Spinal Fusion?

[rod44]

I had an appointment with my NS today....

OK he said that I have congenital fusion of vertebra in the lower cervical and upper thoracic spine witch is compressing my spinal cord causing a Syrinx and tethered cord syndrome (TC)...

I see him again on Monday as he wishes to have a case conference with the other doctors who will be part of my treatment team, we will decide where to go from here, he has indicated that my condition is progressing and this is a cause for concern and the only realistic option to stop this is surgery,...I will give a further update after Mondays appointment...

I would like to here from any one with a similar finding or if any one has any input at all it would be gratefully appreciated...

Ray

[rod44]

Thanks Russell, yeah today is good, the cold is getting to me lol but I am managing, the first time I heard of CM and Syringomyelia was after having an MRI scan for vertigo and problems the doctors felt were caused by an inner ear disease....I asked my GP about it after I got the CM DX and she had to look it up in a medical book....not a good start so I can understand your fears and your concern...today I can talk to the Doctors and know when they are trying to fob me off, this is why it is important to learn as much as you can about your illness.....

Ray

[dermarfx]

Ray,
I hope today is a blessed one for you man.......I truly do..russell

[selmaS]

Ray...still sending prayers and my good vibes to u........

"selma"

[rod44]

Hi Kim, I am good today, some days are good others not so good :)

Ray

[redkim]

I hope you're well!  Keep us posted.

[rod44]

Just to update further, the NS has said that "a congenital intradural cyst at the junction of the cervical & thoracic spines causing compression of the spinal cord is the root of my problem", this along with a syrinx was an unusual finding, he proposed to do further investigating to rule out any other congenital abnormality's before proceeding with surgery

Ray

[rod44]

yes I agree, the NS feels as you do that the Syrinx is the primary problem and needs to be drained, He has indicated that there is spinal cord compression. The thoracic canal is he said the narrowest part of the spine and there is no room for the CSF to pass freely due to the issues there.....he also like you say feels the herniation is due to the TC....there is no mention of SB....
when he described the overall condition he used a name that I cannot remember but I will check for the exact term from him in the morning...

He did put my mind at ease after talking to him about the Surgery, I meet the team on monday just to go over things again....

Thanks for your words of encouragement, they mean allot

Ray

[Shane99]

Okay, I see - your primary problem is probably the syrinx right now - which is a pretty big one. It sounds like CM2 to me, with a mild herniation, but I could be wrong.

It sounds like you've had this since birth or early childhood, but only recently discovered it? Do you also have spina bifida?

I know that only your doctor can medically advise you, and only you really know how you are feeling/doing, but if I may, I'd like to point out that you needn't be scared of the surgery and would most likely feel a lot better afterward. Tethered cord can cause serious pain and difficulty in movement, and can be causing nerve damage as well as increasing the herniation of the cerbellur tonsils.

[rod44]

He also said Mild CM of 4mm

[rod44]

Hi Shane, there was no mention of CM2, I had my first appointment on the 10th of November, at that appointment he said I had 7mm Syrinx extending from C5 > T2, he also said I had split cord malformation......and signs of DDD
At yesterdays appointment he said there was Congenital fusion of 3 vertebra, compression of the cord and TC.....I took notes but unfortunately lost them.....I go back on Monday to meat the team who will be dealing with me and my surgery and this time I will keep the notes I take lol....my memory is shocking especially when under stress and man do i get stressed before during and after appointments like this lol.

Ray

[Shane99]

Are they calling it Chiari 2?

[rod44]

lol peas in a pod....

I don't know, he said he is only aware after checking with his peers of 4 cases in Ireland, he had a case many years ago of a young boy who he treated successfully....

[selmaS]

I wonder how rare.....since I also have a fusion.......I guess we r very unusual  ....lol......

[rod44]

Thanks selma, well he made no promises other than to say he would not do any surgery on less he and I are 100% comfortable with it....
He did say it was a very unusual and rare finding.....
Ray

[selmaS]

Hey Ray....well, I also have a congenital fusion and TC...so I find it all very  interesting. Although I do not have a syrinx. But, I do wonder how many with TC have this congenital fusion???

hmmmmmm maybe a research project.......

I pray Monday's appointment keeps the forward momentum ......

and I am so very glad u have a good medical team in place to take care of u.

"selma"