There is a very interesting post in todays' (6-2-05) guest book.  The post is by my friend Dana and she had her MM direct bypass surgery 11 years ago in Charlotte NC by Dr. Vanderveer.
     Some of the procedure sounds a little different such as using a leg artery rather than a scalp artery but what really interests me is how long ago this surgery was and it went without a hitch.
     This has to be one of the first MM surgeries in this country,   what do you think?

     I met Dana about 3 years ago on-line, I believe on the Harvard site, before I even knew of this site and we've become good friends.  She is really a nice person with a great attitude.
     I was curious does any one know of any MM surgeries more than 11 years old?

Tom G

Wow, Renee!  I had no idea .... you are a pioneer!   ;

Your post is actually very reassuring.  I'm glad you were able to get the surgery, and glad you are still doing well.

Jenny

Jill,

Yes, things were very different back in 1985!!!  There was no internet, never mind support groups.  My father spent many a night poring over medical journals, most of which were written in Japanese (which he could not decipher)!

Yes, I still keep in touch with Dr. Scott.  I update him every other year or so as to what's going on in my life.  Luckily, I never suffered a stroke....just thousands of TIAs. 

There is definitely hope!!!  I'm now 30, a pediatric emergency room nurse, specializing in trauma, and have a 12 year old son, who (so far!!!) is MM free.  I'm Korean, but adopted, and did not have any available family history when I was diagnosed.

If others families have any specific questions for me, feel free to send me a message!

I know that all this info can be soooo overwhelming!!!

Renee

     Great to hear of your success renee!   I feel much better seeing as how I'm having the same EDAS surgery in about a week ( sept 12 ) ;

Thanks again and take care,   Tom G.

Hi Terry!

I realize, now, that you're printing replies so that your husband can read them...so i'll answer your questions here.  Maybe another day, we'll be able to meet in the chat room!!!

I was diagnosed in 1985 at the age of nine.  My only symptoms were TIAs, I never had a stroke.  The TIAs started when I was 8, and worsened over the year till my diagnosis.  I was eventually having 2-4/day!  Initially I had a CT scan at a local community hospital, and was then told that I had to go to Boston immediately.  Dr. Scott was actually the 2nd opinion that my partents had insisted on, since the 1st neurosurgeon said that there was nothing to be done, and to "take her home and make her happy."  Dr. Scott was associated with the Floating Hospital at New England Medical Center at that time, not Boston Children's.  So in 1985, I had my 1st EDAS procedure, and then in 1986, when I started to show symptoms on the other side, I had my 2nd.  It was not common knowledge, then, to do both sides together.  I believe, that in 1985, I was the 11th case diagnosed in the United States.

Now, in 2005, I have very few lingering problems at all.  I've lived my life exactly the way I've wanted to, without limitations.  I can't exactly say at what point I've felt "safe, " since I was a child when diagnosed.  My parents were very protective after my surgeries (i.e. keeping bedtimes, staying hydrated, etc.), but as an adult, I guess I feel as "safe" as the next person.  I do suffer from migraines, but only 3-5/year.  I feel that they're preceded by a TIA, but Dr. Scott doesn't agree.  He believes that they're migraines with a "numbness" aura (hemiparesis).  I restrict my caffeine intake completely since I've noticed that it tends to aggravate them.  Definitely lack of sleep will also trigger a headache for me...but I'm always tired, since I work 7pm-7am/three days a week.  And my 12 year old son keeps me busy too!!!  The only other aspect that remains is the need to be careful with anesthesia for any future procedures...but my local hospital has an anesthesia record on me, and you just need to remind them before having any surgery to keep you CO2 levels on the higher normal side, and to be careful with blood pressure.

If you have any other questions...let me know!!

Renee

Renee,

Quick question as you mentioned blood pressure at the end of your post.  Is it true that if your pressure drops too low, the vessels (specifically the ones involved in the bypass) may collapse?  I may be undergoing a procedure in the near future, so I will definitely make it a point to stress the importance of my anethesiologist being aware of my situation.  This may sound like a dumb question, but why does the CO2 levels have to be higher?     Anyone else have insight to this?

Take care,
Shan

Hi Dewski!!!

Best of luck to you and your son next week!  You will be in my thoughts...Dr. Scott is a wonderful guy and Boston Children's is a fantastic place!  Let us know as soon as you can how you're doing.  BCH has a great website that allows families to update their child's progress, with computers all over to do the updating...just let us know, here, the right names to look up on the site!

Shan,

The connection with CO2 levels is that when you hyperventilate (either consciously, or by an anesthesiologist while your breathing is in their hands), you increase the amount of oxygen in you blood (which is beneficial to most people), but the down side for us MMers, is that you coincidentally lower you CO2 levels, which causes vasoconstriction.  Our vessels don't like that very much, lol!  It could temporarily decrease the amount of blood flow to the brain.

Renee

Hi Sara,

My question to you is the same as I had for Renee. What were your symptoms leading up to your diagnoses and after your surgery how were your headaches and how long did they last.

Also, how was your health in general? My husband is also a diabetic.

Terry

Dewski,

My heart goes out to your family...I just read this morning's post...keep your chin up!!!  ;  You're in the best of hands...and your little man is very strong.

Sara,

Just wanted to say hi!  and tell you that I'm not ingnoring you, lol!  Been working like crazy...but now going on a much needed vacation...leaving FRI for a cruise, and coming back on Oct. 1st...I'll give you a call when I get back, k?

Hope all is well with your little one, and your hubby too!!!   ;

Renee