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"So I Say" poem by Dr John Oro a Dr that truly understands
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&quot;So I Say&quot; poem by Dr John Oro a Dr that truly understands<img src='/RoR/images/blank.png' class='icon_img_ww push_pin_icon'>

The following poem is by Dr. John Oro  





So I Say


                                            Another headache


                                            The third today


                                            We all have them


                                            So they say





                                            I’m getting dizzy


                                            My vision blurred


                                            Your getting older


                                            Don’t be absurd





                                            I’m staying home


                                            Too tired to go


                                            Go see your doctor    


                                            She should know





                                            Too many symptoms


                                            You must be stressed


                                            Take medication


                                            And get some rest





                                            I cannot think well


                                            Can’t find the words


                                            My memory slipping


                                            My speech gets slurred





                                            We’ll get a scan


                                            Since you insist


                                            If we find nothing


                                            Please don’t persist





                                            Don’t make me laugh


                                            Don’t make me cry


                                            It hurts to strain


                                            I don’t know why





                                            Your scan is fine


                                            By report today


                                            Incidental Chiari


                                            So they say





                                            Incidental


                                            What do you mean


                                            By a doctor


                                            I have not seen





                                            It is anxiety


                                            That makes you so


                                            The world is stressful


                                            I think you know





                                            I pulled away


                                            Gave up, or such


                                            Until the pressure


                                            Became too much





                                            I waded through


                                            The Internet


                                            Fearful of loosing


                                            What I had left





                                            It took some time


                                            To come to know


                                            My brain is hanging


                                            Down too low





                                            With every beat


                                            The fluid flows


                                            Deep in the brain


                                            To the opening below





                                            The rush of fluid


                                            Seeking release


                                            Finds cerebellum


                                            Which makes it cease





                                            The pressure spikes


                                            My head explodes


                                            It makes such sense


                                            Now that I know





                                            Working together


                                            We’ll find a way


                                            To make it better


                                            So I say
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55 Comments Post a Comment
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Wow, that's a great poem! I need to find a dr. that understands Chiari that well!
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I am just starting this process being recently diagnosed and hope I find a Doc that understands what I am dealing with.  Thanks for posting this.
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That is an awesome poem.  I sometimes feel like no one understands. I just read it to everyone around me.  That for helping me "find the right words"!
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Dr. Oro is a wonderful, caring Dr..  I am glad he is my Dr. and I would recommend him to all.
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I'm so glad that this poem is on here.
For school we are doing a poetry unit.
And we were told to bring in 2 poems about things we were passionate about.
And I just found my second poem. (:
My first ones about God.
Thanks!!
I can't wait to share this with my class. (:
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I just read the poem for the first time, wow, that sums up how alot of us have been treated before a dx of Chiari.    
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This poem  gives the exact words to express my experience of chiari. I actually cried when I read it
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1198714_tn?1274094183
Wow...first time I've read or heard a Dr say anything that even come's close to how I feel.  
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1281936_tn?1276560670
Wonderful poem.
Perhaps I'll print it out and make my doctors read it before my next consult!
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1298467_tn?1277450537
this made me cry!
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1304858_tn?1273288431
Aw I love this, all of it is true for me as well.
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1311927_tn?1311709545
thats is so awesome to know there is a dotor out there that understands what we are going through .
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perfect way to describe what I am going through and went through. Perfect Poem.
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1322135_tn?1274618898
Like many poem touches a place inside that has never been recognized. Thank you Dr Oro! and Selma for sharing it.
Is there a Dr Oro out there anywhere near southeastern KY?
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620923_tn?1413427272
Dr Oro is in CO.....but u may find a dr in TN......please see the specialist list complied by the members here...all drs have been used by the members, BUT do research ne u consider to be sure to  find the right dr for u.
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Oh how I wish I lived in Colorado!

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I wrote this a few minutes ago ... looking out my bedroom window (my own and only little slice of the world)... I think it may fit a few of us :)
Much love and glad to be a member of the community here...thanks Selma for your encouragement!!

Fireflies, dragonflies, butterflies, newt
Take my pain away and make Chiari mute
Let me walk down the street
Without a cane or crutch
I don’t ask to dance again
But to live… is that too much?

by Tharilyn 6/13/10
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1346231_tn?1276569867

This poem is so true for many of us chiarian or all.  i would like to thank dr. oro for trying to help me in March 09. it is sad to have him to tell me to never and he meant NEVER to ever let anyone to have surgery on me ever. I had a decompression in 08 in a town 21/2 hrs from where I live and  dr. vitaz in louisville  took out to much bone, didn't put my muscle back in place, stretched my nerves as far as they could go, and the worst I have no patch over my brain so my dura has attached to my skin. You can put your fist in the back of my head. To me the trip from ky to co. was worth it, he told me the TRUTH!!!!!
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sure wish the 'share this' function worked
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620923_tn?1413427272
who would u like to share this with?
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1384518_tn?1279468520
i cant find that list you mentioned that was on the Chiari forum.  List of doctors.  can you tell me where exactly i can find it plz,  thank you
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If only this was n them med textbooks
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1446980_tn?1286842138
so true!
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1445116_tn?1284502946
Dr. Oro is a wonderful dr. I'm blessed to live just under a half hour from his office. He did one surgery for me in July and now I'm having my chiari surgery with him in November. After reading what you have all written I feel so blessed to live here in Colorado with Dr.Oro. To top it off his staff is wonderful as well. Anyone going thru this and able to make it to Aurora, CO to see him, it would be worth your time and money.

Lissy821
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1451338_tn?1413478623
I still don't have an official dx of Chiari. My current Neuro feels that my 4.5mm herniation is "almost normal". This poem almost made me cry! It describes so much of how I've felt for so long! Now to find a doctor that cares as much as this doctor obviously does!
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1457748_tn?1317578765
This is exactly how I feel!!! Finally after serching for so long I have renewed Hope!!!
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1479778_tn?1287504486
This poem just sums up everyting of how I feel! i can not believe there is actually a Dr who understands Chiarii but so there is gives me some form of hope! xx
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I saw Dr Oro in March 2010 and I traveled from a few states away and I went away from there very dissappointed. I had done a lot of research and thought he was the one to go to. I have a 9mm heriniation and many neurological symptoms and a constant headache and I thought he would sit down with me and go through my symptoms and give me some options and it was basically. I could do surgery and it may ehlp and it may not. I was very dissappointed.
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Ive been seeing multiple ENT's and Neurologists for the past year.   This poem sums it all up.  really hits home for me!
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Where is Dr. Oro? Does he do phone consults? maybe he will talk to the doctor that has to treat me until I can get in with a Neurologists.  I think Im gonna cry.....Someone that really understands.  Wonder if he takes out of state patients?
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620923_tn?1413427272
http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1293483

Dr Oro is in CO...use the above link to find more info.

Yes, he will see out of state patients.
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haks for the poem.  my husband thinks i'm nuts.  maybe e will understand nw.
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620923_tn?1413427272

by wrestlnmom, 7 minutes ago
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To: Selma
My son has chiari and I am interested in sending his films to Dr. Oro.  What is the procedure to get this done?  Does anyone know of any other chiari specialists willing to do this...even for a price?  TIA.
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620923_tn?1413427272
Hi.....in the Drs thread there is some info on where Dr Oro is....several of the drs will review MRI's some for free some for a nominal fee......when u contact the drs staff they can better tell u which insurance they work with and what the fees are.

http://www.medhelp.org/health_pages/Neurological-Disorders/DOCTORS-LIST-FOR-CHIARI-SYRINGOMYELIA/show/1062?cid=186
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Thank you Selma, not just for answering my question, but for answering so many others!!!
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I just joined this forum because my daughter has Chiari, had one surgery 3 years ago. She had an MRI done, then went to see the surgeon for results. He said "MRI looks fine. Take some migrain pills"  My daughter was taking 5 tabs of 7.5 vicodin daily, and just detoxed, stopped taking them, and was in so much pain, couldnt get up off the couch! Before her diagnosis of Chiari, she took the same pills and got no relief. She is fed up. She saw Dr. Breeze at the university hospital in Aurora, CO. Time to talk her into seeing yours. Thank you so very much!
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1510092_tn?1293497829
that poem is spot on. my doctor told me that chiari doesnt cause pains and basically tried to make me look like a liar. i told him that he obviously needs better education in the field before he starts making presumptions. i would love him to come on here and see all of this information. wish dr. oro has a twin in the uk.
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1547253_tn?1293733457
WOW - that pretty much sums it up! He must be a great doctor!!! Happy New Year everyone!
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I have never met Dr. Oro but have heard so much about him... all wonderful. Thank you for this poem. xoxo
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Wow! This is the first time I have read this poem. Don't know what took me so long! This is a wonderful poem. I think I will read it to my family! I wish I lived close to that doctor! This is truly a beautiful poem!
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1630419_tn?1299718261
My name is Jim and I'm Genalf's husband. I wanted to say thank you for helping her find this forum. It's nice to belong to a community / group of individuals whom understand the Chiari way of life. I'm looking forward to communicating with you and the other CM folks on this website.

I found this poem and started reading it to myself. I can't get past the third passage without breaking down in tears.

Thanks again,

Jim
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1635408_tn?1305730350
This made me cry...don't know if it is because it made me realize I'm not crazy and there are some doctors out there that would realize that or if it made me sad that I haven't found one and I fear I may never find one to work with me on what's going on inside my head.
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763858_tn?1234815337
Funny...I was researching Dr. Oro...at the Chiari Care Center in Aurora, CO...& I ran across his poem.  I had copied it in my MS Word...as a keepsake...& was going to post it here...until I realized that it was actually "PINNED" to the forum.  LOL!  GREAT POEM!  Sums it all up precisely!  Can't hardly find decent Dr.'s these days...who truly understand our condition or dilemma...or show any concern.  This really helped to make up my mind about him...in addition to all the good things I'm hearing about him!  Guess I'm gonna send him a copy of my MRI's & go from there.  {[hugs to all}}  ;)
~tj
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He seems like an understanding doctor! It really bothers me that he used the wrong "your" in the poem though. LOL! Maybe it was just copied wrong though.
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Outstanding!!!  Can't wait to share this with all the non-believers or doubters who I've shared this journey with.  The poem really says it all!!  Thank you. XO
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1759188_tn?1324681908
  i am so glad i am not alone  !!!  i am going to print this poem and page and take it to my doctor.  every doctor has made me feel so stupid and a hypercondriac. i know i'm not !!  thank you
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overwelmed and thankful making copies for friends and family
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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 
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Wow!  That about sums it up as I try to calm my sobs and wipe my tears.  Beautiful Dr. Oro!!
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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.
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Avatar_m_tn
Go to Dr Oro In Colorado........He did my surgery. Went well. Not a lot of pain after.
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620923_tn?1413427272


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
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5735236_tn?1373314409
I am brand new to this site and to the chiari community. I have yet to receive any help for all my doctors just want me medicated, but this hope really nails all the feelings on the head. I'm lucky to have found this site and others who have gone through what I am now about to go through.

Thank you
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4816750_tn?1368808270
This is good.  He does understand it very well.
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620923_tn?1413427272

  Yes he does...and he is one of the country's top Chiari NS's......

I do have this posted at the top of the forum under announcements so it is easy to locate.....
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