Hi everyone! I was diagnosed with a chiari malformation and pseudotumor cerebri in October of 2015. I'm on medication for the pseudotumor and it has worked as far as my swollen optic nerves. I'm being treated by neuro opthamologist and a neurologist but they both feel that since the chiari is only 5 mm it doesn't need decompression. In March I started getting these new symptoms of dizziness, vertigo, headache worse when bending over or coughing. I also have pain in my eyeballs that get worse when I move them or look at lights. My headaches are worse and are coming more often. I saw my neurologist on Wednesday and he doesn't seem to think that my symptoms now are from the pseudotumor but something else. All my medical records are showing that the chiari malformation is active and confirmed. So could these new symptoms be from the chiari malformation? Does anyone experience these symptoms? Thanks for letting me into the group!
Of course Chiari folk have these symptoms! Hopefully, you are on track to get all the medical work-up that you need to organize your treatment plan. Along your journey, you are welcome to review my posting under "Chiari Info For Members" for dizziness and vertigo. If you fall into that category, those exercises work great, are free, and do not have side effects. What more could you ask for. You are welcome to ask any questions that you might have.
Good luck as you search out answers
Chiari goes like this: 5mm is a guideline. 2mm herniation can have worse symptoms than 12mm hernition, although the larger the herniation, the more likely it is to cause symptoms. There is no hard science yet about Chiari. I too have 5-6mm herniation only on one side. I don't have much of headaches, but I have many other symptoms that are so bad, I can't work. I saw a neurologist a few months ago and I don't think she had any Idea about what is going on with me, she ordered MRI and didn't even want to see me after I get the results. So I went to a neurosurgeon. He said, my back pain is caused by the tonsil pressing to the brainstem, and the pressure in my head also is consistent with the Chiari, but he would only preform surgey if he is 100% sure, there is disruption of csf flow caused by the herniation.
I also want to mention, everyones Chiari is different. In my opinion it would make sense for you to hear out what a NS has to say about your case. I think it would answer some important questions you have.
Hope you find answers soon!:)
Kristine
Thanks for the info. I have heard that the size of the herniation doesn't matter when it comes to symptoms, I just wasn't sure if my onset of the new symptoms were from the csf pressure or the chiari since I'm feeling worse now than at diagnosis. I was actually diagnosed with the chiari first after I had a mri because I thought I had pink eye or allergies but the white part of my eye was swelling over the iris. My husband took me to the emergency eye hospital and they saw that my optic nerves were swollen so they sent me by ambulance to the main hospital for MRI. The MRI showed the chiari and the fluid so the doctor there prescribed diamox and referred me to a neuro opthamologist and he is the one that diagnosed the pseudotumor cerebri and referred me to a neurologist. My neuro opthamologist told me that he didn't think my new symptoms were related to the fluid but my vision is blurry and my peripheral vision is worse now than at diagnosis. He thinks that I have a fistula and I'm now being referred to a ocular trauma surgeon but he's booked until June. My neuro just did some lab work and added 4 more meds and I still have to take the dreaded diamox which was just increased again. He wants me to come back in a month and we will go from there. I think that a neuro surgeon would answer my questions about the chiari but with my insurance, I have to be referred and since they are just shrugging about the chiari being The Cause, I don't have a referral :(. Sorry so long, but I'm just so frustrated with all this and just want my life back. I can't function like I used to and I'm a mother of a teenager and twin 9 year old boys, they really need to figure this out and fix me! Thanks so much for letting me gripe about all this!
I hope the best for you! Thanks again :)
Thanks for the info. I hope I am the right track now, I was just wondering if my onset of new symptoms were related to the csf pressure or the chiari. I get dizzy after just looking down at something, if I have to move my head, I get dizzy. If I walk to the bathroom or put laundry in the dryer, I have the vertigo and have to sit down. Also if I stand up to fast, I think that I may pass out. All this happens even if I don't have a headache. Do you have any problems with your vision like blurry vision and light sensitivity?
Best wishes to you and thanks again :)
gabby jazzypants said:
Of course Chiari folk have these symptoms! Hopefully, you are on track to get all the medical work-up that you need to organize your treatment plan. Along your journey, you are welcome to review my posting under "Chiari Info For Members" for dizziness and vertigo. If you fall into that category, those exercises work great, are free, and do not have side effects. What more could you ask for. You are welcome to ask any questions that you might have.
Good luck as you search out answers
Well, it's not at all a bad thing they are looking in all the directions they have some suspicions in. I think you are lucky to be checked for a lot of things. I know this can take a long time and I know sick people just want to get better sooner. I'm in the same place. But with things like Chiari it's better not to rush things. Making the right diagnosis in these cases can be really tricky, and I'm sure not you, not me, not anyone would be happy to go through a brain surgery, not get better and a while after find out something else is causing all the symptoms. Go with your doctors now. If their treatments arent working, or something isn't making sense to you, continue asking for the NS referral. Or, you can go for 2nd or 3rd opinion.
About csf pressure or Chiari causing the symptoms- Chiari can cause the csf pressure.
Hi Charitymac
Vision problems and light sensitivity are definitely a concern. Sunglasses and a hat when outside is my uniform. With blurry vision, surgery helped but I still needed to do vision therapy exercises.
The dizziness with head movementsthat you mention is familiar. The exercises in the "Chiari info for members" has fixed that up.