Hi Welcome to our MM family.

There’s tons of advice for a newly diagnosed patient. The first being, to learn all you can about this disease, cuz you’ll have to make a lot of important and life saving decisions, and unfortunately many in the medical community do NOT know enough about this rare disease, so that can often steer new patients in the wrong direction, so by arming yourself with knowledge, you’ll be less likely to take the wrong path, like we see so often when they don’t know enough about this rare disease.

Secondly, the most important piece of advice IMO is to get a neurosurgeon with REAL MM experience or get a second opinion from a MM specialist, one who deals with this disease on a daily basis. MM is a progressive disease and gets worse over time. The progression is different from patient to patient, but left untreated, we know that eventually afflicted patients will have strokes or hemorrhage, which may be debilitating or fatal. With MMD, we know a stroke is coming, we just don’t know when, so it’s important that you get an experienced MM doctor who knows the best approach for your specific case to avoid that stroke. This disease can be successfully treated if the proper approach is taken and you have an experienced MM surgeon.

I don’t mean to frighten you, but rather educate you with a few facts upfront. If you need any help, please feel free to ask us anything. There are wonderful people here who have been down that road and are willing to help you in any way they can.

Please know you’re in my thoughts and prayers.

Mar

Hi  mlgohsman and welcome to the family,

A diagnosis of MM can be overwhelming but you have come to the right place.  There is a wealth of information on the sight and wonderful people on the site who will support you through this journey.

Mar is right and has given you the facts of the disease and good advice. This disease is not only considered rare but is also progressive.  it is not a question of "if" it is a question of "when" one experiences symptoms such as numbness, TIA's, stroke and/or hemorrage.

There are two MM specialist in the USA who have extensive experience in the treatment of MM. You can send your test results such as MRI and angiogram to either.  Their information (Dr. Scott and Dr. Steinberg) is listed under the surgeons with bypass surgery experience.

Dr. Steinberg at Stanford will review your test results and render an expert opinion at no charge. I believe Dr. Scott will also. Dr. Scott is located in Boston and treats MM patients to age 35 and Dr. Steinberg is located in California and treats any MM patient regardless of age.  Additionally, Stanford is the only certified MM center in the USA.  Once you have an expert opinion, you can make a decision on how best to proceed from there.

Dr. Thompson is at U of M and is familar with MM.  Is he your doctor at U of M?

It is possible you have multiple conditions in addition to the MM but it would be best to get an expert opinion from a MM specialist. Also, Stanford's website has a lot of information about MM, underlying and other conditions most commonly found in MM patients and treatment options. It is very informative and very easy to read and follow.

As Mar mentioned, please don't hesitate to ask any questions.

You are in my thoughts and prayers.

Lore

Hi mlgohsman,

I know how overwhelming it can be to receive a diagnosis for a serious disease or in this case a rare disease.  It is only natural to be scared and especially since you have your hands full with your son.  Do you have family who can help with your son's care?

I'm glad to know you have regained most of your function from your stroke.

The only treatment for MM is surgery.  There are two different bypass surgeries. STA-MCA (direct bypass) and EDAS (indirect bypass).  A MM specialist determines which surgery or surgeries is right for your individual situation.

The surgery is to bypass the carotid artery or arteries (2 carotid arteries) depending on if one or both arteries are affected and give you the needed blood flow the MM disease has restricted.  MM being the narrowing and closing of the carotid arteries.

There is no evidence the surgery shortens ones lifespan.  In fact, to the contrary.  It is life saving surgery.  It not only gives you life saving blood flow, it puts you on a level playing ground in terms of your chances of having a stroke.  Once you have proper blood flow, the TIA's stop because the blood flow is no longer interrupted.  Obviously, other factors come into play, in terms of one having or not having a stroke even without MM. Genetics play a part and lifestyle choices such as smoking, exercising and nutrition all play a part in whether or not one has good or not so good health.

I personally wouldn't want just any doctor performing brain surgery on me and especially if I had a rare disease like MM.  Dr. Thompson is a fine doctor. He is a well educated and well respected Neurologist/surgeon. What I don't know is how familiar he is with MM and how many MM patients he has successfully treated.  Just because a doctor is familiar with MM doesn't necessarily make them an expert in MM.

What I do know, is Dr. Steinberg is a MM expert who has successfully treated hundreds of MM patients  and has perfected treatment and care of MM patients over a fifteen year period.  It's not just the surgery alone but the anesthesia, the aftercare and the follow-up that are important.  Stanford has a specialized MM team consisting of doctors, nurses and technicians that treat a patient from diagnosis, to testing, to surgery to aftercare and follow-up. This ensures the  best possible outcome. Their knowledge and skill level as it relates to MM disease and treatment is unparalleled in the USA.

You will want to ask questions of any doctor when it comes to surgical treatment for a rare disease and especially when it involves major brain surgery. I would ask how familiar the doctor is with MM meaning how much experience and how many MM patients has he/she successfully treated?  What tests are involved and why?  What surgery options are best for you and why?  Does the anesthesiologist have experience with MM patients?  How long will you be under anesthesia and what type of anesthesia will be used? What are the risks with and without the surgery?  What are the risks of the surgery and the anesthesia?

The problem many of us have run into with MM is that doctors will say they are familiar with MM only to find out they have seen two MM patients in 5 or 10 years, took a wait and see attitude, the individual either stroked, hemorraged or both because they needed the required treatment surgery to avoid having a stroke and/or hemorrage.  If a doctor takes a wait and see attitude, and especially if you are having symptoms, and you mentioned you have already had a stroke, that doctor is not familar with MM and it's time to find a doctor who is a true MM specialist.

I hope this is helpful to you in getting the proper  treatment you deserve and need ASAP.

I know you have your hands full and I wish you only the very best.

Please ask any questions and let us know how you are doing and what tests you are having and what the doctor recommends.

Hugs,

Lore      

Hello!

Just reading your last post, I noticed you said your son has infantile spasms.  We have a mother here who's daughter was diagnosed witht esame thing, ended up being diagnosed with moyamoya.  Please watch the video link I have included, it could be very helpful with your son, maybe even information you could give to your doctor considering your diagnosis.  BY NO MEANS am I saying that your son has moyamoya, I just think it's a very interesting coincidence.

http://www.moyamoya.com/downloads/discoveryhealth.wmv

Please use this site to your advantage, it is filled with SO much information. 

Our thoughts and prayers are with you and your family during this time. 

Steph

yeah his next nero appoitment i am going to ask, he has had alot of mri;s and catscans because he has hydrocephaclus due to lack of oxygen, i had ecplampseia, and when he was born he was not breathing or had a heartbeat, he has a shunt had stroke, and was having 20 seizureis a hour for 2 weeks striaght, so i know all of these factors could be MM, so i am going to talk to his doctor, he goes in about one month, dosent hurt to ask, i will be really sad if he has it, but i love him, and i have a great husband, and family, im praying the test i have to have yet the days pass by quickly and i can get in and have the surgrey, i dont want to wait any longer than i have to, i finally want to feel good, and not worry every single second if im going to have anthor stroke, so what if i loose my hair then ill look like my 6 month old, we will both be baldy's and if my 2 year old can go through 7 shunt surgries, i can  do this, i know i can, i get my will from him, because he needs his mommy right? i have to be stubborn and take life as it is, and not let a moment go by where im upset about it,

i go for my Cerebral Angiogram May 9th, So im praying it goes well, my sister had one and it went bad, it might have given her a stroke, so im pretty nerrvous, ill let everyone know how it goes, so the 9th i have the angiogram and the 12 i have my scan.  god bless everyone

Mlgohsman,

I have no idea about your situation or the options you might have for getting help, but I do know that we ALL need help at times, and there’s nothing horrid about that, we’ve all been there. I also have no idea how all on this website paid for their surgeries, I could only assume that many struggled and needed help as well. I do believe that many good people live by the principle of helping others in need. If I had a disabled son and an infant baby girl to take care of, I think I’d do whatever it took to get the proper care I needed so I can be there for them.

Any advice you receive from us is given to try and help you, so hopefully you’ll get the best care possible; it’s never to judge you.

Good Luck. My prayers are with you.

Hi Mlgohsman,

You certainly have a lot on your plate and I understand your concern, frustration and worry. I know you simply want as many answers as you can get.  It helps to have some sense of what you are up against so you can do some planning and it also helps to ease your nerves when everything is not a surprise.

What type of insurance do you have that doesn't pay for office visits?  Do you have a high deductible plan? Who is the insurance company?

Are the office visits $300 or does that include testing or lab work and/or medications?

I don't know your specific situation but maybe your son is entitled to financial assistance through the government or an organization.  Have you checked into this? Or, maybe you could speak to your son's doctor about reducing the cost by giving you a discount.

I have seen on many occassions where communities have come together to support families through fund raisers when insurance left them with high balances owed or when insurance benefits were exhausted. It is something to consider.  There are also some organizations that may help you with your medical bills.

To answer your question about surgery, I personally do not know of anyone having the surgery and then having it again on the same side but I suppose it could happen but I certainly think it would be rare if at all.

Some patients have one side operated on and the other side operated on at a later time.  It depends on whether one or both sides are blocked and to what degree they are blocked if you require both sides done. Your test results will answer a lot of questions.

As for how long you will need to stay in the hospital will depend on your individual situation.  At Stanford, my brother was released 3 days after his first surgery but again, that will depend on you and how well you do. He had his second surgery (meaning the other side) a week later.

Please know we are here to support you in any way we can and don't hesitate to ask any questions. I know you have a million things running through your mind and especially since you have a baby and care for your son.  It is a lot to handle for one person and especially since you have had a stroke.  I know this is easier said than done, but I want you to concentrate on you getting well and know we are here to help you through this.

Keep us posted on your test results and know that you and your family are in my thoughts and prayers.

Hugs,

Lore

Lore and Mar is wonderful and their knowdlege is imagin, I personal take their advise, I just have something to add, with your situation did you apply for help from your state, if you get medicated it will help you with doctor's bill or pay off what insurance left off.
I know you have a lots on your plate right now but keep fighting, put one foot in front of other and keep walking, and yes it easy to say than done, but you have to be strong and healthy for your kids, they need you.
I'll keep you and your family in my thoughts and prayers, keep us post.
Kieu