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Thread: Dr. Young - may I have your opinion? Complicated

  1. #1

    Dr. Young - may I have your opinion? Complicated

    Sorry to write "War and Peace" here, but it's a complicated case.

    I have been waiting for the latest round of doctors to be over, and to have the time to write this up – but I would really appreciate Dr. Young’s opinion (and of course everyone elses too).

    I found this forum through a search on chronic pain. My husband has had chronic thoracic pain for years in the left front of his chest, which came on after coughing. It was guessed to be intercostals neuritis perhaps. His pain was reasonably controlled until about a year ago, when someone spotted a mildly degenerated thoracic disc and decided this was the cause. An epidural injection of depo-medrol was done, interlaminar approach. Not the best approach (we know now unfortunately).

    Approx. 15 minutes after the procedure he was literally screaming his lungs out. They attributed this to volume effects – he was medicated and discharged. However, that was not the case - he has been in intractable pain since, starting from the spine and wrapping around to the front, basically following the nerve pattern on the left. At the time, he also did have a spinal headache, leading to the belief that the dura was punctured.

    Initially, it was believed to probably be arachnoiditis. However, he has had multiple MRIs since (including 3T with contrast) and a neurosurgeon and neurologist have said they do not see evidence of arachnoiditis.

    He has an abnormal EMG with fibrillations at t6 and t7 (injection was at t6/t7).

    So basically he now has a radiculopathy, but with some abnormal sensation from t4 to t10, which they are basically calling a neuropathic pain syndrome.

    To complicate matters, they now believe he has a pheochromocytoma, but cannot find it yet elevated normetanephrine but negative I-123 MIBG. We are having some difference in opinion with the endocrinologist as to how to proceed – he wants to wait a year and scan again, we don’t want to wait. And are not 100% convinced of the diagnosis, although it does appear a likely explanation. So we are considering the NIH or Mayo – we believe he should have MRI/CT or possibly a PET scan. But that is probably a separate story, except that apparently the high sympathetic activity is probably worsening his pain. Also, understandably, anesthesiologists are reluctant to put him under to try nerve blocks. And medications that inhibit norepinephrine reuptake are of course now contraindicated.

    He does have volatile hypertension, palpitations, tachycardia, postural hypotension, dyspnea upon exertion, etc – and it now appears his ejection fraction is slightly lower than it was. It isn’t far out of the normal range – but he’s a young guy, and it does appear to be a recent change. They had difficulty performing the echo, because his lungs were in the way, narrowing their field. The tech said this often happened with COPD etc (he does have asthma, but fairly well controlled). We are still talking to cardiology about this.

    He also has adrenal insufficiency, of unknown etiology, which is now being treated but went for at least months untreated.

    He has had some neuro symptoms, but some can be attributed to medication. He had a few partial seizures and exaggerated reflexes, but this was at the end of a long course of levaquin and these symptoms have not returned.

    He had an abnormal gait (wide and a bit stiff), but that has improved since discontinuing lyrica, although still perhaps not completely normal.

    He also has flushing of the arms, swelling of the arms when upright, and vasospasm in the left foot. The “blue foot” first appeared when a course of oral steroids was completed – both feet swelled, and the arm swelling worsened. They have termed it “orthostasis”. RSD (CRPS) has been considered – but he has no pain at all in his extremities. And no swelling, skin changes, etc. in the painful area (thorax). The swelling has improved off lyrica, but is still there. He also has a spongy swelling under his chin.

    His left leg at times becomes numb and gives out – neurology has no explanation.

    Rheumotology workup was negative. Labs have mild abnormalities – 1 point anemic, crp & sed rate, slightly elevated, nothing big.

    Brain MRI showed “There are several small regions of abnormal high T2 signal within the supratentorial white matter. Minimal high T2 signal ossification of the mastoid air cells is incidentally noted.” “Nonspecific supratentorial white matter lesions are present which are of doubtful clinical significance and are most likely present on the basis of a prior ischemic or infections/inflammatory process”. The neurologist did not consider this significant.

    It is a bit interesting that all problems are or are worse on the left – radiculopathy, arm more swollen, left foot blue, left leg giving out…

    I realize this is quite a complicated case – we are trying to figure out what can be attributed to the apparent iatrogenic nerve injury, what the theoretical pheo could cause, and what’s left over. Or if there is some other systemic illness that should be considered.

    At one point I was trying to understand fully the difference between central and peripheral pain – I believe since his seems to originate from an injury to the nerve root, it would be peripheral pain, correct?

    My best friend the nurse says I should invoke the lemon law (we were pretty much newlyweds when all this started a year ago). Lol

  2. #2
    ? avm work up? t.e.a.m. disease?

    Typical characteristics of patients with dural AVF (type 1)
    Patients with AVFs are typically older than 40 years. These AVFs occur more frequently in males than in females. Symptoms increase over an extended period of months to years and include progressive weakness of the legs and concurrent bowel or bladder difficulties. Typically, pain is located in the distal posterior thoracic region over the spine, without a significant radicular component. However, painful radiculopathy may be present. Activity or a change in position may exacerbate symptoms in the thoracic or lumbar region and can result in thoracic spinal cord venous congestion and lower-extremity weakness.
    These lesions can be mistakenly diagnosed as spinal stenosis and neurogenic claudication. The typical history of a patient with spinal claudication does not usually include lower-extremity weakness, but it can include a significant pain component similar to that of a spinal dural AVF.
    Foix-Alajouanine syndrome is an extreme form of spinal dural AVF that affects a minority of patients. These patients present with a rapidly progressive myelopathy due to venous thrombosis from spinal venous stasis

  3. #3
    Interesting thoughts, not ones any doctor has suggested so far.

    He is well under forty, and doesn't really have leg weakness. He has slightly diminished sensation on his left leg, but it generally works. It just once in a while goes totally numb and gives out. Bowel and bladder work ok.

    I wonder if whatever happened during the epidural could somehow have caused something similar? He had no pain in his back prior to the injection.

    He has mild cervical stenosis and straightening of the normal lordatic curve, that they said was congenital.

    He has had spinal MRIs top to bottom, and also a brain MRI - would those conditions have been detected by those?

    I couldn't find t.e.a.m. disease - could you possibly give me a link?

    Thanks for your help.
    Last edited by TAM63; 11-06-2009 at 09:13 AM.

  4. #4
    I am not suggesting he is a female
    I am not suggesting that he has a AVM. (usually confirmed with 3D Vascular CT reconstruction Study)
    I do suggest that you demand a total work-up and go in there with a broad range of educated questions.
    There are many things that don't show up on MRI. One modality is not a panacea. Thats why there are so many different specialists
    The most one can hope for is to trust in a doctor who can sort it ALL out for us. please share results. Thank you.
    Last edited by mckeownp; 11-04-2009 at 06:55 PM. Reason: forgot link

  5. #5
    I'm not sure that "one doctor" exists - we've seen lots. We need Dr. House lol.

    He's being seen at a university now, and we have made noises about a comprehensive workup. So far, we haven't convinced them a neurologist is indicated (sigh). Well some docs think so, just not the one in charge. We'll see.

    Don't worry, they live in fear of my questions - I usually throw some journal article at them to accompany said questions.

    To be fair, they are currently more concerned with the potential pheo than the neuro stuff. Which I understand, it is more life threatening. But we are concerned witht the whole thing.

    Thanks again for your help. I hope Dr. Young will have some input too.

  6. #6
    Hi , I'm working on getting into Mayo Clinic, don't know if I'll be accepted. I think he needs to go someplace like Mayo if not Mayo. True team workup and any specialist is a phone call away and near immediate not months ike we usually have to deal with.


    Last edited by bollefen; 11-06-2009 at 11:38 AM. Reason: typo

  7. #7
    I hope you do get into Mayo, fingers crossed for you.

    We don't really have any significant problem with delays, or getting into specialists. The problem is they all don't know quite what to do.

    He is at a major university now. Mayo won't tell me what types of scans they have for pheos, so we might waste our time there if they don't have scans the university doesn't.

    We might get into a pheo study at the NIH, but as the current doctors have apparently done the testing incorrectly, he isn't eligible without them redoing it (just spoke to the NIH yesterday).

    If they could find and get rid of the pheo (if it is one) we could then see what symptoms are left.

    My concerns however, and what I was really asking for some input on here, are the neuropathic pain and leg giving out, which I really doubt are due to this supposed pheo.

    I also know high levels of pain can cause elevation in norepinephrine. I don't know if it can significantly elevate normetanephrine and thus cause a false positive test for a pheo.

    Despite packs of specialists, and high-ranking ones at that, not really getting good answers.

  8. #8

    It sounds like your husband has a complex situation at this time.
    Does your husband have a spinal cord injury?


  9. #9
    I really don't know - but not the same way most of the members do, not from an accident or surgery.

    He has a mild stenosis, a mildly degenerated disc, and something was injured during the epidural. Was it an injury to the cord? A nerve root? Or arachnoiditis? Or? This is what we don't really know. (Most likely the dura was punctured also)

    I understand that the theoretical pheo situation is outside of the scope of the forum - but it presents a complication as far as the symptoms.

    The pain and neuro symptoms are what I was really looking for input on (although all input is welcome of course).

  10. #10

    Let me summarize your husband's history so that I have it straight in my mind. More than a year ago, your husband had pain in left anterior chest aggravated by coughing. The cause was attributed to intercostal neuritis on unknown origin. A year ago, a mildly degenerated disc was discovered and was treated with depo-medrol injection where the degenerated disc may be compressing the T6/7 thoracic roots . He had sharp pain at the time of the injection, developed neurological loss and neuropathic pain afterwards. He has several related symptoms and complications:
    • Abnormal electromyograms showing T6 and T7 fibrillations.
    • Abnormal sensation from T4 to T10.
    • A spongy swelling under his chin.
    • Left leg occasionally numb and gives out.
    • Suspected pheochromocytoma with high normetanephrine but no I-123 MIBG.
    • Volatile hypertension, palpitations, tachycardia, postural hypotension
    • Cardiac ejection fractions are slightly lower.
    • Adrenal insufficiency of unknown etiology, treated.
    • He has had seizures associated with the antibotic Leviquin.
    • Brain MRI shows areas of high T2 signal in supratentorial white matter, believe to be old ischemic or infection-induced lesions.

    I had four thoughts in quick succession as I read through this.
    • My first thought was surprise at the presence of brain white matter lesions on MRI. I presume that they did not consider MS because he has no other neurological symptoms and the lesions are not enhancing. Could the lesions be related to his response to Levaquin?
    • My second thought was that a pheochromocytoma would explain the volatile blood pressure, cardiac changes, and adrenal insufficiency. About 10-15% of pheochromocytomas are located outside of the adrenals, usually in the abdomen. Does your husband have a family history of endocrine disorders or neurofibromatosis? Has he been tested for MEN 2 and MEN 3 genes?
    • My third thought is that epidural depomedrol injections usually do not cause the manifestations that you describe. Perhaps the depomedrol was injected into the spinal cord? This would account for the sharp pain that your husband felt at the time of injection, as well the bilateral and multi-segmental effects. An MRI scan should have been done at the time. In any case, your description is consistent with spinal cord damage, not just the T6/T7 root injury. It is unusual to damage roots on both sides with a single injection and to have the effects of a damaged root span from T4 to T10. Another possibility is that the epidural injection involved the artery of Adamkiewicz which enters the spinal cord at T6 to T8, supplying blood flow to the thoracolumbar cord.

    In answer to your question regarding pain, the words central and peripheral pain are outmoded. The preferred terminology now is neuropathic pain and nociceptive pain. The former is pain originating from the nervous system. The latter is pain that results from painful (nociceptive) signals entering the nervous system. Both peripheral and CNS injuries cause deafferentation of neurons in the central nervous system. The causes of neuropathic pain in both cases are likely to be due to hyperexcitability of neurons in the central nervous system, due to deafferentation (removal of input) from neurons in the central nervous system. Denervated neurons become hyperexcitable not only to other stimulus but often spontaneously. The former causes allodynia (abnormal pain associated with light touch). The latter causes spontaneous and ongoing pain, sometimes characterized as burning, freezing, and squeezing sensations. Other types of neuropathic pain include pins and needles, sharp lancinating, and vibratory sensations.

    Nociceptive pain is due to actual painful sensory input. Many people with spinal cord injury develop nociceptive pain due to musculoskeletal injury or overuse. Also, as people recover or take drugs such as Fampridine, restoration of sensation may unmask nociceptive pain. Most nociceptive pain for people with spinal cord injury come from musculoskeletal pain above the injury site due to overuse. For instance, many people who use manual wheelchairs have injured shoulders, Nociceptive pain may combine with neuropathic pain in complex ways that enhance both types of pain. Also, there are autonomic responses to nociceptive pain that contributes to neuropathic pain and vice versa.

    Treatments for neuropathic pain are often anti-epileptic drugs. Treatment for nociceptive pain are analgesics such as opioids. Many people have a combination of neuropathic and nociceptive pain. In most pain resulting from neural injuries, it is hard to distinguish between neuropathic and nociceptive pain. However, people with spinal cord injury often have neuropathic pain where they have no sensation. Likewise, people with amputations have pain where they have no limb. In people with spinal cord injury, neuropathic pain may occur above, around, and below the injury site. They may involve the limbs, viscera, pelvic organs, and appear to be musculoskeletal.

    Certain types of activities and drugs tend to aggravate neuropathic pain. Is your husband a smoker? If he is, he should stop. Many people on this site have reported that nicotine aggravates neuropathic pain. A number of drugs help reduce neuropathic pain. You mentioned that he is taking gabapentin. The body accommodates to gabapentin. Higher and higher doses are required, up to 4-5 grams a day. For many people, the side-effects stop the drug dose from getting high enough to have the beneficial effect. Has he had amitriptyline? This is an MAO tricyclic antidepressant drug that, in relatively low doses of 20-40 mg per day, takes the edge off neuropathic pain in some people. Finally, opioid drugs are a last resort but Duragesic (Fentanyl) patches are quite effective against both nociceptive and neuropathic pain.


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