Introduction of pain

Hello all,
     My name is Rob and I am 30 years old. In june of 2007 I had a spontaneous pneumothorax. Since then I had a constant burning/aching pain in my right upper chest wall. It frequently became a hot poker sensation that ran through my chest anterior/posteriorly lasting from seconds to minutes. This pain literally felt like someone was running a hot knife through me. If I was standing it would nearly drop me to my knees it was that intense. Since the pneumothorax with this pain i had numerous stand up chest films taken with no evidence of reoccuring pneumpthorax and was attributed to pleural scarring.
     However, over the course of the last 4 years this pain has gradually moved to my left side, up in to my neck just at the base of my skull and radiates down both arms. Also I started experiencing intense migraine headaches, foggy thought processes a lot of trouble sleeping and tremor in both hands. This prompted my primary care physician thinking it could be an inpingement of my brachial plexus to order a cervical spine MRI in early Dec. that showed no obvious reason for the pain. I then had a cortisone epidural injection done at the T1-T2 epidural space dec. 29th. This seemed to help the pain for about 2 days, then my pain and symptoms went absolutely haywire. The pain got incredibly intense and I have the sensation of someone cutting me with a knife to the bone from the base of my skull shooting in to the pinky and ring fingers in both hands. The headaches got much worse as well and I could hardly write at all.
     I urged my doctor to have a thoracic MRI done Jan. 12th and this showed that I had a syrinx running from T-2 through T-10 in my thoracic spinal chord. I then had head/brain, repeat cervical, and lumbar MRI/MRA scans done. On the head/brain scan my cerebellar tonsils were shown to protrude through my foramen magnum at 3 to 4.5mm. The lumbar scan showed no tethered cord or Spina bifida and none of the scans showed no obvious spinal stenosis to explain the syrinx other than the possible chiari malformation.
     I have since been to 2 neurosurgeons and have a neurologist all telling me that the 3 to 4.5mm protusion of my cerebellar tonsils can not be considered a chiari malformation even though these were supine scans. Also that the syrinx from T-2 through 10 can not be called a syrinx because it is too long and that it is simply a pronounced central spinal canal. Even with the added information that I have a cousin that had a craniocervical malfomation restricting the flow of CSF requiring surgery and shunt placement at a young age. In addition, two of his three daughters have had spinal cord defects one with tethered cord, the other with a chiari malformation.
     My dilema is that if this is not a syrinx and the 4.5mm of cerebellar tonsil protusion at the max measurement is not a chiari malformation. Then why am I experiencing such intense neuropathic pain? I am currently having to see a fellowship trained pain specialist for the heavy neuroleptic medication that is only moderatly helping. In addition because of the large effect this pain is having on my life I was reffered to see a pain phsychologist.
     Something has got to give...... Please if anyone has any suggestions I will take any and all advice I can get my hands on. The pain is absolutely horrible. I live in Lawrence Kansas and I can not find any chiari specialists anywhere near me.
    
Thank You for taking the time to read my lengthly post.
Rob

[Marybz]

We all here feel your pain.  Dr. Heffez in Milwaukee, WI  will look over your MRI for free and will let you know if he feels your issues are related to CM.  He is a blessing and is very caring.  I have 5mm herniation, but crowding of CSF flow.  Selma will get you the list of CM specialists.  You have a strong family history, you think those two NS would get the hint.  I hope you find some relief.  Take care.

[selmaS]

  Hi and welcome to the Chiari forum.

There r many NS and Nl's out there that r not up on the most current ways to treat and dx chiari...they go by the out dated info that the herniation mandates if it is chiari or not and it must be a 5 mm herniation..the facts r the size of the herniation r not as important as whether or not u have a CSF obstruction and overcrowding..chiari is the malformation of the skull and not the herniation as many believe and go by.

What the drs that do not work with chiari daily do not realize is that even tonsils that do not go beyond 2mm in herniation can cause much more pain and issues than one that is 13mm's in herniation....it is more the width not the length that can cork up the opening.

Family history itself is a huge red flag, but with inexperienced drs, it doesn't matter if it was neon....u need a dr that knows chiari and chiari related conditions. I would imagine u have copies of all ur MRI's to date...and the only one u did not mention was a CINE MRI..that is the flow study....

Next u will want to rule out conditions with similar symptoms like MS, Lupus, Lymes,,,,etc...and then look at related conditions as u have already started with syringomyelia, tethered cord, sleep apnea, ICP,Ehlers-Danlos,retroflexed odontoid and disk issues.

The list of Drs we compiled here of the members drs, is here to help u research drs, and is not meant as a referral- u need to find the dr that is right for u.---http://www.medhelp.org/health_pages/Neurological%20Disorders/DOCTORS-LIST-FOR-CHIARI-SYRINGOMYELIA/show/1062?cid=186

  "selma"