Chiari Malformation Community
Introduction of pain
About This Community:

This patient support community is for discussions relating to Chiari Malformation and Living with Chiari Malformation.

Font Size:
A
A
A
Background:
Blank
Blank
Blank
Blank Blank

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
Related Discussions
6 Comments Post a Comment
Blank
Avatar_m_tn
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.
Blank
620923_tn?1405964489

  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"

Blank
Avatar_m_tn
Hi Rotimber,

I came across your post and felt like I was looking in the mirror! My name is Al, I am 30 years old and from Calgary, Canada. When I was 16, I had a spontaneous pneumothorax in my left lung. Since then, I have experienced similar chest pain to your description. At the age of 25, I had a CT-scan after a week-long headache and was diagnosed with Arnold-Chiari, Type 2. As the headaches were not constant, the doctor told me to come back to see him only if the symptoms increased... well they have... BIG TIME! I am having severe chest pains and am constantly taking T-3 to battle the headaches. Also starting to suffer from mood disorders from the constant pain. I am now restarting my journey to resolve the issues with my new family doctor.

I would love to know how you are doing and what you've discovered since your last post on MedHelp. Are there links between CM and pneumothorax? I need more info to prepare for the neurologist I will hopefully be seeing in the next month. As well, if you have found a doctor that understands the linkage between the two conditions, I would love to get their contact info. Thanks for reading.
Blank
620923_tn?1405964489

  Hi and welcome to the Chiari forum.

The member u addressed in this post has not posted in almost a yr....u may want to try and send a PM (private message) that way he will receive an  e-mail that someone is trying to contact him if he is not still trolling the site.

If u would like info from the other members, start a new thread we may have insights that can help u : )
Blank
Avatar_m_tn
Thanks for the help. I have already sent him a similar private message and on your suggestion, will start a new thread soon. Thanks for helping out a newbie!
Blank
620923_tn?1405964489

  No worries, if there is ne way I can help u, please let me know : )
Blank
Post a Comment
To
MedHelp Health Answers
Recent Activity
1755089_tn?1376057155
Blank
drewlevas uploaded new photos
2 hrs ago
Avatar_f_tn
Blank
lorjojack joined this community
Welcome them!
11 hrs ago
Avatar_f_tn
Blank
Ashkaikyl88 commented on When Your Cold Is Not...
22 hrs ago
Top Neurology Answerers
620923_tn?1405964489
Blank
selmaS
Allentown, PA
7489440_tn?1392096009
Blank
kwalker0004
Pocomoke, MD
Avatar_f_tn
Blank
mikeysmom1995
Oxford, MI
1751596_tn?1406776760
Blank
kristy12
Berlin, Germany
4816750_tn?1368808270
Blank
frankie_rush
New Tazewell, TN
979826_tn?1389039958
Blank
soccero
germantown, MD
Chiari Malformation Community Resources
RSS Expert Activity
242532_tn?1269553979
Blank
The 3 Essentials to Ending Emotiona...
4 hrs ago by Roger Gould, M.D.Blank
242532_tn?1269553979
Blank
Control Emotional Eating with this ...
Sep 04 by Roger Gould, M.D.Blank
242532_tn?1269553979
Blank
Emotional Eating Control: How to St...
Aug 28 by Roger Gould, M.D.Blank
Top Neurology Answerers
620923_tn?1405964489
Blank
selmaS
Allentown, PA
7489440_tn?1392096009
Blank
kwalker0004
Pocomoke, MD
Avatar_f_tn
Blank
mikeysmom1995
Oxford, MI
1751596_tn?1406776760
Blank
kristy12
Berlin, Germany
4816750_tn?1368808270
Blank
frankie_rush
New Tazewell, TN
979826_tn?1389039958
Blank
soccero
germantown, MD