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Chiari 1 Malformation, Kyphosis, DJD, Pain
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Chiari1 posted:
So recently I have been diagnosed with a whole bunch of things. I have been in the US Army Infantry for over 9 years now and have multiple combat deployments under my belt. I have had intense migraines, back pain, neck pain, and pressure throughout those areas for a long time now. After complaining enough about these, I was tested for TBI (IEDS) and was found to have this condition. While conducting X-RAYS, MRI's, and CAT Scans they also found that I am suffering from Chiari 1 Malformation. I am retiring tomorrow from the Army for medical reasons including TBI w/migraines, PTSD, Depression, Anxiety. Army doctors are terrible and literally told me they have no knowledge of how to treat me. After numerous arguments with the Captain "treating" me they finally quit servicing me all together. Great, I know. I am in extreme pain almost every day and usually I am good with tolerating it. But some days I literally consider killing myself to end the headaches, spinal pain/pressure. I have also been diagnosed with severe Degenerative Disk Disease in my L&T Spine, as well as severe Kyphosis. Would I be out of line to go to the ER during "breakthrough" pain episodes?? I have nothing prescribed to me and OTC meds have no effect on the pain. It literally starts creeping from my upper back into my neck, and then my head. Once it gets to this point I cannot stop it or bear it. What should I do???
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Chiari1 responded:
HEEEEELP!!!!!
 
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77grace responded:
Hello Chiari1,
I want you to know that I think I know how you feel!!I used to get vry servre headaches,they would last 4 or 5 days!I could'nt eat I could only lay in bed in a dark room with Ice of heat and sometimes a bucket so I cxould through up!Gross I know but I do underestand!I too wanted to end it!Thankfully my headaches are better but my Disease has spread and now my pain is on the whole left side of my body,along my spine!I have tumors that grow on the nerves!
Are you seeing a Dr.??You need to do that!Tell him how Bad it is!Do you take any meds now??You mentioned Breakthrough pain,I too have gone to the Er.!Just be careful with what they give you for pain!Some of it is very addicting!It sounds like your spine is really messed up like mine is!
I will keep you in my prayers.Blessings 77grace
 
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smann68 responded:
I have chiari malformation along with a lot of other problems. Yes, definately go to the ER for breakthrough pain meds. First, you need to find a dr. that specializes in chiari or a least knows a LOT about it. It can be hard to find a dr. that knows a lot about chiari, but it is very important! You can get really messed up with a dr. that just thinks he knows about it. I did. you can go to either the wacma(world arnold chiari malformation assoc.) website or the ASAP(don't remember exactly what that stands for) for much needed info. your chiari dr. may even be able to help you with your other problems. best of luch to you!!! let me know if you need any other info. many prayers and very gentle hugs to you!
 
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Chiari1 replied to smann68's response:
Yeah, everyone I have seen so far has no clue what Chiari 1 even is. It's a joke, they just pass me off because they don't know how to treat me and are reluctant to give me ANY meds. We've tried around 2 dozen non-narcotic meds and they have had zero positive results...only negative side effects. I ended up going to the local ER last night when the pain became unbearable. The ER doc was very understanding. He ended giving me some hardcore narcotic IV drip and a bottle of 7.5mg Vicodin. He coached me on how to approach my uneducated "doctor" on post today about getting the medicine I need for the pain until I get up to Alaska and can see a neurosurgeon. I just explained I know they don't really understand Chiari (even I don't) but the fact of the matter is my pain is unbearable and I have been patient with them and tried everything they gave me. Without narcotic pain meds I literally can't function during the day or sleep at night. I was very honest with them about how terrible the pressure and pain is for me and if is was up to me I'd choose to be healthy requiring no narcotic meds at all but I Chiari and there's nothing we can do about it. So they gave me a bottle of 800mg and a bottle of 90 5mg Percocet to go with it. I'm not a huge fan of being on these pills, but having the ability to live a somewhat normal life for the next few weeks is priceless to me.I'm so excited to not dread being awake! As for the weed....that would be the absolute last resort for me. But with my severe PTSD/Anxiety it might work better than the Xanax they had me on (I black out if I take Xanax and I refuse to take it anymore). But thanks for the help, I really appreciate it.
 
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Chiari1 replied to Chiari1's response:
  • *800mg Ibuprofen**

    PS- Are there any narcotic meds that do not contain APAP?? With the 800mg Ibuprofen and the low narcotic level in the meds, I would really prefer to not have all the APAP in my liver. I didn't want to say anything to the doc bc the Percocet is FAR better than the no meds I had before!
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    annette030 replied to Chiari1's response:
    Oxycodone can be had without any added drugs at all.

    Drugs like oxycodone and hydrocodone, with APAP, added can also be gotten with only 325 mg. per tablet.

    Take care, Annette


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