My story and does this sound familiar?

[momo72]

Hi there-  I've recently found this forum and have been reading nonstop.  I have been trying to find some answers to my pain problem and I think that chiari could possibly be my answer.  I am going to try to "briefly" describe what's been going on and what I would like to know is- Does this sound like it could be chiari to you?  Because if it does, then I'm going to bring it up to my physician.  I don't want to sound like I'm self-diagnosing, but honestly, I'm tired of the run-around.
14 years ago, after the birth of my first son, I started having the worst headaches imaginable and went to a neurologist.  He did an MRI and they found a pituitary micro adenoma and problems with my cervical spine (mild stenosis), but he said that was not anything that would cause my pain and that I had migraines.  He gave me Imitrex, that helped, and for about 4 years, that was great.
Tried to have my 2nd child and needed to get off of the meds, so went chiropractic.  He adjusted me and had a child within another year and tried to grin and bear it.  Went back on the medicine as soon as I could.
After that, my neck started to hurt also and the doctor did another MRI, said the disks were worse, and I had some arthritis in my neck.  I started getting neck injections from a pain specialist.  I couldn't sleep because I was in pain all the time with both my head and neck.  The injections worked pretty well for about 3 years and then I started having to go more often.  
I started having dizzy spells, but not too often, and the pain was in my shoulders as well as my arm started tingling.  He injected me in a different location for a while.
Finally about 2 years ago, I told him the injections were not helping anymore at all, migraine medicine wasn't doing too much and the dizziness was getting insane.  I had to hold on to furniture just to walk into the bathroom and started having to call off work because I was afraid to drive.  The pain specialist sent me to another neurosurgeon and said that he thought my pain was coming from something besides the stenosis and disks.  
That neurosurgeon wouldn't listen to the fact that I have to take so much ibuprofen every day to be able to function and everything was getting worse and worse.  He said "You have migraines".  I told him that yes, I knew that, but I thought that things were getting worse and something else was going on.  He said he would put me on a morphine drip to get me off of the ibuprofen so that I wouldn't have rebound headaches anymore and that would make me better.??  So morphine is better than ibuprofen?
After that, I haven't been able to go back to the pain specialist or anybody else and I've been "toughing" it out by sucking down ibuprofen like they're m&ms.  Now, the dizziness happens any time I move my head, my head has so much pain and pressure in the back it's unreal, I've started to lose control of my bladder and pee on myself after coughing, sneezing, and even the other day when I was just in the grocery store.  My eyes feel full of pressure, my heart has started racing at random times, I never feel completely "with it", I can NEVER get my neck/head comfortable, so my sleep is not very restful, and I am starting to become a total couch potato because I am always tired with a spinny, achy head.
I made an appointment with my primary care and he is making an appointment for me to get an mri of my head and cervical spine and sending me to a neurologist.  I'm waiting to hear back from him.  I told him all of my symptoms, but I didn't say the word "chiari".  I know that an MRI will see the problem if it's there and that I should get copies of my MRI to take a look at it, but I'm afraid that the radiologist won't see it if it IS there because that seems to be a common complaint that I see from people that have this.
Does it sound like I should mention this to him when I go back?  

[selmaS]

  We all know how u feel and totally understand...many of us tried for yrs to get a dx as to what was going on, and got passed off from Dr to Dr that we dubbed the whole frustrating experience "the royal chiari run around".

U r not alone, and until u get a dx, consider urself part of this community and even if ur dx is not chiari u r still a member here : )

[momo72]

Thank you for your responses.  It is very frustrating not knowing what is wrong and feeling pain/dizziness all the time.  

[linnielou232]

We feel your flustration.  Not knowing what it going on and your in pain all the time is very flustrationing.  Wish you the best in finding the right answer's.  Just keep being persistant.  You'll find the right dr. for the right answer's.  

[rod44]

Hi, I agree with Selma. Chiari (Pronounced kee-ar-ee) malformation is just one of many conditions that could be causing your symptoms.
Get a copy of your MRI scan and the report. As Selma said ome doctors do not recognise CM, there is a lot of confusion surrounding CM and it's diagnosing criteria (some doctors believe it is asymptomatic and ignore it) so they don't put it in the report or the NL may ignore it for the same reason so if you do not get a proper DX this time you can send copies of your scan to a Chiari expert.
Bladder incontinence is a worry so you should also see a Urologist as well imo.    

[selmaS]

  Hi and welcome to the Chiari forum.

U have quite a bit going on , a lot of disk and spine issues and many of ur symptoms are similar to those  that someone with chiari may have, however, there are many conditions with similar symptoms, so do not rush to a dx...the disk issues themselves can cause all the symptoms and be very similar to the ones those with chiari have.

Request copies of ur MRI as well as the report....and find out what area was studied....the brain, cervical , spine, thoracic, lumbar...depending on which was done the remaining ones should also be done to rule out related conditions such as a syrinx, tethered cord, ehlers-danlos....sleep apnea....

U will want a visit to a NL to find out what is wrong, tell them all the symptoms u r having, but, not all Drs recognize chiari, so always request copies for all tests u have done.....u may have to travel to get to a true chiari specialist if u do in fact get this dx.

  Good luck and do keep us posted on ur dx

           "selma"