I picked up my cd yesterday

[pamk5]

I am trying to get into the Clinical Trials at NIH and was asked to pick up a cd with my mri results as well as any thing else they had done regarding my diagnosis. If you recall I was diagnosed a little more than a week after a bad rear end collision.  They did a CT scan in the ER, which I was told showed nothing, and that I had post concussion syndrome.  Well the CT report says Chiari One Malformation and I wasnt told.  Wow!! Unbelievable.  I finally got the diagnosis after an MRI when my symptoms didnt improve.  And my Neurologist says this should go away on its on!! The challenges we face to get proper care and find Doctors that understand is very frustrating and I am only 3 weeks into this, I cant imagine the frustration you folks who have been dealing with this for years have.  God bless all and give us strength to keep fighting for ourselves.  I see a NS tomorrow for the first time! I hope it goes well!!

[*Stormy*]

Yes, many of us had to go from dr to dr, myself included. I am so glad that I persevered b/c I finally found one that helped me!! Having this condition really makes you realize that not all Dr's are the same and that you are looking for the right personality, for that Dr that actually DOES care and wants to help. Keep pushing for it, you will find the right one!

Carolyn

[selmaS]

Don't hate dr shopping more need to do it...it is ur life , ur health....u deserve the best!!

How else will u find the right dr if u don't shop around? We do it for construction to build a home, we do it for college to get the best education...y not the best dr for our health care ??

Right?

Hang in there...I went to several b4 I found my NS too : )

"selma"

[pamk5]

Well I took first available, which was my first mistake.  The only doc in the practice that even mentions chiari as an interest only sees children.  He basically said that my herniation was so small it couldnt be causing my symptoms, since it is only 6mm.  Idk I am just frustrated.  At least I have an awesome primary care doc who understands and can help.  Next step Dr Tatter at Baptist then I guess Cleveland clinic if that doesnt pan out.  I hate the feeling of doctor shopping!!

[selmaS]

Good Luck tomorrow!!

I pray u get into the study....and that this NS tomorrow helps u move forward with treatment.

Keep us posted : )

"selma"