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Am I really being treated correctly or is something else going on?

Started by Cynny200 on 05/15/2015 2:46pm

Hi! Im new and have never posted about my pain before. This might be a little long, please bear with me, but please take the time to read, I truly need suggestions. Any replies I would like to show a doctor. Late 2005, I was victim of a savage beating that resulted in an attempted murder charge, My neck was so mangled it resulted in it being fused from c- down through c-7, causing an edema(spinal cord injury), my ribs were fractured next to my t-spine in 2 places, I lost 5 teeth, my nose was crushed and now sits to the left, My head was kicked in so many times I now have a brain lesion causing seizures that make me go blind, a bruised liver and even my ear was completely black (hard to do even for boxers according to the emerg. room docs. So as a result of these injuries I have failed surgury in the fusions with severe foramanianal stenososis, ans mild up to severe spodylosis (I think thats the bone spurs I have, osteoarthritis, dengenerative disk disease, and now xrays have shown osteopenia. which is usually a precursor to osteoperosis. I cant feel my left arm barely, its like being asleep. So the pain in my neck has been absolutely severe since 2007 when I started PM, I started on 4 norcos a day, and did physical therapy as much as I could. I actually want to get better...and many have told me that. I was very active, this happened in Idaho and I was a hiker, boater an lake dweller! I did gymnastics when I was young as well as cheer-leading, diving competitions and cycling. For a couple years they kept pushing me to get on opana and I refused, I said I was fine with the exercise and norco. But then I started feeling a horrible pain creep up in my T-spine......to where It didnt show in an MRI and a haughty taughty PA even wrote, she seems to always have some insidious pain but recently it was her mid back but I dont know why nothing shows on mri......that was the ONLY other pain I complained about. Another Doctor wrote, "She has unrealistic views that more surgery or other things will cure her" I still did not ask for more or stronger meds. Then I moved to Florida.....

Armed with my perfect pm report I found a new pm doc who promptly put me on oxycodone 30mg 4x daily seeing the cervical problems and FINALLY a big something {bone, tumor?) indenting the thecal sac of my spinal cord in my T-spine. The problem with this is that it was absolutely ridiculous every month to go to a pharmacy and have them say "we re out" and drive around! It is excruciating for me to drive and I went through withdrawals every month. So I tried every thing medicaid had on their list. The Doc straight out said, you need long acting as did the one in Idaho. Morphine inflamed my stomach so bad I had to have a biopsy, the smallest dose of methadone made my heart race so bad I called and he said STOP that could have killed you! Nice... He wrote me for the opana with breakthrough meds, it was the reformulated kind and even though people say these dont work I hadnt felt so good in a long time. The 2nd script needed pre-auth and he said his office doesnt do it and then stopped taking medicaid altogether. I was there from 2011 to 2013....urine tested every month and never failed one.

For 2 years now I have been another pain managment doc. I am in the worst pain I could ever imagine...Still have the neck pain now worse, with a herniated disk pressing my cord at C5, excruciating in T spine whatever is indenting it which makes it feel like a knife in my back and broken ribs all around it, and now nerve pain .I lay all day on a heating pad and as a result I have swollen feet and have even deveoped cysts in some private areas...I know, gross...one serious, a pilaital (sp) But I still managed too 3 months of PT........My pain is so bad I wake up having a nightmare that Im in a hospital hallway begging for help for pain, like when you have to pee and dream something weird about peeing then wake up and gotta go! This doctor promised me ablasions that would end this pain, all this time giving me only 5 norcos a day. I have had 3-4 epidurals and then he did 6 ablasions that was supposed to kill this pain, then start on my neck. Medicaid denied the ablasion where it hurts because of the area (T-10-T-11) The ablasions that were done were where I didnt even hurt in my last T and 2 Ls......He gave me NOTHING extra for these ablasions ans they hurt! Ive had alot of surgery and have had open surgery that hurt less!

So finally after crying and even feeling suicidal every day, (I have a Shrink too, the whole thing was pretty traumatic) I opened my mouth and said, I need something more or stronger or preferably long lasting. I printed out Hysingla which is a long acting norco and begged him to pre auth it and he said he doesn't prescribe it. Since I take adderall for the lesion my shrink raised it because it amplifies the effect of pain meds.

Finally the big question! Please read over all the things wrong with me and all I have done to try to help my pain in other ways and someone please tell me if I am not being believed, even though I have MRI proof, because Im on medicaid, or because I broke down finally and cried in his office! He said there's nothing he can do because the Tylenol limit, and I have to fight medicaid for the ablasions. I had to laugh and tell him Tylenol limit?" I take 3 500 mgs along with the each norco! I seriously know, and read on these things about people who have so much less wrong and are taking way more then what I get, and one norco 10 does absolutely nothing for me! Don't get me wrong, I want the ablasions more then the meds, but until then, life just plain sucks for me! PS: I'm 46, female have long hippy hair and I'm still pretty fit....am I being JUDGED????? Why do I feel like this is just ME? Also, the Idaho MRIs are so much more detailed then the Florida ones, How can I make sure they see both? Everything I wrote on here was shown on one or more MRIs but some just on some......not all.

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9 Responses

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hi I am sorry about what happened to you
the meds I am on are 3 ibuprofen tablets 400 mg each tablet
amatriptiline 10 mg at night I have had a lot of trouble getting
the doctors to understand me now after 3 and a half years of
fighting doctors and I still fight and fight for my rights as someone
with functional neurological disorder and chronic pain syndrome

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Thanks. It is a huge problem especially when at financial disadvantage......I hope you are closer to getting an answer. Did you try the symptoms checker? Any results?

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I will try and do it today I live in the uk in Scotland in edinburgh

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lumbar spinal stenosis
disc herniation
spinal infection
lumbar spine breakages
to name a few I did it on
the American webmd
the next question is
do I stay waiting till the end of June
or go privately in the uk or usa

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Can you go to an Emergency room? Some of those can be serious like infection. If not and you cant bear it, then do what you have to. I would.

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I am actual going to hospital tomorrow for a nerve conduction
on my legs and then on Saturday I am going to see a spinal doctor
who is private a seminar on spinal problems I will arrange to see him
as soon as I can or I will do what I want to do it is very upsetting
that I am still in a serious way that is the problem that the
doctors are still not understanding how bad and serious this is

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Hey! I was doing some research on a drug my doc gave me and I saw a post from someone in the UK who said all the medications they get are free! If your looking to see a doc there still and you need meds, that sure would be nice! Do you know anyone there that you can use their address and say that's where you live? I don't know much about where you live and meds might be free there too. Also when I had an employee from Ireland he said medical was free for everyone.......so I'm not sure how it is where you are. Are you seeing a doc there? I just saw your post, is it less of a wait? I hope so for your sake, you really need to be seen quickly....Good Luck! Let me know your diagnosis when you go okay? Also, ask the Emergency room for gabapentin, I have bad nerve pain from my injuries and it works really well, I also have seizures that I take it for.

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I live in the uk in Scotland in Edinburgh
yes medicin is free the nerve test I had yesterday
was bad but I am over that now well nearly I will see about
the tablets soon

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I feel for you there is much more going on for you than me but both in pain. I have learned thru the years of my spine problem that if you go to a lot of different Dr. they call it Dr. shopping. Basically your looking for drugs I feel that's not your case as it isn't mine. My husbands company use to have good Insurance coverage now it horrible. I had been taking a generic MS Cotin by Endo now my spine collapsed it's off the nerve but now something is crippling my right leg and the new Affordable Health care law all pharmacies are using the cheapest of generics and mine haven't been working for a year so I have to fight the Insurance Company for brand, if you find a good Dr. he will listen to you but your still treated as a drug addict. It sounds like your fighting and your are for your life to be pain free but the option to go to Ireland I wish I could go there but it's not an option for me I wouldn't try it going thru customs. Also your medical records and MRI disks and report from the other state call and request they send them they should do it no problem. Oh lastly Doctors have contracts with all the health insurance companies and if they don't pay like Medicare, Medicaid when there contracts up they cancel so that Doctor may have done that or he's just a ads, but your doing everything you can to get help but I've found the technology for spinal problems are limited to this country they basically only do fusions, herniated disks, and a few other minor things you could possible still be in pain from botched back surgeries. I've been trying to get to that Laser Spine center in Ft. Lauderdale, FL very little ins covers now that my insurance may cover some or most I have to gain weight to have it done this is impossible doing nothing I have no appetite. Good Luck hang in there something has to get better for you.

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