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I dont know what to do anymore...

marleymmarley Posts: 2
edited 06/11/2012 - 8:44 AM in Chronic Pain
I'm so completely lost.
I have no where to turn but it looks like everyone here is very helpful...

long story short, I had scoliosis but my problems just got worse from there. I'm 22, have had 5 spine surgeries, and am still in constant pain. My first doctor really messed me up...and I guess my problem now is that I'm "too fused", my entire spine is fused except for that last disc before your hips (L5 I believe?), I don't know I was young and the doctors didn't take the time to explain to me what was going on so I don't know technical terms. Either way, everytime I move, it strains that last disc.

I have no health insurance, no pain medication, I cant see a doctor....I've tried multiple times to get on disability because the pain is just so intense that I can't stand or sit for more than 10 minutes without being paralyzed with pain, but they deny me every time.

The last doctor visit I had (YEARS ago) said that the only way to fix it is to fuse my spine to my hips, but that surgery is risky and often unsuccessful, and also destroys your flexibility.

I really don't know what to do now, the pain is so bad it brings me to tears and I know I need to see a doctor...but with no income and no help there's no possible way I can. I'm already in debt from past surgeries and hospital stays.

Are there any pain clinics for low-income families? I can't stand this pain much longer but I dont know if I can go through more surgeries either...



  • Wow you have been through a lot. I can't believe you have been denied disability benefits because you are clearly having some major medical issues. Have you thought about trying to find a disability attorney? You might be able to do some research on the internet. What reasons are you being denied? I am sure others will post that are more famiilar with the disibilty system.

    You might want to post the state you live in so people can tell you if they possibly know of any pain clinics in your area that could help. Have you tried some of the local social service offices in your area? They may know of ways to help you. I know that eventually some insurance options are going to become available for people just like you, but that is still a long time coming and you need help now.

    I am so frustated for you it is sad that people just like you cannot get help. I hope that your able to get some help. Try to keep you chin up and keep looking for answers.

  • Best to contact a Government office in your area to see if they have clinics under health clinics or check out teaching hospitals. I wish I had more info but don't live in the States. What about Medicaid? Perhaps if you put your city someone else could help by sending you a private message. I sent you a private message. I have a list of free drug help also. Take care and hope you find some pain relief somehow. Charry
    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
  • i live in the UK and thankfully {even though it has its faults } i can always get to see a doctor and get pain medication ..i think your system is barbaric .i can't offer any advice ..is there not a system for people with no insurance so you can at least get some pain relief??
  • I am so sorry for your suffering but your best bet as far as income is SSDisability...and you can get it. You need a Social Security Disability Lawyer...they "will" get you your money...and health care...may take some time but, hey you have been without it this long! Now, you will also get back pay from the day you are determined to be disabled. Now, the attorney will get a portion for their services (one time) but they are more than worth it. Feel free to pm me for more info if you need to. I have been on disability since 1991...worst part is all the forms you have to fill out but your disability lawyer will help with that. You will need all your medical records...all the info you can get your hands on will be needed. In the meanwhile I will be praying for you...
  • I disagree with those saying that you can definitely get SS disability. It is worth contacting a lawyer to see (there are free lawyers out there to review your case), but they may not be able to help. Being over 18 but still young makes it difficult if you have been unable to work and earn enough credits to be considered to have coverage. There are also all kinds of rules regarding the "date last insured" and "date of onset," which also depend on work history and when you officially became disabled. I just say this because it is not a "sure thing" particularly for people that become disabled at a young age and haven't been working full time for many years. I agree it's worth pursuing further, but I disagree with the impression that you can definitely get it.

    There *are* resources available for people without insurance, but they vary from state to state. I'd recommend googling for advocacy groups that help the uninsured- there are quite a few different groups and the webpages should have links to resources based on state. You can also google your state and uninsured to try to find some local resources. There are also some great articles on Cnn.com and other news resources, particularly in this economy with people losing jobs and benefits, with suggestions on what to do if you lose your insurance.

    While there are not usually free pain clinics, it might be worthwhile to go to a free clinic in your community and see if they can refer you to some resources.

    Big hospitals and treatment centers usually have protocols in place to offer financial assistance to patients without insurance. Sometimes it is just a matter of asking. You might call and see if any of the pain clinics in your area offer this (it is more likely if you go to a clinic associated with a hospital). You could also call individually practicing pain doctors in your area and just ask if they are able to negotiate down costs for patients without insurance.

    As others have said, medicaid may be an option. Also, supposedly the beginnings of reform should be kicking in for "high risk" people in September so you may qualify for something later in the year?? Who knows, though?

    Just keep looking for answers and resources- it takes some work, but there are resourecs.
  • There is always help - sometimes it is very hard to find. Especially when you are in pain, have little income and few resources. Where you live makes a huge difference in how you approach getting help.

    If you are in the US you can go to your local county or town health department. Or contact your local representative's office. They can direct you. Be prepared for disinterest or frustration. While government is supposed to be knowledgeable and helpful there are many within who are not. If you meet a wall just go around it. It may take a few starts before you find the right place.

    LALA is correct that you may not qualify for SSDI but there are other programs. If you are very low income then you may qualify for Medicaid (not Medicare). If you do have enough work credits for SSDI understand that it takes many years especially if you are young before you will get a final determination. There are lawyers who handle just this and they offer free consults. I would do this so you can find out if you really have a chance.

    As Straker says if you are in the UK or another country that has national health care you shouldn't have a problem getting care.

    You have been through alot already. Before doing any more surgery you really need a complete evaluation to see what is causing your pain. A teaching hospital may be your best bet. Your situation is unusual and often they will waive fees in order to show their students your condition.

    I hope this offers some help. This is a very difficult situation. But don't give up. There is help out their, you just have to find it.
  • thank you all SO much...I've been pulling my hair out over this because I can't seem to find any info, you have no idea how much your responses help.

    I live in California, our welfare/gov assistance offices are SO hectic here...its very hard to get an appt within a reasonable time and I often find myself unable to figure out which office is the right one to visit. But the last few times I've tried for disability..well it was really quite messed up because they would turn me down based on my physical condition, saying I could lift 20 lbs w/out pain and run and walk easily (hey I was walking on a crutch at this point the pain was so bad in my hip&leg) and they did all this without even doing a physical evaluation...is that right?!

    Either way I have worked 3 jobs, but have had to quit all 3 because of the pain, sill I dont think I had worked long enough to qualify for SSI disability...

    I'm going to check out Medicaid, probably should've done this sooner but I swear I've had no help on this and had no idea where to even start looking.

    Thank you so much for helping!!
  • Hang in there. Your going to have to get an attitude that "This is my mission and I'm not letting anything get in my way". Don't take no for an answer and keep searching until you find the help you need. I can imagine that you are very frustrated and it's easy to want to give up. You've got a lot of support here so check in when your having a bad day and need a little pick me up. Keep on keeping on!!!!

    Someone mentioned a teaching hospital. If you have a local teaching hospital it may be worth giving them a try. You have an interesting back so they may want to take you on as a patient.

    You have the power!!!
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