My daughters pediatrician called this afternoon to inform me that she had my daughters films reviewed by a Neuro radiologist and she didn’t have a Chiari because she only has 3.5mm herniation. She did this because I told her the neurosurgeon she sent us to said not Chiari but cerebellar ectopia and couldn’t possible be a problem and I told him goodbye.
Asked for second opinion and called Dr. Frim in Chicago. His office called me back quickly and we see him first week of February.
I actually finally got the pediatrician to admit the NS she sent us to said he didn’t even do the decompression surgery, “that would have to be done by someone who does a lot.”
Why is this such a fight? Why do these doctors, who I think are good doctors, refuse to acknowledge this has anything to do with Chiari? This is a pediatrician that has seen our children since my older ones now 15 were born. I have to keep this a good working relationship and I’m just ready to scream.
I appreciate any feedback on how you deal with this.
Mcks Mom, I can’t answer why this is such a fight, it seems like an uphill battle with everyone trying to beat you back or convince you everything is fine. It doesn’t make any sense to me, and it happens to so many of us in all parts of the country - world for that matter. I’m so sorry you and your daughter are going this and you have a right be angry. I have heard some great things about Frim- I’m glad you found a Chiari specialist. Your doing the right things for your daughter.
I was considering emailing links to articles to my daughters pediatrician with all the new criteria saying 3.5mm can be a problem. Then, I reconsidered thinking it would probably not be very well received. Plus, why doesn’t she look it up herself?
Another question, not sure if I should start another link or not. If Dr. Frim agrees to see a patient (especially an out of state one) does he at least think he can help somehow?
I’ve read that Chiari is as prevalent as multiple sclerosis- why won’t a doctor bother to google Chiari- for the love of mankind!!! I say most likely that if an NS agrees to see a patient they feel they may be able to help. Just please always keep in mind that there are several world class peds surgeons in America, so if Frim is not the right match you have several other options.
I wanted to let you know that I did print a lot of information about chiari and presented it to our primary physician, My son is 18 and just had decompression surgery this past sept. I absolutely love our primary physician and he was very supportive of my son. Altho he was really not very familiar with Chiari, he welcomed the information I gave him and actually thanked me for it. His response is " I don't know everything". I would maybe mail the information to the pediatrician and just put a note in there that " I found some very helpful information on Chiari and love to share it with you." I would bet that it will be read and if you mail it, he won't feel like you are being disrespectful. I hope this helps. Good luck.
Mom to Mck said:
I was considering emailing links to articles to my daughters pediatrician with all the new criteria saying 3.5mm can be a problem. Then, I reconsidered thinking it would probably not be very well received. Plus, why doesn't she look it up herself?
Another question, not sure if I should start another link or not. If Dr. Frim agrees to see a patient (especially an out of state one) does he at least think he can help somehow?
My sons pediatrician mentioned her as a scoliosis doctor. I’m going to go research her more. I had called Dr. Oro’s office here, but you have to be 14 to see him. Thank you.
I have also seen my NS for the third time with new MRI and Bone Scan in hand.His opinion ,even though the first MRI showed a 6mm herniation, that it was" not quite that big ". Therefore ,it is not the Chiari causing my symptoms ie.stiff neck,head pressure,numb feet and legs,ringing in the ears,heart palpitation problems and general pain in my body.This is to name a few ie. heat sensitivity,fatigue, the list goes on .My question is .If it`s not Chiari , what else could it be.?
I really do feel for your problem ,as it is definitely hear in Australia as well , and this doctor is one of the best in the world.So I`m told .So where do I go from here.?
Good luck. PS.I also have a connective tissue disorder which many of us have,but it just makes things more difficult.Even my wife is doubtful about my problem after hearing the NS say it`s probably not Chiari.Thats all for now,hope it helps that your not alone.