Have Dr. Apt with Dr. Oro on April 25th.

What types of questions should I ask when I go to my appointment with Dr. Oro?  I am assuming I will probably get recommended for surgery given all of my symptoms and that the Nurse Practitioner said that she believes he will probably reccommend surgery.  

I had my cine flow study, and my spine mri's but the dr. said its too complicated to go over the results and they will go over everything with me on my appointment for the 25th. Does this sound like it is bad results with my mri then?  

I am not a dr, but I did review my copies of my cineflow and my spine mri's.  I don't think I have any type Syringomyelia  only because I looked online at images of them and didnt see anything like that, but I do think my flow is very blocked , it looks like nothing is going behind around or in my back part of my skull or through the cerebellum area. It was hard to find anything to compare this to though, so that is a complete guess in the dark.  

So assuming that I do not have syringomyelia but I do have a csf blockage, and my severe symptoms that make me want to give up some days, I believe he will reccomend surgery, maybe I am wrong, but I actually want surgery, I am desperate at this point and I am willing to try anything.  Is there anything I should say or ask regarding my mri's, surgery,  ect? that will help me and


How likely is it that I will be scheduling my surgery that day or do I usually  have to have another follow up with him.  I am asking because it took a month to get an appointment and I have had 2 appointments for evaluation and 4 mri's and an exray of spine and believe there is nothing left to test.  I just want this done as soon as possible and the fact that my insurance runs out soon.  

Also how soon is it possible to get surgery? like is it unrealistic to get surgery the same week as my appointment?

Sorry so many questions, please any answers would help even if you cant answer all of them.  

Thank you,

Desperate chiarian and cant wait til the 25th to have all these answers.....

[selmaS]

Hi, and congratulations for getting an appointment with Dr Oro!!

Unless ur condition is severe the dr usually will not schedule surgery right away...they like to review ur condition and options with u and give u time to consider ur options.

First go in knowing surgery is not a cure or a fix....it may help, and it may not....but it should restore CSF flow if  u have an obstruction and slow progression.....and that should help u feel better.But this is a major surgery, and we all respond to surgery and the meds used differently....

We do have a list of ?'s for the NS in the Health Pages I will include the link here-http://www.medhelp.org/health_pages/Neurological%20Disorders/Questions-for-a-Chiari-NS/show/1155?cid=186

I pray u get the answers and help u seek : )

   "selma"

[jenniferk86]

My progression has been very fast.  from 6 months ago I was completely fine and now I can barely walk.  I am having blurred vision and can't live without pain killers, I understand that this is not a fix, but I am willing to try anything as I have tried so many things and nothing has worked and this is getting worse day by day.

[jenniferk86]

Oh.. also , if not surgery, what are my other options for this, surely i cant just keep taking pain meds that don't work for the rest of my life right?  I havent found anything else that claims to really help, is there anything?  I have had surgeries before and responded very well.  Also I have read about tethered cord and how it can be missed on even an mri, would dr. oro be able to tell, because with my back pain and leg weakness I do think this is a possibility for me.  if you have any other information listed besides on the health pages, please share this with me specifically on diagnosing it.

[selmaS]

It all depends what the dr finds.....not being a dr myself it is diff to speculate.....

Dr Oro is one of the top Chiari drs and yes, he will be able to determine if u have TC or not.

The issue is, u can continue to have some of these symptoms post op.....not all symptoms will go away.

U have to look at how this is impacting ur over all health...do u have a CSF blockage, a syrinx, etc.....what type of symptoms do u have?

Keep in mind chiari symptoms cycle....u may be in a flare that is lasting longer bcuz of stress.....try to relax to help reduce some of ur pain.

Relaxing is diff bcuz pain makes us tense up.....and hurt more....try a warm soak in the tub when u r hurting.....nething that relaxes u.

There is  a lot of info on the Health Pages if u r looking for something in particular, just ask and I will see what I can do for u.......http://www.medhelp.org/health_pages/list?cid=186

"selma"

[NicoleEspinoza]

i am the same way you are i want it better now 6 months ago i was fine minus the migranes (migraines) and at a 5mm and now i can barley get out of bed and now am at a 9 i have terrible back and neck pain. i saw my ns a month ago and my surgery is the 27th of this month! hope you get some answers and feel better soon. i know its hard to not stress as i am constinalty stressed and cant seem to shake it!

[jenniferk86]

I am so ready for something, at this point, nothing I've tried has helped and seems to just be betting worse fast, and id rather chance it and get the surgery than sit back and do nothing, if the pain doesn't go away I figure I'll at least stop getting worse, and that's ok with me I'd do anything to just stop getting worse at this point.

[NicoleEspinoza]

i agree with you thats how i feel! im at my end feel like giving up! its soo tough the pain is just unbearable