My First NS Appointment

General
#1

I went with my MRI from 2006, 2009,2010, and the most current 2013. I was diagnosed with MS in 2009, that is why I have all the MRI's. I wasn't told about chiari until 2010 when I had an MRI in Buffalo NY. I wondered if the Chiari developed after my LP (done in 2009) since no other MRI report stated I had Chiari. I wouldn't have seen a NS about this had my hearing in my right ear not diminished overnight -- I've had ringing in my ears since 2006 (reason for the first MRI) but it didn't affect my hearing. The ringing is so loud in my right ear that I have decreased hearing and was told by an ENT to get a hearing aid. I also have a mild ache at the base of my skull but it does not increase with bending over, coughing, etc..... This just started about 10 days ago.

The neurosurgeon said "yes you have chiari, it isn't important how low the tonsils are. I could do surgery but I can't guarantee your hearing would return and I can't guarantee you wouldn't develop other unwanted symptoms from the surgery." He said he does surgery when the patient has a syrnix (I'm sure I spelled that wrong) causing problems or the chiari itself is causing debilitating problems. I thought maybe surgery was done before you developed many symptoms, you know to try to prevent symptoms. He said no.

He told me to come back if I develop more symptoms. I guess I will live with the hearing loss. I guess I will be spending my next $3,000.00 on a hearing aid.

It really stinks having MS and Chiari. I'm not sure how I will tell what is causing the symptoms. The NS did say it is probably the Chiari causing the loud ringing/hearing loss. I agree as the neurologist said MS does not cause hearing loss especially permanent. If it does affect the hearing it usually comes back.

If anyone that has experience with Chiari does not think the response the NS gave me is accurate please speak up. I'm not sure if I should go for a second opinion or just leave it alone until I accumulate more symptoms. I get MRI's annually due to MS so I will be monitored for syrnixs and such.

Thanks.

Melissa

#2

I agree with Emmaline- often MS is a diagnosis of exclusion so everything you have could be Chiari. if your symptoms correlate with symptoms on the list then I would do my best to see a Chiari specialist. If you have a diagnosis of Ms then i am assuming you already have pretty debilitating symptoms so I would go see someone who truly understands all the nuances of Chiari to be sure that MS is an accurate diagnosis.

#3

It never hurts to get a second opinion, if you ever feel slightly uneasy get a second third fourth opinion. It’s your health and body

#4

The NS who has performed many chiari surgeries and is the only noted one in Pittsburgh as a chiari specialist is who I saw. I had optic neuritis in 2009, that is not a symptom of Chiari but is of MS. The only symptom of Chiari that I have in the ringing ears/hearing loss. Other than that nothing. I also had greater than 6 Obands in my CSF which is not present with Chiari but is present in MS. I had the LP before I knew I had Chiari, I know it is contraindicated. So other than being visually impaired (one eye) and hearing impaired (one ear) I don't have other symptoms. I actually exercise 6 days per week which consists of running 4-5 miles and a 1 hr spin class or just running 8-10 miles. I lift light weights too. This is something I have been doing for years and won't give it up until I can't do it anymore. Everyday I'm thankful that I can run therefore I do. I think it benefits my health also. The NS told me it was fine to do everything that I did before but to avoid whip lash and chiropractors.

I just don't want everyone here to think I'm extremely disabled due to my dual diagnosis. I understand that my future will probably have many obstacles and issues but I will deal with it as it comes.

Thank you for all your replies. I just don't know if doing nothing for Chiari until you become very symptomatic is the normal.