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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.

 

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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

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

International Scleroderma Network (ISN)

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