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.

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

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

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.

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

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

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 !!)

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.