First off I want to thank everyone on this forum.  This is the first time I've posted here, but the information and support you have all given here has been invaluable since my fiancee's dx last year.

She was diagnosed in May last year and (finally!) had EDAS surgery on her left side at the end of September here in Los Angeles.  The surgery and surgical follow up has gone along similar lines to many of the other stories here.  The surgeon and his staff have been very helpful and the post surgery testing is progressing on schedule. The neurosurgeon has said we only need to see him again if something happens or the neurologist thinks another surgical consult is needed.  (So far the medical opinions are that she doesn't need the surgery on the right side, but after reading some more on this board we're going to start asking some firmer questions about that!)

The Neurologist, however, is proving hard to get to see!  We were referred to him pre surgery because he is an expert in Moya Moya, carrying out research and lecturing on the medical circuit.  Unfortunately he seems to spend more time doing this than actually treating patients!  The first time we saw him post surgery was at about 8 weeks out, then his office have been re-scheduling us since January for the next appointment (we're finally seeing him tomorrow).  This has been frustrating and worrying to say the least.  My fiancee has been having many ongoing symptoms, both neurological and otherwise, and her primary care physician is (by her own admission) not qualified to help her.

What are other people's experiences post surgery?  Who has been doing the follow up and how often?  Who's been in charge of rehab from surgery and also from stroke damage?  We've heard from a couple of other institutions that their follow up to EDAS would be weekly appointments with the neurologist, dropping to monthly when symptoms start to subside then gradually getting less frequent the further away from surgery (assuming everything went OK).  Is this the kind of thing other people have experienced?

There have been so many dropped balls since the dx last year and particularly since surgery.  No one doctor seems willing or able to take overall charge of my fiancee's recovery, so she seems to be missing out on vital time.  I know the EDAS proceedure takes time to show results, but between the surgery itself and the strokes and TIAs she's suffered both pre and post surgery, there seem to be more questions than answers and more set backs than progress right now.  We're nearly six months out and some of her symptoms are worse now than they were prior to surgery.  We've finally made the decision that we need to make changes to her medical team, but I would appreciate feedback on what other people's experience has been as I have no idea if this is normal or not!

Thanks

Ted

Hi Ted, welcome you to MM family , this site is wonderful and it help me alot.
I can't tell how doctors do with their follow up but I can tell you with my doctors. I have my 1st surgery on Jan, 2006, postop after 6 weeks with neurosurgeon, and then go back to my home town to see neurologist after that, then schedule to goback in 3 months.  I was very sick too, my headache worst and I have total 10 trips to ER and 2 hospitalize, when I in hos. and every time in ER my neurologist would come and see me, but not in his office because they books.
I came back to see my neurosurgeon for 6 months post op that when he make decicion for 2nd surgery schedule on Nov 17,2006, and then come back for 6 wks post op after that and he tell me if there are not thing wrong I will see him in 1 year for an angigram(spell?). And ofcouse see neurologist every 3 months. ::).  Even I don't seeing them but I can call their office anytime if I have problem or question, so if your fiance feel sick I would give doctor a call and tell them your concern.  Sorry that not much help, and hope she feel better, if she need some one to talk to I'm here,  you can send me PM.

Take care
Kieu

Hi Ted,
I had both my STA-MCA bypasses in Australia, and I was having to see the neurologist and neurosurgeon regularly after both ops. It then dropped to six monthly and I decided to see my neurosurgeon in preference to my neurologist, but now do not need to see either of them unless I experience anything unusual. I had my ops 5 and a half years ago. Also your question on the excercise post - I have not had my weight affected by MM - I have actually lost weight,  (size 2) but I do hit the gym hard and heavy!!

I am glad that you are following up getting your fiancees other side done, as we were told the same thing that I didn't need my other side done yet, however my neurosurgeon did advise us to get it done ASAP just to get it all over and done with, and found that it was justified as the other side was worse than my original side!!
Best of luck Moira

i guess everyone's situations all depends on how they react.  for me i went 1 wk after and then now 6wks to my neurosugeon. and will only be using the neurosurgeon because i don't like any of the neurologist here and he's cool with me just seeing the neurosurgeon.  not sure when the next time i'll need to c him, all depends on how i react and respond.  so if your fiance is con't to have problems i'd get a appt and let them know that she is having increasing problem, sometime the drs office will make time to see her.  also i'd have the other side done before anything else happens, like moira said, preventative and recovery will be much faster.  

As everyone else has said - it all depends on the patient and the doctor.  I had my 6-week post-op appointment (I had both surgeries a week apart) and then my one year angio.  At my one year my surgeon, Dr. Scott, was very happy with the results and told me I dont need to come back unless I start to become symptomatic again.  I do follow up with emails to Dr. Scott once a year - just to check in and tell him how I'm doing.  But I haven't been back to a neuro since then.

If your fiancee is having symptoms, absolutely, see her neuro.  This could be a sign that she needs the second surgery - but, of course, I'm not a doctor.

I think you are handeling this appropriatly - be your own (or your fiancee's) advocate and arm yourself with knowledge!

-Shari

If her symptoms are getting worse, I would definitely try to get her in right away. If you advise the dr's office of her status, can they somehow "squeeze" her in to see her?  If not, then, I'd start to look for an "alternate" route.  I know MM specialists are hard to find. (Trust me, I live on an island, and sometimes feel like my hands are tied when it comes to medical care).

I had my surgery done on the mainland in North Carolina and didn't return home until about 14 days post op.  My neurologist followed me during my post-op period during those days.  Upon my return home, I followed up with my neurologist within 2 days, and saw him 1 a week for a couple of weeks, then gradually it went to every 2 weeks, etc.... (I had a double by-pass and an in-direct surgery, so I'm not sure if that's why they followed me very closely.  I also was pre-symptomatic before surgery.  Thank God I haven't had any symptoms since.)

I also had MRI/MRA's within the year, and at 18 months post-op, I had an angiogram.  I'm almost at my 2 year anniversary mark (March 27, 2007), and I've been advised by my "local" neurosurgeon that I should have either a SPECT or PET scan done (none of which I've had before  :-/)

I think we've all had different follow-up depending not only on our doctors, but also depending on our symptoms.

I think that from what you explained above, she should definitely seek advice from her neurologist.  I hope they can take her asap! >:(

That's just my  [smiley=twocents.gif].  I hope your fiancee is able to get the medical attention she needs soon! She'll be in my thoughts and prayers...

Aloha,
Shan