I had bilateral STAMCA procedures done in Aug/Sep 2002.  Felt great the first year afterwards, but started to have recurrent symptoms.  MRI/MRA and some other type scan plus angiography confirmed the left side had occluded, and the right side is minimally patent.  Anyone else experience this?

Heide,

I read your other post in the surgeon's thread and was speechless.  :'(  However, I'm sure you are not alone and there could be many reasons for this happening.  I would also want to get other MM specialists' opinions on this matter as well, so I'd suggest sending to your films out and seeing what other specialists have to say about why your vessels have re-occluded.  [smiley=twocents.gif]

What did your neurosurgeon say?  What does he suggest?

We're praying for you Heide.  I hope you'll get some answers quickly.  I'm just so happy that you recognized the symptoms once again and sought treatment and was able to have recent tests done (MRI, angio)!  [smiley=hug.gif]

Take care...and hang in there!  
Shan

Thank you, Shan. I actually have two diagnoses: 1) moya moya and 2) lymphocytic hypophysitis.  I have to take 15 mg prednisone to keep the inflammation under control with the LH.  All of this developed approximately one year after having a pituitary adenoma removed in April 2001. I actually had to be lifeflighted from New Orleans (Tulane) to Phoenix for my STAMCA as I suffered two lacunar infarcts within a month.  I had been having excruciating headaches though for months beforehand, and each time kept getting referred to yet another neurosurgeon at Tulane.  They just kept saying it was migraines and giving me painkillers. Thankfully the last one to see me, after I described my symptoms of the headaches, the "wooshing" sound I kept hearing in my ears, the visual disturbances, the weakness/numbness in my arms especially, the doctor decided to do an MRA in addition to the MRI (had many of those, but never the MRA). This showed my occluded ICAs and the infarcts.  

The two neurosurgeons I have seen are convinced it's my LH causing the symptoms, and the way it was explained to me was that my basilar arteries had compensated for the lack of blood flow to the front of my brain for so long and had become so large, that the bypasses didn't really need to kick in? Ok, whatever, I'm not a doctor by any means, but if it wasn't helpful to have this new blood flow which apparently worked for almost a year and I felt better than I had felt in a long time, plus was almost completely off my steroids. Therefore, I am convinced, as is a rheumatologist I had seen, that it is indeed the moya moya (which incidentally I had never heard of until I went to BNI in Phoenix) that is causing most, if not all of my problems.

Needless to say, I am stressed beyond belief about where to turn! Plus I'm still dealing with the stress of being post-Hurricane Katrina as I live in Slidell which is just 30 miles north of New Orleans. Also, all of my medical records and scans are in New Orleans and Tulane and it is totally shut down, so I can't even get those right now.

This SUCKS!  >:(

If ANYONE can point me in a better direction, I am open to any suggestions.  I have tried to get in touch with Dr. Spetzler's office, he is a great surgeon, but I don't seem to ever get a response and Pheonix is a LONG way from here.

hi heide-

dr robert spetzler's info is as follows:

telephone: 602-406-3489

barrow neurological institute
st. joseph's hospital and medical center
2910 north 3rd ave
phoenix, az
85103

hope this info helps!!!!!!!

sorry heide..i didn't realize that u had your sx done by dr spetzler in the past. i thought u were asking 4 his info!!!! my bad....please disregard the last post!!!

AHHHHH Grasshoppa!  ;;D Sorry, couldn't resist, used to be a huge fan of Kung Fu in my younger days (that was a long time ago BTW) [smiley=laugh.gif]

As you can probably tell, I still have my sense of humor despite everything!

Did Dr. Spetzler do your surgery also?

:)Hello Heide!

I know you would be  better getting out information out here!

Your MM Friend
Kevin 8)

Heide,
Siri was 36 and in excellent physical condition when Dr. Spetzler did a STAMCA (left side) for her in 1999.  Although the bipass was never as "robust" as hoped, she did well for 5 years.  Then, symptoms returned, and she needed an EDAS (same side) in January 04.  So far, she's doing well - just not the 100% she hoped.  She lives in the Colorado mountains, still bikes, skiis, hikes, and chases kids 8 and 10.  She also does better if she stretches out and rests for an hour late afternoon.  
Email - eolsen6400@aol.com
Best,
Roni

Heide,
Forgot to mention that we're very sorry to learn you are dealing with the effects of Katrina along with MM.  Don't know why it's so hard to get through to Spetzler - keep pestering the office.  If you do get through to a live person, ask her/him to at least have one of the other doctors call you.  They should also have copies of your records, so be sure to tell them your current situation

Just wanted to say thank you to all who responded and your helpful suggestions.  This site is AWESOME and everyone is so helpful  :)

Heide

hi heide!

ya dr. spetzler did my 2nd surgery....i had my 1st surgery done by dr. robert breeze in denver, co. i did call dr spetzlers office and did get an actual live person on the 2nd ring!!! so please try calling the # that i left 4 u in my 1st posting!!!! good luck!!!!  :D

Heide,

I had an STA-MCA done on my right side (so far I only have unilateral MM) in Dec. 2002.  Just this April I had to have surgery done again on that side.

This surgery I had an indirect surgery AND a direct surgery on that side.  They can't do the STA-MCA again as the superficial temporal artery has already been used but they did do an OA (occipital artery)-MCA as the direct surgery.  So far so good according to my recent angio but I guess I will now always feel uneasy that this won't keep happening- the continuing occlusions and progression of MM despite surgery.  December 2002 I thought I was done, at least with that side of my brain.  

I just wanted to give you peace of mind that indeed  some form of repeat surgery is a possibility and that there is definite hope to feel better once again.

Please let me know if I can answer any specific questions about my experience or if I can help you in any way with this unexpected repeat performance of MM.  :-/

[smiley=hug.gif]Lisa

LisaH,

If you don't mind me asking, why did you have to have your surgery redone?  Did your vessels close up?  Was there clotting?  Were you experiencing symptoms again?  Sorry for the million questions. I guess this is my fear too.  I have some bp issues and was told that if my bp drops too low, my vessels could collapse.  :-[

Well, Lisa, as we all know...with anything in life, nothing is a guarantee.  I'm just glad that you were able to have your surgery re-done in a timely manner.  Did you have the same surgeon re-do your 2nd surgery?

Thank you for sharing your experience with us.  It does give hope to others who may also have to have their surgeries re-done.  You are an inspiration!  [smiley=hug.gif]

Take care,
Shan

Hi Lisa and thanks so much for posting your experience. I feel better knowing of this alternative. It is stressful when you think you have jumped one hurdle, only to have to jump it again, this I know! I am happy to hear you are having a good recovery from it, and that it continues indefinitely.

May I ask who your surgeon was?

Hi all,

Shan- There really is not a definite reason why my surgery had to be redone.  It was *probably* because the graft (the STA) was not big enough so while I had improved blood flow than before, I still wasn't getting enough blood flow.  I did feel much improvement after the first surgery but within 6 months or so started to have symptoms again which continued to get worse and worse over the next year.  I fought like a crazed person for awhile to make anyone believe me that something just wasn't right.  I hit every possible roadblock along the way- as Jill, Mar and DJ know 'cause I was always either in tears or outraged!   As we know, and should always keep in the back of our minds,  MM has no cure only treatment, so we should always be vigilant about watching for any symptoms carefully all our life.

Heide-  I had Dr. R. Loch Macdonald out of University of Chicago hospital do both surgeries, although there is a catch.   Between surgeries I went to Stanford in California TWICE to consult with Dr. Steinberg.  I guess I was hesitant to go back to University of Chicago for the second surgery because the first one failed but I found out it wasn't anything they did or didn't do, it was just a fluke.  Dr. Steinberg assured me that this didn't happen because of my surgeon and actually praises and works often with Dr. Macdonald.  I was also upset, at the time, with the attitude I was receiving at U of C, basically "you had surgery, you're fine, end of story" but once I got a new angio that showed the MM progressing they couldn't have given me more attention.  In fact, I have spoken at a doctor's conference there regarding MM and my case and they also refer new MM patients from that hospital to me for support.  

I was also highly impressed with Dr. Macdonald during my second surgery.  I was told by both Dr. Steinberg and Dr. Mac that my only option was to have the indirect surgery this time and neither was real confident that this would work for me.  They said that it tends to work out better for children as they grow new vessels better than adults.  Add to this the fact that I already had one failed surgery and it wasn't sounding all that hopeful.  As Dr. Mac wheeled me into the surgery room he mentioned that he had been mulling over my case and he was going to try and do the direct surgery again but with the occipital artery this time.  When I was in recovery and found out he did both surgeries I just cried my heart out (so did my friends and family) knowing he gave me 100%, that I now had a real chance to survive MM.  

If there is anything I can do to help you through this Heide do not hesitate to ask!  Best advice I can give you though is to not take "no" for an answer.  If anyone says nothing can be done, go elsewhere for another opinion.  

In your words- keep jumping over those hurdles!
Lisa [smiley=hug.gif]

Lisa,

Amen!  Your assertiveness, "not willing to give up" attitude and desire to move mountains is the reason, I believe, you were able to have your second surgery and are here today!  Halleluja!  ;;D  I hear you!  MM is like treading in unfamiliar territory, so I make note and report every slight change or numbness, tingling, pain, etc..but I sometimes feel they just think I am over-reacting and paranoid.  My neuro told me that tingling and pinching sensations in my hands, face, etc. are okay.  He is more concerned with numbness and weakness.  Have you or anyone else been told that? [smiley=huh.gif]

Anyway, I am pleased that you were able to seek an additional opinion (Dr. Steinberg), as in this case, it only helped put your mind at ease that it was not Dr. MacDonald's fault that you had to have your surgery re-done.  Plus, the fact that they are in touch with each other is also a plus.  I was pleased to hear that Dr. Steinberg had invited my neurosurgeon to Standford this past Spring to do lectures and Grand Rounds too.  Sharing knowlege and experiences amongst the experts will only benefit us patients!  ;;D

After doing 2 interviews on our local 5 and 6 o'clock news, I too have been speaking to others who have been recently diagnosed with MM, or who think they may have MM.  In fact, tomorrow I will be meeting with a group of medical students at my neuro's office.  I don't mind at all, for I'm hoping that the next generation of up and coming doctors will be more familar with this "rare" disease and prevent misdiagnoses, etc in the future.  ;)

As I mentioned earlier, you ARE an inspiration Lisa..that no matter what, even if we do have to have a surgery re-done, life MUST go on!  [smiley=hug.gif]

Take care,
Shan