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Brain & Nervous System Disorders Message Board


Brain & Nervous System Disorders Board Index


Hi Jellebeans~

I've been wanting so badly to get on here and respond but I've been struggling the last couple weeks then, I was off to TCI. So I wanted to give you my input on your appointment.

The appointment didn't seem to go well but in actuality, You didn't get shot down but instead, found a Dr to at least listen to you. Thats great news!! So at this point, you'll have to be a bit agressive and make sure he just doesn't drop it there and does help you move forward with this. Sounds like this new Dr might be very helpful. You really just need a Dr in your corner who is willing to have an open mind.

Getting another MRI and a flow study would be very helpful to you. It helps put the pieces of the puzzle together. Also, learning about the other related disorders that could be involved and learning what to look for on your own MRI to get a better understanding. There is just so much more to all of this. I found out that I have retroflexed odontoid and pannus formation.

We went to new York on Sunday. Got back midnight last night. It was such a long day. An MRI at 8 am, then We sat at the Chiari Institute from 11:00 am until 8:30 pm!! Crazy day but they squeezed us in to see the neurosurgeon. I was supposed to only see the neurologist. But it was well worth the wait. The things we learned were amazing!! The retroflexed odontoid bones and pannus formation is actually pinching my spinal cord as well, causing the blockage of CFS fluid. It also affects the heart and breathing so this explained quite a bit. After my MRI and on the way to TCI, I saw this myself on the films. But it wasn't mentioned to me prior. This time they mentioned it.

We also learned that The 1st surgery I has was quite successful and I had alot of improvement. My brain bounced up alot. So now we have decided to go forward with the fusion. He said that my skull is crushing my spine and causing my cord to be kinked in 2 places. One from the pannus formation and also a bulging disk at c5. So if they lift my skull and bolt it up, it should help relieve alot of my symptoms and the 2 things should resolve themselves. That was quite promising to hear.

So, you see, theres so much more that can be going on with this mess. I now have a 0mm chiari because the tethered cord surgery but the other issues still remain. Hopefully doing the fusion, I will not have to get the decompression surgery!! Yeah!!


So I'm gonna hang in there until February vacation because of my daughter and school because I cant drive after. Not sure how I'll manage that one. Last time, they said no driving for 4-6 weeks. It would work if I wait till June but I'm so ready to move forward now!! I want relief so bad.

The one difficult thing is I'm a smoker. They told me that the rods on the fusion will actually grow bone and this process will take up to a year. But smoking slows down the process. He said for my best results I'll need to quit. That is a tough one for me. Cigarettes, sadly are my vice. But he said that if the fusion doesn't take and I had to do it all over again, the success rate each time its done is lowered. So I guess I'm going to have to quit for my health and recovery. He said "quit for a year and you can go back if you want but Its really important that you stop to grow new bone" So, one more obstacle to overcome:D

I wanted to share this here so that all of you can see the other things that can go on with chiari. So when Dr's say its a small herniation, they are not looking at all the other things that can be happening as well.

Talking to a chiari specialist is just an amazing experience!! They tell you where you are experiencing symptoms from what they see on the MRI. What part of your body it is affecting, where your pain is and the best part is, they help you understand why you feel the way you do. A visit to a chiari specialist is worth any amount of money, in my opinion. Even if you know that surgery will not be an option for you. Because it defines this illness and clarifies everything.

I hope everyone is doing well. I have lots to do today after being gone for 2 days and little energy to accomplish it all so I'll be talking to you very soon!!

Jellebeans, hang in there!! Theres hope for you;) And Scout, if your reading, a great big hello to you my friend!!

Take care

Cindy





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