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October 21, 2009 - 7:12pm
Please Help Me!
All the doctors are telling me I am a "mystery." Maybe someone here can add everything up and solve my seemingly underlying issue. I will post symptoms and clinical findings. This was a work injury from August 2005.
Symptoms:
*Constant low back pain. 3/10 on a pain scale.
*Debilitating WHOLE back pain when active. Like 7/10.
*Left leg/foot is very numb/tingly/weak/painful. Especially in my big toe.
*Right leg/foot is numb/tingly, but very minimal relatively.
*Hips, groin, buttocks all feel numb/tingly.
*Constant minimal leakage from my bowel.
*Complete loss of bowel on 3 occasions over last 4 years. Once a slip and fall, and twice sleeping.
*Erectile Dysfunction
*Sharp tailbone pain occasionally.
*Urination has changed. Sometimes I feel like I gotta go bad, and not much comes out. Also vice-versa.
Clinical Findings (several MRIs of 4 years, some is repeat):
*1.5cm neuroepithelial cyst in the sacral portion of the thecal sac.
*(L3-4)Moderate degenerative disc disease with a central disc protrusion measuring 6mm x 19mm creating mild anterior effacement of the thecal sac with borderline central canal stenosis minimum AP diameter of 10mm. Minimal facet degenrative changes present.
*(L4-5) Minimal bilateral facet degenerative changes.
*(L5-S1) Mild degenerative changes of the left facet joint.
*Spina bifida occulta of the neural arch of L5.
*slight retrolisthesis of L3 on L4 measuring 2mm.
*(L3-4) mild disc space narrowing.
*(L2-3) slight prominence along the posterior disc suggesting minimal disc bulge.
*(L4-5) Minimal disc bulge.
*(L3-4) disc bulge abutting the thecal sac anteriorly with mild mass effect
*(L3-4) moderate loss of signal seen emanating from the disc.
*Loss of cervical lordosis with mild scoliosis.
*(C5-6) Small disc protrusion abutting the ventral surface of the thecal sac.
*(L3-4) Mild facet arthrosis
*(S2) Well defined posterior Tarlov cyst.
*appears to be a bifid spinous process at L5.
*(L3-4) Disc bulge with moderate narrowing of the central canal with moderate encroachment of the lateral recesses. Mild encroachment of the neural foramina.
*(L4-5) Disc bulge results in mild narrowing of the central canal.
*Prolongations of the left tibial latency
*F-waves showed prolonged peroneal and tibial nerves.
*SSEPs and DEPs revealed delays of the L5 tibial and S1.
*Possible evidence of S1 radiculopathy
*bilateral L-5 chronic motor radiculopathy
*Mildly slowed bilateral sural findings
*Facet joint degeneration at L3-4 and L4-5.
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2 Orthopedists
2 Neurologist
3 Neurosurgeons
2 Pain specialists
1 Chiropractor
1 Physical Therapist
1 General doctors office
several MRIs
several X-rays
CT-Scan
Myelogram w/ CT Scan
3 EMGs
I am a bit confused why the doctors consider you a mystery. It seems that your spinal problems are really quite well laid out, as you have just done. You have amny slight degenerative changes throughout your lower lumbar spine.
If you look at your symptoms, they mostly relate to the lower lumbar area, particularly L4-S1 -- and it might be that many of them stem from the spina bifida occulta that is mentioned: "*(L5-S1) Mild degenerative changes of the left facet joint.
*Spina bifida occulta of the neural arch of L5."
If you do some research on spina bifida occulta, you will see that it is almost always located, or should I say, it occurs at the L5-S1 area. This is where the nerves that control the bowel and bladder and genital area are also located...so it might be logical that all of this connects somehow. This is most likely a condition you were born with, but it did not cause you any problems until you injured your back.
The chronic motor radiculopathy that is mentioned that is bilateral at L5 and possible evidence of radiculopathy at S1 would coincide with the problems you have in both your legs and feet feeling numb or pins and needles sensations...and the pain in the great toe.
I'm going to write a PM to you with a couple links to some information that might be useful....
If you have been unable to get a proper diagnosis from the specialists you've seen, you may have to up the ante a bit and perhaps travel to a larger city or a more specialized spinal clinic at a major teaching hospital or medical school. Do not give up. I would like a you need to find a fellowship-trained spinal surgeon that specializes in reconstruction surgeries might be able to help you...or at least get you pointed in the right direction.
Don't give up. You may have to keep looking but I know there is a doctor out there who can help you.
Gwennie
I have no medical training. Comments are based on personal experience and lots of research and reading.
PLIF @ L4-5 with Peek cage, rods and screws Jan 2008
Lami-foraminotomy L5-S1 Jan 2009
Fusion L3-S1 coming up -- 1 June
saying that these docs do not see any issues with your MRI findings? The bowel / urinary problems sound like a possibilty of CES (cauda equine syndrom). I am not a radiologist or a doc so I am not qualified to read your MRI. I know that you have seen many different docs but I would suggest to see a few more. It is really not unusual to have to see many different docs before getting a diagnosis. It just takes persistence and finding the 1 doc that can and will help you. I wish you luck and please keep us posted.
I am in no way associated with the medical field. Anything that I post comes from personal experience only.
DDD, Facet Arthropathy, DJD,Collapsed Disc, Sleep Apnea
PT, Epidurals, Facet Blocks,Medial Branch Block, Rhizotomy,Discogram,Annular Tare L3/L4 Endoscopic MicroD and PLDD,
Methadone, Percocet, Baclofen, Welbutrin
I was reading your symptoms and when I got to 'bowel leakage', I stopped. That makes it sound like Cauda Equina Syndrome and even when you take everything else into consideration, that's still the first thing I'd ask about.
If you want to read about it, there's an article on the site (see below).
Bye, Val
www.spine-health.com/conditions/.../when-are-back-problems-emergency
all the docs are ruling out CES. Doesn't make sense to me either.
I am supposed to be going to Seattle to the Virginia Mason clinic. Apparently there are a couple "hot-shot" doctors there who may be able to help me.
And yeah, I don't get why the doctors call me a "mystery" because, from what I have read about back issues, everything seems pretty cut and dry. But who am I to say, I'm just the person who has to live with it.
I had to wonder who's Dr's. are they? Yours or work comp?
Have you tried a Fonar stand up MRI with flexion and extension? That could tell a different story. And I forgot the dye.
Good luck, Jim
You get what you get, It has nothing to do with what you deserve!........I stole that from Susan
Click my user name to see my medical history
Today is yours to embrace, as tomorrow, Who knows what will be starring you in the face
your first 6 problems i have from 5 lumbar surgurys at l-45 Rick ncpa