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Spinal stenosis w/ chronic pain getting worse with no insurance (long)

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Posted 12/11/2008 4:13 PM (GMT 0)
Hello. I'm new to the forum so first I am going to give a history on myself and my medical problems.

I am 24 years old male. Six foot 250 lbs. I have a wife of 3 years and a son who just turned one year old last week.

When i was 13 I went to the doctor because i had what i thought at the time was severe leg pain in both legs. They first told me it was just growing pains. We kept going to the doctor over the pain for several months before they decided to do a ct scan. They Found out i had scoliosis and that I was also born with one kidney. Fast farward a few years to about 16-17. Now I got another symptom. My back started to hurt pretty much all the time. I went to the doctor again and they said it was the scoliosis and basically I would have to deal with the pain. I kept going back to the doctor and evintially they decided to do a mri on my back and found i had spinal stenosis and 3 bulging discs in my back. They decided that the best option would be to do nothing for me. about a year ago My legs started going numb on me and I was having balance problems. I went to the doctor who scheduled a mylogram for me and referred me to a neurosurgeon. The neurosurgeon said it is now severe enough to where I possibly need surgery and he was going to refer me to his partner and send me to get shots in my back of something. Well, one month later insurance tells me that it is a pre-existing condition and that they will not cover it. I tried to fight it but lost and could not go to a doctor. Six months ago the pain in my legs and back and the numbness in my legs became so severe i had to quit my job leaving me uninsured. I started going to a free clinic and they said I do need to have surgery on my back but it is to expensive for them to do it and that I would need to get insurance to cover it. One week ago i started feeling extremely cold in my feet and lower back. Also My balance is so bad I have fell about 4 times in a week and I am unable to even walk short distances without having to sit and catch my breath (short distances = living room to kitchen ) Then yesterday i urinated on myself twice and went to the ER. They ran blood work and tested my urine and found nothing wrong and the doctor said I need to go to the free clinic again and have then schedule a mylogram on my back to see if the spinal stenosis has progressed. Called clinic today and they said that they dont have the equipment or the means to do the test that i need done. I have applied for Tenncare and they said that my wife makes to much money for us to quailfy. I also applied for disability but it could take years to go through if i even get it. Do I have any options available to me?

btw i forgot to mention the clinic did prescribe me tramadol 50mg to take qid. The medical student said they cant prescribe anything greater than tramadol due to possible addiction. The tramadol has 0 effect on me and after the first month of taking it I never got it refilled.
Posted 12/11/2008 4:46 PM (GMT 0)

OMG, my jaw was dropped as I was reading your post. I am so sorry you are suffering so much and I am in disbelief that no one is helping you. Where do you live? In the US or another country? You sound almost like me, as I had severe spinal stenosis. I felt fine and exercised regularly, was thin, etc..until I was 33 or 34. Suddenly I started getting back pains and spasms on and off. I took this med and that med, blah, blah. In 3 1/2 years my condition progressed to almost where you are. I never lost complete control of my bladder, but I did (and still do) have bladder problems. I could no longer walk upright and when I tried to walk, I could only shuffle about 20-30 feet and I, too, would have to collapse. So I know exactly what you are going through and just how excruciating it is. I did still work though, because I had to and I had insurace. My insurance did cover my surgery completely, though. I am much better off now, but I still have problems. I just can't believe that no one is helping you.

And do you know how the insurance came up with this as a pre-existing condition? Did they say you had treatment for it before you got that insurance?

Ohhh...and another thing, with your losing bladder control combined with your stenosis and all nerve compression, etc...I am not a doctor, but it sure sounds to me like Cauda Equina syndrome, which is an emergency. I can't believe the ER didn't think of this!?!? It's really awful the way you are being treated. I am not sure what else you can do, except try a different ER or call your local Social Services Department. Maybe they can direct you to different programs that might be able to help.

I had also tried tramadol and it did zilch for me. No pain killer really helped me. I tried many different meds plus epidural injections of steroids. The injections did help some of my nerve pains, but only for a few weeks. I don't know what is causing your stenosis, but mine was caused by bone overgrowth, ligament thickening & buckling into my canal, and disk herniations. So the only thing that might help was to have surgery to remove the bone, ligament, and disks.

I'm sorry, I am just still in disbelief and you've been suffering since a teenager. The way you are progressing, I hate to say this, it's possible you may end up with unrepairable nerve damage. I wish I could tell you what else to do, except to go somewhere else.

Posted 12/11/2008 5:06 PM (GMT 0)
Answers to your questions:
Live in Tennessee
They said it was pre-existing due to I have had back pain all my life and not after i got the insurance.
I was thinking about going to another ER but the cost from going to he one i just went to is gonna be several thousand dollars which I can not afford.
My spinal stenosis is caused by the scoliosis which caused the herniated discs in my back which caused the stenosis from what i understand.

Update: I just urinated on myself while typing this response. I have looked up cauda equina and that sounds exactly like what I have. The ER doctor did say that my stenosis is in l2-l3 (dont exactly understand what that means except for the location on my spine i guess) and so he doesn't understand how i could be urinating on myself and that I would need to get a mylogram to find out if it has progressed which he could not due because of cost and i'm assuming the next ER will say the same thing.
Posted 12/11/2008 5:21 PM (GMT 0)
Lolcashment,
I am so sorry for all you're going through. It is completely unfair. I'm not a doctor but from what I know CES is an emergency condition and I would go back to an ER and demand that they treat you. Take in your urine stained clothes if you need to (I know that sounds gross, but it's just a thought I had). Is there a hospital that's affiliated with a religious tradition? They MAY tend to treat you better. The other thing you might want to do is call your local legal services office and ask what to do if the ER refuses to treat an emergency condition. Hospitals get federal funds and must treat emergencies.

Some states also have catastrophic types of coverage which maybe you would be eligible for, but right now you need some treatment. Be sure to list all your severe symptoms, maybe even print out CES symptoms and circle what you've got and take it to an ER.

I wish I could help more. Maybe others will have more suggestions.

PaLady
Posted 12/11/2008 6:00 PM (GMT 0)
I am so sorry for whats going on. I too lost my job, and have no insurance. No one will touch me. I can't get state help (Fl) and I used to live in Tn & Tenncare is good stuff (I had it when I was about 18). Where are you at in Tn? Have you considered calling a student teaching school, for example Emory in Atlanta- if thats no too far. Start finding out where you can get the help. Urine problems are pretty common with back issues, I have them too & the burning in my leg, etc. Though I have never lost my urine, its more like I have the urge & can't go. BTW, I am a 31 yr old female. I have 6 bulgi ng discs in my back & was recently told though I have what is considered disabling issues, due to my age & college education I will have a very long fight. (years) The lady at my drs office did say that (she used to file SS claims) since I have a history of depression I need to see a therapist regularly that depression trumps a higher card than back pain. I couldn't believe it either. I don't know if you have depression, just common for most CP'ers. Make some calls & talk to your drs to see what they reccomend. I did find out that unless my dr documents everything (every painful conversation) that there is little hope for disability. Also, there is a teaching hospital called Shams, I believe is the spelling, see if you can find one close to you. Call some hospitals & ask where they do these surgeries for cheap. I hope this helps you some. Hang in there....... -Shannon
Posted 12/11/2008 6:45 PM (GMT 0)

Hi Lolcashment and welcome to Healing Well. At least by finding us you will find people that have the same problems as you, chronic pain and you certainly are not in that boat alone.

First have you tried to get Medicaid. Medicaid is for people with limited funds and not working.  If you have not contacted them, please do so. Have you checked with all of the hospitals in your area to see if they have an indigent type program for people like you, no money, no job and unable to work? I know a couple of hospitals here where I live have such a program, in fact usually a case worker at the hospital will help get you on Medicaid. I think you said you had filed your SSD so keep up on that deal.

The urinating on yourself does not sound good. It sounds your like situation has got a whole lot worse. about the scoliosis, as a child I know they go by it being ou so many degrees befire you are a surgical candidate. Were you at that point when younger? I know St. Judes and another hospital did free surgery on young children for the scolosis.

According to what you wrote about your MRI results, your disc problems are a little higher up in the back. The most common level with problems for people is the very bottom disc called L5/S1. The L numbers get smaller as you go up your back such s where your problems are showing.

Have you considered contacting your local congress person to see if they can get you in the right direction you need to be for medical help? I what one of the other members said & take the wet clothing to ER with me. 

I am going to try to think of some other options about your situation and see if there is anything else you can do. Keep posting & letting us know how you are. Susie                                                                                                                                                                                              

Posted 12/11/2008 7:01 PM (GMT 0)
lolcashment,
I really can't add any advice to what you've received.
What you are going through is not good. It does not
speak well of the United States. Print out this thread
and send it to Obama. (I mean it)
I am in fury that this is your case - makes me want
to put my fist through the wall.'
I wish you the best.
Pamela
Posted 12/11/2008 7:03 PM (GMT 0)
Yes, and as Straydog aka Susie says ... Keep posting.
There are some pretty smart people here. We won't
stop working on your case until you have it taken care
of.
Welcome, lolcashment!
Pamela :-)
Posted 12/12/2008 1:30 AM (GMT 0)
Thanks for all the messages, feels good to know others are going throught a lot of the same stuff I am. I do have a update tho, I went to another clinic today and they said go straight to the hospital and the doc i seen at the clinic is a ER doc at the hospital that i went to. When I got to the hospital I had to walk about a mile to the ER (they are doing construction on the hospital and I had to park really far away). Once i got into the ER they checked my blood pressure and heart rate and obv it was really hi. I say obv because i was so out of breath I felt like i was about to faint. I told them check it in like an hour after i've catched my breath and so the next time they checked it I had just gotten back from getting a chest x-ray due to they said i had a heart problem due to my blood pressure was so hi. So when they checked it again obv it was hi again cause i had just walked from the x-ray room. I did get a MRI tho and they said everything looks like it did last time i had one and told me i'm good to go. They did hand me a paper tho that said if I am out of breath or unable to walk normally to return immediatly. I thought about walking out, going back in and saying i was out of breath and unable to walk good so i followed what the papers said and came back. Oh well, guess thats the second ER i've been to and they said nothing was wrong. I even urinated on myself during the physical exam they made me do and again on the bed while i was waiting to be taken out of the MRI room. I may just contact my local congressman and see what they can do.
Posted 12/12/2008 1:33 AM (GMT 0)

Hi lolcashment,

I'm so sorry for what you are going through. It sounds absolutely horrible. I can't really add anything to everyone else's advice because I don't know too much about back problems or bladder problems since my chronic pain is in a completely different area, but it does sound serious. But I think you got some good advice & I agree with everyone else that you should go back to the ER and have them take another look at you.

Well, I basically just wanted to welcome you to HW & let you know that we are all here to offer you support. This is a great group of people. It is unfortunate that we all have to be here because of pain. I hope you can get back into the ER & get some answers. Keep us posted on how everything goes.

Skeye

Posted 12/12/2008 2:23 AM (GMT 0)
Hi lolcashment,

Welcome to the CP forum, I do not know what to say and as I am in Australia are completly shocked at the medical system in the USA. if I was you you I would be sneding copies of all your symptoms and history to every member of goverment and CC every media outlet you can think of!

It may sound silly but trust me some-one will wont the story and some elected member of goverment will wont to be the hero. who cares who you get the help also send photos of the family. The media loves this sort of story to fill dead spot.

you have found the right place we all can offer each other support and ideas.

David
Posted 12/12/2008 5:08 AM (GMT 0)
Lolcashment,
It sounds like the ER visit became focused on cardiovascular issues. What did they say about the urination and possible CES? Although it's also not a pleasant thing to contemplate, David has a point about use of the media, especially as a last resort. The President Elect just gave a speech on health care today. With the problems in our U.S. economy (really, around the globe) I fear health care could once again get back burnered. But I think human interest stories such as yours can help keep the public focused on it, especially if you can't get treatment via the emergency room. I'm wondering if they are just passing you off because no one wants to do the surgery with you having no insurance.

Is there any possibility of getting coverage through your wife's job?

PaLady
Posted 12/14/2008 5:48 AM (GMT 0)
lolcashment what part of Tn are u in? I live in Nashville...used to live in Knoxville. I have the same thing Spinal Stenosis amolng other things and I had spinal fusion about 3 yrs. ago. If you want to get in touch I might be able to hook you up with some names of Pain Docs. I can almost guarantee that you will have better results. I only pay 80 a visit without TennCare plus 100 for scripts. i just reapplied for TennCare and should have it next week...

Me.
[email protected]
Posted 12/14/2008 2:42 PM (GMT 0)
Hey uniquelyme, I live in the tri-cities. I'm sure you've heard of it if u lived in knoxville. I got a appointment tomorrow for tenncare so we'll see how that goes.
Posted 12/14/2008 7:16 PM (GMT 0)
L-
Is it possible you have a patient advocate through your health insurer? I have one through mine & she has been great at helping identify options for me. She was able to work with the doctors to negotiate a very reduced rate & a payment plan when I ran up against the "pre-existing condition" clause several years back (now there are laws against that in my state as long as there is continuous coverage; while TN has different laws, it seems like some of them might help. not sure though, *definitely* need to check with an attorney). Susie also had a great idea about contacting your congressmen. Another option (unfortunately it would require waiting until January) is to try the Nashville Bar Association. Here's info about how to get some free advice from them:
Dial-A-Lawyer
On the first Tuesday of each month, between 6 p.m. and 8 p.m., volunteer attorneys from the Nashville Bar Association answer questions from members of the public who call (615) 242-9272. I know you're from Knoxville. They don't have DAL services, but the laws should be the same in Nashville, so it could still be worth the phone call.

One thing that could make a difference is how long you have had your current insurance policy before you sought a pay-out. You need to consult an attorney in your state, but here's the basic idea:

Tenn. Code Ann. §§ 56-7-2803. Preexisting condition exclusions — Period of creditable coverage — Special enrollment periods. —
(a) A group health plan, and a health insurance issuer offering group health insurance coverage, may, with respect to a participant or beneficiary, impose a preexisting condition exclusion only if:
(1) The exclusion relates to a condition, whether physical or mental, regardless of the cause of the condition, for which medical advice, diagnosis, care, or treatment was recommended or received within the six-month period ending on the enrollment date;
(2) The exclusion extends for a period of not more than twelve (12) months, or eighteen (18) months in the case of a late enrollee, after the enrollment date; and
(3) The period of the preexisting condition exclusion is reduced by the aggregate of periods of creditable coverage applicable to the participant or beneficiary as of the enrollment date.


In the meantime, you can contact your State Department of Insurance to look into mediation. Here's their info:
Consumer Insurance Services - Vickie Trice - Director
(615) 741-2218 or 1-800-342-4029 (inside Tennessee)
Consumer Insurance Services exists to educate consumers and mediate insurance-related disputes.

Best of luck to you! I sure hope you can get this resolved soon!
frances
Posted 12/14/2008 7:22 PM (GMT 0)
lolcashment,
Johnson City area? Yep. I really hope all goes well at your appt. I def know how it feels...I don't have insurance right now either, but hopefully next week...... I am lucky, I only pay 80 a visit, and another 100 for scripts. If it were any more I'd be in trouble....

Good Luck

Me
Posted 12/14/2008 8:43 PM (GMT 0)
David H,
Hmmm ... So Australia is humanistic toward the ill. That's great. More than great.

I'm gonna do something. Send a letter to someone in power. Gotta. Gotta do it.

My stomach lurches when I read some of these horror stories of what people in
the United States go through while trying to find health care.

locashment: Just print out your first post and the responses and send them off to the newspaper
or to your congress person. (You'll find that address in the front of the phone book) You
express yourself clearly and will be a good person to speak for all who are suffering.

I will maii SOMETHING tomorrow. It comes at a bad time for me .... We're house moving.

Pamela

More later.
.

Post Edited (Pamela Neckpain) : 12/14/2008 1:46:33 PM (GMT-7)

Posted 12/16/2008 12:22 PM (GMT 0)
Hey guys, another update, I finally got approved for tenncare and am going for my first appointment to a real doc today. yay
Posted 12/16/2008 12:54 PM (GMT 0)
Thats wonderful. Make sure to come back andl let us all know how it goes!
Posted 12/17/2008 2:28 AM (GMT 0)
lolcashment
You see.....Good thoughts from all of us good people did you some good.....Let us know how things go....we are all hoping for the best.

Me;
Posted 12/18/2008 12:56 AM (GMT 0)
The doctor that tenncare sent me to said the tramadol I am on is sufficient for pain and that if i get worse with my symptoms to make another appointment. Doctors suck.
Posted 12/18/2008 1:12 AM (GMT 0)
it makes me sick that a person that has depression only , or drug addict or a drunk can get help faster from the goverment then someone with documented and proven physical disabilitys , everyone i talk to tells me to play the crazy card so i can get financial aid faster ,it rediculis
Posted 12/18/2008 11:37 AM (GMT 0)
Lolcashment,
Many years ago when my neck pain was getting to be unbearable, the Doc gave me a new miricle drug called tramadol, said it would take care of my pain. All it did was give me a terrable headacke! The Doc said just keep taking it, I spent a week w/ bad neck pain & a headacke before going to see a different Doc. It really sucks that these Dr's think that these drugs work the same on everyone when they don't! What a waiste! I hope you find some releif soon.
Your friend,
Pete
Posted 12/19/2008 11:14 PM (GMT 0)
Man oh Man....why do these Doc's think they know alll about pain? Let them get injured and take freakin Tramadol...they wouldn't last one day before they got a script for Oxy 80's...Ultram......it SUX...

Me.
Posted 12/20/2008 1:18 AM (GMT 0)
i used to have tenncare when i lived in tennesse about 10 years ago- as long as it hasn't changed- you have some great insurance. now you can start the path to feeling a little better!! congrats!!
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