Re: a couple of questions

[Guest guest]

>The first one is bladder related (sorry):

>

>A few years ago I noticed that when I feel like I have to pee, even

>really badly, it sometimes takes me a little while to convince myself

>to go. Does that make sense?

Actually this is called difficulty with initiation, and is commonly related

to bladder tone. Now tone is something that is often affected by the

cerebellum, you can have spasms and spasticity in your muscles, and your

bladder is actually a very muscular organ. SO if your cerebellar function

is affected by chiari, then it would make sense that there could be times

when your bladder is affected by this increased muscle tone. I know

several other people have mentioned this symptom in particular to me (along

with a few others) so I would not dismiss it.

A warm pack over the area, the drug pyridium (a bladder anesthetic) and

medications designed to reduce muscle spasticity might help. Also, a trip

to the natural medicine shop will provide you with a few more options

designed for irritable bladders.Cranex comes to mind right off hand, it is

like 2 litres of cranberry juice in a capsule...but there are otehr

preparations if you want to try that route.

>

>The second one is arm-related:

>

>When is arm weakness a problem?

When it signifigantly interferes with your life and your ability to do day

to day things.

...

>One of my big worries, has been the progressively weaker

>feeling I've had in my arms over the years.

This is commonly related to chiari as well. But it does seem to be one of

the symptoms that resolve well after surgery.

You will have difficulty finding a surgeo who will operate on your to

pre-empt any further damage. Regardless of whether this strategy is

reasonable or not, most ACM surgeons will only operate when the symptoms

are serious or progressive enough to signifigantly interfere with your

daily life. Not just in the terms of pain, but dysfunction as well. Why?

Well, one reason is that the surgery is no picnic, and they want you to be

really sure when you have it. If you have Symptoms that are just annoying

or that can be controlled by meds or limiting activity it is difficult to

decide whether to have the surgery. But if they get to the point where

your life is really affected you reach a point that you know you are ready

for whatever surgery brings.

This is not to say that there is not good logic involved in getting early

treatment. It just does not seem to be an obtainable thing for most people.

To quote one NSG " This is a nasty procedure. We want to make really sure

that the patient has exhausted all other possibilities and is ready to put

in the recovery time before we go to surgery " .

If your symptoms are progressing then you need to consider surgery. The

faster things are progressing the faster you should be trying to get help.

But at age 25, should I be concerned?

The arm weakness is anatomically related to the compression. It may not

get any worse then it is, it is difficult to judge these things. Watch

things, keep records, and see if things are getting any worse over the next

few weeks or months.

>

> Or should I be doing something

>now, while I'm still young and strong and not in great pain?

Pain isn't everything. How is your balance? Can you still drive? How is

your vision? Can you still do your day to day activities or are you

basically living with an ice pack on the couch? When you have to start

changing your lifestyle to suit your condition, when your activities

change, if you start to notice that simple things become more difficult or

even impossible for you, then you need to start looking into surgery.

Sometimes it isn't about pain, but other symptoms that signal the need for

surgical consultation.

I know this doesn't help much. The line is different for everyone. But

everyone knows when they reach it.

Take care

Darlene

ACM 2, Basilar Impression, G-tube, RSD,

C2 fracture and fusion (October13/98) Waiting for the fusion to take : )

Mom to Oliver 15, (ACM 1, Intractable Psoriasis, Psoriatic arthritis)

Elliot 12, (Tetrology of Fallot, Long QT syndrome) and Madelaine 7.

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