Does anyone get this symptom?

[Devin215]

Hi Everyone,
I just wanted to run this by anyone who may have experienced this. I was on a plane over the weekend. On both flights to and from as we were descending I got excruciating pain in both my ears more in my left than my right. Has anyone had this happen? It has happened on another flight also but that was before I was diagnosed with the Chiari and I just brushed it off. Later on just before my diagnosis in a physical I found out that my Ear drum had ruptured...Also to give you an update I still have not scheduled my recommended surgery. I decided before I do it I want more of a full work up. As of now my NS only has MRI Images down to C5 of my neck. I am extremely frustrated because I called him and asked him to do an MRI of my spine also just to be sure they don't overlook anything and he told me he is not a diagnostic doctor that I need to see my regular doctor to talk to them about doing the spinal MRI. SO I just sent a message to my regular doctor to talk to him even though he has been un-responsive to me more recently.  The NS got a bit testy with me too he said if he sees a problem all he does is fix it. I just want to be as informed and through as possible before I let them cut me open. Any Advice anyone?? This NS IS a specialist for my area....Why is he being rude when I ask for more backup?

[Shelby657]

Hi Devin,

Anytime a Dr. refuses to get the complete picture before a major surgery, it's time to get another opinion. I am in that process right now, and my doc at northwestern is covering all the bases. Just think it is good sense to get that second opinion, cause I don't know yet how many my guy has done.

I have 2 fx'd cervical vertebrae, and a stenosis in my lower back. I can bet that the spine guy at NW will want another set of pics cause it's been 3 years since the last full spine series. If the chiari has progressed, then there may have been changes here as well.

Good luck with everything and I will be watching to see how things go. You have to be your own best advocate, cause you are the one living with this!

Shelby

Shelby

[selmaS]

Hi Devin.

Yes I do know of Dr Won...one of our members had surgery with him.
I guess u need to find a NL to do the detective work for ur too busy NS......

U may want to send ur info to other chiari drs for their opinion.It is up to u if u r willing to travel to a chiari dr.

Make sure u do not have tethered cord, a syrinx, or a CSF blockage ect...

U r the one who must be comfortable with ur dr...if not, wait until u find one.If ur condition is dire, I suggest u move as quickly as possible.

Please let me know how ur dr appt goes.

"selma"

[Devin215]

Hi Selma,
It is Dr.Won in Fontana Kaiser....He is the "specialist" I guess. He told me my regular DR would have to order the MRI of my spine and he REFUSED to order it and told me he wont do the surgery until I am ready...Which I am but also want to rule anything else out...I got in contact with my regular Drs office today and have an appointment tomorrow to talk to him about doing the lumbar MRI I just want to make sure I don't miss anything before getting the surgery. Any Advice?

[selmaS]

HI Devin, yea I had that plus numbness in my leg from the knee down.

The ear pain was horrific.I did not have the same end result tho.....

May I ask what dr u r considering for ur surgery?

It sounds like ur NS is not a chiari specialist...mine ordered all the MRI's for me.....I would suggest u do some research on the dr .

All NS can do chiari surgeries, but bcuz he has the most experience in ur area doesn't make him a chiari specialist.......if his practice isn't on chiari and chiari related conditions then he is not the specialist u want. Most of us do have to travel to get to the right dr.


"selma"