Since I have found this site, my wife and I have found some much needed comfort in this website.  We thank all of you for that, especially DJ.

My wife has dealt with Michael's health problems all of his life, (he is currently 17) and I have dealt with it for approx. 7 years.  

It is amazing to me the amount of knowledge that is here.  I would be lying if I said I understood it all.  Some of it is actually mind-blowing and trying to absorb it all at once is, to say the least - overwhelming.

My wife is currently in the process of sending Dr. Scott an e-mail, since our neuro-surgeon's office hasn't teturned her call after three days.   [smiley=furious.gif]

I have a few questions that I am hoping that some of you could help answer.

How do the physicians/surgeons determine which surgery is the best for the individual?

Dr. Scott's website mentions "replacing" the piece of skull that needs to be removed, while others seem to insist on leaving holes open.  Dr. Scott also mentions the possibility of "burr holes".  This is extremely concerning to us, since our son has other ailments as well as his moyamoya and is quite unsteady.  If his skull is not "whole", what is going to protect his brain should he fall, such as having a TIA or just losing his balance?

Could someone please try to explain the "left-sided", "right-sided", two surgeries at once scenerios?  It has been a bit confusing to me.  Michael has had two strokes and has lost much of his motor skills to his right arm.  He also has low vision problems, including a tear in his retina.

(Please excuse me if this isn't worded correctly, it is not my intention to upset anyone).  Lastly, has anyone ever experienced getting better, or are these surgeries (as remarkable as they are) a preventative from symptoms getting worse?

Thanx again for all your help!

-= Dewski =-

Hi Dewski...
...welcome to this site and we're here to answer any questions (big, small, easy, difficult) the best we can as we all been through many variation paths.

As far as "determining which surgery is the best"...varies greatly.  In my daughter's case...her dr review the angiogram in depth...and told us some surgical methods they may do but will decide upon opening her up.   They felt they would do the muscle graft (indirect) regardless and will "try the STA-MCA bypass"..as it could be "very very small" and may not succeed but that would be immediate blood flow..worth the try......so he had the proper surgical team on hand, discussed what he wanted to do.....so that when they opened Cara up...and actually "see" what's there...they decide right then to do a "certain" type.  Both surgeries on both sides were done five weeks apart (right first...then left second).  

Removing the bone is replaced right back when surgery is done...in Cara's case..it was a small piece.  

We were told that the muscle graft...still connected to her scalp so the arteries are intact was put into the skull attached on the brain...and eventually new arteries will sprout from that little patch....may leave a "bump" on the side of her head........but her thick hair would cover.....as she grows it'll blend in with her head.

Her right side bump is slightly larger than the left side...I was worried if she fell on that bump ...damage would be done....but its just muscle nothing would happen should she get hit there.   The burr holes are tiny too (Cara didn't have that) but others can reply to your question.

Right side meaning the surgery was done on the right side of the brain which affects all your left side motor actions.   Left side meaning surgery done on the left side of the brain that affects all your right side motor activities

Cara had a stroke right after her right side surgery (1st surgery) on her left side...so she affected all her right side motor skills (arm, hand, facial, leg...etc..including her bubbling personality)...she had continous occupational (0T) and physical (PT) therapies in the five week period before the second surgery...regained a lot back but wasn't until she came out of the second surgery she got her personality back which meant in her case the additional blood flow she got back helped.

The future outlook is great for her..as it is for all those who have the surgeries...everyone does vary greatly.

I'm not familiar with those who have the surgeries on both sides at the same time but they are under aesthesica longer....varies from case to case but you'll know ahead of time if only one side will be done or both sides at the same time.

While Cara still has tiny seizures/TIA's...she has gotten SO much better....I don't think she would even be alive today had we not done the surgeries.  It's been a year...she's grown few inches and is stronger...doing great but still has more recovering too.

Her doctor told us it takes one person who had "one" stroke 18 months to reach their maximum potenial...and Cara has had several strokes...to give her time as she grows.  She's still little uncoordinated when throwing a ball or when running.  One person commented on Cara's throwing a ball to the dunk cage last week..."whats wrong with that little girl ?"  He was a friend so I hit him back saying you'd be the same way if you had some strokes and two brain surgeries but I am thankful she is alive, happy, laughing and still with us.

keep asking questions, keep researching....took me awhile to get as much information as I could...while this is a rare disorder, still not much statastic information to follow yet...but one of these days...we will have it...until then...we have each other...to continue to pray that things will only get better.

hugs,  CarasMOM

Hi Dewski,  [smiley=wave.gif]

Welcome to our MM family. I’m so sorry Michael has had the health problems he has, our heart goes out to you, but you’ve come to the right place for support, information and friendship. What a wonderful group of people here.

Don’t feel bad about not understanding everything; it’s a lot to take-in and understand. I still don’t understand it all after several years. I’m learning every day with the help of these good people, but the key to a lot of your questions is, READ and learn all you can about MMD. The more you learn, the clearer it will become, and it will help you feel safer and more confident with your decisions down the road.

First of all I have to say, Dr Scott is wonderful, and a leading MM specialist, and an excellent doctor, and I believe that’s the most important thing to do first, seek a MM specialist!! Many excellent neurosurgeons can perform the surgeries, but they may not know, or have the experience with “the disease”, which is also an answer to your first question… How do the physicians/surgeons determine which surgery is the best for the individual?  A mm specialist can perform all the surgeries and knows from experience which is best for your son.

I believe there are several reasons why they choose one surgery over the other. One of them being, how much blood is being supplied to the brain or lack of. There is a “direct” and an "indirect revascularization”. The direct surgery supplies blood almost immediately, the indirect takes a period of time for the formation of a new blood supply to grow. The concept of all the surgeries is to develop new and more efficient means of bringing blood to the brain and “bypassing” the areas of blockage. Dr Scott does a lot of indirect surgery, but I believe that’s because children have tiny donor arteries and the thickness of the scalp artery is sometimes too tiny to be efficient enough for the direct procedure, but not always, but still, donor arteries have a lot to do with the bypass procedures. I would imagine the degree of stenoisis is a factor as well. So, a lot of things could determine which surgery. That’s why we emphasize a MM expert. They will know the best road to take for each individual’s case.

As far as the 2 surgeries go, that depends. MM is a progressive disease. Some people have surgery on one side, depending on their MMD at the time of diagnosis, then down the road, if the disease progresses to the other side of the brain, then you must have surgery on the other side, to prevent a stroke. Dr Scott will determine if he needs it on both sides. Some have surgery on both sides at the same time.-- Again, depending on the condition of the MM patient. The ‘burr holes are inside and they close the incision. You’d be surprised how well people bounce back from these procedures. DJ was sitting up in ICU, putting this website on line, right after his surgery. Each person recovers differently though, as with any surgery.

I’m not sure what you mean by getting better. All I know is, if you have MMD and your brain isn’t getting the proper blood supply, or your collateral vessels rupture and bleed, you’re at risk for a devastating stroke or death, and surgery is the only treatment or management of MMD. It has been very successful with a great long-term outlook in most cases.-- Again, depending on their clinical condition at the time they are diagnosed.

I hope I answered some of your questions. If not, please, ask away! Many people here have been through it and can tell you anything you want to know. No question is too small, knowledge is power with this disease.

I'm sorry for the lengthy post, but I tend to ramble when I try and explain this technical stuff...lol

You all will be in our thoughts and prayers. Please keep us posted.

Mar

What an excellent reply!!!  Thank you so much!!!

I'm still getting a feel for the message boards too, so this might take a bit of trial and error.   [smiley=gocrazy.gif]  I'll get the hang of things eventually...


CarasMOM wrote on Jul 20^th, 2005 at 2:18pm:

Hi Dewski... ...welcome to this site and we're here to answer any questions (big, small, easy, difficult) the best we can as we all been through many variation paths.

I'm sorry to hear that your little girl has had to go through so much.  Her picture is cute.  My wife and I are going to update Michael's picture in the very near future, with something a bit more square.  LOL  The message board's kinda sqish the picture a bit.


Quote:

As far as "determining which surgery is the best"...varies greatly.  In my daughter's case...her dr review the angiogram in depth

An angiogram is a test that Michael has not had yet.  I imagine that it is somewhat invasive, so perhaps that is something that Dr. Scott would want to do in Boston as opposed to us having it done here in Syracuse, NY.  I am sure he will let us know when he calls.


Quote:

...and told us some surgical methods they may do but will decide upon opening her up.

I am not ashamed to say that I find that a bit unnerving.  I am sure that there are always decisions that need to be made at the moment of surgery.  I guess it's the "unknowing" that makes me uneasy, but in reality, no matter what type of surgery Michael will have to undergo, it will be difficult to see him go through it.


Quote:

Removing the bone is replaced right back when surgery is done...in Cara's case..it was a small piece.   We were told that the muscle graft...still connected to her scalp so the arteries are intact was put into the skull attached on the brain...and eventually new arteries will sprout from that little patch....may leave a "bump" on the side of her head........but her thick hair would cover.....as she grows it'll blend in with her head. Her right side bump is slightly larger than the left side...I was worried if she fell on that bump ...damage would be done....but its just muscle nothing would happen should she get hit there.   The burr holes are tiny too (Cara didn't have that) but others can reply to your question.

In Michael's case, he has other things that will no doubt fall into play.  He has a lhigh-pressure vp shunt in his head for his hydrocephalus.  I guess we aren't as worried about a bump here and there.  LOL  He is just a "bumpy-headed-kinda-guy".  We were much more concerned about him having a piece of his skull permanently removed and having live brain tissue "open" for the slightest bump to jar.  It seems to be that leaving the bone fragment out is much rarer than we initially thought.


Quote:

Cara had a stroke right after her right side surgery (1st surgery) on her left side...so she affected all her right side motor skills (arm, hand, facial, leg...etc..including her bubbling personality)...she had continous occupational (0T) and physical (PT) therapies in the five week period before the second surgery...regained a lot back but wasn't until she came out of the second surgery she got her personality back which meant in her case the additional blood flow she got back helped.

Isn't that a wonderful thing!  WTG Cara!   ;;D  Michael all ready has many problems with his right side.  He had a stroke in-utero and another at a very early age.  I'm not even sure if it was ever determined if he was right or left-handed, although he is left-handed now by default more or less.  His partial paralysis goes all the way down his right side, including some in his face.


Quote:

The future outlook is great for her..as it is for all those who have the surgeries...everyone does vary greatly.  I'm not familiar with those who have the surgeries on both sides at the same time but they are under aesthesica longer....varies from case to case but you'll know ahead of time if only one side will be done or both sides at the same time.

From the little that I have been able to put together, Dr. Scott's website seemed to dictate that distance might be a factor as well, in determining whether or not two surgeries can/will be done at the same time.  We are approx. a five-six hour drive, (flying low)  ;), from Boston and I don't believe that flying is an option with Michael's shunt.  I guess time will tell in all of this...


Quote:

While Cara still has tiny seizures/TIA's...she has gotten SO much better....I don't think she would even be alive today had we not done the surgeries.  It's been a year...she's grown few inches and is stronger...doing great but still has more recovering too.

Wow...  Now, although that is something that we don't actually envision, the miracle of actually growing more would be amazing.  Michael, at 17, has a height and posture of about a 6-7 year old.  He is a very short (but adorable) little man.  He is about the same in his mental stature.


Quote:

...until then...we have each other...to continue to pray that things will only get better.

And we are both OH SO THANKFUL for this message board!

Take care,

-= Dewski =-

Hi Dewski,

I also would like to extend a warm welcome to you and your family.  Your story with Michael is amazing, and I (as a parent also) know how heart-wrenching it is to have a sick child.  My 18 year old daughter had her MM surgeries 13 months ago.  She is doing very well . . . in fact, she is vacationing in Puerto Vallarta as I type this (a big step for us to let her go like this!)

Carol and Mar did their usual wonderful job in welcoming you.  This is a very special group of people, and there is so much information here to be shared and learned.  Never hesitate to ask, as there will always be someone ready to teach from their (or their loved one's) experience.  We will also be ready to lend a shoulder to lean on, anytime you need one!

Though I don't know him personally, I've heard great things about Dr. Scott.  He is definitely one of the best with MM, and I will be anxious to hear if/how you proceed with his recommendations.

Again, welcome!  You, your wife and Michael will be added to my prayers.  Please keep us posted as you can.

Hugs from California,
Jill

wrote on Jul 20^th, 2005 at 2:28pm:

Hi Dewski,  [smiley=wave.gif] Welcome to our MM family. I’m so sorry Michael has had the health problems he has, our heart goes out to you, but you’ve come to the right place for support, information and friendship. What a wonderful group of people here.

We are finding this to be VERY true.   :D   Thank you for the warm welcome.


Quote:

Don’t feel bad about not understanding everything; it’s a lot to take-in and understand. I still don’t understand it all after several years. I’m learning every day with the help of these good people, but the key to a lot of your questions is, READ and learn all you can about MMD. The more you learn, the clearer it will become, and it will help you feel safer and more confident with your decisions down the road.

I am not what I would consider a very good poster.  And my wife is probably even worse.  LOL  But we have spent a great portion of the last week simply reading (and re-reading) many of the messages on moyamoya.com.  This is indeed a rare disorder and it is SO valuable to have ppl to discuss different issues with and to know that there is someone - somewhere - who understands where we are coming from and who can relate to the different problems we face as they arise.  (How's that for a run on sentence?  HAHAHA)


Quote:

First of all I have to say, Dr Scott is wonderful, and a leading MM specialist, and an excellent doctor, and I believe that’s the most important thing to do first, seek a MM specialist!! Many excellent neurosurgeons can perform the surgeries, but they may not know, or have the experience with “the disease”, which is also an answer to your first question… How do the physicians/surgeons determine which surgery is the best for the individual?  A mm specialist can perform all the surgeries and knows from experience which is best for your son.

One of the first things that Michael's new neuro-surgeon said to us, was that while he reccomends the surgery and would perform the surgery if we requested him to do so, he highly reccomended Dr. Scott if we had the option(s) to do so.  Our surgeon has only done the surgery a few times.


Quote:

I believe there are several reasons why they choose one surgery over the other. One of them being, how much blood is being supplied to the brain or lack of. [snip] ... Dr Scott does a lot of indirect surgery, but I believe that’s because children have tiny donor arteries and the thickness of the scalp artery is sometimes too tiny to be efficient enough for the direct procedure, but not always, but still, donor arteries have a lot to do with the bypass procedures. I would imagine the degree of stenoisis is a factor as well. So, a lot of things could determine which surgery. That’s why we emphasize a MM expert. They will know the best road to take for each individual’s case.

There are so many puzzles to Michael.  (My nickname for him is "The Mystery Man".  He likes it.   :)  ) Like I mentioned in a post to another person earlier, Michael is 17 years old but has a physical (as well as mental) build of a six or seven year old.  I can only imagine that what arteries that he does have in his brain are small as well?!?!?


Quote:

You’d be surprised how well people bounce back from these procedures. DJ was sitting up in ICU, putting this website on line, right after his surgery. Each person recovers differently though, as with any surgery.

DJ seems like quite a remarkable person.  He took the battle by the horns and didn't bow down to it.  Kudos!


Quote:

I’m not sure what you mean by getting better.

I guess part of the question was a hope that perhaps some of the damage that has been done over the years might be able to be helped?  He has had PT, OT, he even has an AVI in school for his vision, but there really doesn't appear to be alot in the way of recovery in these areas.  I was curious if the return of blood flow to parts of the brain in certain individuals have resulted in reclaiming some of the neurological losses that moyamoya patients face...


Quote:

I hope I answered some of your questions. I'm sorry for the lengthy post, but I tend to ramble when I try and explain this technical stuff...lol

I will never consider a lengthy post as "rambling"...  Hehehe  Sometimes, it's the only way to explain such a complex and frustrating disease.


Quote:

You all will be in our thoughts and prayers. Please keep us posted.

We'll "dew" and thank you,

-= Dewski =-

Dewski,
      Thats the best thing you can do for you and your son is just keep reading your on the right track even the old stuff this site is so full of useful important information and peoples experiences. I didn't want you to think they will have no idea at all of what surgery they're going to do until they get in there, they will by the results of the angio and spec test and other tests  have an idea before hand, its just if when they get in there things are looking a little different then what they saw on the films and such they may choose another surgery. You will feel alot better after talking to Dr. Scott. We flew from Va. to Ca. so Mandy's surgery's were one week apart so distance does make a difference however naturally if its to risky they won't do the 2nd just because you've traveled far. Dr. Scott will probably know if it is safe for flying with a shunt too I'm sure. Good Luck and we'll be praying for you. Just Keep Reading!
                        Nancy

Dewski wrote on Jul 20^th, 2005 at 8:16pm:

From the little that I have been able to put together, Dr. Scott's website seemed to dictate that distance might be a factor as well, in determining whether or not two surgeries can/will be done at the same time.  We are approx. a five-six hour drive, (flying low)  ;), from Boston and I don't believe that flying is an option with Michael's shunt.  I guess time will tell in all of this...

Dewski -

I was 28 when I had my surgeries with Dr. Scott (30 now).  I also live about 5 hours away from his office (in the Philadelphia area).  Dr. Scott did my surgeries a week apart.  Therefore I was in Boston for about two weeks....I was in the hospital the entire time and my Mom stayed in the hotel right next door (my Dad flew back and forth between Philly and Boston as he had to work).  Anyway, we flew throught most of the pre- and post-surgery appointments but opted to drive for the actual surgery due to timing - It's difficult to plan a flight schedule when you don't know how long you're going to be in the hospital.  

Anyway, from what I've heard from other people on the board, Dr. Scott usually does MM surgeries a week apart.  But I want to stress that everyone's experiences are different.  Especially, from reading your posts, that Michael has other medical issues that he, and your wife and you, are dealing with.

But Dr. Scott is wonderful and you are in very good hands!  The hospital is wonderful too!  It's very comforting when you are there - when you mention moyamoya and everyone knows what you are talking about!  

Again, good luck, and keep us posted on Michael's progress.

-Shari

Hi, Dewski.  Welcome to the group!  I see that you've already gotten some great feedback.   I just wanted to add that while the surgeries cannot repair any areas of the brain damaged by stroke, the improved blood flow to other areas of the brain may allow for some cognitive/ speech/ motor improvement.  

I don't know if this is coincidental, or not, but my daughter was only 28 inches long, at 18 months, and had no teeth before her surgery.  It's been almost five months since her surgery, and she's now 31 and 1/2 inches long, and has seven teeth!!  We definitely noticed a big growth spurt after the surgery... so, who knows?

Daphne also had many health issues before her surgery.   If you're interested, her story, and moyamoya surgery journal are on her website www.daphnestory.com

I know how scary the thought of surgery can be, but in our experience, it was not all that bad (certainly better than the thought of what would happen without the surgery!)  Daphne'd previously had surgery to correct a heart defect, and I can tell you that  - for us - the neurosurgery was easier to go through.  You think of neurosurgery as being so scary, but it's actually less painful than many other types of surgery.

Good luck with everything!

Jenny

kotipup wrote on Jul 22^nd, 2005 at 1:17pm:

Hi, Dewski.  Welcome to the group!  I see that you've already gotten some great feedback.   I just wanted to add that while the surgeries cannot repair any areas of the brain damaged by stroke, the improved blood flow to other areas of the brain may allow for some cognitive/ speech/ motor improvement.

Thank you.  I was wondering if I may have worded my post a little odd, but I am glad that you caught it!   ;;D  You hit it right on the head.  I know that Michael obviously suffered damage from the two strokes, aut I have often wondered if some of his speech pattern problems might be from the moyamoya and not necessarily *all* from the strokes. 


Quote:

I don't know if this is coincidental, or not, but my daughter was only 28 inches long, at 18 months, and had no teeth before her surgery.  It's been almost five months since her surgery, and she's now 31 and 1/2 inches long, and has seven teeth!!  We definitely noticed a big growth spurt after the surgery... so, who knows?

That is awesome!  That would be so wonderful if Michael could see some results there.  He is a 9th grader, actually going into 10th, and all the other kids tower over him...


Quote:

Daphne also had many health issues before her surgery.   If you're interested, her story, and moyamoya surgery journal are on her website www.daphnestory.com

Guaranteed to be my next stop.  :-)

Thanx for the post,

-= Dewski =-

STrantas wrote on Jul 22^nd, 2005 at 9:34am:

Dewski - I was 28 when I had my surgeries with Dr. Scott (30 now).  I also live about 5 hours away from his office (in the Philadelphia area).  Dr. Scott did my surgeries a week apart.  Therefore I was in Boston for about two weeks....

So how are things for you now that your surgery is two years behind you?  I am learning more and more of people with Moyamoya who were either diagnosed or had their surgery in their adulthood.  I never realized that this was so plevalent in adults as well.


Quote:

Anyway, from what I've heard from other people on the board, Dr. Scott usually does MM surgeries a week apart.  But I want to stress that everyone's experiences are different.  Especially, from reading your posts, that Michael has other medical issues that he, and your wife and you, are dealing with.

Yeah, Michael definately has quite a history.  He is such a loving little man - he never has shown his discontent with his ailments, unlike his step-father.   ;)  


Quote:

But Dr. Scott is wonderful and you are in very good hands!  The hospital is wonderful too!  It's very comforting when you are there - when you mention moyamoya and everyone knows what you are talking about!

That has to be almost mind-blowing!  Just this website has been an eye opener for us, I can only imagine what Boston will be like when we get there!  


Quote:

Again, good luck, and keep us posted on Michael's progress.

We will.  Right now, we are sort of "on hold".   Dr. Scott just started a two week vacation.  We have to send all of Michael's latest scans to him and then Dr. Scott will address his concerns with us as well as other staff at Boston.

-= Dewski =-

kotipup wrote on Jul 22^nd, 2005 at 1:17pm:

If you're interested, her story, and moyamoya surgery journal are on her website www.daphnestory.com

I spent about an hour and a half there last night and will no doubt go back again at some point today.  My God, but she has been through so much in her short time.  God bless her, and her parents too!  It takes an incredible amount of strength and faith to endure what you have so far.[smiley=thumb.gif]

I just had to stop back and give you and your husband kudos for all that you have done and continue to "dew" during her incredible journey.

God bless you and yours,

-= Dewski =-

Nancy_N. wrote on Jul 21^st, 2005 at 8:22pm:

Dewski,       Thats the best thing you can do for you and your son is just keep reading your on the right track even the old stuff this site is so full of useful important information and peoples experiences.                         Nancy

Thank you for your post.

A post being "old" here is completely irrelevant to me, because they are ALL new to me.  LOL

All the ppl here seem so knowledgable.  It is such a "pleasantly strange" feeling to be somewhere, where EVERYONE understands exactly what we are talking about involving Michael and his Moyamoya.

-= Dewski =-

Dewski wrote on Jul 22^nd, 2005 at 10:57pm:

So how are things for you now that your surgery is two years behind you?  I am learning more and more of people with Moyamoya who were either diagnosed or had their surgery in their adulthood.  I never realized that this was so plevalent in adults as well.

Things are wonderful, thank you!  It's actually been a year and a half - haven't reached that 2 year mark yet.  But I've definitely gained a new appreciation of life!  I don't sweat the small stuff anymore - I don't worry about the little things that, in the grand-scheme of things, don't really matter that much!

As for the prevalence an adults - yep!  When I was first diagnosed and I was researching MM I read that diagnosis usually occurs in the first and third decades of life (0-10, 20-30).  I say usually - of course there are always exceptions.  Have you notice the poll on the front page of the message board?


Dewski wrote on Jul 22^nd, 2005 at 10:57pm:

That has to be almost mind-blowing!  Just this website has been an eye opener for us, I can only imagine what Boston will be like when we get there!

One of our goals on this website is to spread awareness of and about Moyamoya.  If you haven't done so, check out the Online Store!  I wear my blue MM band daily and I get lots of questions about what MM is.  Spread the word!!!

-Shari

Aloha Dewski,

So glad that you found this site.  I am currently recovering from my surgery (almost 2 months post-op), and am still learning about this very rare disease, so ask as many questions you may have.  I wasn't formally diagnosed with MM until I sought out my third opinion, and by then, I was told on a Wednesday evening that I had to have my "emergency" double bypass surgery by that weekend. (I was having multiple TIA's for the past 2 months but was only being treated w/medication alone by my first 2 neurologists).  We took the first flight out that Wednesday night about 4 hrs after I received my doctors call...and after 12 hours of flight time, I was admitted directly to the NICU to prepare for surgery the next day (Friday).  So, to be honest, I really didn't have any time to research or find out any information regarding this disease until after my surgery.  I did; however, have the opportunity to speak to 2 other MM patients of my doctors about an hour before my flight departed...which shed some light on what I was about to experience.  

As with Michael, I too have other medical challenges, so just be sure that you mention them to Dr. Scott.  For example, I had to do pre-op testing for my heart (cardio stress test), etc. to be sure that my heart was strong enough to withstand the surgery and also did an adenosine stress test about a week after surgery. I am also a type II diabetic being treated with pills; however, the intravenous steroid administered to me immediately after surgery raised my blood sugar levels, so for the first time I had to receive insulin shots while recovering in the NICU.  They will monitor Michael very closely, but as you know, it helps for them to be aware of any pre-existing conditions.

I too am so grateful for DJ and this wonderful site!  Just from your original post, I also learned more information about "burr" holes from CarasMom's response, and can better understand the difference between "direct" and "indirect" procedures from Mar's response.  Keep asking questions until you feel comfortable that all your concerns are addressed.

You, your wife and Michael will be in our thoughts and prayers.  Please keep us informed on his progress.

Take care,
SFH

Shan wrote on Jul 25^th, 2005 at 1:02am:

Aloha Dewski,

...snip...

Quote:

You, your wife and Michael will be in our thoughts and prayers.  Please keep us informed on his progress. Take care, SFH

Prayer from Hawaii - we feel blessed all ready!  ;;D

Things are pretty much at a stand still until Monday or Tuesday.  Dr. Scott is currently on (what sounds like a MUCH deserved) vacation.  He returns back to work on Monday, August 8th.

We have sent Dr. Scott all of Michael's latest MRI, MRA, and shunt series, along with all the reports, for him to review.  (Hopefully, he will get a nice stiff cup of coffee first.)   :D

Then, we wait for his phone call.   [smiley=worried.gif]  

To say that we are nervous would be a drastic understatement, but we are thinking positive and need to focus on the fact that there are "others" that know so much more than us when it comes to Michael's disease and what is in his best interest.  

It can be difficult to come to terms with knowing that sometimes we have to put our trust in others to care for our needs.  It makes it even more difficult when it is for our child's needs.

From all that I have found to be true about Dr. Scott, I know that Michael's medical needs will be in the best of hands.   8)

-= Dewski =-

you and your family have our continued prayers....while it is hard but it does help to have a positive attitude and pray that all goes well .   He will be in great hands no doubt.   :) CarasMOM.

Aloha Dewski,

Waiting is always hard...As a matter of fact, I am currently waiting for one of my doctors (not related to my MM situation) to return my call regarding recent blood test results, but it looks like I'll just have to wait until Monday too.   :-X  Some people say they think the worse so that they are better prepared to hear the results; however, like Cara's mom stated, I belive a "positive attitude" is best....(I know, easier said than done...)  Stay strong....and try your best to redirect your focus on other things....(again, easier said than done).   ;) In fact, I just signed up for a "Yoga and Anxiety" class being offered by one of our hospitals here in town to learn relaxation and breathing techniques to prevent/control anxiety.  The upcoming class is currently full, so I'm waiting for the next one...so please know that as much as I'm telling you to relax and re-focus, I know that I too need to work on what I preach.   ;)  

Regarding Dr. Scott, I personally don't know him, but from what I've read about him, he is an amazing man that is no stranger to MM.  

Just know that you, Michael and your family are in our thoughts and prayers...yes, even from aaaalllll the waaaaaay across the Pacific Ocean.  ;;D

Take care and let us know how things go...

We're here for ya' ;)

Take care,
Shan

Well, it looks like we are headed for Boston Sept. 15th.  Exactly one month from tonight.

Michael's Partial Complex seizures have stopped for the most part, and his TIA's seem a bit less frequent than they were.  I think some of it might have been from going in and out of the air conditioning all the time.  

[glb]Question:[/glb]Michael just got off of Topamax and is currently on Keprra.  Will he still have to take these medications after his surgery as well?  He also takes 1/2 of a baby aspirin a day.

-= Dewski =-

Hi Dewski,

As each patient is different, the best person to direct that question is Dr. Scott.  Most patients do end up continuing with aspirin therapy.  My daughter is on a daily adult aspirin indefinitely.  I can't speak to the Kepra, but would imagine that it would depend on Michael's seizure activity.

I'm glad to hear that surgery is scheduled!  It's far better to be making plans than to feel like you're doing nothing.  You, your wife and Michael will be in our prayers.

Hugs from out west,
Jill

Dewski... :D  Hi.

After Cara's second surgery...when she was doing pretty good before all the TIA's started....she was only on baby aspirin (81mg) daily and Dr. Meyers said ...we may ease off of it in a year if no symptoms....then when all the TIA's happened...her local neurologist put her on Trileptal (mild form of anti-seizure medication that doesn't require blood checks to check liver levels)....dosage has been increased few times.  Her neurologist wants her to continue on it for a while...no set time when she'll be taken off.   I have a feeling she'll remain on baby aspirin indefinitely.  Like you I asked the same questions...as time went on I realized its a matter of wait and see.   Also from what i read of others...many remain on the aspirin therapy still....but not sure about the anti seizure medication...as Cara has been on hers since Sept 04...almost  a year !!!!  

:) Carol