So I Say- by Dr. John Oro- a chiari 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

[aiMelissa]

Amazing!  I see Dr Oro in January and I am so looking forward to it.

[Hursty48]

Awesome poem Selma. Oh so so true - every single line. What a doctor! One would think he has experienced it himself.

[selmaS]

Yes, I heard rumors to that effect, but noone seems to know.He is a very kind spoken man. I had the pleasure to talk with him this past summer at a conference.

[Hursty48]

I would take the bet - probably good odds.
I envy your opportunity to talk to him.

[Eileen79]

where is this dr.at and I hope he takes my ins?!?!?!?!

[Eileen79]

Can Any Body That Me Where I Can Find This Dr.I Need A Dr That Under StandS I seem To Have Dumb A#$%^&*(S!!!
Who No Nothing Of Chiari

[selmaS]

I will PM u his info.

[LG0526]

To all-

I just got home from seeing Dr. Oro in Colorado yesterday and let me say.... that poem does not even do him justice.  I know it is hard to believe, but he is even better in real life!  He is so compassionate and I had the greatest appointment with him.  I live in Texas so my husband, mother and I had to fly to Colorado, but it was worth it.  I would HIGHLY recommend him no matter where you are.  He is amazing.  Let me know if you have any more questions.  I would love to help out because he is one in a million (in docs and is really taking care of me).

LG

[edeneyes80]

Can you send me this Dr's info please???  I swear all the Dr;s that I have seen where I live must have gotten there PHD out of a cracker jack box!  I have had a severe pressure headache for 3 days now, nothing is helping me, my meds, ice, nothing. I've seen my DR. twice this week and he has no clue what to do. He dosn't want to do surgery because he's not 100% sure it will help me and he says he thinks my chances of getting better is only 33%.  I need help, I have a daughter to raise and I am struggling here in severe pain

[chiarigirl11]

This is such an AMMAAAAZINGGG poem!!!!!
I LOVE IT !

[ThePeachy1]

This poem, says it better than any thing I have every seen or heard, thank you.

[Cathyp69]

wow

[mleedix]

Wow~ such understanding... very good Doc if you read this please do give yourself a pat on the back. I only wish you where closer.

[bubbles0309]

all i can say is wow....

[donlyn]

Went to Neurologist today (who trained with Chiari specialist in Miami) He said that my syrinx did not get larger since 2006 and the cause of my neck and head pressure and pain was NOT from the Chiari or syrinx. He feels I need PT to strenghten my neck muscles since I also have a few disc hernations. He "suggested" that I had anxiety from all of the Dr's I had been to and prescribed Activan and Ultram for the pain.
I don't think I agree....any input would be appreciated.
Also....did any of you guys out there ever experience a feeling of neck pain that wraps around to the front of your neck as well as the back?

[selmaS]

Hi, are u sure this Dr is a chiari specialist?....Andu should really be seeking info from a NS not a NL......do u have copies of ur MRI?

If u have copies u may want to get another opinion...send them off to a chiari specialist that is a NS.

As for the neck issues...yes my neck discomfort did wrap around my neck and still does....I do not or did not have a syrinx.....I did have chiari PFD  surgery...I still get the odd feelings on the left side in the front.

I hope this helps u some.

"Selma"

[donlyn]

Yes it helps knowing that someone finally understands about the  wierd neck problems. My family Dr recommended  me to see this neurologist while I wait for an appt from University of Miami. (I am trying to get this scheduled for almost 2 weeks now) I was told to see Dr.Alan Levi by my Internist as his family uses him. I called Dr. Levi's office and faxed my MRI reports BEFORE I read your post about Dr. Barth Green. I will call on Mon and make sure Dr Levi is also a Chiari Specialist.
During my exam today, the neurologist said...Dr Barth Green would never consider surgery for your syrinx's.
After going over this afternoons visit in my mind, I do not think the neurologist thinks that Chiari is a REAL illness.
.

[donlyn]

Thank you...beautifully done.

[skeetelmore65]

Hello,I am sorry that I haven't got back w/u. I have been to my new Neuro. in which I think I like. He did find something that concerns me,but shouldn't to what he said or what I have read @ it (Venous Angioma).He stated that is was benign and I probably was in my mother's womb w/it.He also said it was small and that no blood was around it or growing ...I think to that effect. It just stunned me..I think. I told him @ my foot,in which I haven't told you, my rt.foot just over the last two little toes up to my ankle is completly numb and have been for over 2 wks. solid now. It is like me scratching a board and it feels really creepy. I told my new doc. this and later his nurse called me and said that he had ordered an MRI on Lumbar. Man girl, I still feel like this could be two more things such as that Chiari 0 or TOS. Now TOS(Thoracic Outlet Syndrome)...I think u know what it is but, I thought I'd spell it out. There was something you spelled out to me the other time that lost me because I don't know the last letters were gone and I will spell it out and u get back and I will research those symptoms...pasudotumor cer or something like that. Do u know what I am talking @. I wanted to add u as a friend, but stupid me deleted our session...well only a couple since there were five on my watch list and I thought I'd get rid of a couple since they all were the same,but guess now u can't do that? Hey, get back to me to tell me what u think and I will add u as a friend so we can just keep in contact w/one another in case they dx me w/chiari 0 ...who knows..it has been over the three yr. mark for surgery and @ the same for the ESI that messed me up...I think that is most of my prob. with also...yes a two-fold prob..my surgery ACD &F for a C5 extruded disc,but also they say on other reports that my C6 was included w/bone graff that they failed to tell me @ and plus a T3-T4 compressed fracture...that could be my prob too since I have so much pain in that area and my back is really burning so I must leave u with all this to think @..........lol...not really funny hey.Thank you so much for being there for all of us...Karen....       ***@****

[skeetelmore65]

Bumping again looking for TOS anyone know anything @ it?  I really think I have it and got medicaid...hard to see dr. ,but blessed have appt. on 8th of OCT....maybe then I will be blessed w/answer...I pray

[Prism272]

This poem is such a blessing of pure understanding. I would love to see this Dr.
His spirit shines through his words.
Thank you for sharing it with us, Selma and also for the warm welcome from you and so many others. I feel like I have found a  chiari "home."

[anm830]

What insurance does he take?

[chiariangel]

I highly reccomend him. I just had my surgery in july and Feel better than ever. It is truly a miracle to me and i dont think i woulld feel this good if I would have been in anyone else's care. I never ever thought Brain surgery would have gone by so smoothly.

[selmaS]

HI and welcome..so glad to hear u had such a positive experience.

[kristins_mama]

Hi....Do you know if Dr. Oro has an email address that we can use to contact him?

[selmaS]

Sent the info via a PM

[skeetelmore65]

Dear Selma,
     I am so frustrated and you won't believe what happened to me. I was looking over all of my records to get ready for disability and low and behold I found a record and it had been read by a radiologist. It said that I had a Mild Chiari Malformation and my mouth hit the floor. I am so shocked and disapointed and now I understand why I feel the way I do. All day today I suffered through it and wore an Aspen neck brace, in which I think really made matters so much worse. I felt like someone had a vice grip on the left side of my neck with a handful of needles or pins. What should I do?
     It says up under it that it was authenticated by Radiologist :Alan D. Eisenburg,MD/djr
The report was dated 5/24/06
Can you believe that? I am so ...I don't know.. Get back w/me will ya?

[skeetelmore65]

Oh, I thought I'd add that the doctor I was seeing was in Memphis,TN...and that he works at Semme's Murphy by the name of Dr. JULIUS FERNANDEZ. I am so appalled that he left me hanging and I just went to see him this last April and he failed to follow up with me to try at least to find my problem. It is him that I blame, not the radiologist.
    The report read as follows and this caught me by surprise as well. I don't understand what they are doing over there.
History: Karen ******* is a 40 year-old with a provided history of neck pain and numbness/tingling. Surgery2/01/**
Findings: As positioned in the scanner, there is straightening of the upper cervical lordosis. There are mild anterior wedge shaped compression deformities at T3-T4, as a result of superior endplate cmpression. no gross abnormal,
Postsurgical changes at C5-C6 are observed with anterior plate and screw fixation. No Spinal canal or foraminal compromise is observed.
No disc herniation, significant dural sac compression, or spinal stenosis is observed elsewhere in the cervical spine. The foramina are not optimally visualized, but no foraminal stenosis is appreciated.
The cerebellar tonsils extend slightly through the foramen magnum, more so on the left than the right. On the left, the tonsillar tissue extends approximately 6.5 mm into the canal into the upper cervical canal,but remains above the C1 level. No syrinx is observed.
1. NO SPINAL CANAL OR FORAMINAL COMPROMISE IS IDENTIFIED.
2. MILD COMPRESSION DEFORMITIES OF T3-T4.
3. MILD CHIARI MALFORMATION

Here I have been suffering for so long and I truly believe that the Neurosurgen that was mentioned above afftected the outcome of this. He assisted the Neurosurgen that actually was suppose to do the surgery. I was told later that he done 90% of my surgery from his own nurse(KIM).
I really don't know what to do and here I have suffered for so long. This was a time that I had a lapse in my INS. and had to go on COBRA, but still that just shows that the $ was the big issue here.
I really put my life in their hands to make me better..instead I suffer on a daily basis. If only they had dx me right and right then. NOOO, I had to find it while going over paperwork and from the reasearch that I have done made me understand.
I have been told by 3 other Physicians that I didn't even need the surgery(it was insignificant and small disc herniation) and that it needs to come out, but this Neurosurgen says that everything is fine. I am definately NOT fine. I am in excruiatind pain and have been since I had the surgery. At first, that is the first 2-3 months I thought it was just normal to hurt because I was healing, but found that I had to return to his office 9 out of 11 months describing the pain and agony that I was experiencing.  I have also been told that besides that it shouldn't been done, and that it needed to come out that there is no option for me now. I can't do anything @ it and I am very disgusted and hurt that I have to spend my life this way.
I also believe and have researched that he knew I had a T3-T4 compressed fracture and left it. Thinking that I would make nothing of it and just deal with it...NNNOOOOO
IT IS CALLED A FAILED FUSION!!!!!

If there is someone out there who could help me, it would be gladly appreciated.
Your suffering friend in need, Karen