We have our 1st NS appointment today. I’m a bit nervous due to the way her neurologist just shrugs my daughters chiari off. It’s because of the daily pain, for the last 4 years, that we even went to see a neurologist any way. I hope the NS takes her serious. Fingers crossed!
I hope he takes it a bit more serious then the NL, But don't be discouraged most NLs dont seem to take it seriously enough. From what I have been told by my NS its not necessairly the size of the hernation more so its about the impact of the symptoms on the person's life. So I hope your NS is one who is willing to talk to you about his/her beliefs..and if this NS gives you off the wall responses(like come back when she can no longer breathe)-dont feel you are stuck remember you can always get a 2nd opinion---
Good Luck!
hi,
my own experience with neurologists have not been good nor helpful......they blew my chiari off as well..just like your daughters...thrilled she is seeing a ns....i personally bypass nl...i guess if one finds a nl who know something, anything about chiari thats another story..the ones i saw were useless.
can i suggest you bring a list w/you today...listing every symptom...even minor ones that you think may not be related..b/c they may well be related to the CM.
i will share y example...i have been a cigg smoker for yrs..bad, i know...every year i was put on levoquin..anti-biotic for either bronchitis or pnemonea (sp)...went to pulmonologist after my primary said...enough is enogh..bascically...pulm and primary told me to stop smoking and it would stop all these lung infections..makes sense....smoking is very bad..but being me...the weakest link..lol...never quit....a bit over 3 yrs ago had decompression...not once have i had to be on anti biotics..no bronchitis nor pnemonia(sp)...is that weird or what???
a few weeks ago i had that nasty chest cold everyone was getting in town here...i was so nervous that..here we go again..it has come back..God is good....no doc..no anti biotics..just your run of the mill cold.i was scared that the lun sx had returned...praise God.
i tell you this b/c chiari has so many sx's and once you are in his office you may forget things..i am a mom ....so i can only imagine your anxiety and fear...just a thought..write things down and bring to the appt. i am bossy, huh???
in my prayers...post when you guys get back from the appt.
peace,
lori
ps: b4 surgery, for yrs....i was on anti biotics for lung infections ect ..at least 3-4 x's a yr.
Update: I absolutely love the NS. From what I have researched and heard from another patient, he’s very knowledgable about chiari. He’s involved in some very important research and even invented a state of the art shunt for those with hydrocephalus. He examined my daughter and wants to rule out any other possibilities before considerations her for surgery. I’m totally ok with that! He also ordered a spinal MRI, so that’s a step in the right direction. Now on to the NL appt. can’t wait to ser what bs she has to say.
thats great glad you like him..
may i ask who the ns is?
My 5 year old first NS appointment was about 3 weeks ago. We are scheduled for surgery around Dec 12th. Our doctor was wonderful and wanted to do something to help the symptoms. He had been having symptoms since birth and we had no idea he had Chiari 1 malformation until he had a cat scan for a minor head injury which found it. I am just hoping we are making the best decision to go through with surgery.
He had scheduled and we have already completed the MRI of the spine and head. It really showed us how substantial the compression was. Good luck! It sound like we are in the same process. Keep me updated!
Dr Jogi Pattisapu in Orlando
Lisa W said:
thats great glad you like him…
may i ask who the ns is?
thats fantasic Tonya J
you found someone who is taking it seriously,
im also pleased that he is going to do more tests first,
joelene
i think there is a list of doctors somewhere you may want to add this name to the list with a brief explaination of location etc... its always good to find a good doctor and reccomend them to others its hard for us to find good one Thank You!
tonya,
so happy you feel good about the ns....glad he is being though ..doing a full spine mri is a great start...keep us posted.
peace,
lori
i have an 11 yr old with chiari. the list of symptoms are very important to have with you at the appointment. i have to have a list or i forget everything when her NS enters the room.there is a list on this forum that is very helpful. some of the stuff she has complained of, I just overlooked as something else, until I read the list.it is very helpful.the surgery was a huge relief for the Chiari symptoms and headaches.
I truly hope all went well at your daughters appointment. I truly find that the worst you go in to these appointment to try and get help and they look and talk to you like you don't know anything. I had one doctor near the beginning say to me "Now you don't REALLY want your daughter to be sick, do you?" LIke ya i enjoy spending all my time sitting in doctors offices and never sleeping because she is always screaming in pain... sure that is what I find fun. My heart and prayers go out to you and hopefully you are blessed with a good doctor!! - Dena