My sons condition has gone downhill in last 2 days. He was supposed to have MRI tomorrow, but driving to ER now. Has had severe dizziness, neck pain, migraine & feels like someone’s standing on his neck. Also buzzing like a fly in his ears. No relief from Motrin, excedrin… Nothing works. It’s unreal. Just reaching out for prayers & support. I hope his spinal MRI doesn’t show anything worse than what we already know. When will this nightmare end?:(… Soo worried!!
Hi, I’m sorry to hear this news. My thoughts are with you and your son. Hopefully they were able to provide him with pain relief. Please let us know how the ER visit went and news on MRI.
Hugs,
Laurie
Brian's mom and Brian, you are both in my thoughts. I hope you got some relief from the ER. Good luck with the MRI and hope it provides a useful insight for you and your doctors. Let us know how you get on. Kindest, Jules
Thinking of you and your son, Brian's mom, and sending positive thoughts your way. Please keep us posted.
So finally home & more confused than ever… My son is having severe neck spasms- unrelated to his Chiari? The NS recommended trying Valium now & neurontin now for his neck pain & migraines. Spinal MRI looked great! Very thankful no syrinx!:)… What confuses me is this… He may have pseudo tumor cerebri syndrome? This happens to a small percentage of patients post decompression. This causes high intracranial pressure & return of Chiari symptoms . He went thru big growth of his brain & it is tightly compacted. There is very small space for CSF to flow… But it is getting thru somehow. Again so thankful spinal cord looks good:) Treatment options are another decompression- not recommended- probably will not relieve ringing in ears & symptoms… Lumbar puncture to check pressure-may further herniate brain & then what? There is only teeny spot for brain to move. That could totally cut flow of CSF. Treatment option would then be diuretics? … He is 12… This stinks! So now we are trying med options & soft cervical collar & update NS next week… His case is to be presented & discussed next week with a team. I was looking for magic bullet that just doesn’t exist. So I have ordered memory foam pillows for him & just trying to provide him with some relief… Not sure what to really do… Only exercise he can do is ride exercise bike or swim… His dreams are gone of lifting weights & doing what his older brothers can do. I just still don’t understand why he has to suffer again?.. I am also making appt with new neurologist who I hope will be supportive & understanding of my sons condition.
I appreciate the support I have gotten from this group & any suggestions appreciated. Thanks:)
Brians mom, I too wish for that magic bullet for your son and all Chiarians. Until then all I can say is my thoughts are with you and hope that you get some relief for him soon. Exercise bike and swimming are still good exercise so maybe he can excel at this while his brothers lift the weights instead .... maybe encourage him to find a cyclying or swimming champion that can become his idol. A young leukaemia sufferer I know in the Uk has recently just met with his favourite football team and this was arranged by his father just writing to the club. Wonder if anything like this is possible to lift Brian's spirits? Kindest, Jules
Thanks for listening to my rant Jules:) You have great suggestions! I appreciate the support & kind words :))
I’m so sorry to hear this. But I too know all to well these symptoms. Mine started three months ago with severe headaches, severe spinal neck shoulder and arm pain. Then four days ago I felt my feet go dumb and my ears ring and dizzy… I went to the ER said my chiari was flaring up. But I also had fever without sign of infection.
Hi Andrea. Thanks For your support! I recommend that you get a 2nd or even 3rd opinion. That is what we are doing. My sons case we were told is complicated. We have to make an educated decision & can only do that by getting information… My sons neurologist basically ignored his complaints for 9 months… Now we are on a path to find a solution for symptom relief. Good luck to you & hang in there!!