Back & Neck Community
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Avatar universal

What can I do?

In 2004 I had a MRI for severe back pain. The MRI showed that all levels of lumbar and s1 were bulging, herniated at l4-l5, osteophytes throughout same area and thickening of yellow ligaments causing narrowing of the exiting neural foramina bilaterally with compression of the exiting spinal nerves bilaterally at the same level of l4-5. In addition, early spinal stenosis is noted at this level as well. I had back pain for most of my working career, lifting and stacking heavy weight from a kneeling position. (20 years) I didn't have bladder problems until this episode. I used to go 8-10 hours before needing to go, but now maybe 25-35 times in 24 hours. I weighed 215 lbs at 6'1". I had insurance at the time so was able to do PT and told to only walk, which I did religiously and lost 55 lbs. Worked on core building, kept walking and followed the "Back Book" given to me by PT. I always tried to walk anyhow, because when I was 13, 14 and 15 yrs old I had bilateral SCFE. I didn’t walk much for 3 yrs, because in the mid 70's, when your hips were pinned they really cut you open. During 2004 the PT also noted strong possibility of rotator injury.

I worked hard for 3 years, through much pain, bladder dysfunction and virtually no sleep only to have another self paid MRI in 2007 that showed the entire lumbar area to be bulging further, desiccated, protrusion at l2-3, slight herniation at l4-5 and osteophytes throughout. The clinic I was going to made the order for the MRI for me, and the PA there said it was just as bad as the 2004 MRI, even worse, except that the stenosis was not appreciated?? this time. They can only give me Torodol injections and I take Ibuprofen/Tylenol like candy to no avail. Still no sleep and shooting leg and arm pain with pins and needles in the toes, pinky and ring fingers. Sometimes in bed the left shoulder feels as if a hot poker is being pushed through it. I think the most unpleasant part is this feeling as if my feet were burning and under great pressure. They are cold to the touch, but have good circulation. They checked it with ultrasound. It gets so bad now, that I really wish I could remove them. It's worse than the back pain.

It's 2009 now and the whole process seems to be moving up my spine, because my neck and arms feel like my back and legs. I can't get any aide, until someone makes a diagnosis and getting that from the DR's here seems like pulling teeth. I have been referred to Neuro and told I may need a neck/shoulder MRI as well as my head. I'm still paying the clinic and for the 2007 MRI. I feel like giving up! Three years ago, I would have talked anyone out of giving up, but can now no longer see the day as anything but drudgery.

What can I do? What do people do who need diagnostic testing, but have no more resources? I have noticed that my stools are turning quite dark from time to time. (Looks like shiny Hershey syrup with the consistency of honey) I know I can't keep the Ibuprofen at this level, but need it. My legs are feeling weak now and walking is becoming much more difficult and I stumble allot.

I’m sorry for the rant like ramble, but I’m feeling like it’s a bad dream that I keep waking up, to realize it’s not.
3 Responses
Avatar universal
I am sorry to hear of your prolonged discomfort and complex medical problems.
Given your history and the results of your diagnostic tests, it would be expected that you would have progressive degenerative changes in your spine that are producing the symptoms you are experiencing.
Not having medical insurance does create barriers to obtaining the medical treatment you need and paying out of pocket would be very expensive.
If you are not working, are you receiving unemployment or any other form of income?
If your income sources are limited you may qualify for Medi-caid or other low cost medical programs.  You need to contact your local social services dept (through the clinic where you initially treated) and ask for assistance in initiating an application.
Why are the doctors reluctant to provide a definitive diagnosis that would assist you in obtaining the aid you need?
Your symptoms will continue to progress and you are at risk for possible permanent neurological changes that would not be helped even with surgical intervention.
If you have no other options, you should go to a county or state hospital as they are required to assess your condition and stabilize you without requiring financial payment at the time of service.  
I can empathize with the frustration and discouragement you are currently experiencing. It takes a lot of effort to plow through the health care system, but there are avenues to pursue -- even if they require a lot of patience!
I hope you can follow through and obtain some form of treatment that will ease your current situation.
Post again with an update and any additional questions/concerns you may have.
Best wishes -----
Avatar universal
Thank you for your reply. I was feeling so frustrated when I posted and after wished I had held my tongue. Talking or griping about it, only seems to make it seem even grimmer. Sorry it sounded so negative, in part.

I did apply for Medicaid, but here you have to have a determination of disability from SSD to get any help. I have applied to SSD 3 times and was denied, again, last month. I will appeal, but the whole system stinks. I've paid in since I was 16 and am 46 this year. When SSD does send me to a doctor for a test, they will x-ray my knee, instead of looking at the area of complaint. It doesn't make sense. To get on any "sliding scale" at the local hospital, you must apply for state aide, who refuses unless SSD says you are disabled. Being on the scale is the only way to afford the tests needed to prove your case to SSD. To finally get a letter to give the hospital, from the state saying you applied and were denied, you have to sign a statement with the state saying you are not disabled. It's like a two edged sword, you get cut both ways. (Hope that made sense) Lack of sleep makes one quite confused after such a long time.

Again, thank you for your reply. I'm hoping that this bladder dysfunction can be changed, but it has been going on since 2004 and doesn't seem to be getting any better. They even tried Detrol and such (samples), but it did little to alleviate the problem.

387767 tn?1345872027
I am so sorry.  I have a lot of problems with my back and neck and some similar pains as you, but not as bad.

The one thing I want to caution you about is taking too much Advil/Tylenol.  Tylenol is bad for the liver, and I actually ended up with ulcers from taking too much Advil and anti-inflammatories.  I was forced to go off of it, and you know what, the pain is about the same.  It didn't get worse, which was what I was so scared of.  

Have you had your kidneys checked?  Maybe what you think is bladder issues is the kidneys.  You need a urinalysis and blood test to be able to tell if your kidneys are damaged.  I have this problem, and one of the symptoms is protein in the urine and having to go a lot.

Don't apologize for what you wrote.  That's what the boards are for.
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