Hi, my niece was diagnosed Tues, July 21st with MM.  I am filled with questions and my sister is also.  My sister is not a message board kinda gal so I thought since I am more comfortable I would join.  If I repeat a question I apologize in advance, I have tried to look around for some of the answers already on here.

My sister is using Thomas Jefferson University in Phila, she was told they are in the top 5 in the US. They were at another hospital that "thought" that it might be MM and they told her we want to transfer you to a place that can fix it, if we keep you here for the final diagnosis you will have to move anyway(kinda one stop shopping).  From what i have read here we should be thankful that it was recognized so quickly and that they knew to move her.

My niece is 24, she has had minor strokes on one side and almost complete blockage on the other. Her presentation was loss of ability to use three fingers on her hand, she could not hold a fork properly or type(this was a bit of a throw off because she has had surg on this arm so we were not sure if it was nerve damage) and a bit of a drag on a foot that my sister noted and took her to the er immediately.  She is scheduled for surg in two weeks on the side with the strokes and in 6 mts for the other side.  She takes great care of her body and is physically fit.  She has had bouts of increased heart rate also.( i assume is a combo of nerves and her heart trying to pump more blood to the brain). 

My questions, to start out with(i am usually full of questions, lol):
1.  Second opinion - yes or no - i read about the dr in Boston, should be send the info up there?

2.  This is a dr question but you all have more experience sometimes:  what is the risk of waiting on the almost completely blocked side?

I am sure I will have more questions.

Bless each of you and your families.

Mac

Hello, Welcome to Moyamoya.com. I had never used a message board until this one. I didn't join it until a year and a half after my daughters surgery and wish I would have joined sooner. I think after a few times your sister would learn to love it. I have learned so much.


To answer your questions I do think you should send the films to Boston or Stanford. My daughter did not see a specialist on Moyamoya. Her surgeries did turn out good. Since then I have found them to have a lack of knowledge. Which makes me feel uneasy. My daughter is doing good but I do regret not seeing a specialist in the beginning. Luckily I now am able to email Dr. Stienbergs group with any questions. To answer your second question my daughters first surgery was on the side with the least amount of damage. After her angioram they noticed that her left side where she has had 3 strokes was already forming collateral veins to overcompensate for lack of blood flow. Remember that everyone is different and also my daughter was only months old at this time of her life so maybe I shouldn't be giving you advise. I do think you should see a specialist just for the right answers. Good Luck, Danielle

Hey Mac

Welcome. It's all good advice above.

Two questions, is that the best you can do? My 2c worth would be to tell you that you are doing great by your niece. Her strokes so far appear to have been relatively mild, she's been dignosed fairly early and being transferred to a hospital familiar with moyamoya.

I would never take the 'wait and see' approach on a side that is almost completely blocked, maybe on the other side.

It wouldn't harm to get another opinion, it also wouldn't cost anything. But don't think that it's absolutely imperative that you go to one of the so called moyamoya experts. If it's within your means and you feel you really need to, sure, then go to one of them.

You are on the right track for your niece; if it is moyamoya, get the surgery wherever it might be. It's not all doom and gloom, your niece will be fine with the right treatment.

Mark (Luca's Dad)

Quote:


So, if you happen to be an adult with MM, and Dr. Scott only does the pediatric population, and you are not accepted by Steinburg....what EXACTLY do you recommend as the alternative...in your opinion?  

Of course we would all like to be seen by the "specialist" but it isn't realistic to offer only that advise when it just isn't going to happen in every case, IMO.  Time and again someone new joins the forum and they "learn" about the TWO specialists IN THE COUNTRY.  Not everyone gets to go to them, and that is the reality.  Unfortunately, many people are left devastated when this reality sinks in.  I find it interesting that many people who regularly recommend these specialist had their own surgeries done by neither of them, or worse yet, don't even have MM and can really have no way of actually knowing what it is like to have MM, a TIA, a stroke, or brain surgery! 
I think the point was that people can be successfully treated by a number of surgeons...the list is long under the surgeons WITH EXPERIENCE tab.  IMO, a second opinion is always a good idea, and an opinion from a specialist wouldn't be a bad idea, but it doesn't guarantee anything.  We all are just doing the best we can with what we have available to us, and there is nothing wrong with being SUPPORTIVE of that!

That's my nickels worth!
Michele

That’s wonderful news Mac!! You’ll be in great hands!

You all will be in our thoughts and prayers.

Please keep us posted.

Mar

Quote:


So, what are people in this situation to do?  I was in the same situation when I first found this forum, and I know exactly how this feels.  That is about as far as my "personal" anger and frustration goes.  But, I have been contacted by MANY people who have experienced the same thing.  People who were never contacted back by Steinburg, people who were told to get an angio and send it and then were never contacted back, people who were told they needed to come up with a quarter of a million dollars as down payment before their child could get treated... What education and support is offered to them?  Horror stories about botched medical care from other Dr.'s?  When that's all you have available, how can that possibly be helpful, supportive or educational?  People are very free to say I wouldn't recommend so and so, or they diagnosed me but I did not have them do my surgery on this forum.  It's only when specific Dr's get negative responses that members get pounced on.  Unfortunately, the forum has lost some members because of this.  I suppose it would be easier for me to just go away too, but that wouldn't be fair to those future MMers who will be also faced with this same dilemma.  They deserve someone to give them some hope too.  I was very fortunate, when my personal story got out there about not getting surgery at Stanford, several reputable doctors that have done hundreds of surgeries stepped up and offered to help.  Not one of them asked about my financial ability, and all sent information on how to get their individual institutions to waive the expenses.  So, if my personal hero's are different than yours, I offer no apologies.  People have a right to that information, and that kind of support if they need it.  It really isn't all doom and gloom if the one adult specialist can't treat you.  BTW, People who are treated by the specialists can still have problems after surgery, i.e. strokes, TIA's, bleeds, etc.  Just thought I'd throw that in there since that rarely gets said either, while I'm on my "personal anger and frustration" crusade...LOL.  Like I have said before, there are many of us who have NOT been treated by a "specialist" and thank God we are all among the living!  Not one of us has rolled over and died, imagine that!  Some of you may be offended by my position, as I have discovered in the past,  but many more will contact me personally and offer support, at least that has been my previous experience.  There is quite a quiet undercurrent of people who agree with me, it's just too bad they feel they cannot come out on this forum publicly, or have been compelled to leave it all together.  I'm sure you can all see why they are reluctant.  But, I personally will be here to support the new MMer no matter where they get treatment, and no matter what treatment they choose to receive, with the love and understanding they deserve.   
God Bless You All
Michele         

Michele wrote on Aug 2^nd, 2009 at 1:52pm:

I say, thanks be to God, you are very fortunate, but sadly I’ve met and spoken with far too many MM patients over the years who are NOT still among the living, and I know of countless more patients whose lives has been totally destroyed or seriously damaged because their doctors’ were not experienced enough with this rare disease. The medical community is getting better every day, thank God, but not fast enough for the ones about to stroke or hemorrhage because of one bad call from their doctor due to the lack of experience that’s still out there. That’s all it takes. So, we try and give the best advice and support possible to hopefully avoid that from happening to anyone, and by advising a second opinion with a MM specialist who has the most experience with this rare disease, from their research, testing, and studies of this disease, makes it the best we have to offer any patient at this time, in a medical community with no guidelines and where they’re still learning about it. Having traveled down this road, it’s our duty to give all members the best possible advice we can, but whatever those members do with it is their choice for whatever reason, but we still have to continue to do so.  

You quoted Masonsmom when she said:
masonsmom wrote on Jul 10^th, 2009 at 11:11pm:
Certainly everyone wants the best care possible. My god, that’s all anyone wants. If Masonsmom thinks everyone makes it sound like the only way you can practically survive is if you have a specialist, well that’s her opinion and she’s entitled to it, but it certainly doesn’t make it true, and in all honesty, it’s far from the truth. This forum proves that. Lmom stated it perfected in her post above, I can’t say it any better than that.

Michele wrote on Aug 2^nd, 2009 at 1:52pm:

My opinion then, always has been and always will be what I’ve said all along… to learn all you can about MMD and to seek a doctor who has as much MM experience as possible. It’s the best advice you can give any MM patient or their family, IMO. You can only hope and pray that happens. That’s all you can do.

So I don’t understand your post or your point at all. No one can help it if you or anyone in this country doesn’t have any health insurance to go to a MM specialist. Sadly there are millions just like you, but that shouldn’t stop us as a support team from trying to give the best advice possible to others, just because you can’t go to a specialist. Knocking a number one specialist on a medical forum where he can save lives isn’t very supportive at all, but rather shows lack of respect and integrity. You should be ashamed and embarrassed by it. When your angry about not getting the care you deserve, I can understand that, but possibly harming others because of it, isn’t right, IMO. Your undercurrent probably knows that already as well.

Michele wrote on Aug 2^nd, 2009 at 1:52pm:

It’s stated in MANY posts throughout the forum, that there’s a risk with any type of surgical procedure, that’s just common knowledge and doesn’t need repeating, but helping a new member learn about this disease and the percentage of success with a MM specialist is vital information. There’s life saving decisions in these facts. Dr. Steinberg having done over 500 successful surgical procedures, and having over a 95% success rate, whereas the percentage of success with a doctor that has little MM experience would lower that success rate drastically, as facts have shown in the past. I personally would want ALL the facts available, so I could decide if I should go with the higher percentage of success for myself or a loved one or not, but if you can’t, you just do the best you can in your situation.

All the supportive members here just want to help other members get the best care possible, in hopes that every member has the facts as we know them to help them base there decisions on, whereas you’d rather knock an excellent surgeon, that could perhaps sway a member from a life saving decision, just because Stanford would not do your surgery for free. That’s just too sad and unproductive on a life saving support board. How does your original post help or support Macmommy? They want the best possible care for their niece, that's their decision and their choice, but yet you’d rather post and ask what do you do if you can’t get a specialist, and try and knock me for trying to help them. It’s plain to see you totally missed the whole point Lore tried to make in her post about helping others here, but perhaps you can’t help it, so we’re certainly not offended by your position, but rather saddened by it.

I’ll keep you in my prayers.

Mar

I never intended for this to become a problem.

But I will state that I want a specialist, the best in the world for my niece.  My sister wants that also.  I got awesome advice from those that have dealt with both Boston and Stanford.  If it takes using a line of credit to get it done my sister will do it for her daughter.  None of us expected a free surg for her, nor would ask for it.   They have insurance and are working out the specifics now, she is due in CA on the 13th of Aug, i believe surg is sched for the 17th or 19th. 

As I said I wanted advice on a specialist, i did not intend for this to be drama.  But i have been on enough message boards to know that this runs a lot deeper than my one posting for advice.

I wish you all the best.  Thanks for the advice.

Great News about your niece Mac.
My niece is in CA now and tomorrow is her second surgery. Please keeps us posted and all the best to you and your family
Entesar

Macmommy,

I'm so glad to hear your neice is scheduled for surgery.

I understand your wanting the best for your nieice. I too wanted the best for my brother and did whatever it took to get him across country and treated by a specialist.  

Please accept my apologies for the distraction. I'm sure you realize this is not about you and I appreciate your understanding.

We are here to support you and your family. If you have any questions, please ask.

I look forward to updates on your niece.

Sincerely,

Lore