ideas! Until then, I will do as I have been for almost the last year and wait patiently!  

Blessed Be
~Jenn~

Jenn~

Do you wear a medic alert bracelet?
It could save your life.


Contacting Stanford is a good idea.
Here's the info. I'm sure your doctor has all this, but thought you might like it too.

Grary K. Steinberg, Md, PhD
Department of Neurosurgery
Stanford University Medical Center
300 Pasture Dr, room R200
Stanford, Ca 94305-5327

One of his nurses is Teresa Bell-Stephens, RN, CNRN
same address
(650) 723-5575

teresab@stanfordmed.org
tbell-stephens@stanfordmed.org

Teresa is very good at returning phone calls and emails.
If you don't already know, Stanford  has put out a GREAT booklet on moyamoya. I've been distributing them to all my doctors and anyone that wants one!!!!!

Good going!!!!!!

Linda (LA)

Hi Jenn,

I asked my Dad about this. He's Head of the Nuclear Medicine Department at the local hospital at home. He doesn't do brain perfusion scans at the local hospital but he spoke to the Radiopharmacist at the the big hospital in Cambridge, where they do.

They use Tc99m labelling HMPAO which is Hexa Methyl Propylene Amine Oxime which is a Lypophylic (Fat) agent. The trade name is Ceretec. As far as they know, this doesn't contain sulfa. This has to be injected within 30 minutes of preparation otherwise the solution will change to Hydrophilic (water) and will pass through the Blood-Brain Barrier instead of staying in the cerebral tissue.

Over here, they don't use Diamox. They encourage the patient to relax by lying them down in a dim lit room with soft music playing for 15 minutes to half an hour before injection. Apparently, the brain perfuses better this way!

Not sure if this is going to help but it might be worth mentioning, if they still want you to have a Nuclear Medicine scan done.

Best wishes,

Roz