marmaro515

[n40066]

just so you know when you get back....WE'RE THINKING OF YOU RIGHT NOW AND SENDING PAIN RELIEF KARMA YOUR WAY!!!!!  BIG HUGS!

[Devin215]

One other thing coming from that dr. on the plane....I mentioned to him I dont understand why some Dr.s are sooo reseserved when it comes to treatment and wonder why once Diagnosed with this condition some people are pretty much sentenced to just pain management with pills....He looked at me in shock basically saying why just pills that " doesnt fix the issue"  I told him pretty much the only thing that helps me is opiates like vicodin and he said well those can be habbit forming and I said exactly so he was happy for me that I stood up for myself and had to demand the cervical thoracic and lumbar spine mri from my PCP not my NS. I kind of had to back my regular Dr. into a corner too just to get the ball rolling on the MRI for my head with intial thoughts of MS....ALl I am saying people is do what Marla selma and I have done and demand the things you need to get done......Stand up for yourself and dont let the Dr.s out there push you around!!!

[n40066]

hi devin!  if you don't mind my asking, how long was your flight?

[Devin215]

Hi selma,
I do have my answer. I have had it since March or April. I am just waiting for my Pre-op consult on the 21st and on the 29th I have my surgery with Dr.Won at Fontana Kaiser out here in California. Just in limbo and pushing through for now. What I meant by taking so long to get my answer is the fact I am 26 now and started going to the Dr for headaches when I was 18. Here is my answer. Chairi Malformation 1  Ranging from 4-6 mm bulging discs i...... here is my Report results.... Thoracic and lumbar spine with out contrast--some loss of cervical lordosis c3-c4 minimal retrolisthesis of c3 over c4 no signifigant central canal or neural foraminal stenosis is seen  c4-c5 mild posterior bulging of the anulus of c4-5 disc. no signifigant central canal or neural foraminal stenosis is seen  the thoracic cord is of normal size and contour no abnormal signal is seen and normal marrow signal. brain mri says low laying cerebellar tonsils with approximatly 4mm descent into foramn magna..... the tectum is normal and 4th ventricle is in normal position. I talked to my ns and he says my herniation can be anywhere from 4-6 mm depending on sitting or laying down....so it could be positional....

[selmaS]

Thanks for the update on Marla...glad to hear she is home and feeling better!! : )


I had a problem the last time I flew as well, but it was on landing I had the problem...intense pressure and increased numbness in my leg.....my ears were so clogged I went to my PCP thinking I needed them cleaned out...he said they were fine.

That is so cool u got to talk to a surgeon like that......and that proves it doesn't matter if they r a NS or a brain surgeon...if they don't know chiari....keep looking.....

Good luck and I do hope u hear something soon

"selma"

[Devin215]

I am doing as good as can be. I keep pushing myself through and yes flying is a problem because of the pressure in my ears it causes. I've noticed it depends on the captain flying lol. If they descend to land too fast I get excruciating pain. Typically anytime I go up in the air no matter what I get pain In the ears and sometimes  the neck. Today I am paying for it flying lol. Today I have bad blurred vision and seeing spots, pain in the neck and shoulders and a bad headache. My legs are hurting too but I think that is from all the walking I did this weekend. One coincidence I had last night was I was sitting close to a brain surgeon on the air plane. he gave me some advice and didn't know too much of Chiari. He said Kaiser has a tendency from his experience to not diagnose correctly and that might be the reason why it has taken so long for me to get my answer. He told me himself to find a specialist and I told him I did. He said he sees a lot of patients who go in for his treatment and they don't even know what is happening to them so he said he was glad that I figured out how to stand up for myself and research my condition. I texted marla earlier and she said she is home now too and Feels a little better than yesterday by the way.

[selmaS]

Thanks so much for the update on Marla, and like Lizzy said, please send all our prayers and well wishes to her.

Devin, how r u doing?....was ur flight ok....many have problems flying, I was curious.

"selma"