Hi Emily!

Just wanted to share "bloodthinnershots" with you.
I have a nine year old daughter Louise who had her indirect bypass - doblesided surgery in Sweden nearly three years ago by surgeons never having to deal with MM before. They actually had to redo some of their medical studies to be able to diagnose the disease.  Thanks to Dr Scott and quite a lot of communication between Sweden and Dr Scott they did an (as I hope) successful surgery on Louise and today she is doing fine most of the time. She was lucky enough to get help before her numerous strokes (small ones that we didn´t even notice) caused her permanent damage.

Now I am getting to my point: She was on shots of bloodthinners for almost 2,5 years before they put her over on aspirin. Every day she gave herself these shots and was feeling very well on them. The doctors wanted her to be really stable after the surgeries before putting the shots out. A couple of their reasons was that the medicine stays in your system for a much shorter time (it´s totaly out of it in 72 hours have I been told) and the risk of bleeding is smaller. Also it is a much more "potent" medicine meaning makes a better job than ordinary aspirin or Plavix. It´s really more effective in increasing the bloodflow as I have been told. When she stopped taking the shots she started loosing hair and her headaches increased for a while, but that is getting better as time goes. Louise wanted to stay on shots(made her feel safer) but longtime treatment can damage your skeleton and we certainly didn´t want that.
Many good luck wishes to you and don´t be afraid of the shots, you will learn to give them to yourself in no time

Take care

Annica and Louise

by the way, just wanted to add that i am feeling FANTASTIC this week, i dunno if it's that these shots are acting faster and/or that i'm having them in the morning (rather than at night) but i have so much more energy and am actually making it through the day, even to late night feeling super-fine!
unfortunately i seem to have contracted a damn cold and surgery in less than a week! so am loading up on the strepsils, vitamin c (not sure if i'm allowed to have it yet), various herbal teas and i better go away in the next few days!! grrrr

Thanks for DJ and ever one for providing the valuable information at this forum.

My daughter has been symptoms of headache for about 4 years(about once ever 2 months). She is 10 now. She got diagnosis with MM half year ago. Her right side the brain base blood vessel got completely blocked and the other side got partial blocked. We came back checked with MRI again that there is not much changed comparing 6 months ago.

Our pediatric neuro doctor said it is not rare disease for him. He has handled it before and followed a group of 10 MM children. He said that my daughter's current condition is not need for surgeon treatment. Contrary to the messages here, he said there may not need surgeon MM disease; many people walking streets may have mm, but no one knows until they develop the symptoms. She will need the surgeon treatment if the condition is getting worsen. From what he described the surgeon treatment, I think it is EMS.

I try to find out as much as information as possible about the MM and the right doctor. I found the following in the web: http://www.kidsneurosurgery.net/index.html at Children's Hospital in Birmingham, AL:
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Moyamoya is Japanese for “puff of smoke”.  The appearance of the abnormal blood vessels on angiograms  (special x-ray of the brain’s blood vessels) in people with this disease indeed can look like a puff of smoke.  These abnormal vessels are an attempt by the brain to grow new vessels to supply parts of the brain that cannot get enough blood flow.  The reason the blood flow is reduced is because the arteries supplying the brain close off at the base of the skull in this disease process. This happens gradually. Often times, we cannot find a cause for this though it does occur in association with neurofibromatosis, sickle cell anemia, Down syndrome, and following radiation for brain tumors. Most children with Moyamoya will seek medical attention because of stroke (either permanent or temporary). Other reasons for seeking medical attention are bleeding into the brain and headache.  The body does an amazing job of forming new channels for the blood to resupply the brain in this disease. Often times however, the body cannot make the new channels fast enough and strokes begin to occur. In these situations surgery may be offered to “speed up” the body’s ability to make new channels. The most common procedure we perform is taking an artery that runs from just in front of the ear and up across the temple on the outside of the skull and transferring to inside the skull, and actually sewing it to the brain. This provides a place from which new vessels can quickly grow to begin supplying the brain with blood flow. We usually repeat the angiogram (special x-ray of the brain’s blood vessels) about 6 months after the surgery.
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It seems to me it offers a different approach, that no one mentioned in this board: the bypass does not required to connect to another blood vessel inside the brain like  STA-MCA instead shifting a section of artery from outside to inside of the skull.

My questions:

1. Can any one here share the experience or results with Children's Hospital in Birmingham?

2. What are the results and side effects of EMS?

3. If my daughter has to wait until worse to have the EMS treatment, is it fast enough to fix the problem? Understand the EMS may take 6 months to have enough blood vessels around the area.

4. Any MM expertise Neurosurgeon around New Orleans area?

Worrydad,

I was also told to "wait" until I had another stroke by my local neurosurgeon who thot it better to have another stroke than go thru the surgeries.  I TOTALLY DISAGREE!!!

Thank you very much for your quick responses, I will contact  Dr. Steinberg for the 2nd  opinion once I can collect the MRI film next week.

I have the some concern that I don't have any options once the my daughter's condition is getting worse suddenly.

worrydad wrote on Jan 18^th, 2006 at 10:19pm:
Hi Worrydad,

I definitely see your concern, but I just have to say, that IF something can be done for your daughter, Dr. Steinberg will find a way to do it. He’s a genius when it comes to this disease, and has saved many lives when no other surgeon would touch them. You are very wise, (IMO) to get a second opinion from the best.

My continued thoughts and prayers…

Mar

Worrydad,

I also forgot to mention...although I'm not a patient of his, Dr. Michael Scott in Boston "specializes in the pediatric treatment of Moyamoya," so he would be someone to consider seeking an opinion from too.

You can find more info on the "Surgeons with Bypass Experience" thread.  This is what DJ posted under Dr.Michael Scott:

Quote:


Many here are a testimony of Dr. Steinberg and his God given talents.  In fact, Claire recently had her surgery from Dr. Steinberg, and if I'm not mistaken, she's around 10 years old too!  ;

Of course, we're all partial to our own neurosurgeon who individually gave us a new lease on life, so I also would like to offer you my neurosurgeon, Dr. Takanori Fukushima in North Carolina.  ;

As I mentioned earlier, go through the Surgeons...thread for more info on other great neurosurgeons, but just remember to ask them how many cases of MM patients they have successfully seen.  As you know, this disease is rare, but we are slowly getting out there. 



The main thing, Worrydad, is that you seek the advice of a MM expert, and that you do not "sit and wait".  Please, please, please seek additional opinions asap.  Oh, and one last thing..don't forget, we're here for you!  

Take care,
Shan

Hi worrydad,

My daughter Emmily (who is now 11) was diagnosed at the age of 3.  We live in Dallas, TX and we trusted the Neurologist.  Their comment to us was, "if you take her to a Neurosurgeon, they will do surgery, because that is what they do".  They convince us that the progression was so slow that she was able to compensate by creating new vessels.  Emmily developed slower than most kids and we did our best, however, I started researching and watching online and everything seem to point to surgery and also to Dr. Scott and Dr. Steinberg.  Emmily went for a routine MRI/MRA when she was 7 and we were told at that point that not only were both her internal carotid arteries almost completely occluded, her vetebral arteries were now involved and they too were almost completely occluded and that surgery would need to be done asap.  I contacted both doctors and sent records, Dr. Scott was the first to respond.  We took her to Boston in November of 2001 for the first surgery on the left side (this was the most starved area).  Everything appeared to go great and we returned to Dallas a week later.  The next morning when Emmily got up, her speech was very slow and she could not use the left side of her body.  Needless to say she had a stroke during the night.  From this, she still had deficits, she was left handed so it has been difficult.  She also lost the left half of her vision field.  She had her second surgery in March of 2004 and she has made leaps and bounds since then.  We do stand a chance at a thrid surgery, but Dr. Scott is not ready to proceed if the blood flow that she is currently getting stays sufficient.

Anyway to make a long story short, I question myself everyday if she might have less issues if we had taken her to a surgeon right away upon diagnosis.  I would highly recommend 2nd, 3rd opinions.

Dr. Scott is wonderful and to this day I can email him and get a response with in 24 hours.  Emmily loves him, he is so good with the kids and his staff is fabulous!!

I know the word surgery is scary, but it is what has kept my daughter with me.  She is a happy, 11 year old!

Good luck in your process!!  This website is fabulous and I have just now become active on it!!  Please feel free to let me know if I can give you any more info!

Rox

Dear Laura -

I am so sorry that you have been through so much trauma !  Please know that you are on my heart. 

Hugs    and prayers,

Cass in Texas 

cass/kate wrote on Feb 3^rd, 2006 at 3:02pm:

I made it through surgery ok,,but now i have the speech problems that i never had before the 7 strokes. They did the EDAS procedure because of my arteries not being there and some were tiny and didn't grow as I did.and that was the only choices they had in procedure's I'm hoping it works. But i won't have it done again when  being Half Past Dead. My skull Looks like "Train Tracks" I just want so much too get back too normal. My mom has got mine a chad's 8.5 month old taking him until I'm on the mend.A person doesn't even realize just how precious life is until they almost called you on the OR table. But since the surgery on Jan 18th (6am) my headaches have died down but still big crowds makes me nervous. But I don't reget having the surgery just I won't have it done again, that was too close for comfort being able too see the doctors as they were working on me . And  come too find out Dr. Ogilvy knows Gary Steinberg...Chad took pics of my head before and after surgery

Thanks for your helps!

I did contact Dr. Steinburg's office. After reviewing the MRI, he recommended to have both side direct by-pass treament asap.

Now I am working with the insurance company. The insurance is not covered out state treament unles the local doctors can't provide the treatments.  I tried to convince the her local doctor to present a referal letter to the insurance, but there is not any response from her doctor so far.

Hi WorryDad,

I had my surgeries at Stanford, I too, was out of state.  My health insurance, had a lot of questions for me to answer, but I told them straight.  I also explained that there are not many doctors that are familiar with MMD and I do not want to take any chances by having surgery by someone that does not know what they are doing and would rather have a specialist in this field doing my surgeries.  Their question to me was, "Why can't you get it done here?"   I asked my insurance company a couple of questions, "What would you do if you were in my shoes, would you have the surgeries here and have it done by someone that has not done many surgeries on patients with MMD and suffer another stroke or would you go to someone that has experience with MMD"  I kept pushing my insurance until the finally got the hint that I refused to have my surgeries here (oh, I live in Hawaii).  They worked something out and I was able to have my surgeries at Stanford.

Between the time I got all my films and reports to Stanford, and was scheduled for surgery and till the time I got my approval from my insurance it took approximately 1-1/2 months.  I pretty much called my insurance on a daily basis.  (I was anxious to get my surgeries done.)  I stayed in California for approx. 3 to 4 weeks (this included the pre-surgery testing and my post-surgery follow-up).  I still had to go back for my 6-month post operative follow up (I had to get re-approved). Unfortunately, when push comes to shove, I'm a real pain in the butt when it come to this kind of stuff...I will get on a person's case when it comes down to my health.  I have to be my own advocate.  No one else can do it for me.

Sorry, but I can go and on about this stuff...

Jan