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. :D
    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? [smiley=huh.gif]

Tom G
   

Tom,

My MM surgery was 20 years ago this past March!!!  I had the EDAS by Dr. Scott in Boston.  He was associated with New England Medical Center then....not Boston Children's.  I was nine years old, and am now 30!

Renee

P.S.  I believe I was the 11th case in the country diagnosed, and the 1st surgical patient in Boston!

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

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

Jenny

Renee,

To those of us wishing that we knew someone who had their MM surgery decades ago, you've just become our pioneering hero!  I, too, didn't realize we had someone on the board who was so "experienced".  I can only imagine how frightening it must have been for your parents (not to mention you!) at the time.  I'm curious - do you keep in touch with Dr. Scott?  

Thank you for sharing, and I am very glad you're doing so well!

Warmly,
Jill  

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

Renee,
You truely are a beakon of hope and joy for me! I CAN have a full and normal life as I have been told.   ;;D

Thank youfor sharing and opening yourself for questions,
Stephanie  :D

     :DGreat 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 ) ;;D

Thanks again and take care,   Tom G. :-*

Renee,

As mentioned by others it is very encouraging to hear of one who has had this surgery so many years ago  ;;D.

I know everyone is different in their healing but I am curious how yours went since it was new at that time and so long ago.

What were your symptoms before and after? Also, in your particular case how long did it take before you felt safe again?  :-/

My husband was fortunate in that his only symptom was severe debilitating migraines. He is still having them but they are at least farther apart and Dr. Steinberg said he is out of the danger zone regarding strokes.

Since we only have access to the internet here at my work it is hard to be here on the site. I come in early and try at my lunch to check the board.

Please let us know how things were for you then and how well you are doing now.

Terry

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

Hi Renee,

Thank you for the information, I am sure it will be encouraging for my husband.

I can't remember what I mentioned before but just as a quick rundown his only symptom was severe migraines. Since the surgery they have improved but not until just this last month. He has them every 4 to 6 days and before it was every 2 to 2 and 1/2 days. So there is positive improvement.

I know he will be encouraged to know that there is hope for full recovery. I have noticed on the site that some continue to have problems  :( and I really wish there was something that would show a common thread with everyone because the experiences are all so different.

We also have been trying to cut back his caffeine intake. The doctors recommended not doing it all at once just due to the fact that his normal routine was to wake up with a Diet Pepsi/ice tea till he went to bed with a Diet Pepsi/ice tea. He only drank about 1 glass of water a day the rest was caffeine drinks!!!

As mentioned though he is down to only having it after 5:00 pm when I come home and our goal is for him to be off of it completely.

Thank you so much for your response but I must get back to work.

Since I am new to the internet, how do you work the chat room??

Terry

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?   [smiley=huh.gif]  Anyone else have insight to this? [smiley=huh.gif]

Take care,
Shan

Hi Renee,

I enjoyed reading your posts, and since we are leaving in the morning for Boston's Children Hospital, I can't think of a better post to have read!   ;;D

Our son has some pre-tests and angio tomorrow afternoon, and has his surgery next week.  He hope to be back sometime between the 24th-27th of September.

Thanks again for your posts.

-= Dewski =-

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

Hello All:

I am a bit late, but I have a very similar story to Renee... I am 24 and had my surgeries in 1989 and 1990....

I am doing well now and I was one of the first children in the Country to have surgery as well. I was the first in Houston, TX... My doctor communicated with Dr. Scott about the surgery...

If anyone has any other questions, I would love to answer them also...

Hi Renee... Call me!

Sara

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

Hi Terry:

I am not a diabetic, so I can't offer any advise on that front. But I can tell you my story. When I was 8 years old, I started having numbness in half of my body (TIA's). I also had headaches. My mom brought me to the doctor and it took almost a year for them to diagnose me, maybe longer (It seemed like forever)! It was odd to the doctors at that time because most of the cases of mm they had seen were in children with other disabilities (i.e. Downs). When I first presented, I only had symptoms on one side, but by the time I was diagnosed, the TIA's were effecting both sides of my body (although, never at the same time). I had my surgeries 6 months apart when I was 9 and 10 years old. While all of this was going on, I was so lucky because my parents let me play soccer and have a normal life. My only issues were when I would stay up too late (like at a sleep over) and when I got over hungry. Both of these things were big triggers for the TIA's. So, I was a normal kid... I just had MM...

Anyway, after I had the surgeries, the TIA's lessened significantly. They were less often, lasted a shorter time, and weren't as strong...

So, I went about normal life (good grades, dated, played sports) until 2003 when I started having some shaking in my left hand and I was getting severe migranes. So I went it to the doctor and he put me on Keppra... which helped.

I have had little or no major complications (no major strokes). I just had a baby in March and she is doing well, as I am!

I think with MM, it is very important to catch it as early as possible and have surgery as quickly as possible. Once the surgery is done, life can go on pretty much as normal. I do have low blood flow on the right side of my brain. My doc says I am stable -- Abornormally Stable!!

Anyhoo, I hope your husband has a speedy recovery and feels better everyday. I think we can be optimistic concerning him feeling "safe" again...

I hope this helps!

Sara

Dewski,

My heart goes out to your family...I just read this morning's post...keep your chin up!!!  ;;D  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!!!   ;;D

Renee

Thanks Rene!

Have a great time!!

:) Sara