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Biomarker for Diffuse Scleroderma skin has been discovered!


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CT Mylogram Results


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#1 Buttons

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Posted 05 October 2010 - 02:42 AM

Well I went for my results yesterday and generally there was no surprises in that the root nerves to my shoulders and arms are getting compressed hence all the numbness and tingling. Other bit I wasn't expecting is that my spinal cord is in the early stages of compression so the consultant is now talking about doing the two bits in one operation to relieve the pressure before it gets any worse and causes permanent damage. He said he would speak to his other colleagues to see which might be the best way forward because of it being a bit more complex. He is talking about going into my neck from the back so that he can access the root nerve and to be able to clean away the ligaments in the spinal canal which have begun to put pressure on the spinal cord. So I have to wait again to find out what they are going to do if anything.

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#2 Amanda Thorpe

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Posted 06 October 2010 - 03:28 AM

Hello Buttons

I am glad you have an answer for your symptoms although the potential fix could be quite complicated. Do let us know what they come back with.

Take care.
Amanda Thorpe
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#3 Shelley Ensz

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Posted 07 October 2010 - 12:19 PM

Buttons, thanks for the update. But, ouch! That all sounds painful. I'm sorry you are having compression issues. I hope there is something reasonable and helpful that they can do for it.

Here's some extra flowers for you. :flowers:
Warm Hugs,

Shelley Ensz
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#4 Buttons

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Posted 08 October 2010 - 07:29 AM

Well the consultant rang late this afternoon to say he'd discussed it with 4 other neurosurgeons and consultant Radiography who did the Mylogram. The news is that he wants to remove 3 discs and to put in titanium cages, removing all protrusions of bone and ligaments as needed. My spinal cord is being compressed along with root nerves to my arms, it'll take about four hours to do and should only need to stay in hospital for about 3-4days so long as everything is OK. They all feel it should be done soon because of the spinal cord issues and that they will go in from the front of my neck. It will be done in November but could be this month if he gets a cancellation!

I'm a bit shell shocked over it and certainly very scared but I've gone through the risks etc with him and my hubby so will have it done because the alternatives is that I could end up loosing the use of my arms and legs due to the compression of nerves.

Shelley it is very painful now along with all the nerve tingling, which does get me down at times.


Buttons

#5 Amanda Thorpe

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Posted 08 October 2010 - 07:41 AM

Hello Buttons

I am so glad that they can do something to relieve your symptoms as well as prevent further potential problems. That said I would be nervous too and it may be better to suddenly get called in so you have less time to fret about it. Amazing that after a spinal operation you will only be in hospital for such a short time!

Take care.
Amanda Thorpe
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#6 Joelf

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Posted 09 October 2010 - 04:27 AM

Hi Buttons

Well, the surgery doesn't sound like a barrel of laughs, but it must be a relief to know that something can be done to alleviate the constant pain that you're in, which must be very wearing.

I do hope you get a date for the surgery very soon; the waiting for an appointment for the surgery to be done must be the worst part!! :mellow:

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#7 Jeannie McClelland

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Posted 10 October 2010 - 03:09 PM

Hi Buttons.

My old boss's wife had the surgery you are talking about, but had to have more disks removed (he said it was because she put off having it done too long - mostly in order to stop smoking before the surgery as the doctor wanted). He said it made a huge difference once she was all healed and had done some rehab. I'm hoping you get such good results too and soon!

Big hugs,
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#8 Sandy B

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Posted 10 October 2010 - 11:39 PM

Hi Buttons,

The prospect of surgery must be very terrifying for you and yet exciting at the same time,terrifying because of all the risks involved and the latter because it could free you from the awful pain you are in. I sincerely hope it all goes well for you and is one of those life changing moments for the better.

Take care

Sandy B

#9 Shelley Ensz

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Posted 11 October 2010 - 08:09 AM

Hi Buttons,

I'm both sorry and glad that you are going to have surgery. Sorry because I know what a strain that will be, and happy because there is something that can be done to allieviate your pain and prevent worse problems in the future.

My mother had spinal surgery, many decades ago, and they waited far too long before they did it. It was way too much unnecessary pain and it made her rehab a very long time, to have postponed it so long. So I'm glad you are having it done before worse comes to really a lot worse!

Still the prospect of any surgery can be a bit nerve-wracking, not to mention, spinal surgery. So here are some flowers, just for you. :flowers:
Warm Hugs,

Shelley Ensz
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Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#10 Annie20

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Posted 11 October 2010 - 10:10 AM

Hi Buttons,

Please know I am thinking of you until the day leading up to surgery, during and after. Here is a comfort.:emoticon-hug:

Take care,

Annie
Diffuse Systemic Sclerosis, (Scleroderma). Lung, skin and gastrointestinal involvement.

#11 debonair susie

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Posted 12 October 2010 - 12:10 PM

You are in my thoughts, Buttons.
Special Hugs,

Susie Kraft
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#12 Buttons

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Posted 13 October 2010 - 12:00 AM

Thanks everyone for the kind wishes, waiting to know when it will be done is the hardest thing at the moment.

Buttons

#13 Sweet

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Posted 14 October 2010 - 01:34 AM

Hello Buttons my friend. I miss you.
I'm really sorry to hear you have to go through all of this, but I guess in the end if you get some relief then it will be worth it. You are much more brave than me!! I have back problems as well, and so does my son. I was just in NZ visiting him, and he was off work the majority of time and had numerous visits to the Emergency Dept. He needs surgery as well in my opinion, and he is working with his doctors to work through all the other types treatment he should receive prior to delving into surgery.

I send you positive thoughts! Please keep me posted. :flowers:
Warm and gentle hugs,

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#14 Buttons

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Posted 14 October 2010 - 05:34 AM

Hi Sweet, it was good to hear from you - it does seem a long time since we last spoke.

I don't think I'm that brave because the alternative doesn't bare thinking of really & like my hubby says it's best to get it done now before any further damage is caused too the spinal cord. By having it done now there is the chance that some of the nerves & cord may recover & also stop some of the pain & tingling/numbness.

How are you?

Buttons