Chiari I Malformation & Meningioma

[Lottida]

Hi I am 41yrs old & 4 weeks ago developed right ear fullness, tinnitus in right ear, severe migraines, swelling in hands with tingling & constant off balance with occasional spinning/dizziness.  MRI showed 8mm Chiari I Malformation & a 1cm incidental Meningioma in right Parietal region.  I have received 3 Intratympanic injections for hearing loss to right ear & took 81 steroids pills over a 10 day regimen due MD thinks I have Meniere's disease.  I have never had ear problems in the past which usually contributes to Meniere's disease & continue to have constant headaches/migraines with pressure to base of neck despite all of the steroids.  I am a registered nurse with some knowledge of Chiari since my husband acutally had his Chiari decompressed in 1997.  I am now having blurred vision & was told by Opthamologist that both optic nerves are crowded (I'm kind of freaking since my husband is blind in left eye from his Chiari).  I now need glasses for vision loss too.  I had an eval by the neurosurgeon that decompressed my husband's & he was so rude I was stunned.  He brushed me off as though I was crazy to think that something was wrong(he actually said that Chiari & Meningioma did not need to be monitored).  I have been off of work for going on 5 weeks due to I can't drive with dizziness(nurse that drives a lot) & really haven't seen any improvement in symptoms other than hearing.  I have multiple tests scheduled at ENT for hearing/balance/dizziness tomorrow.  I'm really concerned about seizures/strokes with having Meningioma tumor & Chiari since my brain is compressed already.  Anyone ever heard of someone having both of these or any idea of a good doctor close to Louisiana?

[Jlinch]

Did you go see Dr Ware or Dr Soreau?

[selmaS]

@Jlinch- since this is an older thread the member you are addressing may no longer be active here...try starting a new post to ask questions of current members.

[Lottida]

Sorry that is the nurse in me.  Sx means surgery in the nursing field here.  I will definitely take your advice & travel to find a specialist if necessary.  Love this forum btw.....very informative & accurate information.

[selmaS]

  Off hand I do not know of any Drs in that area, I am not from there but go from what is said by other known Chiari specialists.....

By SX do you mean symptoms or surgery as SX is often meant as an abbreviation for symptoms.....

Just bcuz a Dr does surgery or has does not mean they are the best to go to, or if they are close to home make it a good choice....you will want a Dr that knows ALL related conditions....and checks you for them B4 surgery is even considered.

So, you found our list> keep in mind it is not a referral nor an endorsement it is meant to be used as a tool to research Drs and is meant as a starting point.

The symptoms you have I also had with out the meningioma...and I agree you will need it looked at by someone that is looking at both the meningioma and Chiari.

[Lottida]

Selma thank you for responding.  And yes it seems to be very rare for husband & wife to have Chiari.  My husband also had Syringomyelia with his & is actually having some of the issues reoccurring within the last year or so.  Mostly headaches again.  He continues with numbness to right arm/back & chronic pain to neck/shoulders/arms/shoulder blades for which he is on pain meds.  His MD was not actually Chiari specialist but had done the sx in his training.   He has not had any further MRI of brain in the last 4yrs.  To answer your question as to if a CINE MRI was done on myself the answer is no.  No other testing was done other than hearing test.  I constantly have pressure feeling from base of neck upwards toward crown of head which worsens with laughing, bending or sneezing.  Migraines get so bad that it feels like my head will explode at times.  My insurance will only cover 6 Imitrex nasal sprays monthly which actually helps the migraine, but not enough of it to last a month.  Biggest problem other than the migraines are the dizziness/off balance feelings that never seem to resolve, so driving thus far has been off limits.  I just feel hopeless at times.  I am going to ENT for balance/coordination testing today & will request referral to either Dr. Soreau or Dr. Marcus Ware which were both listed on Chiari specialist list that I found on internet (I couldn't find list on this forum at first).  I did not see Dr. Marcus Ware on this forum list so not sure if he is specialist or not (he is located at Ochsner Medical Center in New Orleans, LA).   I am willing to travel if necessary to get this taken care of, because my job automatically terminates after 6 months out of work.  Any idea if people with Chiari & Meningioma require sx?  Just seems dangerous if Meningioma starts to grow with brain already herniating 8mm.

[selmaS]

Hi and welcome to the Chiari forum.

I am stunned and surprised to say you are the first married couple that both have a Chiari DX.....I have heard of it in families....but never a married couple.

That aside, you said your DH had surgery in '97.....May I ask how he is doing outside of the vision issue you already mentioned?

Do you know if the Dr that did your DH's surgery also ruled out ALL related conditions as well?....And is that Dr considered a true Chiari specialist?

We do have a list of Drs for you to use to research Drs.....but many of do need to travel and you may find that as well....

As far as having both, yes we have had members that had meningioma's as well as Chiari...and several mis-DX'd with Meniere's.

Vision issues do develop when there is sufficient CSF that builds up...a related condition IIH can also be a cause.

Did this Dr you saw, at least do a CINE MRI to rule out an obstruction, or check for Syringomyelia?......