My 30 yr old husband has been recently diagnosed with mm.  He is in Mayo trying to get over some other problems that all started on July 25th.  The drs want him to heal from all the other complications before discussing the mm options.  He has had a stroke that affected his left side and hopefully will start rehab this week for that.  Which he has gotten most of his movement back already without rehab.  

My question is once diagnosed with mm what kind of life are you able to lead such as working? Are there risks of doing certain activities?  He is a very active guy and don't like to sit still.  Plus we just had a baby on July 13th so this has been very hard on us all with the mm diagnosed, the baby, and his other health concerns that we are having to deal with before the mm is dealt with.

I am really completely confused and stressed out about the whole situation.  I tonight finally decided I needed to hop online and see what info I could find.

Thank you in advance for any responses you send my way and listening to my mumble jumble.

Hey iowachix!! If you don't mind me asking, what other problems is he having? The reason I am asking is, maybe they might be tied in to the mm. My mom hasn't had surgery yet, but from what I have read and I understand is that in most cases after surgery they are able to work(if they were able to work before) they just need to be a little more careful and pay alot more attention to their bodies. Just pretty much take good care of themselves and try to lead a normal life. I wish you and your hubby all the best. Keep us posted and read all you can. You can learn alot from everyone hear on this forum. Everyone has been there and they can give you alot of different experiences. Every one is great here and we will help in any way we can. Good luck!!!!!!!!!!!!!!!!                                                            Nikki

Hi iowachix,

there is a new poster - bethsy - who is at Mayo Clinic today having tests done.  I believe her dr is Dr. Frederic Meyer.  Maybe you can do a little checking.  My sister had the surgeries at Mayo 12/02 and 01/03.  Dr. Meyer did  the  surgeries.  I remember his bow ties, Patty chuckled when she saw the ties.

Janice  

Well it all started with seizures at home which he hadn't had since high school.  So I had him taken to ER.  We got to ER his heart stopped so they put him in ICU.  On that Monday heart dropped to 30 bpm and had a couple of seizures.  That's when they found he had internal bleeding.  So scoped him to find artery to stomach was bleeding.  They clipped that closed.  He was in coma until Tuesday.  Saturday had to go in for emergency surgery the artery was bleeding again and put in feeding tube.  Had stroke after that and in coma.  Sunday did MRI transferred to Mayo.  Got really bad infection from Surgery.  Came out of coma on that Wed.  Got pneumonia and more infection.  Had to have 2 chest tubes put in Thursday to drain infections and get left lung cleared of fluids.  Took out chest tubes yesterday.  And stopped his feedings.  Now we are hoping the antiobotics finish off the infection or he will have to have an operation to get infection out and inflat his lung.  They started him on liquid diet yesterday.  Said will go into rehab this week if everything keeps improving.  So in a nutshell that is what has happened since July 25th.

Wow - You guys have been through quite a lot.  Hang in there!  

To answer some of your questions about MM....yes - you can absolutely lead a normal life with MM.  It is imperative that you see a doctor that is very familiar with MM.  Surgery to correct MM is the norm -- although some people on this board have not had the surgery.  This is a progressive disease.  Like nikki said, you just really need to pay attention to your body - and hydration is key.  

We're here to answer any questions about MM that you have - welcome to our family.  In the mean time - you probably want to read as much as you can - there's a lot of information on this web site.  Your husband and your family are in our thoughts and prayers!

-Shari

Wow, now that  IS complications. God bless ya! I'm so sorry to hear all you've been through, but I think you came to the right place. You'll probably have alot of mm related questions once your hubby gets stronger and heels from the infections. Oh btw...welcome to our website. I can't emphasize enough how important it is that you read all you can here. Their are links and all kinds of situations that you may experience yourself and it's so helpful to have the knowledge ahead of time so you can make informed decisions when faced with them. You can't read enough! Also, if you're in the dark about mm itself, I urge you to see the Matthew Fong video link, it's very informative and reassuring. Please feel free to ask all the questions you want, we're like family here and will help in any way we can.

Please keep us posted as to your hubbies progress. You'll be in my thoughts and prayers.

God bless,
Mar

Hi, iowachix

   It sounds like you have a LOT to deal with right now.  You, your husband, and your baby are in my prayers.  If you just need to vent, email me.  I'm pretty much here all the time, lol.  I was diagnosed just in the past 2 months and am looking to have surgery (hopefully) around the end of October.  You mentioned your husband had not had seizures since high school.  I'm curious as to if he had seizures as a child?  Don't mean to pry.  It's just that I was told by my neuro-specialist that there are 2 types of MM.  There is a Primary type that you are born with and a Secondary type that occurs from conditions or other illnesses.  I have Primary MM.  I am going to post more questions about what I found out.  Remember, we are all here for you.  Your family is in my prayers, and I'm here if you need to chat.  WE ALL ARE.  

iwachix,
                 My daughter was diagnosed with non epileptic seizures one year before having her 4 major strokes from MM after blacking out and smashing her head on things 4 or more times and kept blacking out for a few months. After being diag. with MM and having her surgery Dr.Steinberg at Stanford said you realize they were not seizures at all it was the effects of the MM. Maybe your husband is not having seizures its from the MM especially if he's had them for years it may be the progression of the disease, I cannot stress enough how important it is to see a MM specialist not just any neurologist or surgeon. Many have had bad diag. or been told to wait for surgery when if fact by 2nd and or 3rd opinions were told to have surgery right away. Read as many posts on here from people as you can go into every link possible until you can't read anymore. His whole life will change for the better after having surgery, the key is to move as fast as his healing body will allow him. The Dr's should tell you about the MM now, whatever you want to know no matter whats going on first, the more you know ahead the better off you'll be. The top neurosurgeons are posted on here also. You can send films to them also and they will call you with an opinion, thats what I and many on this site have done. Keep on top of this and keep us posted. We're here for you and your family and as always your in our thoughts and prayers. Good Luck. Iknow its alot on you right now but it will get better. Keep the faith.

                                    Nancy :D

Hi...our prayers are with you, too.  My daughter, Cara, had her first surgery this past July 14th at the Rochester Mayo (we live in Arizona)..by Dr. Fredric Meyer.  I do know he is currently on vacation (Aug 8th til 22nd)...as he is doing Cara's 2nd surgery on August 23rd....soon.   Sounds like his previous strokes or seizures, or TIA's or simply "spells" (which what they called Cara's before they (doctors at Phx Childrens Hosp) were sure she had MM.   They kept thinking it was something else..."such a broad spectrum of disorders"...she had extra artery in her kidney and that set off her blood pressure really high but they said that and the abnormal artery problem in her brain were not related......but people with MM have the ability to grow extra arteries with the "high protein level in their body"...so never know but I do know it is VERY important to stay on top of MM while taking care of the other stuff.   Especially whenever they put a MM patient to sleep for tests or operations...they should be told that the patient..."may have MM" because the blood flow is further restricted to the brain while being under...so best have the aethesiologist have experience in MM or at least know what it is.  I always did...and they all immediately looked up the website on MM they never heard of but awed at the information and paid close attention to whenever they did Cara's MRA's (shows arteries) and cerebral angiogram (shows everything....and I notice Cara is not as distorted afterwards when they monitor it more closely.  Now we know she "has" MM...possible primary.  She is adopted so I don't know her medical history....and I didn't know that there were two kinds of MM until I read your post...always learning from each other which is great.  I wonder if you are still at the Mayo...as we will be there on Monday (coming into Rochester on Saturday the 21st) I am deaf but I am an excellent lipreader and can talk...if you want a "hug from me"...let me know.  We'll be checking in the Pediatric ICU Monday morning and probably there two to 3 days.

MM is progressive and of course if no surgery is done...you continue to have little problems here and there...different for everyone.  But once you do the surgery...you can continue on with life probably with follow ups to make sure it continues to get better and not get worse...always on the lookout but still enjoy life though.  Plus if your husband is "normally active" then he should be able to continue to be at that level once they get everything else under control.

Tight hugs, CarasMOM (I'm Carol)

feel free to email me privately: ck.mcwilliams@cox.net

Wow what a hetic week its been for us again - sorry I haven't been on and responded to anyone.  Husband can't seem to stop bleeding in the stomach.  He had a really bad episode on Tuesday night.  THey had to give him 4 unmatched blood transfusions and go in and fix a few spots again.  Then Wed had to give him 2 more transfusion and did an angiogram on his stomach and found some leakage and fixed them.  They did the angiogram to get better idea of what is happening on him.  They aren't sure if the moyamoya is playing part in all this or not.  THey said if they can't get this under control - he has ulcer at the top of his stomach they are going to have to remove his stomach and attach his small intestine to his espogashus and that will act as his stomach.  With all this that keeps happening just puts him further behind on rehab and road to recovery so they can deal with the moyamoya issue.  This is getting very very frustrating the big waiting game.  Not only on the moyamoya but the bleeding.  He got transfered out of ICU today so hopefully that will be his last visit there.

Thank you for listening, I just really need to type this tonight.

Amber

I do pray that all goes well with your husband.  I was there at the Mayo all week and thought about you...hoping that things were getting better for you guys but sounds like you're still struggling though....will keep you in my prayers.  Warm hugs,  CarasMOM

Things are looking up on the bright side now.  Jason has been moved back into rehab for a few weeks.  They think he should have full recovery from his stroke and everything else that has occurred.  Tomorrow the docs are to come and discuss what they have planned for him in regards to the moyamoya.  Jason is very scared as he is finally comprehending what has all happened to him and what he has coming up to deal with the moyamoya.  

I will say this board has given me alot of encouragement and great information.  I told Jason that I had gotten on here and read different posts and stuff and how other people have gotten through surgeries a-ok.  

HI Iowachix....

....wondering if you are still at the Mayo Clinic..at St. Mary's as Cara was in the rehab briefly for an hour for two days working out her right side.  Is your husband seeing or has seen Dr. Meyer...he is the one that did Cara's MM surgery last monday and july 14th.  The rehab section is huge !!!!  Cara especially liked that real car in the middle of the therapy room one that they use to practice help the disable get in and out of a car.  Will keep him in my prayers...as he heals and recovers from his stroke.

warm hugs,  carasMOM....(if you do see Dr. Meyers..tell him Cara and Carol McWilliams say HI !!)

Yes we are still in St Mary's rehab unit.  I commute 2 1/4 hrs back and forth to see my husband, so I don't go everyday.  Today I stayed home to take care of business here.  I plan on going up tomorrow and possibly staying the night - depends how our baby is tomorrow.  He actually is in a rehab room that is for kids so it has a couch to sleep on so I thought I might take advantage of that.  I really am impressed with the great rehab facility they have and how everyone is so nice and upbeat personalities.  With me having the baby with me it seems like it brightens up everyones day (especially the patients).

We are to meet with Dr Meyers tomorrow, that is what Dr Coehn told us yesterday.  This will be our first time of really talking about the moyamoya.  When he was diagnosed with it he had so many other issues to deal with it was put on the back burner.  They just told me that his left side is 100% and right side probably close to 90%.  

Hey Iowachix. I am very glad to hear that your husband is doing better. Although there is still a long road ahead, it sounds like you guys have made it through an EXTREAMLY tough time, so hopefully the rest of it will be a little easier on you both. That's great news that the docs expect a full recovery from both the stroke AND his other problems. Best of luck to you both. Stay strong and love and faith will do the rest. [smiley=hug.gif]