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23 years, No diagnosis, No effective treatment. Crippling pain

Pain started 23 years ago.One day just started hurting. Had the pain on and off for 13 years. Tried doctors, physio's - nothing worked. The pain would go away for a year, then come back. The last time I'd seen a GP, he just gave me some pain killers. Took myself to see a chiropractor. He found my sacram out of alignment, and aligned it. After about 6 weeks, the pain went away. I thought I was cured. 10 years later, and it started to come back, and the chiro's adjustments were not helping anymore. Back on pain killers again -stronger. Up to 50ug fentanyl patch. Without the patch can't even get out of bed. Asked my GP for referrals to pain specialist and neurosurgeon. Have had CT and MRI, and according the neurosurgeon, a very well respected physician (ex-pat American living and practicing in Australia), not only is there no abnormality, my spine looks very healthy. Pain specialist started sending me for diagnostic injections. So far have had local anasthetic/cortical steroid injections in:-
Right SI
L5/S1 Epi
T12/L1 Epi x 2
T12/L1 R facet
T12/L1 R peri
L1/L2 R perir x 2
L2/L3 R peri
L3/L4 R peri
L1/L2 R peri local only
L2/L3 R peri local only
L1/L2 R facet
L2/L3 R facet

The first L1/L2 periracular nerve injection actually gave me a couple of days of relief, before the pain came back - that's why I had a second one. After all these, the pain specialist said he couldn't help. One of his colleagues referred me to their physio. Treating me at L1/L2. The disc is tender to press on. On the one time he used the therapeutic ultrasound on the area, it caused so much pain (referred along the periradicular nerve) that I could barely walk for a week. We've determined that L1/L2 is the source of the pain, but nothing shows in scans. How can I get some effective treatment, if we can't diagnose what's wrong? Can it be caused by compression that's not showing in any scans? I intend to get another CT on it next week. Got a borrowed nubax - am using it regularly.
11 Responses
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Avatar universal
Have you got a doctor with whom you can discuss your pain medication? It sounds like the fentanyl patches may be an option for you. It's not necessary to live with pain in this day and age, and you've certainly got the evidence of the injury that caused the situation you're in. You HAVE to talk to your doctor, and you HAVE to obtain some suitable medication.
Helpful - 1
Avatar universal
According to the specialist I saw on Friday, the CT guided facet joint injections are useless. In a couple of weeks, I'll be getting these nerves blocked using an X ray fluroscopy procedure. If that works, then I'll get radio frequency nerve ablation done on them.
Helpful - 0
Avatar universal
Got my CT results yesterday. Absolutely no abnormalities in the area of L1/L2. In fact, all scans show me has having a very healthy spine.
Helpful - 0
Avatar universal
Hello,I'm a 34yr old female that had a compressed Fracture to my L1....in a snow ski... accident. Jan.02.2009..were my family and I were we coulndt get emergency personal..on mobile Phone...to make story short..got to hospital CRYING IN EXTREEEMMM...PAIN...they gave me a morfine....shot...got mri ct-scan..got admitted to hospital...they relesed me two days after with a brace....and was Sent home in PAIN....vikidin.....Was the only thing that took the pain away....but I don't drink anything..and I'm in Pain when I walk when sit and I've never woke up feeling that I've had a good sound night of sleep...my doctor send me to a pain managment clinic....but I got upset at him. ...for telling me that ther was nothing else he could do....and I haven't gone back to see NO...doctors I've been a very hard person to live with I'm always in a mad mood....because I'm in PAIN....
Helpful - 0
Avatar universal
It's getting worse. I'm now aware of L1/L2 even when I'm not touching it. This is the first time that this has happened in 23 years.

Note that until the 1st of Sept 2010, I didn't even know that L1/L2 was the source of the pain. I got a periradicular injection on that day that gave me a couple of days relief.
Helpful - 0
Avatar universal
I gave extra info 5 DAYS ago. why am I waiting again?
Helpful - 0
Avatar universal
Extra info. I'm 5'10" (175cm) and weigh 176lbs (80kg). So I'm not overweight. Have a reasonably physical job, two young children, and regularly swim up to 1km, so at 45, I'm about as fit as my lifestyle will permit. Don't smoke or drink.
Helpful - 0
Avatar universal
Make that just pdf files
Helpful - 0
Avatar universal
First, I think we need to disregard all areas except L1/L2. The disc at this level, is sore and tender WHEN PRESSED. There is no discomfort here when it's not touched. To my untrained mind, the lack of extended relief from the periradicular injections, can be traced to the fact that these injections do not treat the SOURCE area. They're only temporarily trying to stop the referred pain. Standing and walking aggravate the condition. But I can swim a kilometer with little discomfort. When I wake in the morning, I wake pain free. It is movement that triggers the pain.

So what I'm looking for a health professional to think about.

Soreness and tenderness in the area of L1/L2 when it's manipulated.
Whatever the condition is - it does not show on an MRI or CT.

Note. MRI was done 10 months ago. Had a CT last week. Have not seen a doctor yet to discuss the results.

Referred pain along the periradicular nerve aggravated by walking and standing. Laying down reduces the discomfort.

So what condition can cause this soreness while not being detected by imaging technology. Is it possible to have swelling and aggravation BETWEEN the disc and the vertebrae, and is there any minimally invasive techniques for treating these areas?

I have an appointment with a leading rehabilitation doctor in the coming weeks (Feb 4).

Being an Australian, I have the distinct advantage of the national health system, which means most general practitioner consultations are free. I can get x-rays, CT scans, and bone density tests done for free. Bone scans and MRI's are easily available, and well within the reach of virtually everyone. All of which I've had, and none show any abnormality over and above the normal deterioration that would be expected for my 45 years.

I have the MRI on the computer on which I'm typing this. I can transfer images onto pdf or jpg files. Is there any way that I can post any of them here?
Helpful - 0
1083596 tn?1313394676
MEDICAL PROFESSIONAL
Dear Wilso,
Am sorry as i was unavailable for 5 days, Hence was not able to answer you.
What surprises me is the fact that you have taken steroid injections into so many regions, and still no relief. To be frank, this is a poor sign. Also an area of concern is the normal MRI report.
Doctors face huge difficulty in treating conditions, when there are no co-relation of the symptoms and the scan findings. The same is the challenge with your case.
Good part is that you have done physiotherapy, but again the sad part is the pain it has caused you.
Have you taken some 2 weeks rest? Coz it's most important to know if your body needs rest or not.
I would again prefer you to have a re-consultation with your Pain Clinic Specialist (Doctor), else a second opinion, as orthopaedicians or other specialist are helpless.
I would like you to discuss with them about few medicines like - Cyanocobalamine , Lopoic acid, Gabapentine ,etc.
I am not able to suggest you any oral medications presently as i  have not examined you hence am giving you the options, you need to discuss with your consulting doctor.
I hope i have briefed you about the basic issues.
Please discuss further, as i need to cover more points, of your concern.
Regards
Helpful - 0
Avatar universal
Further info. Pain extends from the right lumbar area, laterally and around to the abdomen.
Helpful - 0

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