Chiari Malformation Community
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New to Chiari and the forums

Well I have been diagnosed with Chiari 1 Malformation. It's only been a month or so since they discovered that I had it on my MRIs. They were originally conducting these MRIs, X-Rays, and CAT Scans to see the extent of my TBI. I am an Infantryman in the US Army with over 9 years in service and multiple combat deployments. I have had unbearable migraines, severe pressure/pain in the upper back, and severe pressure/pain in my neck. I have also been diagnosed with severe DDJ and Kyphosis of the back. The Army PA I have says he has no idea how to treat my condition and every headache/migraine medicine they have tried is a fail. So they stopped giving me anything and refused to allow me to see the neurosurgeon (my civilian neurologists recommended I see one due to the extreme daily pain I have). I have argued with the PA for weeks about helping me, and it was denied. So now I am retiring medically from the Army and on my own. Some days the pain is so bad I contemplate killing myself so the pain stops. I am reluctant to go to the ER because I don't want to seem like a druggie, but don't know what else to do. Is it reasonable to go to the ER when the pain isn't tolerable?
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620923_tn?1405964489

  Hi and welcome to the Chiari forum.

THANK YOU for ur service to our country !!

We have had many military personal and or family members that were dx'd with Chiari and it seems the Drs do not have a clue how to help u....u will need a true Chiari specialist....

U need to first find out is ur Chiari congenital or acquired....
Next do u have a CSF obstruction...a CINE MRI is done to do this and to help look for over crowding.....

Then u will want to see if u have ne related conditions....syrinx, disk issues, tethered cord, ICP, POTS, sleep apnea, ehlers-danlos,scoliosis....vitamin, mineral levels checked as well as thyroid.

  We do have a list of Drs the members here have been to and liked, this list may not be of all chiari specialists and it is NOT a referral...it is here for u to use to research to find the right Dr for u,...be advised u may not find a Dr close to ur home, and u may have to travel....many of us do....

Know u r not alone : )
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1823499_tn?1370093889
U need to seek out a neurosergeon. Make sure u get all your test results. U will need to find a new neurologist for further testing. I am so sorry the military has treated u this way. After all you've done and been thru already. Thank you for your service and pride in protecting our country. Going to er if needed is something we all do. We need help. I am just started conseling also because I feel as if I wasn't here, there would be no more pain. We all go thru this now and then.I have had 2 surgeries and still have more bad days than good. I also have besides chiari, autonomic dysfunction, occipital neuralgia, a connective tissue disorder and raynauds disease.
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1823499_tn?1370093889
I meant a chiari specialist when I said neurosergeon, sorry
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4294865_tn?1352345997
I obviously have a lot to figure out about my specific Chiari case. As far as I know I do not have any of the other symptoms you listed except I have had RLS since I was a little kid....as my Chiari symptoms have become a daily occurrence, so has my RLS. Makes it damn near impossible to sleep most nights.Luckily the ER doctor I saw last night was very compassionate. He not only gave me 7.5mg Vicodin to allow me to function, he explained to me how to approach my on-post doctor about trying narcotics to treat my pain. We have tried almost two dozen non-narcotic migraine medicines as well as physical therapy (which I was removed from because they couldn't help my condition they said). I haven't asked for any narcotics in the 14 months I've been on their treatment plan with no success. I explained to them I would prefer to not take any meds and to be perfectly healthy....but a little too late for that. If I could sniff Pixie Stiks to feel better I would. They also know that ith my medical retirement papers coming out of the blue it was literally impossible to get me into neurosurgery before I signed out of the Army (which was today). So we got referrals sent up to the neuro in Alaska that way I can get with them as soon as I get up there. Thankfully they left me with a bottle of 800mg Ibuprofen and a bottle of 90 5mg Percocet to allow me to get through my moving/driving. I am so happy I will be able to hold my son and have somewhat normal days for at least a few weeks!
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620923_tn?1405964489

  Good luck with ur move, and do keep us posted on ur progress with these meds.....

  Do not discount the symptoms and issues I listed...I did and later found out I had  an additional related condition regardless....make sure they test u and  rule it out....

I would get the RLS only  once in a while it was never a regular issue for me....lucky I guess...my sleep still eluded me...

  Pixie stixs...that would be great if that was all we needed,.,..lol...

  Have a safe trip
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4294865_tn?1352345997
Yeah I started a "Headache Diary" last week. I hate when they call my pain migraines, because they're not really migraines. Sometimes I wake up with a migraine, but most of the time the pain/pressure starts in my upper back or neck and slowly intensifies and spreads to the back of my head. I can feel them coming and if I have no narcotic pain meds once it hits the head it is "game over" for me. I need to stop feeling guilty about taking narcotics. It is necessary until they can find a better solution. All I know is the typical non-narcotic headache medicine is not going to do the trick.
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1823499_tn?1370093889
I wish u a safe travels and please keep us updated. We r here, u r not alone. The forum is great. Feel free to ask anything and vent also. Hugs,Dana
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Avatar_f_tn
The Army would neither dx nor treat my son, who was in Special Forces.
As he has more freedom now, he's better able to manage the pain, but ofcourse I have to wonder if he has a Chiari malformation too.  He's on an anti-epileptic, as I was until I had surgery a few months ago.

Good luck in your journey.
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