Hi I realize u r new and may not realize this but this is an older thread, the member u r addressing ur comment to posted in 2010.....
This poem is also available at the top of the forum in the Special Announcements drop down.
http://www.medhelp.org/posts/Chiari-Malformation/So-I-Say-poem-by-Dr-John-Oro-a-Dr-that-truly-understands/show/1136687
Go to Dr Oro In Colorado........He did my surgery. Went well. Not a lot of pain after.
Every word in this poem is so relatable. Thank you for posting and to Dr. Oro a special thank you for caring and taking the time to understand the pain, confusion, and sometime frustration we sometimes feel.
Wow! That about sums it up as I try to calm my sobs and wipe my tears. Beautiful Dr. Oro!!
Hello, like many "zipperheads" out there, dr. ORO's poem invokes a lot of feelings. I am 36 yrs. A wife, daughter,mother of teenagers,sister,granddaughter. I have also been battling chiari 1 for 10 yrs now. I am 2 yrs post op decomp. Surgery for which I traveled from anchorage , Alaska just so I could receive truly a gift ....being a patient of dr. ORO's. So , like many chiari patients I too fight a good fight everyday to battle with the vast, various, sometimes ambiguous , but absolutely painful symptoms but with this disorder it's become a process of micro management. And when I feel a "do-able" level of pain and tolerance of whatever symptom maybe effecting me at that time....I do make a choice to stop and enjoy it!! Or I make the choice ( maybe not so much of a choice with hubby and 2 teens) to get as much done that I can!! Eventhough I am 2 yrs post op of a decompression , it was one of the more complicated surgeries that chiari patients may receive. I took quite a while (over a year) to "recover" from treatment. I do have symptoms still. But thankfully I noticed the biggest and most disabling symptoms reduced or gone completely after surgery. I do need to stress the need for all patients to find a doc who understands what they are dealing with!! My first neurosurgeon was a little too eager to operate!! Because he wasn't sure when the NEXT chiari patient would come into his office. So, I put off the surgery for as long as I could. Not the best thing to do! My quality of life had diminished to spending 95%of my time in bed flat on my back ( in order to try to relieve the pressure in the head). And it really came to a point where I would blackout when having a BM. Yep really graceful !! That was it!! Time to operate !! And thankfully my wonderful family did some looking and found dr. ORO. Like I said, I was blessed to have found him. Dr ORO and his staff are really stellar when it comes to their patients!!! I have NEVER been taken care of so well --the difference I've noticed between dr ORO and other neurosurgeons is really very simple and not seen in surgeons typically..... Bedside manner!! Dr ORO's is truly outstanding!! And so outstanding that I travelled a long way to receive it!! Alaska has some wonderful dr.s and it keeps improving all the time, but , if I was going to have brain surgery and titanium plates screws and part of my brain and a few vertebrae removed- I wanted someone that did this 200-300 times a year. Compared to a surgeon who at that time had done 1 previous procedure. So again , I stress finding the right care provider. Most of the time chiari patients have to travel to some degree for adequate care. Also, for those of you that are I interested..... Dr. John ORO's book is also fantastic!!! Check it out!! But fellow "ZIPPERHEADS" keep on fighting!! I know it's hard when you have pain you didn't know your own body could create or survive! But never give up! This disorder does not deserve you throwing in the towel!! Try and reach from way down in your soul for the strength to go another round!! Because I think most of us simply do not have another choice! We have families and lives, goals,accomplishments ,we'd like to get back to!! But chiari patients also know quite well that there are those times ( some more often than others but still frustrating beyond belief) when you can't schedule your own life. Choice , starts to look like a privilege not a right. (I'm still after all this time with chiari having trouble coming to terms with that) but above all else fellow chiarians please keep charging forward - I have to belief that all of us are right there marching on together!! --KD anchorage alaska
overwelmed and thankful making copies for friends and family