After 6.5 weeks at Stanford and 3 weeks of inpt rehab, Amy is home and loving it. Well she and the kids are living with me. She has still not regained use of her left hand and still has cognative deficits. She will soon start 8 weeks of outpt therapies. I see her improving every day but they say it could be a year before she is back to normal. She is on alot of medications. The drs here want her BP high and i really don't understand why. She takes medications 3 times a day to keep it up and it is usually around 140s over 90s. Does anyone know why they want this? Seems to me that when we left Stanford they were weaning the BP meds down. She is back on neurontin for the pain and seizure meds. She is taking a med called amantadine. I was told that it is a med for flu viruses and they gave it to a comatose pt once to minimize flu symptoms and it woke him up so now they use it for cognative purposes. Anyway she takes 11 different meds a day. I am so pleased that she is home. Just wanted to give an update and let you all know how she is doing and thank you all for the prayers you sent. I did feel them in all my despair.   Amys, mom

Great news that Amy is home, I'm sure she'll go from strength to strength.

Good luck

Mark (Luca's Dad)

Christie,
Thank you for updating us on Amy's condition. I will pray for Amy's full recovery. It does take time to heal. and everyone is diffrent. Stay strong. I don't know why MMers typiclay have thier BP on the high side. I don't take any BP meds and I am on the higher side of normal.
I will keep on praying for Amy and your family.
Big Huggs,
Becky

Hi Christie,

I’m so glad to hear you’re home and Amy’s happy. The recovery and rehab takes time after a stroke. I’ve even been told that in some cases they may not see significant improvement until a year after. I guess it varies in different cases, but as long as there is improvement, that’s what’s important. We’ll continue our prayers.

As far as why Amy’s doctors are keeping her blood pressure higher, I don’t know in her case, you would have to ask her doctors there because they know her specifics and can explain exactly why. I do however remember many patients mentioning the fact that their doctors kept their pressure on the higher side rather than normal because of their improper blood flow to the brain, having TIA’s both before and after surgery. A little higher keeps the blood-flow pumping up and through the arteries in the brain. That may be beneficial in some MM cases and yet harmful in others. That’s one of the many reasons I always advise a MM specialist. A difference in blood pressure may seem like a small factor, but very important to a MM patient. I, like you, would want to know exactly why they’re keeping it higher.

Thank you so much for the update. Give Amy a big hug for us and please keep us posted. [smiley=hug.gif]

Mar

Hi Christie,

Good news! I'm glad to hear Amy has completed her inpatient rehab and is at home with you and her children and loving it. That is positive and makes my heart smile.

Sounds like Amy is making progress. Small steps....Big strides. Any improvement is a step in the right direction. Rehab takes time and devotion but the progress improvement is worth it in the long run.

As for the higher blood pressure, my brother's blood pressure is kept at a "high normal". It is like Mar mentioned, the heart pumps blood and the oxygen in the blood needs to get to the brain. My understanding is the blood pressure in a MM patient is kept at a "high normal" and  "high normal" being the key words.

The higher blood pressure may be necessary to avoid additional cognitive impairment or to improve cognitive impairment. I'm not a doctor and my advice would be the same as Mar mentioned. Ask Amy's doctor if her higher blood pressure, at the readings you stated, are normal for Amy based on her condition and exactly why they want the blood pressure higher and at the readings you stated.  

Let us know what the doctor says about the higher blood pressure and keep us posted on Amy's progress.

God bless and hugs to you, Amy and her children.

Lore

My neuro told me we had to find "the balance" with my blood pressure that provided the least amount of symptoms.  Too low and I have numbness, feel like passing out, etc.  By low I mean everyone else's normal.  I had to tinker with my medication and monitor my blood pressure several times daily to find where I was least likely to have a TIA.  I take my BP and then take my BP medication, take half of it, or take none depending on my BP at the time.  I kept a blood pressure log and monitored what the BP was when I was having a TIA, when I felt good, etc.  
 I think on Stanfords web site it gives a little information about needing the BP to be higher to keep the blood moving and the bypass open.  I would also recommend asking her doctor.  She may need to visit other Dr.'s in her life for routine health care and it would be good to explain to them why her BP is high.  I have come across situations where I have gotten a cold or what not and had to explain to my Dr. not only what moyamoya is, but also why my blood pressure needs to be higher than 120/80!      
I too will keep you all in my prayers!
God Bless You All!
Michele

I called the dr and she now wants the BP med changed from Mitodrine 15mg 3 times a day to 10mg 4 times a day. Not much of a change to me. Today she has had the med once only because i can't hardly give it when her BP is 142/100 and 140/92. Seems that is awfully high. i emailed Teresa at Stanford to see what they consider normal BP after the surgery. I have also noticed what i believe is depression and asked to change Amys depression med too. She stays in bed all day long. Her mind is very different since the surgery so it is hard to tell if it is depression or symptoms from the stroke. Will call the dr again on monday to report continued high BP's.      Christie

Christie,
Amy may go through a bit of dreperssion, since she remembers being "normal". It is our subconcios remembering the tings we could do before with out any problems. Stay by her side throught this time and remind Amy it will get better. Amy is still with us so God's plan for her is not done. She will get through the struggels and this temporary state is just temporary. I will continue to pray for you all.
Big Hugs,
Becky