Hello all, I was diagnosed with Chiari 1 Malformation 6 years ago at 16 years old. I have been being treated by the same neurologist since my diagnosis. I was pretty fortunate when I was diagnosed. I'd experience headaches, dizziness and nausea, but I was able to live a normal, fully functional life. I would only get headaches 3-4 days out of most weeks. That is up until recently. In March of this year I returned to my neurologist with worsening symptoms. Headaches had begun to occur 5-6 days out of the week.The nausea and dizziness have become a regular thing, but I started experiencing problems with my vision (blurring, spots, etc.), sensitivity to light and sound (which I had never had), and an overall feeling of general exhaustion constantly. He sent me for a new MRI which found that nothing has changed. I have an 8.2mm malformation. My cerebellar tonsils are mildly beaked. No syrinx, no focal disc herniation, no central canal stenosis, no spinal cord issues or other issues. He put me on a new herbal supplement and diet that helped for a little while, but after a few weeks after my last appointment (where he said I wouldn't need to see him for six months) my symptoms returned with full force and then some. I am now experiencing a constant headache with neck pain with little to no relief. Rather than multiple headaches it feels like my headache is just dragging from one day to the next. I am constantly nauseous and dizzy. I've been experiencing frequent vertigo, I can't go outside without sunglasses, bright lights and loud noises kill me, I've been experiencing weakness or numbness in my arms and occasionally my legs. My ears feel full of water, my balance is completely off, ringing and buzzing in my ears, and all sortsof other symptoms. I have been unable to make it through my shifts (I work 10 hour shifts on my feet), and once I get home I'm completely exhausted. My fiance is always taking care of me as soon as I get home. I can't cook, I can't clean, I'm scared to even shower alone! After telling my neurologist this he sent me for a cat scan, which I went for today and am still waiting on the results. I can't get into his office until the end of October. I literally feel like I can't even make it through work.
After doing lots of research and reading what you guys have to say, I am realizing that my neurologist is treating me for migraines, not Chiari malformation. He has not checked for any of the problems that can be associated with Chiari malformation or told me anything about the flow of my CSF. ;
So after my lengthy description of what I'm feeling, my questios are this:what questions should I have for him? What tests should I have him run? Any other suggestions?
I feel like he hasn't properly informed me about my Chiari Malformation and like I don't know enough about it!
Ask for a CFS flow study and that shows if your flow to the brain is inhibited! My son had 2 neuros tell him it wasn't bad but the one we convinced did the surgery and the actual problem was much worse than the mri showed.
Amanda, don't feel alone. My husband had every one of your symptoms. I don't see how you can even work! My husband had to wear sunglasses inside & out & kept all the blinds closed. It sounded like a hairdryer was stuck on in his ears! He was dizzy, off balance & saw spots & beautiful colors floating across his eyes. Of course he had the horrible headache, neck & pain between his shoulder blades. No pain pills helped. The Dr prescribed fiorinol for the headaches, but didn't help much. Some help was putting an ice pack at the base of his scull. When it got really bad, he'd go to ER & get 2-3 bags of normal saline IV. THAT'S ALL! & he would feel great in about an hour. He had all the test & had a cerebral spinal fluid flow study (a type of MRI) It showed a flow obstruction so he had the decompression surgery. That helped at first then the patch sprung a leak! Drained fluid off for about a month hoping it would seal on its on , bit it didn't so he had another decompression surgery! Then a stich was left in & got infected & had to have another surgery! In recovery room, the O2 tubing was stuck to his eyeball so he had to have a cornea transplant. All within a year. Was hell! So we feel pretty much like Chiari experts! Lol if your Dr won't do a csf flow study, find a Dr that teats Chiarians. If you have any questions you can email me.
Oh yeah, for the nausea… the best thing is zophran that dissolves under your tongue. Works fast & helps. Some insurance companies give you trouble about filling it. They use it for cancer patients but we fought enough, we got it. Stay hydrated & drinks lots of water. Basically acts like the IV. Hydrates you so much I think your brain floats up enough to give some relief.
Amanda, you need to seek a neurosurgeon that specialized in Chiari. The neurologist isn't doing you justice and you should move on to a Chiari specialist. Your symptoms sound just like my sons before surgery. If you need help finding a good Neurosurgeon in your area please let me know!
Ask for a CFS flow study and that shows if your flow to the brain is inhibited! My son had 2 neuros tell him it wasn't bad but the one we convinced did the surgery and the actual problem was much worse than the mri showed.
Thank you for the advice! There is a neurosurgeon that works out of a hospital near me that I have heard many good things about from other Chiarians. I have just been a bit nervous to take the step. But the worse and worse I feel the more I am convinced that I really should go!
Jeri said:
Amanda, don't feel alone. My husband had every one of your symptoms. I don't see how you can even work! My husband had to wear sunglasses inside & out & kept all the blinds closed. It sounded like a hairdryer was stuck on in his ears! He was dizzy, off balance & saw spots & beautiful colors floating across his eyes. Of course he had the horrible headache, neck & pain between his shoulder blades. No pain pills helped. The Dr prescribed fiorinol for the headaches, but didn't help much. Some help was putting an ice pack at the base of his scull. When it got really bad, he'd go to ER & get 2-3 bags of normal saline IV. THAT'S ALL! & he would feel great in about an hour. He had all the test & had a cerebral spinal fluid flow study (a type of MRI) It showed a flow obstruction so he had the decompression surgery. That helped at first then the patch sprung a leak! Drained fluid off for about a month hoping it would seal on its on , bit it didn't so he had another decompression surgery! Then a stich was left in & got infected & had to have another surgery! In recovery room, the O2 tubing was stuck to his eyeball so he had to have a cornea transplant. All within a year. Was hell! So we feel pretty much like Chiari experts! Lol if your Dr won't do a csf flow study, find a Dr that teats Chiarians. If you have any questions you can email me.
Thank you Toni! Some of my fellow Chiarians on Facebook have suggested Dr. Klinge in Rhode Island for me.
Toni said:
Amanda, you need to seek a neurosurgeon that specialized in Chiari. The neurologist isn't doing you justice and you should move on to a Chiari specialist. Your symptoms sound just like my sons before surgery. If you need help finding a good Neurosurgeon in your area please let me know!
Thank you Toni! Some of my fellow Chiarians on Facebook have suggested Dr. Klinge in Rhode Island for me.
Toni said:
Amanda, you need to seek a neurosurgeon that specialized in Chiari. The neurologist isn't doing you justice and you should move on to a Chiari specialist. Your symptoms sound just like my sons before surgery. If you need help finding a good Neurosurgeon in your area please let me know!