Hello
I have had another letter stating…
Ectopia of cerebellar tonsils reaching caudally approximately 15mm beneath the level of the foramen magnum with obliteration of foramen magnum, without evidence of cervical syrinx and probably some inferior herniation of the brainstem/medull oblongata itself.
Your MRI cerebrospinal fluid flow shows preserved but significantly reduced anterior flow at level of the foramen magnum and no flow posteriorly at the level of the foramen magnum.
My appointment with neurosurgeon isn’t until the 24th April, which I understand must be that it isn’t urgent. But I wondered if anyone can ‘translate’ for me - I don’t understand the letter - do i have restricted and blocked csf?
Would surgery be required? I want to go to my appointment understanding this a little more so I can make an informed choice. I just want to do whatever is in my best interests and best for my long term health. But i don’t know what that is!
Thank you, and sorry for the continual posts but I feel so stupid as I’m totally clueless!
Amy xxx
Your not getting into the doctor until April 24th has nothing to do with your condition. Your condition is in and of itself. Have notes of signs and symptoms, and your past health history. Call to double check and make certain that MRI results have been sent to the doctor’s office; or better yet bring them yourself.
Go online and research the procedure, or not. Recovery takes time so do not overdo if you have to have surgery. If you have surgery it is important to have a family member or friend there when you wake up.
Don’t speculate at this point in time. Just go in prepared with information, and know that if you have surgery it has helped many of us.
Best to you always!
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Thank you so much for your advice. So you are 9 years post op? And have you had a good recovery and reduction in symptoms? Xxx
Sorry for late response. Life has been busy!
I did very well for a number of years and then 2 years ago I pushed it after graduating from college. I took on riding bike and loved my rides the longer they became; the challenge was so ego building.
Now, my sensory system of my brain is malfunctioning and no surgery can help. The Chiari is fine I have good flow at the back of the brain, which the decompression provided.
So, I have found that since I was born with this issue, the crowding of the brain during early development can cause other side related issues.
Instead of a general family practitioner I now go to a doctor of internal medicine. They look into your health more deeply and are willing to investigate for health improvements. I am now taking Duloxetine a generic form of Cymbalta and am able to feel the fine definition of my lower extremities.
I am to not over exercise per my doctor at the Mayo Clinic in Minnesota; as it will worsen my loss of motor function stability. I am okay with that; well I have been a bit saddened by the news.
Life goes on though and I am far healthier still, post op, than I was before my decompression.