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Lumbar vertebral hemangioma, et. al.

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
***@****
10 Responses
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1438647 tn?1283893608
A related discussion, Lumbar Hemangiomas was started.
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560754 tn?1216032476
A related discussion, Hemangioma was started.
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Avatar universal
Thanks,

CCF Neuro MD
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Avatar universal
Point made and taken.

Yes, admittedly a bit confrontational but if you read my original post you'll see that I'm most distressed, particularly so at the time I posted that, as I'm completely lacking a reasonable explanation for my misery. I don't offer that as an excuse, just insight into my apparent frustration of what I'm confronted with. Quite trying psychologically as I'm sure you're well aware.

My humble apologies nonetheless CCF Neuro and guests.
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Avatar universal
Dear John:

No, the MRI for the first question can not be done in the standing position and CT will not give a good demonstration of the soft tissue, as T1 and T2, spin echo, setting are not possible on Ct.  CT is great for boney stuff. Since you understand axial load then you are familiar with the way the spine is constructed to bear weight.  Small changes in the thecal sac will not effect nerves as there is no impingement on the nerves in the CSF.  The ligaments hold the discs and spinal column and therefore changes can be seen on recumbant postioning as the body will be fairly static as it would be in the upright position, if this were not so, we could not stand.  Axial load is a term we use for long term pressure on the spine or ongoing pressure.  It has to due with things like lifting, weight training, jumping, falling continuous due to job (circus etc).  So, it is prudent to look into and prevent undue axial load if one has a spinal problem.

Otherwise you answered your question yourself.
Sincerely,

CCF Neuro MD
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Avatar universal
Dear Caree:

Bravo!!!


CCF Neuro MD
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Avatar universal
john, not to interfere here.  but the kind doctor did provide you with an excellent response in my opinion.  looking at the forum guidelines, it does specify that the doctor can only address "specific conditions".  it would seem that asking them to provide opinions on various theories is far beyond what this forum was intended for.  i hate to comment, but the doctor gave you some very sound advice and your reply is a bit confrontational.  i hope you find all of your answers soon.  but not at the expense of this wonderful forum.
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Avatar universal
Re: CCF Neuro Reply, PLEASE NOTE:

Reference and common sense dictate that while spinal canal or thecal impingement is evident on MRI, it bears noting that that's also while recumbent - what's the effect and result under axial load, which I understand on the lower lumbar vertebrae is considerable, up to 1600 psi on S1? Isn't that why some CT scans are frequently conducted while the patient is standing?

On CT and in several axial views, the classic "Y" shape of the spinal canal and near obliteration of the foramens is also obvious. If it "approaches" that nerve root space recumbent it seems only logical that under load it's impinging, compressing, stretching or even severing it. Factor in stenosis and the picture changes considerably. As you know, nerve root irritation alone does not result in neurologic deficit so that is not a valid assessment.

QUESTION: is this or isn't this a valid analysis?

The incidental hemangiomas you typically see are quite small - as is the case with the one on my L-1 vertebra. The one on my L-4 vertebra is 2/3rds the size of the vertebra and has opacity, and there's also significant vertebral endplate changes (high intensity on T-1 weighted signal) the full length of the vertebra and in both saggital views. This is very obvious on MRI - which I've every confidence I can interpret as well as many doctors.

So, the question is, isn't it prudent to consider the effect of axial load? It assuredly makes a difference as I'm quite comfortable recumbent but miserable on my feet.

I've objectively verifiable evidence of neurologic disease - absent or diminished ankle and tibial reflexes and have suffered from intractable pain for nearly two years. It seems to me that imaging of any modality is of secondary consideration, the mere appearance of a herniation or bulge even in proximity of the corresponding nerve roots or spinal canal conclusive enough given the clinical findings - in other words merely collaborative of the objective and significant clinical findings.

Tell me then, how do I "persuade" my attending physicians, none of whom possess any specific expertise in spinal matters much less any credentialing, to view things in their proper light as I've described? Or is this where the disciplines seem to split, despite neurologic impairment, my difficulty is best addressed by an orthopedic surgeon because disc and/or bone is involved?

We also know there's a window for optimal intervention, mine having closed long ago for the failure to recognize neurologic impairment. Just how long does a nerve root have before it's permanently scarred or even severed by the action of the offending disc or discs?

Nevertheless I think you're right however, a new view and a new attitude is definitely in order. Someone who has a grasp of spinal anatomy preferably, something I've thus far obviously haven't become acquainted with. You ust engaged in some obfuscation of sorts - why is that?

Thanks for your honest and forthright reply.
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Avatar universal
Dear John:

Sorry to hear about your problems.  I am not sure what you are asking for.  We see hemangiomas in the spinal area quite frequently and they are usually only an incidental finding. I have yet to see anyone with symptoms from one, however, that doesn't mean that it can't exist. As far as your congenital problems, I am afraid that there is little to do about these.  The descriptions of your thecal sac and spinal cord would indicate no active damage being done, but since you have symptoms I would see if your neurologist will do an EMG to confirm no root problem.  The simple x-ray is very good at detecting boney abnormalities.  Sounds like your on powerful pain relievers.  Surgery is always a last effort to help the problem and there is no guarantee about outcome.  Usually, a surgeon would not operate on what changes you are describing.  I am sorry that I probably not helping matters any.  If possible, it might be useful to get another opinion about your situation form a fresh pair of eyes and mind.

Sincerely,

CCF Neuro MD
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Avatar universal
Additional information that may be of benefit;

I also seem to suffer from bone and joint pain, ie; my forearms, rotator cups, knees, shins and ankles many times crack and pop and feel sprained many times - also for example if I prop my head up with my hand and arm my wrist grows very sore like in CTS, any pressure on my arm as in lying my head on it while recumbent produces the same effect in my forearm.

Thought it was worth mentioning, I'm going to request an RA workup on my next doctor visit.
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