Hi Terry,

What I've seen from Stanford patients is that they are usually seen for follow-up testing somewhere between 3 and 6 months after surgery.  Tara had hers at 3 1/2 months, but it seems to be more in the 5-6 month range for patients returning from out of town.

I sent you a private message a couple of days ago.  Hope you received it!  I'm sorry to hear that you guys had to come back, but glad it was just a scare.  I hope things continue to improve for Bob.  Sometimes it's a long haul . . . .

, Jill

Hi Terry,

To answer your question about follow-up testing, I too wonder when should I have what done.  Besides my recent post about a TCU, I was also wondering when others had their angiogram post-surgery.    My guess is that there must be like a guideline of somesort that MM specialists follow regarding routine follow-up procedures, but as we all know, since our cases are all different...symptoms, other health issues, geographical situations, etc., may warrant additional or more frequent testing than others.  

From what I've read and been told, angiograms usually take place 6-12 months post-op.  Usually 12 months is recommended for in-direct surgeries to allow time for regrowth.  A local neurosurgeon wanted me to have an angiogram done 6 months post-op, but I've decided to wait closer to a year (recommended by my dr that performed my surgery) since I not only had 2 direct, but 1 indirect as well.  Six months is too early to detect if any tissue/cell regrowth was successful, and I'd rather not (if not necessary) have 2 angiograms so close together.  (Personally, they terrify me!)  

I've had an MRA and CTA done post-op due to symptoms, so I'm not sure if this is routine.  I do think, though, that an EEG is routine to see if someone is having seizures...but then again, this is all my guess.  I would suggest trying to get in contact with Teresa again (or Jolie). And from what you wrote, I'd maybe even consider finding another local neuro..one that returns your phone calls!    Is this who Bob has been seeing locally post-op?

One of the best things about this site that I   is that we're able to learn more about MM by sharing our own and hearing about others' experiences!

Great post.  I hope this helped.  Remember, this is all  .  I look forward to reading others' responses as well.

Take care,
Shan

Terry,

I am sorry you haven't heard back about when to test.  Daphne had her follow-up tests last week, and her surgeries were in March (in Stanford).  They didn't schedule us until about a month before they wanted to see us, but we did at least have the guideline of September -- knowing that they wanted to see us about 6 months post-op.

Daphne had an angiogram, and two SPECTs (which is a little like an MRI, but looks at blood flow).  Since Daphne had an MRA only about 6 to 8 weeks beforehand, they opted not to repeat this test, although I think most Stanford patients also get one.  An MRA just stands for MR Angiogram... it is like an MRI, but looks at the arteries, as well as the structure of the brain.

An EEG is the test where they stick electrodes on your head, and record the electrical activity of the brain.  I don't think this is routinely done in MM patients, unless there is evidence of seizures.   My daughter has a history of seizures, and has many, many of these tests.  They are painless, but why get one if you don't need one 

I agree with Shan about finding a new local neuro.  Preferably one who has seen other MM patients.  Good luck... I hope you get some more guidance from Stanford soon.

Jenny

ooops.  I just noticed Jenny already answered your questions (in a way that is easier to understand too  ).

Thanks!  ;

Aloha,
Shan

Terry,
Hi! I am sorry to hear that you have been give so little information regarding medical procedures and follow-up dates.  If this make you feel better, Stanford had yet to schedule my post-op exam.  They told me around 6 months, so sometime in February we will be out there.  I imagine Bob is the same? But, that is just a guess!

As far as the tests go:

An MRA is done during an MRI.  It is just like an MRI except it looks at arteries instead of tissue.  So, MRIs look at tissue and MRAs look at arteries.  They usually use a contrast during an MRA and watch where the dye goes.  This helps them to be able kind of highlight the arteries, watching the dye flow through the arteries.  They often do these without the patient even knowing it has been done, while they do an MRI.

An EEG is a test done to measure the brain's electrical waves.  It can tell a doctor, as Shan said, if a person is prone to or having seizures.  I had one done after a seizure.  They stick electrodes on the patient's head and then flash lights and other things.  It is painless and boring!

A TCU is the test that Bob had done on the days following his surgeries.  Remember when the woman came by and rolled the small instrument along his incisions?  It measures the rate of blood flow thru his newly bypassed brain's vessels.

Also, Shan spoke of having an "indirect bypass".  I am not too familiar with that surgery, but I think instead of directly attaching one artery to another, they attach a piece of muscle or something that will spread "roots" and bring more blood supply to a starved brain. Bob and I had only direct bypasses. Shan should explain this later.  I do know it is a more painful surgery.

I remember the pain meds Bob was on in the hospital and I spoke with one of my doctors about it and he said it really lower the seizure threshold (make Bob more likely to have a seizure). 

It sounds like he is slowly getting better. That is wonderful! ;. Give him and yourself big hugs from me.

Glad to hear from you! 
Take care, Stephanie

Terry/Jenny:

Thanks for your question/response about when to do follow up!  I too was told that the follow up will be 6 months if you do not have major complications (they may request you to come earlier).  However, I had no idea that Jenny,you scheduled this only 1 month before hand.  Michelle said she had scheduled hers about 2 months beforehand.  I have been trying to schedule mine for November, and need to put in my request for vacation (which I have to do far in advance unfortunately).  However, it seems everyone is out or swamped!  I have been trying to get a hold of someone at Stanford who can schedule my follow ups so I can put in for my time off.  AUGH! 

Not that I am actually looking forward to the angiogram, but hey, it has to be done, right? 

Trina

Linda,

Concerning your EEG, it came out negative, but in actuality you were really having seizures? Was another test done that caught it?

Jus' wondering...
Shan

Shan,

As I thought about what I posted it did not make much sense   After my first surgery I had numbness on my right side - I used to get this when I was a kid - focal seizures they said - well on the way to the neurosurgeon I got out enough speech to tell my husband "seizure" therefor he did the EEG.

I hope this clears things up a bit!

Linda