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CT Myelogram test

31 posts in this topic

I finally had it done last Thursday (after a 4 month wait)!

 

The test went okay. First they removed some fluid from my spine and then replaced that with some dye, he took a number of images and then a harness was strapped around me so that when they tilted the table I wouldn't move, and took more pictures. They also had me face down and then pulled my arms downwards so they could take clear images of my neck - that was quite painful; I felt as if I'd been put on a rack!

 

They then took me for a CT Scan but I had to lay down completely flat and not move so that the dye remained in my spine. After being in the Radiography department for a little over 2 hours I was taken back to the ward where I had to lie flat with 3 pillows for 3 hours and then one pillow for a further 12 hours and during this time had to drink plenty to try to flush the dye out of my system (supposed to stop you from getting severe headaches). I am still suffering with dreadful headaches so have to keep lying down flat again and then they go. My body is also very sore due to be pulled about etc. so have been taking it easy. The doctor decided to do my upper and lower spine because I also have trouble with my lower back, he did say that there was issues with that so it was a good job he'd scanned both.

 

I have to say the test was not as bad as I thought it was going to be in terms of them putting the needle into my spine but the rest was very uncomfortable so I'm relieved it's over with. I saw the consultant the day after and he said he would ring me with the results in a few weeks time letting me know if he is going to be able to help.

 

Buttons

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Wow- what an ordeal. How very medical to tell you to drink lots of fluids and lie flat for 12 hours- as if those two things are not incompatible.

I hope you get good news soon- (hugs)

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Hi Buttons,

 

Oh my goodness you've been through quite an ordeal. I hope it wasn't as painful as it sounds injecting a needle into your spine! Ouch!!!! Please let us know on the results of your tests and best wishes. Gentle hugs :emoticon-hug: . Take care

 

Annie


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

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Hi Buttons

 

I'm glad your CT Mylogram went okay and was not quite as bad as you feared. :)

 

It doesn't sound like it was much fun, though, but at least it's over with now.

 

I do hope the headaches soon go and that you start to feel better. :emoticon-hug:


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hi Buttons

 

Yikes, you've been through the wringer! Glad to hear it is finally over. I also hope your headaches go away and we'll keep our fingers crossed for good news on your results. Take care.


Sending good wishes your way!

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Hi Buttons,

 

As you described it, the test itself didn't sound too bad. But, the aftermath, of having to lay down without moving for so many hours! Unless you were sound asleep, that would get tiring in itself. I'm glad you pulled through it, and hope that the test shows something useful that can be done to improve your health. I hope the headaches from it go away soon, too.


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

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

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Yesterday had an appointment letter to see my consultant in early November so was very surprised when I had a phone call from his secretary asking me to attend his clinic on Monday 4th October for the results of the CT Mylogram. I will be glad to know what is going on at long last.

 

Buttons

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Hello Buttons

 

I'm glad you're going to get the results sooner and we're hoping for good things so keep us informed.

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Buttons,

 

I'm trying to remember if we've had the update on your CT Myelogram results yet, and I'm drawing a blank. Have you heard anything yet?

 

Please forgive me if you've mentioned it and I missed it or forgot.


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

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

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Sorry Shelley,

 

I thought I'd posted but then lots of things have been happening so I mustn't have done.

 

Well I went to his clinic to be told that I have nerve root compression which is affecting my arms /upper body and also spinal cord compression which is beginning to affect my balance, walking etc! He said he felt I needed it operating on but wanted to discuss with four other neurosurgeons (on Friday 8th ) due to it being complex with three main issues so he would ring me after the meeting. He did ring me at home on the Friday to say that they would do a discectomy and fusion using titanium cages at C 4/5, 5/6, 6/7 and that I had bone spurs growing into the spinal canal and the ligaments had thickened due to collapse of discs which was also narrowing the spinal canal! I have decide to have the operation because as the consultant said that it is only going to get worse & it could lead to serious problems with walking etc in future with paralysis.

 

I should be having the operation in four weeks time, he will discuss the operation in more detail then, needless to say I am quite scared and just want to get it over with. The priority is that it stops causing any further damage and the extra will be stopping the back pain and tingling etc. in my arms.

 

Buttons

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Hi Buttons

 

The surgery does sound a bit scary, but at least now you have a date and therefore something to focus on.

 

Hopefully you'll have recovered from the operation in time to be able to enjoy the holiday festivities without the worry of the surgery hanging over you; I do hope so. :)


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hi buttons,

 

As has already been said...you have so much going on and we only want for you to be pain-free and without these horrible compressions and problems that you've had to tolerate for far too long.

 

Here are more {{{{HUGS of COMFORT :emoticon-hug:}}}} which I hope will help calm your surgery fears.

May you feel the true caring and support of your "Family" here, during these days ahead of you.


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Buttons, glad to hear you have completed all tests and are ready to step forward and have the surgery. Please keep all of us informed on your well being during your entire recovery time. Looking forward to hear that all your tingling and balance problems are gone.


Strength and Warmth,

Sheryl

 

Sheryl Doom

ISN Support Specialist

(Retired) ISN Chat Moderator

International Scleroderma Network (ISN)

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Hi Buttons

 

Sorry to hear the results mean surgery but hopefully, in the end, it will give you the relief you so much deserve. Try to keep us updated when you can ok.


Sending good wishes your way!

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Buttons,

 

I know surgery can be scary, I was a mess the months before my kidney transplant, but after it became time for it I was calm and just knew everything would be okay. Your's sounds like a difficult surgery and you will face a long recovery, but the end results will make it all worth it. Try not to worry about it during the waiting period. Make sure you have plenty of help after, don't be afraid to accept people's offers to do things for you, they want to help. Stay strong and keep us updated. I'll be thinking of you.

 

miocean


ISN Artist

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Hi everyone and thanks for the kind words but I received a letter today to say they have rescheduled the operation for the 14th December!

 

They haven't given a reason and I've been trying to find out more but can't get through to the hospital, I am so fed up! I was getting myself geared up because I am so nervous about it and now I will have to wait another 3 weeks! I had the pre-op assessment last week but ended up having to go back for more blood tests. They said there was a problem with the coagulation levels - it took an hour and half to get 4 vials of blood along with the nurse trying 4 times and then calling a doctor and he had 3 goes before finally doing it with just an ordinary syringe. So now I'm black and blue all over my arms. They even had a go in my foot!

 

So feeling pretty miserable now because it looks like I will not be too clever over the coming festivities.

 

Buttons

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Hi Buttons,

 

What a nuisance! No wonder you are fed up - it's especially bad that the new date puts it so close to the holidays. Time to get yourself a swanky new dressing gown and pajamas and just lie on the sofa during the festivities. Let everyone take care of you and you just pretend to be Queen of Winter!

 

I'd hug you, Honey, but I imagine you'd rather have something to throw - here's a virtual teddy to toss. :temper-tantrum:


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Hi Buttons

 

What an absolute pain!! There's nothing worse than gearing yourself up with a date in mind and then being let down so near the actual time. :angry:

 

I'm so sorry; it's also a shame that you've been treated like a human dartboard! Still there is a positive in that you do appear to have another definate date for your operation, which hopefully this time the hospital will be able to stick to.

 

As Jeannie's already sent you something to throw, I'll send you some :flowers: and a :emoticon-hug:


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hello Buttons

 

Foot?! What?!

 

I'm sorry you're surgery has been rescheduled, particularly as you want to get it out of the way. Maybe it's for your benefit? When Ma broke her hip she did so on a Thursday and they made her wait until Saturday to have her operation. It turned out they had done so to put her on the list of the most experienced surgeon.

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Awww Buttons, I'm so sorry. The waiting is the worst in most situations! I hope you can relax, my friend, and do not worry about the festivities, just let everybody take care of you. I have to tell you I got that surgery in 2002. Of course I was healthy then (at least it looks like that). The surgery was on Dec 12 and my Doctor and I did very good,so good I am walking. So be positive, put yourself in a good place mentally, (always helps). Let us know so we can give you a soft hug. I'll keep you and your family in my thoughts, Patty

flowers.gif

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