Hi I had issues similar to this b4 my surgery....none post op that I recall....Have u had surgery at this point?
Many of us with Chiari do have visual disturbances and they range from floaters to wavy vision (like the way heat looks off a road) blank spots and more.....
Have u been to a neuro optho to be checked or a reg eye Dr?
Hi, thank you for your response. I had surgery back in June 2003.. a little over 10 years now. I have been trying to get in to see my neuro, to set up my MRI for this year, but that seems to be taking forever. I have been having more frequent headaches and been having a lot of trouble sleeping along with my arm going numb (like it did pre-op) so, I been worried that the syrinx is back.. or something else happened.. and then the spot came back (different area of same eye) so, I wondered if maybe that was Chiari related, as I wait for my appointment.
I think I just blabbed a confusing paragragh.. sorry. Like I said, I been having trouble sleeping.
Hi. I'm not sure if what I have to say will help, but I will babble a short paragraph. I have Chiari and a Syrinx. I don't have floaters but I have a "fogginess" to my vision that is 24/7 now. The fogginess in my eyes radiates to my ears. I feel like I am under water and that is now 24/7. My doctors prescribed my Ambien to sleep, which has worked for years, but for the last week, nothing helps me sleep. I am up all day and all night. I am lucky to get an hour or two of sleep a night. I have bad headaches and severe pain between my shoulder blades. I don't know what is Chiari and what is the syrinx. May I ask what type of surgery you had and what they did with your syrinx (if anything)?
I have never had a Cine MRI so I'm not sure if that can be a deciding factor in anything. They say sometimes the pain between your shoulder blades can be related to the syrinx...it's called the "Cape Effect". Did you have that prior to your surgery?
I think my babbling has you beat by a few sentences :)
I was able to understand what u were saying....and it is possible that u may have scar tissue causing a CSF obstruction...so a MRI is deff something u want to do and compare to ur pre and post op MRI's u had 10 yrs ago.
A syrinx can grow back if there is an obstruction, so a bulging disk, or scar tissue could be the culprit.
And yes, this would cause the same symptoms as b4 surgery.
I'm sorry you're having sleep issues as well.
I had decompression surgery, and my syrinx collapsed as a result.. but, for the past few years with my annual MRI they have only ordered brain.. no neck or cervical spine. I am waiting on the Neuro's office to call me back (they always seem to have some kind of issue..). I am going to make sure they do full scans this time (even though I am severely claustrophobic). I want to find out what's going on.. and I am hoping nothing more is wrong.. Not sure how much more stress I can take from Chiari.. it's exhausting.
Good luck in getting the MRI's of the cervical spine.....have u had one of the thoracic and lumbar spine too? May be worth looking at again and compare to the older studies.
Yes, chiari is very exhausting....it is life altering....but we r strong, we can get thru this with help from others....hang in there <3
Thank you.. after long run around, they finally made me an appointment for next Tuesday! I have only had MRI's of my brain, neck and cervical spine.. I will ask him about thoracic and lumbar as well (thank you for the suggestion) and see what he says.
I do have a question for you all.. outside of the eyes. Last year.. out of the blue I just felt warm all over and I seriously thought I was going to pass out. I checked everything.. blood pressure, blood sugar, heart rate.. everything was fine (heart rate a little high from being scared) I went to my neuro and he thought maybe I had a seizure.. because I had those spells a few times after the first one. I had an EEG and it came back "normal" but he put me on an anti-seizure medicine anyway. It never helped.. I still have the spells now and then. My questions is.. does anyone have this? Or know of any reasons it's happening? Something I can suggest to my neuro?
Yes I have those spells but I have profuse sweating, and so hot I can hardly stand it. I have almost fainted many times!!!! I feel really bad most of the time. I try to keep going pushing myself to the limit which prob. makes it worse. I have had lesions all over my body b4 and have bad scars. I have had eye problems for years and am having blurry vision, sort of seeing shadows, which sounds crazy but its true. I had cytomegalo virus some years ago and wonder if this caused the mctd. I know I am rambling but there is so much wrong with me , I am not depressed just frustrated after all these years. This started in 1986. Help Please
What is Sprinx? Never heard of it b4. Just this week found out what Chiari is.
Hi, yes it is possible to have seizures with Chiari, even develop epilepsy.....that is not common but it has happened.
What I think is going on tho is just a disturbance to the signals...this is a huge part of what Chiari does, we have an obstruction and many times compression of the spinal cord and brain stem, signals do not travel correctly in the spinal cord as a result those signals get mixed up, and mis directed so we have all these weird symptoms and sensations. So nething goes really....
I understand ur frustrations I went to Drs as a child and thru high school, they said "growing pains" anxiety and sent me to a shrink, I was not DX'd until I was 48....so, yeah, I understand how u feel....keep pushing and good Luck Tuesday <3
Hi a syrinx or syringomyelia is a related condition to Chiari.
With Chiari our skull is malformed and causes the cerebral tonsils to herniate,....these herniated tonsils can block CSF flow, when this happens we tend to get odd sensations and symptoms, HA's etc....but the longer the obstruction is there a syrinx can form...a syrinx is a cyst like cavity that grows and fills with the CSF that is blocked....some can grow slowly over time, or rapidly and cause many issues as the syrinx can compress nerves in the spinal cord....left untreated can also lead to perm nerve damage.
The decompression surgery is done to restore CSF flow and slow progression if a syrinx is present it is hoped it will shrink post op.
Hope that helps.