"So I Say" poem by Dr John Oro a Dr that truly understands

[selmaS]

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

[selmaS]

  Hi you should be able to copy and paste it into an e-mail or a word program.

Yes it does and it was part of the welcome message but somehow fell out of the intro...so I found it and hoped it may help some of the newbies here....

Congratulations on your surgery being scheduled...being scared is normal....just remember to post your surgery date on the thread so a Prayer Thread can be posted for you.

[fro510]

How do I share this poem? This does say it all.  I just dr. Oro and Kimberly this week and they were great. They found a larger herniation than the other Drs.- from 8 mm to 21.5 mm. He explained that one is lower than the other. Surgery is scheduled for July. I trust him but still very scared.

[selmaS]

  BUMPING UP

[selmaS]

  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.....

[frankie_rush]

This is good.  He does understand it very well.

[HeatherS87]

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

[selmaS]

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

[Jatman79]

Go to Dr Oro In Colorado........He did my surgery. Went well. Not a lot of pain after.

[lisa393]

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.

[Sargmomof3]

Wow!  That about sums it up as I try to calm my sobs and wipe my tears.  Beautiful Dr. Oro!!

[Akgypzy]

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 

[PAULAW123]

overwelmed and thankful making copies for friends and family

[sandy629]

  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

[trebmal2]

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

[ajunebug]

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.

[fibrotj]

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

[MeggyBach]

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.

[JimFR]

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

[xmelax35]

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!

[3starwishes]

I have never met Dr. Oro but have heard so much about him... all wonderful. Thank you for this poem. xoxo

[leighleigh123]

WOW - that pretty much sums it up! He must be a great doctor!!! Happy New Year everyone!

[stephham88]

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.

[lad12]

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!

[wrestlnmom]

Thank you Selma, not just for answering my question, but for answering so many others!!!