Comments on Snail Hollow Gazette: Living the Life 5

Thanks Jim. My husband did find that site and joi...

2010-10-19T13:23:33.325-07:00

Thanks Jim. My husband did find that site and joined. There's also a spinoff site in the U.K. that seems better organized--surgeons speak at the U.K. version of the alliance.

Hope all's well enough in your world.

Patricia, Thank you for taking the time to update...

2010-10-16T17:10:59.517-07:00

Patricia,

Thank you for taking the time to update me. I'm sure you are busy.

FYI, in case you haven't already seen it, here is a link with lots of info about cavernous angioma...

"http://www.angiomaalliance.org/index.aspx"

Hi Jim, Trying to catch up with everybody. Hope...

2010-10-16T13:51:37.230-07:00

Hi Jim,

Trying to catch up with everybody. Hopefully, I won't lose this comment to Internet forces of destruction.

Mark had his stroke sometime before July 30. He was sent from the San Juan Hospital by air ambulance to the U of U Hospital, where an MRI revealed he had an underlying condition called "cavernous malformations." It was one of these cavernous malformations that had ruptured--probably because of high blood pressure--and caused the stroke. Doctors found that Mark had an estimated 100-200 cavernous malformations scattered throughout his brain, including in his brain stem region. A surgeon informed Mark while he was still in the hospital that the cavernoma that had ruptured would certainly rupture again, and when it did, the results could be fatal. So on August 27, Mark returned to the U of U Hospital and had brain surgery. Surgeons had to go deep into his brain to remove the ruptured cavernoma, actually parting the large lobes to reach it. The surgery went very well, and Mark managed to talk his way out of the hospital three days later.

He has some deficits. Originally, the stroke caused Mark to lose nearly the entire left side of his field of vision. Over the last couple weeks, he has regained some of that. He also suffers some speech problems and left-side weakness. But overall, he's in remarkably good shape for the size of the stroke and for the fact he had brain surgery. As far as we can tell, he suffered no further loss of functionality as a result of the surgery--really amazing.

At his follow-up appointment last Monday, the surgeon estimated that about 50 of the cavernomas in Mark's brain have bled already, just small amounts, largely what's called "asymptomatic" bleeds. But overall, the surgeon was very pleased with Mark's condition. He gave Mark permission to discontinue one of the most pernicious of the medications he was on, but the remaining four often make difficult determining what's a med side effect and what's a stroke symptom.

The discovery of cavernous malformations has coincided with the development of MRI imagine. Until MRIs came along, nobody could determine the presence of cavernomas, as CT scans are not refined enough in their imaging to show their presence. So the research train is just leaving the station on cavernomas--not much is known about them, and there's no treatment. All we can do at this point to reduce Mark's risks of experiencing more bleed is medically maintain a lower blood pressure.

There is some information that says that cavernous malformations are not fully formed blood vessels--they're more like the inner lining of vessels. Anyway, you probably see our dilemma. We have no idea where this is going to go. "Uncertainty" is our word for the day.

Patricia, I am glad to hear that your family is b...

2010-08-08T09:50:16.324-07:00

Patricia,

I am glad to hear that your family is back together at home. You can endure a lot, with the strength of four walls around you.

Lots of meds I do take - not sure if they're helping, but its what the docs ordered. I made several requests for changes before settling on some that seemed to have minimal side-effects. One thing to be aware of is that there are dozens of blood-pressure meds, and they act different on different people. If you find one with unpleasant or untenable side-effects, ask for something else. Doctors have a whole bag of them. They all cause a little different result. It takes time, and a lot of experimentation, to get things dialed in just right. Before that, at least with me, I found the cure to be worse than the ill!

Another thing to beware of is the initial phase of getting accustomed to things. That is just going to take time and patience.

May the Lord's blessings attend your efforts.

Jim, Mark's coming home today. Right now, he...

2010-08-08T07:59:51.651-07:00

Jim,

Mark's coming home today. Right now, he's staying at his nephew's in Pleasant Grove, but he, my brother, and my son will start out this morning to come home. He is so happy to be out of the hospital--he was there for over a week. Much of that was spent in Neuro ICU.

A couple days ago, when he was irritated with not having a release date and wanting desperately to go home, he told me to ask you something: "If they won't let me leave when I want to, ask Jim if I can borrow the Polaris 800. He'll understand what I mean."

http://snailhollow.cobabe.net/2009/03/morning-misadventure.html

I laughed and laughed, because of course I remembered that post and knew what Mark was getting at--I had read your post to him back when you wrote it. It was good to have something funny enough to laugh about in the middle of all the scary stuff.

Thanks, Jim, for helping to provide a lighter moment. We both really needed some fun. Words we set down in our blogs, etc., often have longer lasting effects than we guess, eh?

If I remember, you're on a lot of medication. Mark's got something of a heap, now, too. His current doses affect him rather heavily, making him groggy at times. We're going to go through several adjustments, I think, as we try to find something that does the job (keep blood pressure down) yet is as comfortable as possible. Did you have to do a lot of adjusting? If so, how did you do it?

Patricia, Okay to come back to me with questions ...

2010-08-06T19:29:46.466-07:00

Patricia,

Okay to come back to me with questions - I'm glad to offer what little help I can give. A stroke that arise out of brain hemorrhage is different than the ischemic event I sustained, which result from blocked arteries, rather than an aneurysms. Surgery can sometimes correct aneurysms by repairing ruptured arteries, removing accumulated blood and reducing pressure on parts of the brain. No such remedy is generally possible for an ischemic stroke, though there are sometimes other measures that can be taken. Nothing was appropriate in my case.

Thanks, Jim. I'll evaluate the house for trip...

2010-08-06T10:56:46.550-07:00

Thanks, Jim.

I'll evaluate the house for tripping/fall hazards, as suggested. I understand that, at least at times, he has enough mobility to roam the halls at the hospital. He has had physical and occupational therapy and a speech therapist he's very impressed with. Like you seemed to, Mark understands that language is important to the brain environment and is working especially hard in that regard. His vision has suffered, especially the left side of his field of vision. He may regain a good deal of that--hard to tell at this point.

Everyday we hear he might be able to come home the next day. The next day arrives, and we hear, "Not yet." Blood pressure seems to be a serious concern. And he might have to return to SLC for surgery. Did you have any brain surgery as part of your treatment?

If it's all right with you, I would like to lean upon your experience to help me figure out what's best for Mark as he recovers whatever he can.