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Message started by Emily on Oct 19th, 2005 at 7:44pm

Title: "Choosing" the right type of surgery
Post by Emily on Oct 19th, 2005 at 7:44pm
how do you know?

so far the gist i've got is this:

STA-MCA - direct bypass from outside skull to inside

EDAS - indirect bypass -> arteries are laid on the surface of the brain and left to grow

EMS - indirect bypass -> muscle (and it's bloody supply) is laid down on the surface of the brain and left to grow

i can't remember the names but i've got one (left) completely closed, one on the right almost completely closed and a third (where?) not doing too well.....
people say make sure you have the right surgery for your case but how do you know?

Title: Re: "Choosing" the right type of surgery
Post by Shan on Oct 19th, 2005 at 8:06pm
Hi Emily,

I know it may be difficult to remember and understand the options available to you.  My suggestion, which I'm sure you've heard or read many times before, is to seek the advice from a MM specialist who can offer their advice on which surgery is best suited for your needs.  I, personally, had a double direct STA-MCA bypass, as well as an indirect on my right side.  So therefore, you may even have the need to have more than one type of surgery done.  I think as with any type of procedure, even though they may go in with a gameplan, things may change once they start the operation and plans may be subject to change depending on what they see, or what happens during surgery.

My best advice would be for you to seek the advice of MM specialists (even if they are located in the U.S.) and ask them for their opinion of your situation and what type of surgery(s) they would recommend.  Then, after receiving all of their responses, you can base your decision on what to do/where to go from there.   [smiley=twocents.gif]  I know I probably didn't offer you any solid answers to your question, but I hope this helps... [smiley=hug.gif]

Take care,
Shan

Title: Re: "Choosing" the right type of surgery
Post by kotipup on Oct 19th, 2005 at 8:14pm
Emily,

An experienced MM surgeon should be able to tell you which procedure is best for you.

I think for many adults, STA-MCA is usually the ideal, because it delivers immediate blood flow, and adults may not grow in new vessells as quickly as children do.  However, not all adults are good candidates for the STA-MCA surgery, and one of the indirect bypass procedures may be a better fit.

If your neurosurgeon isn't giving you good answers about why you aren't doing well after surgery, you might look into getting a second opinion.  At the very least, if a second neurosurgeon with MM experience agrees with what the first is doing, you would know you were doing all you can; however you might end up getting some other treatment options from the second neurosurgeon --- you have nothing to lose  ;)

I'm not sure where you live, but my daughter had surgery with Dr. Steinberg in Stanford, CA, and I would recommend him very highly.  He saved our daughter's life.  Daphne'd had two strokes before her MM diagnosis, when she was 16 months old, and her doctors in Philadelphia did not expect her to live beyond two weeks.   Thanks to her surgeries back in March (and her incredible will), she celebrated her second birthday on October 7th.   ;;D

Jenny

Jenny

Title: Re: "Choosing" the right type of surgery
Post by DJ on Oct 19th, 2005 at 8:29pm
Hi Emily,

I understand how overwhelming all of the information can be when you're first diagnosed, but hang in there!

Choosing which surgery to have is a personal decision based on your research and your individual case.

Basically, the direct bypass (STA-MCA) provides immediate bloodflow around the occlusion and is generally the option prefered for adults.  Generally, adults have arteries large enough for the surgeon to graft together.

Indirect type bypasses (EDAS, EMS) take time to "grow" and provide relief.  Time varies from patient to patient but it could take anywhere from a month to 6 months to a year to see the benefit.  Indirect is generally the option preferred for children because generally, children don't have arteries large enough for the surgeon to work with.  Also, children are able to grow new networks of arteries much faster than adults.

Another important factor to take into consideration is... because of the way the temporal (donor) artery is utilized in the different types of surgeries, additional surgeries may (or may not) not be possible if the initial procedure doesn't work for some reason.

Example: Generally, if an in direct type surgery doesn't work, there is a very good chance you will not be able to go back and have a direct type surgery performed afterwards.  This factor is especially important for adults.

You'll notice I italicized generally in the statements above because every case is different.  As Shan suggested, it's best to get an opinion from someone who deals with MM on a regular basis to help you decide which option is best for your individual case.

This probably doesn't answer any questions for you either, but I hope it give you more information to help you make a decision for your case.

Hang in there!  If there is anything else or any other questions we can give you some opinions on, please don't hesitate to let us know!

[smiley=hug.gif]

DJ

[Nov 5, 2005 edit in blue]

Title: Re: "Choosing" the right type of surgery
Post by Emily on Oct 19th, 2005 at 9:52pm
thanks for your replies....
there's two surgeons at my hospital with MM experience, i have an appointment tomorrow so i guess i'll just wait and see what they say.
i think they're a bit unsure what to do with me as i'm an adult - 23, but i'm the size of a child (4 foot 8" ) - and seem to have the symptoms of a child rather than an adult (they described me as extraordinary, hehe, wicked)....
i'll let you know what they say.

Title: Re: "Choosing" the right type of surgery
Post by Shan on Oct 20th, 2005 at 12:01am
Hi Emily,

Great to hear that you have 2 MM specialists near you!  I wish you the best at your appointment tomorrow... [smiley=hug.gif]

Take care,
Shan  :D

Title: Re: "Choosing" the right type of surgery
Post by Sara on Oct 20th, 2005 at 9:20am
Emily:

Good Luck at your appointment. I just wanted to offer one more piece of advice. First of all, I am glad to hear there are doctors in your area that have some MM experience. Secondly, I wanted to ask if you thought those doctors would "consult" with Dr. Scott or Dr. Steinberg about your case. When I had my surgery in 1989, my doctor consulted with Dr. Scott. He was wonderful, and while he wasn't actually my doctor, and didn't actually DO the surgery, he helped my doctor figure out what was best for me since I was "one of the first children diagnosed" in the States.

I aws the first surgery for MM performed in Houston, Texas, which has a HUGE Med. Center. And everything turned out great!

Please keep us all up to date!

:) Sara

Title: Re: "Choosing" the right type of surgery
Post by Emily on Oct 21st, 2005 at 2:04am
First meeting with Dr John Laidlaw today and I really liked him. Very comfortable and straight-forward. He's got quite a lot of experience, has decided I first need an STA-MCA of my left side. It seems to be pretty urgent that I get immediate blood supply to that side so that's what we're going to start with.
Then we'll take it from there, my right side also needs to be done, but as I'm experiencing no symptoms yet, we may be able to do an EDMS. And then..... further down the track some sort of bypass on one of the ones (forgot the name already) up the back along the vertebrae.
Kinda sucks that I need so much work but hey i'm never one to do things halfway!!!
My initial surgery will be in about 5 weeks, and i'm currently on plavix (and aspirin) so will be stopping that (plavix) 3 weeks before surgery and having to give myself daily injections (clavicrol?? or something) leading up to the surgery.. (seems my risk of stroke right now is kinda nasty).
so yeah....
feeling good, happy with him and his experience... speaking to the aneasthetist soon and having some SPECT scans and seems to be all under control.

oh and i have to lose my hair  :'(  - because i'll have to eventually have 3 operations i might as well go it all at once than leave it in messy clumps...  combine that to a summer of not being able to drive (i am truly madly deeply in love with my kombi and that's devastating) or spend the festival season with my friends (i WAS moving back to queensland before christmas)..... so basically it's tough times ahead!

Title: Re: "Choosing" the right type of surgery
Post by Shan on Oct 21st, 2005 at 4:09am
Hi Emily,

I'm glad that you're not putting this off and have gone to see your doctor, Dr. Laidlaw today.  I'm also pleased to hear that he is experienced.  ;)

Looks like his current plan is for you to have 3 surgeries?  An STA-MCA on your left side, then an EDMS on your right, then another bypass along your vertebrae?  I'm just wondering if he gave any time frame for your second surgery?  My MRI/MRA on my other side (left) showed multiple TIA's, and I too am not having symptoms, but the option for surgery is still not up for discussion by my neuro at this time.  [smiley=huh.gif]

I too was on Plavix but am now on Aggrenox..but I wanted to ask you more about the injections you mentioned you will have to give yourself leading up to your surgery.  I tried googling it, but I couldn't find it.  It really caught my interest.  Is it like a fast acting/short-term blood thinning medication?  [smiley=huh.gif] Also, I know you mentioned stopping Plavix 3 weeks pre-op, but do you have to also stop taking aspirin prior to your surgery?  I hope you don't mind me asking so many questions...I'm just very interested.

About your hair...don't worry.  I looked quite funny with 1/3 of my head shaved off.  I planned to shave my entire head once I woke up and realized how much was gone...but I chickened out at the last minute.  I personally took a liking for bandanas and probably have one in close to every color ever made.  ;)  By the way, I agree with your decision to shave everything off at once. I was told it's better so your hair can grow back evenly...

Last but not least, your post sounds so positive and filled with confidence, which makes me so happy for you!  A positive attitude will definitely help with morale, and I believe very important with the whole healing process!  Keep the positive attitude, Emily!  Keep up that great spirit!  You'll do just fine!  [smiley=hug.gif]

Take care,
Shan

Title: Re: "Choosing" the right type of surgery
Post by CarasMOM on Oct 21st, 2005 at 4:52am
Hi Emily...enjoyed reading your post.  Cara was six when she had her surgeries...she had both the STA-MCA and EMS done on both sides.  Dr. Meyer didn't think the STA-MCA would hold up because her arteries were VERY SMALL - less than 1mm - and it was like "toilet paper thin" (imagine wetting toilet paper..just falls apart)...but he managed to do the bypass and they kept checking over next few days with the doppler (listening for the blood flow)..it never closed up.  A year later  her MRI/MRA shows good blood flow from the bypass...but they couldn't tell about the EMS as really would need the cerebral angiogram to see that and they didn't feel the need to do that yet unless she was getting worse, with problems..etc.      We look forward to hearing your progress up to surgery, pre-op and post op....sending lots of prayers your way.

Tight HUGS,

Carol

Title: Re: "Choosing" the right type of surgery
Post by Emily on Oct 21st, 2005 at 5:07am
hey shan. no prob about the questions, i'll try my best to answer them...

No time frame for my second surgery yet, i think that's entirely dependant on the patient, how they recover from the first one and how urgent the second one is. ideally he'd like to give me a STA-MCA for the second one also as that gives the most immediate improvement in blood flow; however, if for example, i don't recover too well from (or my vessels don't "cooperate" well during) the first op, then he'll go for an EDMS for the second one. I may easily recover from a stroke the first time, but a second major stroke could result in permanent damage, etc... That's just an example... Also, right now I need help asap, hence the STA-MCA... if it wasn't so urgent he's probably do the EDMS as it's a less risky procedure.

i was on hepron in hopsital, then switched to asprin and plavix upon discharge. the injections will be because dr laidlaw wants me off plavix asap but with my track record i'll have a stroke pretty darn quickly and it may not be pretty. so (sorry i forget the name) [this drug] must allow my blood to be thin enough to avoid strokes but thick enough to not complicate surgery. i'll get all the details in the next few days so i'll get back to you.

i have to admit i'm quite devastated about my hair.. i have long dreadlocks... which i have been growing to some time and i'm very proud of :( oh well.. i'll cut them, shave it off and eventually, when this is all over - sew them back on! hehe...

anyway bring on the questions, makes me think about things and keeps me positive also!

Title: Re: "Choosing" the right type of surgery
Post by CarasMOM on Oct 21st, 2005 at 5:29am
Emily....

...the hair part may be hard.  While just line of hair was taken from both of Cara's head...you couldn't tell she had brain surgery 5 days.  But I understand it depends on the types of surgery involved and everyone is different, different arterial network.  You may find you enjoy short hair for change.  Hang in there. ;)..carol

Title: Re: "Choosing" the right type of surgery
Post by Shan on Oct 21st, 2005 at 11:30am
Hi Emily,

Thanks for your post.  I too was on heparin pre and post op, then when I was discharged, I was on Plavix and 325 aspirin.  I had a one time 4 1/2 hr nose bleed once, so my neuro switched me to 81 mg aspirin and Aggrenox and stopped the Persantine, but it looks like my current bleeding time is "disturbingly" normal.  As soon as I do my breast biopsy next week Wednesday and pray that surgery is not needed...then my neuro will change my meds to thin my blood further which is definitely needed!  He, as well as my internist are puzzled as to why regular aspirin combined with Aggrenox (also contains aspirin and persantine) isn't thinning my blood the way it should be.  I've also been referred to a hematologist/oncologist which I will be seeing next week Thursday.  If you can, please let me know the name of the shot you'll be giving yourself.  I'd like to ask about it; although, I am a BIG baby when it comes to needles.  :-[

You have long hair? Okay, I'm jealous. ;)  But like I said earlier, don't worry...we know you're just as beautiful on the inside as out!  [smiley=hug.gif]

Take care,
Shan

Title: Re: "Choosing" the right type of surgery
Post by pattil647 on Oct 31st, 2005 at 1:11am
I'm wondering if anyone out there has ever had an indirect bypass that didn't work well -- and then followed it with a direct bypass.  If so, how did things go?  Thanks.

Title: Re: "Choosing" the right type of surgery
Post by gotchlorine on Oct 31st, 2005 at 1:20pm
Hi Patti,

Nice to see you on the board again!  It was great meeting your husband and son in Las Vegas, and we were sorry you couldn't be there.

I'm hoping your post doesn't mean that Michael is having difficulties, but thought I should post some of what I understand about direct and indirect bypasses.

Indirect surgery most likely prohibits a future direct bypass because it sacrifices the superficial temporal artery needed to do a direct bypass.  I've also heard that by virtue of doing the direct bypass, the patient benefits from getting an indirect bypass at the same time.

Keep in mind that I'm just a layperson, and my education about the different types of surgery continues to evolve.  This information should be confirmed by a MM specialist.

Please keep us posted on how things are going with all of you.  You will be in my thoughts and prayers.

Warmly,
Jill


Title: Re: "Choosing" the right type of surgery
Post by Emily on Oct 31st, 2005 at 9:17pm
hey shan, the injection is subcutaneous Clexane, got an appointment on thursday to 'learn' how to do it.

Title: Re: "Choosing" the right type of surgery
Post by pomem on Nov 2nd, 2005 at 7:53am
I wonder what their reasoning is for taking you off one anticoagulant "as it is close to surgery" and putting you on another.  Is the Clexane somehow safer for surgery?

Title: Re: "Choosing" the right type of surgery
Post by Shan on Nov 2nd, 2005 at 8:44am
Hi Emily,

Thanks!  

Anyway, to answer pomem's question, I looked up Clexane, and it sounds like you were prescribed since this since "abnormal surgeries may produce a risk of thrombosis" (blood clots).  Your doctor is probably doing this as a precautionary measure, which I think is great.  [smiley=twocents.gif] I was on heparin about 24 hrs prior to my surgery via IV since I was already admitted to the NICU, I believe for the same reason as you.

"Enoxaparin is given by injection under the skin, and is used to prevent clots forming in the blood. This can occur in various conditions where the normal blood circulation is disturbed. Surgery, particularly abdominal surgery, produces a risk of thrombosis, as does a heart attack and poorly controlled angina (unstable angina). Clots can also occur when people are bed-ridden for long periods of time. Enoxaparin is given to prevent thrombosis in these groups of people."
http://www.netdoctor.co.uk/medicines/100000527.html

I give you credit, Emily, for being able to give yourself these injections.  I am just getting use to poking my finger daily to check my glucose levels.  :-/ You would think that after having to have lab tests now once a month, I would be used to it...but I'm a big baby when it comes to needles.  :-[  I know that when it comes down to it, we have to do what we have to do.  ;)

Please know that we're thinking of you.  You've got the right spirit, determination and attitude!....and I have no doubt that you'll do fine.  ;;D  You also have such a great support system, including us, that is going to be right there with you! [smiley=hug.gif]

Take care,
Shan

Title: Re: "Choosing" the right type of surgery
Post by Emily on Nov 2nd, 2005 at 6:22pm
thanks shan :)
have my app today, still not sure if they're intra-venous or intra-muscular.. i assume the former...

and yeah em i figured it's because it's not actually a blood thinner, just something that prevents clotting.. are they different? is that what your medical-paragraph meant shan?

Title: Re: "Choosing" the right type of surgery
Post by Shan on Nov 3rd, 2005 at 1:22am
Hi Emily,

Actually, I thought that blood thinners were anticoagulants, but now I'm second guessing myself.  [smiley=huh.gif]  I know that aspirin has an anticoagulant effect, which means it helps with thinning your blood.  Hmm...I'm pretty sure that anticoagulants and blood thinners were the same thing, but hopefully somebody can let us both know what the correct answer is.  Anybody?  [smiley=huh.gif]  I think the difference lies between anticoagulants and antiplatelet therapy/medication.

Take care,
Shan





Title: Re: "Choosing" the right type of surgery
Post by Shan on Nov 3rd, 2005 at 1:24am
Hi Emily,

I couldn't go to bed without trying to find out more info on this subject...so to Google I went...and found this:

What is an anticoagulant?

An anticoagulant is a substance that prevents coagulation; that is, it stops blood from clotting.

What is an anticoagulant medication?

A drug that is used as a "blood-thinner" to prevent the formation of blood clots and to maintain open blood vessels. Anticoagulants have various uses. Some are used for the prophylaxis (prevention) or the treatment of thromboembolic disorders. Thrombi are clots. Emboli are clots that break free, travel through the bloodstream, and lodge therein.

What are antiplatelet agents?

Antiplatelet agents are medications that block the formation of blood clots by preventing the clumping of platelets. There are three types of antiplatelet agents: aspirin, the thienopyridines, and the glycoprotein IIb/IIIa inhibitors. These agents differ in four ways: the way in which they prevent platelets from clumping, their potency (how strongly they prevent clumping), how rapidly they work, and their cost.

How do antiplatelet agents work?

Aspirin

Aspirin prevents blood from clotting by blocking the production of thromboxane A-2, a chemical that platelets produce that causes them to clump. Aspirin’s antiplatelet effect lasts for days while the other NSAIDs’ antiplatelet effects last for only hours.

Thienopyridines

In addition to thromboxane A-2, platelets also produce adenosine diphosphate (ADP). When ADP attaches to receptors on the surface of platelets, the platelets clump. The thienopyridines, for example, ticlopidine (Ticlid) and clopidogrel (Plavix), block the ADP receptor. Blocking the ADP receptor prevents ADP from attaching to the receptor and the platelets from clumping.

Glycoprotein IIB/IIa Inhibitors

The glycoprotein IIb/IIIa inhibitors such as abciximab (Reopro) and eptifibatide (Integrilin) prevent clumping of platelets by inhibiting a different receptor on the surface of platelets, the receptor for glycoprotein IIb/IIIa. The glycoprotein IIb/IIIa inhibitors that are approved by the FDA must be given intravenously.
http://www.medicinenet.com/aspirin_and_antiplatelet_medications/article.htm

I found a list of blood thinning medications, and Enoxaparin is included:
http://www.umm.edu/altmed/ConsDrugs/DrugCats/BloodthinningMedications.html[/color]

So...My guess is that blood thinners and anticoagulants are basically the same thing.  Antiplatelet therapy/medication may have an anticoagulant effect, but aren't necessarily considered anticoagulants.  I could be wrong, as I am not a doctor, but that is what I gathered from what I read.  I will be sure to ask my neuro at my next appt this Saturday...

I hope I didn't confuse you..

Title: Re: "Choosing" the right type of surgery
Post by pomem on Nov 3rd, 2005 at 1:55am
edit: oops forgot to log pomem out and me in (Emily)

Title: Re: "Choosing" the right type of surgery
Post by Emily on Nov 3rd, 2005 at 1:58am
[try again!]

yep i'm confused :) hehe
but i did have my appointment with the hospital today and found out the following...

both are blood thinners

plavix takes a long time to get out of your system (i am stopping today and it will be out of my system in 2 weeks) - my op is on nov 17 (yes!!! i have a date!!)

clexane moves through your system very quickly, basically within a day. so i have daily injections and on my last day, (wed 16th) it will be out of my system by the time they start operating.

the injections will be done by hospital staff (coming round to my house every day) in my tummy (subcutaneous = fatty bits..... pffff what are they saying! hehe)

there we go.... make some sense?

Title: Re: "Choosing" the right type of surgery
Post by Shan on Nov 3rd, 2005 at 8:59am
Hi Emily,

Sorry for confusing you... You did the best thing...ask your doctor. ;)

Wow! The hospital will be coming to your house to give you the blood thinning injections? Woooo....how convenient!

Wishing you all the best,
Shan

Title: Re: "Choosing" the right type of surgery
Post by DJ on Nov 5th, 2005 at 8:41am
I've edited my original post in this thread and wanted to make sure the information was seen...


DJ wrote on Oct 19th, 2005 at 8:29pm:
Hi Emily,

I understand how overwhelming all of the information can be when you're first diagnosed, but hang in there!

Choosing which surgery to have is a personal decision based on your research and your individual case.

Basically, the direct bypass (STA-MCA) provides immediate bloodflow around the occlusion and is generally the option prefered for adults.  Generally, adults have arteries large enough for the surgeon to graft together.

Indirect type bypasses (EDAS, EMS) take time to "grow" and provide relief.  Time varies from patient to patient but it could take anywhere from a month to 6 months to a year to see the benefit.  Indirect is generally the option preferred for children because generally, children don't have arteries large enough for the surgeon to work with.  Also, children are able to grow new networks of arteries much faster than adults.

Another important factor to take into consideration is... because of the way the temporal (donor) artery is utilized in the different types of surgeries, additional surgeries may (or may not) not be possible if the initial procedure doesn't work for some reason.

Example: Generally, if an in direct type surgery doesn't work, there is a very good chance you will not be able to go back and have a direct type surgery performed afterwards.  This factor is especially important for adults.

You'll notice I italicized generally in the statements above because every case is different.  As Shan suggested, it's best to get an opinion from someone who deals with MM on a regular basis to help you decide which option is best for your individual case.

This probably doesn't answer any questions for you either, but I hope it give you more information to help you make a decision for your case.

Hang in there!  If there is anything else or any other questions we can give you some opinions on, please don't hesitate to let us know!

[smiley=hug.gif]

DJ

[Nov 5, 2005 edit in blue]


Title: Re: "Choosing" the right type of surgery
Post by Annica on Nov 7th, 2005 at 9:10am
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

Title: Re: "Choosing" the right type of surgery
Post by Emily on Nov 7th, 2005 at 5:36pm
thanks annica. good to hear a bit more info about it, out in 72 hrs hey? and makes you less likely to bleed - that's good to hear! guess i'll be having them up to next tuesday or so then...
had my first shot yesterday, got my first little bruise - going to be a colourful tummy by next week!
i didn't mind the idea of giving them myself.. but it doesn't seem like that will be the case...  unfortunately i just have to sit around at home until they get here (no set time).. but ah well.. gives me an excuse to spend less time at work which is a good thing!

Title: Re: "Choosing" the right type of surgery
Post by Emily on Nov 9th, 2005 at 9:09pm
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

Title: Re: "Choosing" the right type of surgery
Post by cass/kate on Nov 9th, 2005 at 10:39pm
Emily -

I have been out of town for a while, but am glad to hear of your up-coming surgery and glad to hear you are feeling much better and energized.

Keep us posted on everything.  You will be on my heart  [smiley=heart.gif] now and all through your surgery and recovery.

Hugs, [smiley=hug.gif]

Cass


Title: Re: "Choosing" the right type of surgery
Post by worrydad on Jan 16th, 2006 at 10:29pm
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.
-----------

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?


Title: Re: "Choosing" the right type of surgery
Post by Mar on Jan 16th, 2006 at 11:32pm
Hi Worrydad,

I just have one thing to say in response to your post... We also listened to our doctors’ say the same exact thing you just posted and my niece had four massive strokes. It left her in a coma, paralyzed on the left side, on a feeding tube, and incontinent. I’m not a doctor and I don't know your daughters specifics, but I’ve seen what waiting can do, and I’ve heard way too many doctors say the same thing, “To wait” and the outcome was devastating. This is a progressive disease, and my question to the many doctors who know there's a blockage and yet still say to wait... I want to know how long does a person wait?? What degree of blockage do you wait for before the possible stroke comes? Yes the MM vessels are providing blood to the brain now, but how long do you wait before these ABNORMAL, WEAK vessels bust and bleed and cause a stroke??

I would definately bet that there are many walking around with MM and have no idea, and that's so very sad that they're a walking time bomb, but what saddens me even more is, the ones that know they have MMD and the possible outcome of waiting, yet still wait for the stroke.

You'll be in my thoughts and prayers

Mar



Title: Re: "Choosing" the right type of surgery
Post by debs on Jan 17th, 2006 at 5:28pm
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!!!

Title: Re: "Choosing" the right type of surgery
Post by debs on Jan 17th, 2006 at 5:42pm
Worrydad,  (part 2)

(woops~ my hand must have hit the print button, sorry!)
Anyway,  I would see about getting a second opinion, rather than wait...  a second opinion can be had by Dr. Steinberg for no cost.  They would tell you answers to your many questions:  what surgery method may be best, consequences of waiting, etc.  In my case, I had both sides operated on 8 1/2 years ago (sta/mca) after I had a major stroke that left my right side very weakened &  aphasia.  Now, most people are amazed that I had such a devastating stroke.  My second opinion  from Dr. Steinberg saved my life!!  deb

Title: Re: "Choosing" the right type of surgery
Post by worrydad on Jan 18th, 2006 at 10:19pm
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.

Title: Re: "Choosing" the right type of surgery
Post by Emily on Jan 18th, 2006 at 11:18pm
hey "worrydad", it sounds like your daughter was diagnosed at a similar state to me, with a complete blockage on the left and partial on the right. my surgeons thought about an EMS but decided i needed an STA-MCA immediately to give me the immediate bloodflow (on the LHS) + i'd also had several strokes.
I have a friend who has had two EMS operations and she's doing fine, it does take months for the blood supply to increase and regulate, so it depends on the case.
I'm now scheduling an STA-MCA on the RHS.

I'd definitely look into it, if you've managed to catch it before any major syptoms then you definitely want to deal with it before they come along!

best of luck
oo

Title: Re: "Choosing" the right type of surgery
Post by Mar on Jan 19th, 2006 at 12:59am

worrydad wrote on Jan 18th, 2006 at 10:19pm:
I have the some concern that I don't have any options once the my daughter's condition is getting worse suddenly.
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

Title: Re: "Choosing" the right type of surgery
Post by Shan on Jan 19th, 2006 at 5:35am
Hi Worrydad,

I don't want to sound repetative, but I do agree with the previous posts about getting a second, and maybe even a third...opinion.  For me, it wasn't until my THRID opinion that I was finally properly diagnosed, and by that time, I needed an EMERGENCY double bypass surgery on my right side.  Unfortunately, nobody where I live could perform this surgery (that I was aware of) so I flew across the U.S. to North Carolina the night I was diagnosed to have this emergency procedure.  (I left on a Wednesday late night flight and had my surgery Friday morning).  Please do seek additional medical opinions.  They are free (except for postage and possible fees for duplicated copies of films depending on your medical facility).

Please also know that you are not alone.  We are here for you.  Please keep in touch and let us know how things go.  Well keep you and your family in our prayers...  :D

Take care,
Shan

Title: Re: "Choosing" the right type of surgery
Post by Shan on Jan 19th, 2006 at 5:45am
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:
Dr. Scott is the premier Moyamoya specialist on the east coast.  Located at Boston Children's Hospital, he specializes in the pediatric treatment of Moyamoya and the EDAS surgery.  Dr. Scott does, however, also treat adults.

Here is his info:
http://www.boston-neurosurg.org/faculty/scott.html


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!  ;;D

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.  ;;D

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.  ;)

http://www.carolinaneuroscience.com/history.htm

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!  [smiley=hug.gif]

Take care,
Shan

Title: Re: "Choosing" the right type of surgery
Post by worrydad on Jan 19th, 2006 at 11:13pm
Thanks all for the help!

I will try to have 2nd opinion and let you know the results.


Title: Re: "Choosing" the right type of surgery
Post by Rox on Jan 24th, 2006 at 4:55pm
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

Title: Re: "Choosing" the right type of surgery
Post by hell_bytch_1 on Feb 3rd, 2006 at 2:00pm
:(I am home from Boston... Surgery went okay....After the phiasco during this last surgery i am not having the other side done...Now how many people can say they were "Half past dead"?...Skull looks train tracks...half of my head is shaven..Think I'll start a new fashion trend They had me in self induced coma for about 10 days, DBL Penomia in both lungs and i thought  it was a kick ass time NOT....and I flatlined almost 22 min....so all the BS u here about a white light and everything...most peeps expience that but i didn't..i hovered over myself and saw as they were working on me and almost called me after 22 min...but then it was like i was slammed back into my body and there was a "BLIP" on the screen and a toe moved and i took a deep breathe...I can't talk which was a delayed reaction from the last 7 strokes so i am gonna have too have speech theapy, OT and PT..at least there is one good thing that came out of it all..no more headaches..

Title: Re: "Choosing" the right type of surgery
Post by cass/kate on Feb 3rd, 2006 at 3:02pm
Dear Laura -

I am so sorry that you have been through so much trauma !  Please know that you are on my heart.  [smiley=heart.gif]

Hugs  [smiley=hug.gif]  and prayers,

Cass in Texas  [smiley=cowboy.gif]

Title: Re: "Choosing" the right type of surgery
Post by gotchlorine on Feb 4th, 2006 at 10:45am
Dear Laura,

Your telling of your story has me speechless.  I'm am so sorry you've had such an ordeal.  I have a question about not having the second side done, though.  Is it safe for you not do it?  Maybe it's a decision you can hold off on until you've recovered from the first.

Anyway, my prayers are with you . . . hopefully the rest of your recovery will be smooth sailing.

[smiley=hug.gif], Jill

Title: Re: "Choosing" the right type of surgery
Post by hell_bytch_1 on Feb 4th, 2006 at 10:52am

cass/kate wrote on Feb 3rd, 2006 at 3:02pm:
Dear Laura -

I am so sorry that you have been through so much trauma !  Please know that you are on my heart.  [smiley=heart.gif]

Hugs  [smiley=hug.gif]  and prayers,

Cass in Texas  [smiley=cowboy.gif]

;)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 [smiley=laugh.gif]

Title: Re: "Choosing" the right type of surgery
Post by hell_bytch_1 on Feb 8th, 2006 at 7:15pm

gotchlorine wrote on Feb 4th, 2006 at 10:45am:
Dear Laura,

Your telling of your story has me speechless.  I'm am so sorry you've had such an ordeal.  I have a question about not having the second side done, though.  Is it safe for you not do it?  Maybe it's a decision you can hold off on until you've recovered from the first.

Anyway, my prayers are with you . . . hopefully the rest of your recovery will be smooth sailing.

[smiley=hug.gif], Jill

Thank you both for thoughtful prayers. I don't regret having the surgery done at all..NO MORE HEADACHES!!! YAYY!!! :D ;;D...Thats one good thing about having the surgery done..Dr. Ogilvy got the worst side(Left). I am also going too see if i can swing it for the reunion in FL this year.  Would be nice too meet other MM survivors. Plus the reunion is on my son's anthony's 13th b-day

Title: Re: "Choosing" the right type of surgery
Post by worrydad on Feb 23rd, 2006 at 11:40pm
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.

Title: Re: "Choosing" the right type of surgery
Post by ntrlpwr on Mar 7th, 2007 at 4:53pm
yeah insurance companies can be a pain in the butt and very annoying.  none of the surgeons want to say they can't do it also, sometimes some can be a little proud and not want to send you out.  hopefully everyone can cooperate and then head out to stanford asap, before something happens.  don't worry just have to push hard and persevere.  

Title: Re: "Choosing" the right type of surgery
Post by Jan on Apr 16th, 2008 at 7:23pm
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

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