or if any one has info on how to go about getting his records to get another opinion , or something , sick kids is the best hospital in Canada and as i am a single mom and money is tight i feel like i am just supposed to wait it out, which i dont want to do and i know or dont think i could get help to go to Stanford as i have read on here Dr Steinberg is one of the best surgeons for mm patients , so if any one can direct me it would be a prayer answered one of many , Josh has Neurofibromatosis 1 and with that rare disease they discovered MM ON ONE OF HIS REGULAR MRIS, i read posts on here everyday and pray for all on here going thru everything and if i can be of any support to chat to listen , my ear is here lol , i just feel like here in Canada we may have the great coverage and some of the best drs (supposedly) but not a whole lot of mm experience any direction please and or support or advice to lead me in a direction

Hi Michele,

I certainly understand your fears and concerns. I wish I had an answer for you. I have no knowledge about how the health care is handled in Canada, so all I can suggest is to contact his doctors and try to get some definitive answers. I would want to know why no date has been set yet if they originally felt he needed surgery in the summer (?) You can explain that, as you understand it, this is a progressive disease and that you are concerned about the possible consequences of waiting. His collaterals (MM vessels) may be providing sufficient blood to the brain right now, so no episodes, thank God, but the danger of progression is still there and that’s why you’re so concerned and need answers.

I don’t know if it will help or not, but here in the USA, being proactive as a parent and demanding some kind of answer can sometimes push them into some sort of action, whether it’s a statement from them explaining why they’re waiting so you’ll feel safe, instead of wondering whether you’ll need to pursue another road. My prayers will be they will move forward with your son’s case in a way that’s best for his particular case.

I hope that Josh doesn’t stress too much, because stress itself can bring on an episode when you have MM, so keeping him hydrated, rested and with less stress as possible until you know something, will be in his best interest, IMO.

My continued thoughts and prayers

Mar

sorry if this is mumble jumbled , just trying to get all my thoughts out , and it has helped

Thank you for all the kind words , and as i am still waiting the surgeons call back to be able to get him to relaease Joshs mediacl info pertaining to mm , i am ready to blow, i would like to get another opinion but he has not called me back with a date with nothing .....i am going down to the hospital today to see if i can connect with another one of his specialists and hopefully get some answers and or another direction

Michele,

I'm saying a prayer right now for you & Josh. 

Stay strong - you are doing all the right things to help your son get the care he needs, and I have faith that your efforts will be rewarded soon.

Jennifer

If you can go to the hospital in person, I would.  Sign the form and ask for a copy.  Make as much noise as possible so that they will do what you want, if for no other reason than to make you go away.  It should not take more than a few minutes for your son's scans to be burned to CD and put in overnight mail.  Offer to take the scans and mail them yourself.  Be forceful, and simply tell them that there is no time for waiting - your son's life could be at stake. 

If you can't physically go to the hospital to sign the form, can they fax it to you and then you can overnight it back?  Ask to speak to a supervisor over the area in charge of the medical release forms - explain your situation over & over until you are able to make someone understand the urgency here & don't feel bad about it.

It will likely be an uphill battle but you are a warrior mom & you will do what you have to do for your son.  Come here when you need encouragement - that's what we're here for.

Best of luck!

Jennifer

You're welcome Michele.  I just want you to know that someone understands your frustration.  I had tears in my eyes as I typed my previous post b/c I was feeling your frustration & I've been there so I know what it feels like. Please post back here on Monday if you're able, to let us know how it goes.  And when you're feeling frustrated write here or send me a PM.  There is no need for you to feel frustrated alone.   

Dear Michele,

Thank you for keeping us posted. I always think about you and Josh and you are always in my prayer.

Thats wonderful news about Josh’s records, are you going to Stanford for the surgeries?  Or just for consultation?

Just try to relax and take it easy, both of you actually, stress in never good. I am sure you will get the news you are hoping for in few days and when you do please let us know.

Just remember plenty of water for Josh and no stress.

All the best

I have been in contact with Stanford pretty much every other day , now we are just waiting for them to receive his medical imaging and stuff , also Josh had a test done when he was first thought to have MM, a fairly new test i believe it was an mri which checked his carbon dioxide levels , i know there has not been alot of the tests done on kids here in Canada anyways , he had to wear a contraption while getting an mri , it want done at Sick kids but at another hospital here in Toronto, just wondering if anyone had had this test done, and from my understanding the mediacl stuff for some stupid reason has to be sent thru the mail , but i will be checking on that tomorrow thanks for the thought , Michele and Josh

so sorry for posting back on here but i am having problems figuring out how to make new post , just wondering has any body had a test called i believe a CVR , my son had it done when they first thought he had mm , its an mri but you wear a mask that puts carbon dioxide in you and i guess ees how the blood flow is , from my understanding test is fairly new here in Canada anyways , we are seeing the specialist here at Sick Kids on Wednesday but i am still awaiting DR.Steinbergs opinion , i am fairly certain thats why i finally heard from the surgeon here , he still seems to be on the fence about all of it since Josh has shown no signs of a stroke , i am frustrated beyond belief , and confussed that a specialist sits on a fence with a disease that is and can be so devestating , he seems to just want to play a waiting game , but this mama wants to do all she can for her lil man , thats why i am seeking DR.sTEINBERGS OPINION AND WOULD AT THIS POINT PREFER TO GO TO HIM , from all i have raed yes they may have found my sons mm by lucky accident but if surgery is what will prevent him from having a stroke then thats what we have to do , i am lucky enough to have my sons school supporting us if we go to the states , i have someone from his school coming with me to the specialist appointment here in Ontario on Wednsday , so that if i miss something , there is another set of ears there with me , has anyone been thru all of this baloney while trying to get treatment for this disease??

Hi Michele,

Jenn here again.  I understand the hardship of living with the uncertainty and fighting for every little bit of progress you make in getting your child the care he needs.  At the risk of sharing TMI, here goes:

When I first brought up MM to my daughter's neurologist, he would not even entertain the notion that she could have MM even though she exhibited EVERY symptom.  He said she was in "too good a shape to have it" and he told me that I was just being a worried, over-anxious mom.  Not until I reached out to Dr. Scott at BCH and requested that my daughter's neurologist review all the correspondence Dr. Scott & I had, would he even begin to consider ordering the diagnostic testing.  And even then he did not make it easy for us - he refused to accept the correspondence between Dr. Scott & me by email, citing patient privacy laws as the reason for his refusal.  It didn't seem to matter that Dr. Scott had been willing to correspond with me via email about my daughter's case.  Ruby's doctor knew he was in trouble at that point and was trying to avoid the entire situation by choosing to hide behind the privacy law ruse.  He kindly told me I could put all the correspondence in the U.S. mail and that he'd look at it "when he got around to it."  I was at his office the next morning when they opened with the correspondence in hand and called every day thereafter until I got him to agree to order the diagnostic testing.  Even then, he wouldn't follow the protocol of tests recommended by Dr. Scott, b/c even though this neurologist knew nothing about MM, he thought he knew better than Dr. Scott, so he ordered a CT angio instead of the MRI/MRA recommended by Dr. Scott.  Of course, after the CT angio confirmed the MM diagnosis, then he ordered an MRI so he could compare it to the 2007 MRI for any new lesions - of course they were there b/c Ruby had had several strokes at that point that he had misdiagosed as seizures.  I was so furious that she had to be anesthetized twice, when if the neurologist would have just followed Dr. Scott's recommendation, we could have gotten thru the testing with one round of anesthesia.  Needless to say, I have contacted an attorney to protect my child's legal rights due to this neurologist's gross incompetence.  However, what I have learned is that he has hired himself out as an expert witness to so many law firms in so many malpractice cases, that it is difficult to find an attorney in our city of 2M+ people who can even have a conversation with someone interested in learning whether it might be appropriate to pursue a claim against him.

My second battle was an insurance battle.  I am employed by a hospital and the insurance offered didn't permit us to access any surgeons outside the hospital's own doctors.  The first surgeon we saw thru my insurance claimed to have studied under Dr. Scott, told me he had performed the procedure "about 6 times" and typically referred any MM patients to Dr. Scott in Boston, even though there is an excellent pedi neurosurgeon with a lot of experience with pial synangiosis (who ended up being Ruby's surgeon) across town at their "rival" - the only other childrens' hospital in town, which has a rich history (100+ years), is affiliated with a major medical school and has a stellar reputation, unlike the children's hospital of my employer, which has only been in existence since 2002.  However, that surgeon had marching orders from my employer that he was not under any circumstances to refer us to anyone - that he would be the one to perform the surgery in order to save $$$.  Well, with little to no experience, I knew there was no way that this surgeon would be doing the indirect bypasses that my child needed, so I fought tooth and nail for 3 months to be able to get my daughter to the other surgeon.  During those months, I was crazy with worry that she would have a major stroke before the surgeries and every day that passed without answers seemed like a year.  Thank God I finally won the insurance battle, but at a high price to my pocketbook (I now owe LOTS more $$ than I would have under my original insurance), my sanity-it was difficult for me to focus on anything other than my daughter's medical issues & ensuring that I could get her to the right surgeon, & possibly even my career (that remains to be seen - I believe that my employer will now be looking for any reason to eliminate me &/or my position, due to the fact that I was so vocal about who I would allow to care for my daughter and that it would not be "our" hospital/surgeons).  No matter - my daughter was able to have the surgery with the RIGHT doctor and that is all that really matters.  She just shouldn't have had to wait so many months after diagnosis to have her surgeries.  One of the first things Ruby's surgeon said to me after her first surgery was how thankful she was that she was the surgeon who had been able to take this case.  She said that Ruby's right STA had vessels branching from it that could have spelled disaster for her in the hands of a surgeon with little to no MM experience. 

Finally, I have had  huge issues getting her reintegrated to school after surgery.  I think we are finally on the right track, but a school official violated her civil rights last week by refusing to allow me to request an evaluation to determine if she qualifies for special education services under Other Health Impairment so now I'm faced with the decision whether to pursue a legal battle with the school system......

The fun just never seems to end, and I have to tell ya, I'm one worn out single mom....but I am so glad that *I* was chosen by the China Center for Adoption Affairs to be this child's mom back in 2004.  It is an honor & privilege for me to be able to fight these battles on my daughter's behalf, and I will fight for her to my last breath if necessary.  Anyone who doesn't realize that about me, will learn it soon enough, as school officials are about to find out.

Please know that you are not alone Michele.....many of us have battled obstacles to getting the care our children need.  It shouldn't be this way, but for some reason that seems to be par for the course.  We are here to support & encourage you every step of the way.  GO MICHELE - you are a great mom!!!

Jenn

Jenn,

The school cannot deny you an evaluation.  You need to push that.  My son did qualify under Other Health Impaired.  The other, thing you can do -- ask for a 504 plan.  Basically, you can get the modifications she needs due to her HEALTH issues.  They REALLY can't deny that.  Both involve federal statutes. 

Josh's Mom:  I know that Canada has socialized medicine.  Just keep pushing!  I would ask for the records to be placed IN YOUR HANDS so that you can mail them yourself.  I would also ask Stanford to try to push for you.  Some doctors only respect other doctors. 
As for waiting -- DO NOT LET THEM DO THAT!!  You do not want your son to stroke.  You don't know how small it will be or how big it will be.  It may only effect a small part of his daily living; it may effect huge aspects of his daily living. 

We were EXTREMELY lucky that Matthew's strokes were just about as light as they could be.  Ten years later, the only visible effects are a crooked smile (that some girls say that like -- much to his chagrin  ) and horrible handwriting.  One non-visible effect -- he struggles with math. 

Kim -- mom to Matthew, 17, moyamoya diagnosed at 7, doubly rare with renal artery stenosis that led to removal of the kidney.