Sydney was released from the hospital on Sunday.. They had her see a rheumatologist doctor, maybe thinking their was other reasons why her symptoms are occurring. She sees him in a week again to go over the results.. She is also anemic so they put 3 bags of iron in her to boost up her energy, because right now she has none because of the pain. This NS is trying to find something else that might be doing this, but is still positive that the Chiari is causing this... As she was admitted she saw a neuerosugern at the hospital and he said he saw her MRI and she does have Chiari but it is to small to be causing all these problems.. Her blood pressure is still high, they are blaming the pain. At one point her heart rate was 120.. Just hoping soon they figure it all out! Just kinda scared that we've had 4 people tell us that this "chiari" isn't the problem..
But now they have to monitor her Syrinx in her spine.. Which I would love to know why she has this? I mean a normal person shouldn't have a fluid filled cavity in her spinal cord. The neurosurgeon she is seeing says its from the chiari, and the others are saying it's normal to have these...
Her symptoms are--
Off Balance, can't walk straight.. Nausea and throwing up..
Pain in the back of her neck (stabbing and throbbing), and tension headaches.
Tight throat and dizziness. When coughing she gets a immediate headache..
Really wanting her to get surgery if she has to have surgery before the start of the year so she can start fresh of the new year..
This doctor is not just willing to go and have this scary surgery he wants to make sure this will help her..
Any comments, please feel free to tell me! I would love to hear them!
I don't understand the difference in NS. My grandaughter had no real symptoms and her chiari was found accidentally. While it was16 mm and the Cine MRI did show some fluid restriction, it also showed a "tiny" syrinx. Her NS said it was because of the syrinx that she needed surgery and needed it NOW. She said if not for the syrinx she probably could just be monitored. I would think with all her symptoms and the presence of a syrinx, surgery would be indicated.
A syrinx is a fluid filled sack inside your spinal column. I included a definition. They can in some cases harm the spinal column. It doesn't always mean there is a total CSF Blockage & many times they go away on their own. They can be very serious & cause additional neurological symptoms. I am sure your daughter's NS is keeping an eye on it. What medications do they have Sydney on? Sometimes medication & anxiety raises your heart rate along with pain.
Please let us know how she is doing. All of our Members are important, but when a young person suffers our hearts break because we understand. That goes for you to PDrum.
As Tom Petty once said; "The waiting is the hardest part." I cannot blame the neurosurgeon who is trying to rule EVERYTHING else out. My PCP and neurosurgeon tag-teamed to do the same thing. At the same time, I empathize because it meant me being along in a dark and quiet room with constant headache and brutal fatigue and parathesia for 2 1/2 years. It sounds like the other doctors in the hospital who denied the Chiari don't know much about it - sorry. Since Sydney has a syrinx, there is no way the Chiari is "too small". Pain in conjunction with being constantly dismissed causes anxiety and frustration which triggers the flight, fright, or freeze mechanism in our brain and raises the heart rate. It can be a compounding event - more pain, more dissmissal - higher heart rate. It is just a neurobiological reality. Then the increased heart rate raises the CSF pressure and causes more pain. I hope that they try to break the cycle with some anxiety medication like clonazapam or valium. Ideally, I think that you would want to go see a Chiari specialist in another city but that would take a lot of time to go through getting an appointment, an evaluation, and then getting on the surgery schedule. Plus, it can be very costly and an insurance nightmare. Hence, jumping through the hoops of the neurosurgeon who wants to rule everything else out might be the best option - though a crummy one. My prayers have been and are with you and, especially, Sydney. I feel so sad for the both of you. God Bless - Fr. D