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!

[janie920]

God Bless Marla from Pulaski, Wisconsin...
Hope you feel better soon, and we can all talk to you....Prayer is very strong..
God Bless Everyone...that needs it today, or tomorrow, or even anyday
janie

[n40066]

welcome back marla!!!!!  so glad you were able to come on and give an update yourself!  we look forward to hearing from you again as you progress in your recovery!  

[selmaS]

Hi Marla...so glad to hear from u....we r still sending prayers ur way for ur recovery.

"selma"

[marmar0515]

Hello All,

Sorry it has taken me so long to talk to you all and to let you know how I am doing. I am doing ok so far I still have some stiffness in my neck specially the right side and i still have alot of soreness but the good news no chiari headaches well i'm sorry i have to go i'm getting tired ttyl

marla

[Devin215]

I have kasier Permanente so I dont know if he accepts anything outside of the kaiser HMO??

[n40066]

lol!   not!   lol!

[selmaS]

Hey Lizzy...did u know there is a Big Chiari Clinic in Spain...if u r traveling...mayb u want to check them out...???...jk///

[n40066]

so glad to hear marla is home!  send her hugs from all of us!!  
when and where are you going to have your surgery, devin?  does your dr. accept files thru the mail to look at and give his opinion?  i would like to send copies of mine out to a few different drs to see what they think.  i hope to go to greece to see my fiance either before or just after surgery...it's usually anywhere from 15-21 hrs between flight time and lay overs.....was it really horrible on the plane with the pressure?  if so, i may need to rethink things!

[selmaS]

I so agree with u ...the diff ways that they use to describe chiari...mild....what is mild when I am down and can't function....no all chiari is chiari and there is no other way to describe it.

I am glad u were able to talk with kim....I know she went back to work and Ice skating!! which amazes me.....she is a bit younger than myself, so I guess she has that in her favor...the younger one is the better recovery u may experience.

"selma"

[Devin215]

I have talked to redkim once. She was post op by about 9 weeks and said she liked dr.won just had issues with the pain meds and her incision was small... So...I don't know if I have a csf Blockage he has NOT done a cine flow Study.....I asked him why he opts not to do that and he said because Either way I am very Symptomatic and it will most likely just get worse if we leave it be so he said he does not want to deny my the opportunity to feel better....He did say no promises on results But I want to do the procedure as a preventative as well...He said I have a classic case of "mild" Chiari.....If you ask me I don't consider any case of Chiari Mild .....It is a horrible condition and would not wish it on anyone at all...

[Devin215]

My flight was 2 hours from Portland Oregon to Santa Ana, Ca

[selmaS]

Do u know if u also have a CSF blockage?....I would imagine that u do.

I am glad to hear u have ur surgery scheduled, now that u say it i remember Marla saying something about it...u know chiari , we all tend to forget. Did u post it on the surgery thread?


Do u know redkim?....she also had her surgery by that NS ......she has not been on the forum for some time......

"selma"

[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"

[n40066]

thanks for the update, devin.  i hope you let her know she's in all our thoughts and prayers and we look forward to talking to her again soon.  tell her enough of the nonsense, get her act together and get well so she can go home!  :)  keepin the good health and no pain karma heading her way!!

elizabeth

[Devin215]

Hey everyone here is another update! I chatted with Marla herself yesterday and got some details. She says as of yesterday she could actually be in the hospital for up to 2 more days. She said she has a slight lung infection. She got it from being on the ventilator for an extra day. They kept her on it because of swelling. She said she has pain from the surgery too. I mentioned she was suppose to go home yesterday and she said that was the plan but they changed thier mind because of the infection. Sorry didn't update this yesterday I was about to jump on a plane home and was a bit distracted.  

[selmaS]

Devin thaks soooooooo much for the update and please pass along all our happy thoughts and well wishes as Marla continues to recover.

"selma"

[n40066]

thanks for the update and KUDOS TO YOU MARLA!!!!!  glad to hear you are feeling better and we all look forward to hearing from you agin soon here on medhelp!!!  i'm still sending you "good karma for quick healing"!!!!  : )

[Devin215]

Hi everyone i got a update early this morning about Marla. She is doing well and going home later today. Her daughter says she is feeling much better. Her phone I guess has been dead for the last 2 days lol. I am glad she is doing well! :)

[rod44]

Like Selma & Elizabeth I to will keep her in my thoughts and prayers
Ray