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debknechtel 12-17-2004 02:24 PM

Hi there

My internest just told me today that he is 90 % sure this is what I have. I have looked it up on line and found info but I was wondering if their are any others who have this disorder.


SM is a chronic progressive disease of the nervous system. It is less common than multiple sclerosis, although it does have certain similarities. For instance, it may show itself in early adult life, and it affects both sensation and muscle power. It is sometimes spasmodic in it's deterioration, the precise clinical course can not be forecast, and it's cause or causes are largely unknown.

In this disease a cavity or syrinx develops within the spinal cord and sometimes the lower part of the brain. This cavity usually connects with the ventricles and subarachnoid space, fluid spaces within and around the brain. Normally, the pressure changes in the fluid which occur on coughing, sneezing, straining, or even the minute changes occurring with the arterial pulse are distributed and damped down within the system without damage resulting.

In Syringomyelia, however, there is often obstruction to pathways in the fluid spaces and this may occur as a result of congenital abnormalities of the brain, previous injury to the head (eg. difficult birth), spinal injuries, or inflammation. It occurs in some paraplegics or quadriplegics, or in a few cases, spinal or brain tumours.

The result is that the pressure fluctuations create a fluid-filled cyst which gradually extends downward through the spinal cord and up into the brain, expanding over time. Because of the limited amount of room available in the cord, this expansion results in it's gradual destruction from the inside out, usually beginning with that part concerned with pain and temperature sensation in the upper limbs or the nerve fibres to the legs. In the end stages of a severely affected case, the cord may appear as a huge cyst with, in places, only a tiny remnant of the original tissue as a thin superficial layer. This progression may take several decades and the disease has a tendency to arrest at any stage.

The earliest signs of the disease can occur in childhood up to the sixties, but is more common in early adult life. The onset may be painless injuries to the hands (eg. burns) which are unnoticed until quite severe. This may progress to weakness of the arms, stiffness and weakness in the legs, deformities of the spine, and involvement of the lower part of the brain, resulting in swallowing and breathing difficulties. Because the nerves supplying joints, especially the shoulders, are often damaged, degeneration of these joints occurs which in about half the cases is extremely painful. Sometimes the initial symptoms are of weakness or stiffness.

Immobility is a problem and can lead to pressure sores, thrombosis in the leg, veins, chest infections, joint stiffness, and thinning of the bones. More disabling still may be the frustration that the sufferer experiences with an active mind in a progressively less active body. Difficulty with breathing and swallowing can be worrying. Because of the progression in the course of the disease, patients may become depressed and require treatment for this.

Hugs Debbie

janet 12-20-2004 03:40 AM

Deb, My prayers are with you dear friend. I pray that Our Father will heal you and restore you to your former healthy self.

God Bless,

debknechtel 12-20-2004 04:06 AM


thanks so much for your concern and really means alot to me right now. It is hard with my family being 3000 miles away to cope with being ill.

hugs debbie

Lifestar 12-20-2004 05:44 AM

Deb, I'm sorry to hear that they have found this diagnosis.. But at least you know what you are dealing with..

Do you by any chance have a diagnosis of Arnold-Chiari Malformation?

This is what my older DD has, (ACM-type 1) and we have to have MRI's every year to check for syrinx. So far she has none..

There is surgery to relieve the syrinx that develop in ACM..and improve the flow of spinal fluid, relieving the obstruction and many of the neuro symptoms. There are some Dr's out there doing the decompression surgeries.

What did your Dr say caused your syrinx to develop? I also have done a lot of research on syringomyelia.. but only in it's relation to ACM.

I'm praying for you and I hope you can get some more answers.. and hopefully a cure...

debknechtel 12-20-2004 05:51 AM

Hi Val

I won't know for sure till I have the MRI done. I have read online that some have actually both.

I have lost my cornea reflex in my left eye, I have loss of bladder control, I have weakness in my respiratory muscles, I am left side weak, I have no felling of heat on my left foot and calf or left fingers, same with cold., I have headaches, curved spine, high arches and a few others that are signs of this disorder.

He thinks it may be a congenital deffect with me and that the cyst would be in my upper spine, neck or head area.

Thanks for all the info and concerns


Lifestar 01-06-2005 04:47 AM

Hello deb,

How are you feeling?

I hope things are better with you and you are getting some relief from treatment and answers from testing...

I wanted to let you know I'm still keepingyou in my prayers, and thinking of you.


debknechtel 01-06-2005 04:53 AM


Thanks for your prayers and concerns they are very much appreciated right now.

I go for my MRI this coming Monday, Jan 10 and I should have the results in 10 -14 days to know for sure if this is what i have or if it is something else. I will let you know when I find out anything. I found a great webpage with info on Syringmyelia and Arnold Chiari Syndrome

They have some interesting news articles and fact sheets.

Thanks again


Lifestar 01-30-2005 08:48 AM

Deb, Any news? I've been waiting to hear what the results were...

When is your next apointment? And How are you holding up? ((( huggs))) Val

debknechtel 01-30-2005 04:47 PM

Hey there Val

I find out this week. I go to see the doctor on Wed. I am actually doing pretty good. I am trying to stay very positive and just wait to hear what he has to say. I have an appt with the neurologist on Mar 9 too address the breathing issues and to see exactly how bad the damage is to me respiratory muscles and if it can be reversed.

Thanks for asking and thinking of me, it means a lot!!!!:hearts:

Hugs Debbie

Lifestar 01-30-2005 05:05 PM

Wow Deb, I give you credit for having so much patience. I'll look forward to hearing what you have to share on Wednesday, if you are up to it.

I'll be keeping you in my prayers ( that goes unsaid, friend) ...

Is it because of Canaada's medical system that it takes so long to see your doctors? It just seems so awfully long to wait!

((( huggs again)))


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