I was born with numerous congenital abnormalities including
lumbar spondylosis, spondylolisthesis, nevi (NBCC?), "lazy" eye, enlarged thalamus, inguinal hernia and according to most medical reference, bipolar disorder for which I'm administered 300mg of Lithium Carbonate 2x daily - from about the age of 19 (I'm 42, also was the victim at that time of severe trauma to my lower back from being pinned between two vehicles) I've suffered intermittent, sometimes monthly or even weekly bouts of severe lower back pain with spasms and characteristic spasticity wherein my back would "lock up" and I'd stoop over and be unable to stand erect - typically several days or more of bedrest with muscle relaxants and anti-inflammatories would provide relief. A couple of years ago the same phenomenon occurred only resulting in crippling pain in my hips, then progressing into my right leg, ankle and foot. After about six months and progessively worse symptoms and disability I sought out medical attention. My back pain was secondary to writhing hip pain that seemed to originate in my sacrum, spread rapidly into my hips and then into my right leg.
Clinical findings were diminished or absent ankle reflexes and positive Lessegue's sign which persist to this day. On other examinations flexion/extension X-rays allegedly revealed nothing unusual however note was made of an excessive lumbosacral angle which I understand is a predisposing condition to my congenital spondylosis although it had not apparently been discovered or diagnosed to date.
An MRI was conducted Feb. 1999 revealing an L4-5 herniation, disc degeneration at L4-5 and L5-S1, and the appearance of a "presumed" and rather large (2/3rd's size of vertebra) hemangioma on L4 and a smaller one on L1. I was told, despite the clinical findings that no nerves were compressed. It occurs to me that the hemangioma may then be symptomatic. I underwent a myelogram in July that during the course of when my head was tilted downward I suffered severe numbness and pain in my lower body, to the point of blacking out. A similar episode occurred upon entering a swimming pool up to the midsection of my body. The myelogram and accompanying CT scan revealed "mild" stenosis and compression of the thecal or dural sac and "mild" extrinsic indentation of the spinal canal. L4-5 ventral disc protrusion more pronounced on left than right, "mild" osteoarthritis of L4-5 facet joints and another protrusion at L5-S1, central disc protrusion at L3-4 with thecal sac narrowing. CSF protein level at 48 and slightly elevated by my understanding, glucose well within normal range. PT of no benefit, only exacerbates the problem for days afterwards. I force myself to do some exercise to maintain tone and abdominal and lower back muscles - for which I also suffer royally afterwards but it's absolutely vital lest I atrophy.
In the time since the myelogram for which I suffered LPH for approximately 3 weeks, my symptoms have been more pronounced and I've bilateral pain and thigh and calf muscle tightness and weekness. I feel as though I've a raging case of Asian flu, however no typical associated symptoms. I have fecal urge incontinence and mild urinary retention, possibly related to an enlarged prostate as well. My back is typically only sore when I sit or stand for more than a few minutes at a time, however my legs are nearly worthless at this point from severe pain and the muscle cramping. Twisting my torso over 30 degrees results in an "electric shock" from head to toe and that causes me to pass out. This has happened twice as now I'm especially careful with any movement. I suffer from severe insomnia, due mainly by profuse sweating on the top of my head that occurs within an hour of lying down to sleep. Bowel movements are extremely painful (tight anus) and also produces extreme pain in my hips. I do have inner and outer hemorrhoids but they are neither inflamed or swollen, and even diarhhea produces these symptoms. I have nearly perpetual stomach cramping and on occasion after eating feel bloated which on occasion leads to diarhhea and vomiting. Frankly, if I knew better I'd swear I had cancer - or polio, such is the state of my legs.
It seems obvious to me that there's been a misread and over reliance on imaging versus correlation with clinical findings and symptoms. There also seems to be much crossover which obviously might confuse some physicians. My congenital abnormalities have only been discovered once on simple x-rays which concern me deeply, wherein there's no doubt it's there, why hasn't it been noted other than on an independent exam on simple x-rays? The apparent systematic symptoms ("Asian flu"-type) seem to indicate an infection, or again the possibility of symptomatic hemangioma, haemagioblatomma possible? I'm also concerned that perhaps I acquired arachnoiditis from the lumbar puncture, or perhaps it existed previously and was exacerbated by it.
Nevertheless, I'm virtually confined to bed, unable to stand on my feet due to writhing pain and leg cramping - the pain in my lower back and hips seem to be well managed by a regimen of morphine (30mg, tid 3x daily) and endocet for breakthru pain, of course unless I sit or stand but very briefly. I am extremely concerned as most of the time I feel extremely ill, my legs cramped and weak and I'm a virtual prisoner of whatever is going on in my body. I was in sedentary, professional managerial work prior to my current disability. I feel as though I'm getting no ansers, just excuses and every finding seems to be trivialized making me feel as though I'm being called a liar, despite objective findings to the contrary. Needless to say, this has also wreaked havoc on my psyche, and I'm quite despondent and depressed over the entire matter. I've been to several supposed specialists without satisfaction, several of whom seem to have withheld information or trivialized findings - I was finally referred to an orthopedic surgeon for surgical evaluation, of which I harbor doubts will be productive. Numerous findings, likely no specific corrective surgical procedure.
I would appreciate any information you may offer knowing my complete history, and a possible correlation between my congenital abnormalities and my present situation as there seems to be some reference to same in various journals and medical databases. I'm at wits end - I can accept my situation better if I were somewhat aware of the cause or causes of my infirmity. I need to know what it is from which I can intelligently decide what to do about it or how to cope with it for the duration, which presently seems indeterminable. I've no life as it stands noe and not knowing with some degree of specificity just compounds the matter.
I thank you for your indulgence.
John Wentling
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