Re: Bill W.

[Guest guest]

Bill,

That was a very good explanation of Chiari for everyone. Thanks for

posting it. I don't have a srynix or syringyomylia (spelling), nor do I

have hydroencephalitus. The spinal tap they did last January when I had my

staph infection is what the doctors think caused such a rapid decline in me.

Speaking with Dr. Levesque in L.A. yesterday brought on new light. I

started having vision loss.... double vision, trouble focusing on objects

and having to keep one eye closed most of the time to see. I thought this

was the progression of the MSA. I saw a neuro-ophthalmologist and had

prisms prescribed. Was told that this was related to the degeneration of

the brain stem... it was. Back to Dr. Levesque, he said that the surgery

needs to be done ASAP because total vision loss can occur within 6 months in

some people. He was quite concerned about the fact that mine is continuing

to fail.... A sign that the Chiari is acting up.

I pray that your daughter does not ever have to experience what I have had

to go through. I pray that her cyst never acts up.

I am not anxious or excited about more surgery... especially brain

surgery.... but I have gone from being able to walk to being in a wheelchair

in more and more frequently in 8 months. I have gone from being able to see

to not being able to focus at all in 8 months. I have gone from " going to

the bathroom normally " to feeling like I'm going to wet my pants only to

find out that there is nothing there in 8 months. The only think that has

improved is my pain. The doctors tried me on durigesic patches.... took

that puppy off after 2 days and cure the idea now... it shut down my bladder

for 2 days and bowles for 3 and had me vomiting for 3 days and stomach

cramps for a week. I could tolerate the Demerol but it too did not do much

to take the pain away. Dr. Levesque started me on Neurontin and Baclofen

and I feel that there is a new lease on life. The pain, while still present

is not anywhere as bad as it was before. I certainly would not make a good

druggie... I prefer the non-adictive meds to the addictive ones. Different

neural pathways to pain. Fewer side effects too.

Debbie, thank you for your prayers and support. I'm not looking forward to

more surgery in any way shape or form. I'm not looking forward to more

needles, iv's, tests, and recovery periods. I'm not looking forward to all

the fears about what else could go wrong. This surgery is one that I am not

taking lightly at all. Too many unknowns but am declining so fast there

really doesn't seem to be an option. We will continue to pray that God

sends us to the right surgeon and that positive things will come to us this

time.

Hugs to you both,

Deborah

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[Guest guest]

Deborah,

The fact that Baclofen and Neurontin are helping with pain is a good sign as

that may show the problem is cramping and not inflammation of the muscles. If

they can relieve the pressure with the operation, you may be able to get some of

that movement back.

If my daughter had been deteriorating rapidly, she would have gotten the

operation and she may still need it at some point. She no longer rides roller

coasters and jerky rides.

I hope that you gain back some of your losses after the pressure is relieved by

the operation. Good luck.

Take care, Bill Werre

[Guest guest]

Hi Bill,

Thanks for asking about Chrissie and myself. We are doing okay, you know the

day by day thing. Right now I am worried about a possible aspiration. Her

voice these last few days sounds wet and sometimes skips if you know what I

mean.

Last week I was dealing with unplugging Chrissie and then the plugged up

toilet, so the plunging tips were very timely. This may be a stupid question

but, does everyone deal with these plugged up toilets or is it because the

MSA'ers save up their ammunition and then fire away all at once?

Sounds as though they had a pretty good turnout for the recent conference. As

you know, it is such a great feeling to be among people that really

understand the plight that we are going through daily.

How's Kate?

Take care,

Jean & Chrissie

[Guest guest]

Jean,

Kate said Hi. Yes, I wish I could have made this conference too.

The problem with MSA is that the cannonballs are so hard. That is why

they have more of a tendancy to hang up. American toilets are not

glazed all the way through the trap which makes them rough and stickly

just out of sight. There is one Kohler toilet which is supposed to be

better and I am researching it. I will let you know if I find a model

number.

I wouls ask your doctor about a swallowing test for Chrissie - or at

least a speech therapy evaluation.

Take care, Bill Werre

=========================

Macklockj@... wrote:

>Hi Bill,

>Thanks for asking about Chrissie and myself. We are doing okay, you know the

>day by day thing. Right now I am worried about a possible aspiration. Her

>voice these last few days sounds wet and sometimes skips if you know what I

>mean.

>Last week I was dealing with unplugging Chrissie and then the plugged up

>toilet, so the plunging tips were very timely. This may be a stupid question

>but, does everyone deal with these plugged up toilets or is it because the

>MSA'ers save up their ammunition and then fire away all at once?

>Sounds as though they had a pretty good turnout for the recent conference. As

>you know, it is such a great feeling to be among people that really

>understand the plight that we are going through daily.

>How's Kate?

>Take care,

>Jean & Chrissie

>