Well, this is MJS here. I haven't written much lately. Still having a hard time adjusting without my sister. Who was taken by this monster MM. But tomorrow, my oldest brother has his surgery. He has 70% blockage. He is really scared and nervous. But feels better knowing I have been learning so much about this MM. It has been almost a year now since my sister had her diagonise. My brother found out about two months ago that he also had it. So, I will be at hospital all day,,, and may not get an update on here until the next evening. They are saying at least 6 hours in surgery. I almost feel like I have been through this before,,, from others here telling their stories.  But this time,,, I am doing it in person. Will let you know more as soon as I can. Sincerely MJS

Dear MJS,

Speaking from experience, surgery days are long, painful ones.  You just want the doctor to come out and tell you everything went well.  The wonderful thing about your brother's case is that something CAN be done about it, so hang on to the fact that this is such a good thing!

Our hearts and prayers will be with all of you tomorrow.  We'll be waiting for an update whenever you can manage a post.

Big hugs,
Jill

After what you have been thru with MM, this has to be scarier than what I went thru with my son. I will be praying for your brother and you. Please try to take care of yourself thru this.

My thoughts and prayers are with  you and your brother. Please let us know how everything goes.

Christy

Praying for you

MJS - so glad to hear he is doing well.   They gave Cara steriods to reduce the swelling..removed her bandage less than 12 hours and put on one not so tight which came off less than 3 hrs..so she was more comfortable without the bandage...was able to wash her hair at 24 hours...water run through but not soak head in water for 6 weeks.  I read somewhere it took time for someone to get the steriods all out of their system..kind of made them jumpy, irritable...funny moods...varies from one person to another.   Another thing..."walking" around, moving around also reduces swelling, too. Will keep your brother in my prayers, too.  Tight Hugs,  CarasMOM

Sorry I haven't been on here for awhile,,, but have had to babysit grandkids,, as they were on spring break. Anyway,,, about my brother. For one, I was NOT impressed at all by the doc. Seems like after the surgery,,, he assumed he had done his part,,, and that was that!!! They released him on the third morning. That was less than 48 hours after surgery. He had only been up and walking once. No instructions at all,,, just call the office to remove stiches.  So,,, Thursday,, he had his stiches out that morning. His wife took him home,,, and she returned to work. When she came home, she found him unable to move his right side(surgery was on the left), and slurring his speach. Called for medics, and they go to hospital. (But not the one he had the surgery at). Docs say ct scan shows a small TIA. Much smaller than the ones he had back in Nov. But those did not leave him in this bad of shape. They say he needs stronger blood thinners. If he could tolarate them, he could go home within 24 hours. At 20 hours, he has another one, with headache, numbness on left side of face, hand etc. Now they say he has some fluid,,, probably post-op. But should be fine. Keep him another night,,,, he has two more. Now he is sleeping alot. They say they cannot do an MRI or MRA for 30 days after surgery. It could be bad for him somehow. But if he goes 24 hours without a spell, they will send him home. The surgeon was there to see him this morning.  What do you all think???   MJS

HI MJS...

....wonder if he still has some swelling especially if he was released that soon and he went back to normal routine little too fast....the swelling Cara had was after the stroke after her first surgery (right side)....but the stroke was on her left side and she couldn't use her right side so we knew it wasnt from the surgery but to ease it a little they gave her steroids to help with the swelling so wont put so much pressure on the left side.   

Cara was up once or twice before we were released on the fourth day, then the fifth day we left the hotel to go to the airport and of course the whole thing was TOO much...she had another stroke but I didn't notice it but I realized something happened after we got to chicago...and still had to go a long ways to the gate for our plane to Phx...I had to carry her until I found a wheelchair not being used...she was in another world...slept the whole flight home....got stronger as time went on....but when we returned to Rochester for her second surgery and they checked her out...noticed that she must have had another stroke from the time we left after 1st surgery til we got back for the second...so I guess that happened at the airport.

Dr. Meyers advised against stronger blood thinners as it might cause a cerebral hemmorage in Cara..this was when she was having all those TIA's. 

And Cara's neurologist in Phx and primary doctor both felt no need to put her through MRI or MRA yet either.

I was like you...especially with her surgeon being halfway across the country....wondering if Im doing enough for Cara.  Her neurologist here in Phx said that Cara was more protected than she ever was in her life now that she had both surgeries....she just needs to heal.  But I still felt I needed to do something or the doctors aren't doing enough.

They did Cat Scans after her surgeries which would show anything abnormal...if something looked out of the ordinary...then they would go further with maybe an MRI....but no need to put her through that...its brain surgery, lots of rest is important.

I wish I could help you more...seems like everyone has a different recovery case but I seemed to gain from hearing everyone's experiences and hope and pray that we are doing enough for Cara.  I ll keep your brother in my prayers. Tight hugs,  CarasMOM

Dear MJS,

The whole thing sounds a little fishy to me!  Obviously I'm not there, and don't know the intricacies of the care that was given to your brother.  But, it sounds like they kind of washed their hands of him once surgery was complete.  And I agree with Michelle and Shari - I've not heard of an MRI being damaging to a surgery patient.  My daughter Tara also had an MRI (and EEG and CT scan) within a couple of days of her second surgery, just to make sure everything was o.k., as she had some excessive swelling in her brain. 

If your brother doesn't show improvement soon, I think I would start asking a whole bunch of questions!  Please keep us posted when you can, and we'll keep the prayers coming.

Big hugs,
Jill

MJS,

Haven´t posted you since your sister died and I just want to say that I´m so sorry for your loss. I really admire what you did taking care of your sister all this time and I hope you know in your heart that you gave her the best anyone can possible ask for in her situation. I work in a palliative homecare-team and I really must say that you did a fantastic thing for your sister.
When it comes to this MRI -MRA-discussion I am sure the doctors are trying to get away too easy, I simply would not believe them! These tests are being taken all the time to diagnose stroke or hemhorrage or all kinds of brain damage while the patient is in trauma so I´d say they are giving you a lot of bull.....
Get a second opinion and try to get some other doctor is my advice!!

Good luck and take care!

Annica

MJS,
Sorry to hear your brother is still having so much trouble, even with all the trouble he seems to be having getting the doctors to listen, atleast the surgery is done. The healing process is rough on a lot of people, but he is healing, not getting worse.

With all you have been through everyoe understands. We all have watched a loved one deal with MM, but you have seen the worse case scenerio (sp?). Just keep pushing the doctors to listen and try to be patient with the healing process.

I will keep you in my prayers, Rena

Dear MJS,

I can only imagine how you must feel . . . especially with the April date approaching.  You've certainly had more than your fair share, and I'm sure it's very hard to understand why this happens.  It's seems so cliche to say this, but God won't give any of us anything we can't handle.  Please know that we're also there with you, supporting you through these difficult times.

Come back when it's comfortable for you.  I'm glad you're reading and drawing whatever you can from here.  Take care . . . you and your brother will remain in our prayers.

Hugs,
Jill

Nancy,

I can't (and won't) pretend to begin to imagine how you feel after what you've gone through with your family.  We're all human, and we question why things happen to us.  I wish I could answer everyone's questions, including those of my own family.  I believe that we will understand . . . someday . . . but that's after this lifetime.  Until then, we place our faith where we choose, and go from there.  I am sorry if I offended you.

The fact that you're here offering support to others is testament to the strong woman you are.  I hope to be part of your support system, and hope you know that you have a friend out west thinking of you frequently and keeping you in her prayers.

Warmly,
Jill