Hi Jodi,

I'm sorry to hear about your sister. At 29 she is young.

Because MM is considered rare (1 in 2 million) many people with MM go misdiagnosed or undiagnosed and since the disease is progressive, without bypass surgery, unfortunately, the result is eventually stroke (s) and/or hemorrage. That's why it is important to be diagnosed and treated by a MM specialist early. That's the problem with having MM. Many doctors are unfamiliar with the disease and as a result, don't know what to look for or even how to treat it. My brother has MM and went misdignosed for almost 4 years. So I can relate to what your sister and your family are going through. My brother was fortunate to have found this site and then be treated by Dr. Gary Steinberg at Stanford, one of two MM specialist in the U.S.

The surgery supplies needed bloodflow the brain has been deprived of from the narrowing and closing of the carotid arteries. The collateral vessels are small and weak and even though they are trying to supply bloodflow they are insufficient in that respect. The bypass or bypasses put a MM patient on a more level playing ground.

Without knowing the full extent of your sister's strokes and hemorrage, it would be very difficult if not impossible to determine the level of your sister's recovery and also because it is different for everyone. It depends on so many variables. With that said, your sister may or may not benefit from an intense speech and/or physical therapy program. You should discuss this with her doctors to get their opinion. They would know better than anyone if such a program would benefit your sister.

I can share with you that my brother had two strokes,  a hemorrage and a dissected right upper internal carotid artery. Not knowing how extensive your sister's strokes and hemorrage are, I proceed with caution because I don't want to give you false hope yet on the other hand, we must always have hope. Many MM patients have had strokes and or hemorrage and have recovered quite well given everything they have been through. You mentioned your sister went through therapy before and recovered and that is a good sign. My brother went through an intense and rigourous speech therapy program. He can speak (has difficulty finding or sometimes saying some words) and he did regain his abstract thinking ability. His paralysis from the first stroke diminshed basically on it's own. That is different than your sister in that you mentioned your sister still has paralysis. That's why I said it is different for everyone. My brother's strokes and hemorrage may not have been the same or to the extent as your sister's and you mentioned your sister has had multiple strokes.  The damage of one person's stroke or strokes versus another person's can affect different parts of the brain and therefore, no two people having strokes and/or hemorrage will necessarily be the same nor will two people be exactly the same. The same goes for recovery. Every person is different and again it depends on so many different things.

My brother was 43 when he had his first stroke and is now 49. He had two STA-MCA surgeries in May of 2005. Before his surgeries, he too was off balance. He reagined his balance after the surgeries. Today, my brother is doing well considering all he has endured. He did benefit from therapy. It was a long road and it takes a lot of work. In other words, it is uphill, sometimes bumpy, eventually levels off and in my brother's case, it paid off. Your sister would know what therapy and recovery is from going through therapy the first time. Again, not knowing the full extent of your sister's condition, my advice would be to discuss your sister's prognosis and next steps with her doctors. 

Time will tell how your sister responds to the surgery or surgeries. Some MM patients mention headaches. In my brother's case, he didn't have a headache. So you see it can be different for everyone. Did your sister have surgery on one side or both sides?

There is a wealth of information on the board about MM the disease and there are many different topics discussed by MM patients that you may find helpful to you and your family as they relate to your sister.

I wish your sister the very best in her recovery and I will keep your sister and your family in my thoughts and prayers.  Please keep us posted and let us know how your sister is doing.

Lore

     

Hello Jodi,

and a special hello to Lore and Island! Great to see you guys active and supporting the newer folks here!

Well, Lore's post was comprehensive and covered a lot of ground. (I love reading them, as I always learn something new)

I am 45 turning 46 this month and just completed dble bypass surgery the end of August. I too, went misdiagnosed for 5 yrs and I certainly went to a lot of reputable doctors....but alas, I fell throught the cracks. Luckily, I had two mild strokes brought on by a separate surgery (long story) which lead to the discovery of my MM. I fully recovered from those and was so very fortunate not to have had a major stroke. 

In your sister's situation, she went into surgery already compromised from a significant stroke. This will be a tougher road for her and she may or may not recover from some of the damage. The bright side is....she will have reduced her risks considerably for any future strokes and/or hemoraging from having done the surgery.
I do hope she will regain her pre-stroke mobility and cognitive ability. She will be in my thoughts and prayers.

Do read the posts here.....I learned so much and found an overwhelming support from the board members. You can search old posts by subject matter too.

warm wishes....and do let us know how she is coming along.
Diane : )