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  #11 (permalink)  
Old 01-30-2005, 05:50 PM
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My results should have been in last week but the doctor only works here 1 1 /2 days a week so to get an appointment I had to wait till the 3rd of feb. The problem with living in a small community, but we are lucky to even have doctors here especially an internist. Otherwise I would have to travel to Ottawa to see one. They will not give results out over the phone. So I wait.....There could be worse things so I have learned to be patient and just enjoy life right now......no sense worring before I know everything(of course I was not this positive the first week)I think the Canadian health system is to blame for the waiting time as we don't pay for services most are paid by the gov't, so it has pluses and minuses.

Will let you know once I do


Hugs
Debbie
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Old 01-30-2005, 06:54 PM
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Debbie,
Just wanted to let you know that I'm thinking of you my friend. I hope the 3rd brings some answers. Please let us know the results if you are up to it. My prayers are with you all week .

Love ya,
Rosey
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  #13 (permalink)  
Old 01-31-2005, 05:43 AM
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Rosey thanks so much . It really does mean the world to me and I am sure because of all of you I am able to cope better with this. you have all made me realize just how much i have to be thankful for in this life. I will let you know as soon as I hear something!!!

Hugs
Debbie
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Old 01-31-2005, 03:48 PM
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Hey sweetie,
You are in my prayers, too! I've not heard of syringomyelia, so can't offer any advice but please know you are in my thoughts and prayers.


hugs, Donna
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  #15 (permalink)  
Old 01-31-2005, 04:44 PM
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Donna thanks for the prayers. I really appreciate them. Not many have heard of syringomyelia. I'll let you all know Wed if that is waht I am dealing with.


Hugs
Debbie
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Old 01-31-2005, 07:43 PM
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Hi I am new to this forum and saw your thread about Syringomielia. I have this awful disorder and have been living with it for 11 years. I just wanted to introduce myself and tell you that you are not alone. I was DX'd in 1994 with a cyst at C-6 and it was 2 mm wide and long at that time and I was already symptomatic. Pain, burning, numbness, etc. I got mine when I broke my neck in the Army. It is now from C-5 to T-3 and 4mm wide. I am partly paralized in my hands and feet, the pain is worse and I am taking narcotic pain relievers, muscle relaxers and I am not operable as of yet. They do not like to decompress until the cyst is at least 9mm or causing massive problems like near paralysis. DO NOT do anything that causes straining or pick up more than ten pounds. Even constipation can cause too much straining and cause growth of the cyst. I know a girl who burst her cyst coughing hard. I don't want to scare you but to tell you to use caution and seek a neurologist with knowledge in Syringomyelia/Chiari Malformation. I am 42 and I was 31 when DX'd with this and a host of stuff I won't bore you with now. Here are some websites that will help you find help and find others like us to talk to.
www.asap.org

www.sm-acm.com

http://brain.hastypastry.net/forums/

www.spineuniverse.com

www.syringo.org

www.csn.ca/

www.chiari-syringo-news.org/index.htm

www.chiariinstitute.com

www.spinalinjury.net

I hope these help you out and if you have questions please feel free to ask.
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Last edited by sweetspirit; 01-31-2005 at 07:47 PM.
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Old 02-01-2005, 03:14 AM
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Sweetspirit, welcome to the boards..

I pray that Deb is NOT diagnosed with syrinx..

I am so glad that my DD has not developed one as a result of her Chiari, but the links you provided are wonderful resources. Tha you.

I am soo sorry to hear of your pain and complications from your injury. I have serious lumbar problems from an on the job injury as a Paramedic in NYC over 15 years ago, so I can somewhat understand your frustration. I had to wait over a year for my first surgery...

Please never hesitate to get involved in the conversations here. You will find nothing but support. It's a great group of women.

Val
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Old 02-01-2005, 07:05 AM
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Eva welcome to Family Corner!!!!! I hope you will check out some other forums and threads. This is the nicest group of women and a few men who offer so much support through friendship!!!

Thank you thank you so much for the wonderful links you posted. It is nice to meet someone who is dealing with this diagnosis. I am very sorry that you are going through this. I go to see my doctor tomorrow to get my results from my MRI and if it is in fact syringomyelia. The main concern with me is that my respiratory centre muscles are showing a weakness and I have had some instances where swallowing is difficult. Depending on what the outcome is tomorrow I may have lots of questions for you!!! Thanks you so much for sharing some of your life with me


Hugs Debbie
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  #19 (permalink)  
Old 02-01-2005, 06:30 PM
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Lifestar and debknechtel,
Thank you both for the warm welcome. I have been reading the threads and posts in this forum for 2 days and love the friendliness and closeness I have seen here. I will definitely be staying here and posting more soon. I have lots of lady friends that would love this place.

I was brought here by a web search I did for Syringomyelia and it sent me to this thread. When I read it I felt your confusion and fear at not knowing what to expect or even if you should be concerned. I just remember so vividly when I first was told that I had a syrnix (cyst), I was so scared and thought I was alone and had no one to talk too. I did not want you to have to stay in that place any longer. I want you to know I am praying that you do not have this awful disorder. I know folks are misinformed out there about this because it is so rare. Just 440,000 of us in the world. I neurologists don't know how to treat it and even go as far to say there is no reason to change you life and there should be no symptoms. That is not true, no matter how small the syrnix there can be big symptoms. You must be careful even our heartbeats, which move the spinal fluid causes pressure on the cyst. A chiropractor is a no go also, they manipulate the spine and that causes pressure also. I will leave this subject until we find out for sure if you have this and then we will talk more if need be. Who knows someone else may need this info.

There are many prayers going up for you and this situation. Take care and know that I care.
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Old 02-02-2005, 01:36 AM
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Debbie,
I'm sending lots of prayers your way today. Good luck and remember I love you friend!!! Please let us know how it goes and if I can help in anyway name it and I'll do my best.

love ya,
Rosey
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