Dr. Young - may I have your opinion? Complicated

[TAM63]

Dr. Young, thank you so much for your response. I have a few thoughts, but will need to digest your very imformative post a little more.

Your summary is very close, however he does not have any pain or thoracic abnormal sensation bilaterally. All of the pain, and much of what is wrong is on the left side only.

He does have significant tremor in both arms - which again might be attributed to the suspected pheo.

He has slightly diminished sensation on the left leg also. He had an abnormal gait, but that has now improved. I can't judge if it is completely normal, but I don't think so. I don't believe anyone has ever actually done a full neuro exam (yes I know, they should have).

Re. the lesions on the MRI - no one has ever mentioned MS. We have of course considered it ourselves, and also of course hope not. But he probably doesn't have enough neuro symptoms for them to think so... I think... The neurologist we say said that the MRIs were ok so "there is nothing for us to do". Now that he is being seen at the univeristy we are pushing to see a neurologist, haven't succeeded yet with that request yet.

The brain lesions could possibly be related to some high fevers he had a in 2001 and 2002 ago - never diagnosed, but called "meningismus" - there was a possibility of Q fever (he was not in the US). As for being caused by the levaquin - I don't know. They just told us it was not significant.

We have also suspected that the depo-medrol was injected into the spinal cord. He had a spinal headache, consistant with the dura having been been punctured. However, we do not know - the anesthesiologist who did the injection never examined him after the procedure. He has had several thoracic MRIs since that procedure, including 3T with contrast, and no one can see any damage. Radiologists and a neurosurgeon have examined the MRIs (although the neurosurgeon hasn't seen the 3T one, it was later).

He has tried a number of medications. Lyrica was actually causing a lot of swelling and mental dullness. It apparently caused or worsened the abnormal wide stiff gait he had - it is not quite normal, but much better off the lyrica. Interestingly, even at quite high doses, the lyrica helped a bit with the original pain in the front of his chest, but no effect at all upon the radicular pain.

Amitryptyline and nortryptyline did not help him at all. I think they would now be contraindicated with the pheo also.

He does have an apparently good pain mgmt physician, who is quite experienced with medications. He is a bit limited in his choice of treatments at the moment, due to the pheo.

Re. the pheo, no he has had no genetic testing, and there is no known family history. However, there was a grandfather with a "sudden cardiac death" at age 45. So one wonders.

We are probably about to have an argument with an esteemed endocrinologist - he has done an MIBG scan, which was negative (at 6 and 24 hours, didn't do 48 hours) - but never done CT or MRI, quite contrary to the protocols recommended by the NIH. If he really does seem to have a pheo, we will probably try to get into the NIH study. One of the NIH researchers kindly (amazingly!) did phone me this week. Apparently the blood testing was not done correctly (as I suspected) and the results are suspect. Also, she was most astonished that no CT nor MRI had been done, and the NIH would not even consider him without one. The clinical signs are consistant with a pheo though.

I understand that this is so entangled - what is the pheo causing, and what isn't it (if it's really there). But aside from that, we of course do worry about things such as MS - and of course, trying to figure out what might have been damaged by the injection, if that is even possible.

We have seen a number of nice doctors, but when something is a little off and they don't know why, they seem to stop looking.

After all this, I can think of a few questions:

Would you think that a full neuro exam would be appropriate at this point? Or would a pheo so comfound matters as to make it not worthwhile until after the pheo is removed...

If the depo-medrol was injected into the spinal cord - what damage would that cause? Would it be progessive? Might it improve?

Again, thank you so much for your time and knowledge.

[TAM63]

Forgot to say, he does not smoke nor drink alcohol.

[Wise Young]

Originally Posted by TAM63

Dr. Young, thank you so much for your response. I have a few thoughts, but will need to digest your very imformative post a little more.

Your summary is very close, however he does not have any pain or thoracic abnormal sensation bilaterally. All of the pain, and much of what is wrong is on the left side only.

He does have significant tremor in both arms - which again might be attributed to the suspected pheo.

He has slightly diminished sensation on the left leg also. He had an abnormal gait, but that has now improved. I can't judge if it is completely normal, but I don't think so. I don't believe anyone has ever actually done a full neuro exam (yes I know, they should have).

Re. the lesions on the MRI - no one has ever mentioned MS. We have of course considered it ourselves, and also of course hope not. But he probably doesn't have enough neuro symptoms for them to think so... I think... The neurologist we say said that the MRIs were ok so "there is nothing for us to do". Now that he is being seen at the univeristy we are pushing to see a neurologist, haven't succeeded yet with that request yet.

The brain lesions could possibly be related to some high fevers he had a in 2001 and 2002 ago - never diagnosed, but called "meningismus" - there was a possibility of Q fever (he was not in the US). As for being caused by the levaquin - I don't know. They just told us it was not significant.

We have also suspected that the depo-medrol was injected into the spinal cord. He had a spinal headache, consistant with the dura having been been punctured. However, we do not know - the anesthesiologist who did the injection never examined him after the procedure. He has had several thoracic MRIs since that procedure, including 3T with contrast, and no one can see any damage. Radiologists and a neurosurgeon have examined the MRIs (although the neurosurgeon hasn't seen the 3T one, it was later).

He has tried a number of medications. Lyrica was actually causing a lot of swelling and mental dullness. It apparently caused or worsened the abnormal wide stiff gait he had - it is not quite normal, but much better off the lyrica. Interestingly, even at quite high doses, the lyrica helped a bit with the original pain in the front of his chest, but no effect at all upon the radicular pain.

Amitryptyline and nortryptyline did not help him at all. I think they would now be contraindicated with the pheo also.

He does have an apparently good pain mgmt physician, who is quite experienced with medications. He is a bit limited in his choice of treatments at the moment, due to the pheo.

Re. the pheo, no he has had no genetic testing, and there is no known family history. However, there was a grandfather with a "sudden cardiac death" at age 45. So one wonders.

We are probably about to have an argument with an esteemed endocrinologist - he has done an MIBG scan, which was negative (at 6 and 24 hours, didn't do 48 hours) - but never done CT or MRI, quite contrary to the protocols recommended by the NIH. If he really does seem to have a pheo, we will probably try to get into the NIH study. One of the NIH researchers kindly (amazingly!) did phone me this week. Apparently the blood testing was not done correctly (as I suspected) and the results are suspect. Also, she was most astonished that no CT nor MRI had been done, and the NIH would not even consider him without one. The clinical signs are consistant with a pheo though.

I understand that this is so entangled - what is the pheo causing, and what isn't it (if it's really there). But aside from that, we of course do worry about things such as MS - and of course, trying to figure out what might have been damaged by the injection, if that is even possible.

We have seen a number of nice doctors, but when something is a little off and they don't know why, they seem to stop looking.

After all this, I can think of a few questions:

Would you think that a full neuro exam would be appropriate at this point? Or would a pheo so comfound matters as to make it not worthwhile until after the pheo is removed...

If the depo-medrol was injected into the spinal cord - what damage would that cause? Would it be progessive? Might it improve?

Again, thank you so much for your time and knowledge.

TAM63,

A full neurological examination is seldom being done these days, unless it is by an avid medical student anxious to impress an attending on a hospital admission, because it takes so long and most doctors just do a cursory examination to confirm specific diagnoses during an office visit. On the basis of the information that you provided, I think that the following may be reasonable:

1. Get a careful neurological exam to rule out a Brown-Secquard Syndrome. This, as you may know, is the name for a unilateral spinal cord injury. Thank you for correcting me concerning the left-sided tendency of his pain and neurological deficits. The key diagnostic features of a left spinal cord injury would be decreased proprioception and weakness on the left leg, decreased pain and temperature sensations on the right leg. By the way, most people who have a hemisection of the spinal cord often recover to the extent that one cannot tell that they had a problem. It is of course an incomplete spinal cord injury and most people recover almost completely from it after several years. But, it has been a year and there may still be sufficient residual symptoms to make a diagnosis.
2. Do a CT/MRI of adrenal gland and abdomen to rule out pheochromocytoma. Like the NIH researcher, I am surprised that nobody has done the imaging part of a work up for pheochromocytoma. CT scan is more sensitive for small tumors. You don't need a very big pheochromocytoma to cause all the symptoms that you describe. It is curable and therefore every effort should be made to find the tumor(s).
3. Consider gabapentin. Even though Lyrica caused swelling, mental dullness, and a wide-based gait, it is possible that gabapentin may have less side-effects. As I read your comments, I am thinking that maybe the original pain was due to shingles (varicella zoster) and it was then aggravated by the depomedrol injection.

Wise.

[TAM63]

Thank you again for all your time and suggestions - I'm sorry to take so much of your time.

1) Brown-Secquard Syndrome I will try to get his doctors to consider this and test. The first step, of course, would be to persuade the endocrinologist (who seems to be calling the shots at the moment) to refer to a neurologist. We have lost that argument so far. Failing that, I suppose I'll break out the pins and needles, ice cubes, and boiling water...

2) CT/MRI Same endocrinologist. We will have the argument - I truly do not understand his reasoning - a recent NIH journal article showed that of pheos found on MRI/CT, I-123 only found 74% of them. So his current treatment plan to use only MIBG I-123, wait a year (!) and scan again seems bizarre to me - especially as 10-15% of pheos are cancerous.

3) Neurontin He has tried neurontin in the past and did not tolerate it at a high enough dose to be effective. Of course, it could be considered again.

4) Shingles That is an interesting idea. However, he never had a rash. The original pain came on immediately after coughing (asthma attack). It subsided several times over the years, then returned each time after a severe asthma attack involving coughing. The last time, it didn't go away. He has had this chronic pain for years. I am not well educated on shingles, but that didn't sound like the usual course to me - but perhaps I am wrong.

5) Metanephrines The biochemical testing for pheo was apparently not done completely properly either, so it is not entirely certain (at least in our mind) if it really is a pheo. He was not testing supine, nor with an indwelling cathetor, nor fasted, nor were all potentially interfering medications discontinued - these are the conditions specified by the NIH protocol. However, it is appears unlikely that even with rigorous sampling conditions that he would have normal values.

He has a 2.5 fold elevation of normetanephrine consistantly. What I am wondering is - CRPS for example can cause elevated catecholamines (norepinephrine), even 4-fold. Could his pain, which was uncontrolled for 6 months and only somewhat controlled now be causing the sympathetic activation, and elevating normetanephrine? Thus causing a false positive for a pheo?

They are not considering this a differential, and I am unclear if they should be - I haven't found studies on pain and metanephrines, only catecholamines. However, I don't have access to all articles, of course.

[Wise Young]

I removed several posts that were disrupting the discussion in this thread to the Members Only Forum http://sci.rutgers.edu/forum/showthr...=1#post1120497

Wise.

[Wise Young]

Originally Posted by TAM63

Thank you again for all your time and suggestions - I'm sorry to take so much of your time.

1) Brown-Secquard Syndrome I will try to get his doctors to consider this and test. The first step, of course, would be to persuade the endocrinologist (who seems to be calling the shots at the moment) to refer to a neurologist. We have lost that argument so far. Failing that, I suppose I'll break out the pins and needles, ice cubes, and boiling water...

2) CT/MRI Same endocrinologist. We will have the argument - I truly do not understand his reasoning - a recent NIH journal article showed that of pheos found on MRI/CT, I-123 only found 74% of them. So his current treatment plan to use only MIBG I-123, wait a year (!) and scan again seems bizarre to me - especially as 10-15% of pheos are cancerous.

3) Neurontin He has tried neurontin in the past and did not tolerate it at a high enough dose to be effective. Of course, it could be considered again.

4) Shingles That is an interesting idea. However, he never had a rash. The original pain came on immediately after coughing (asthma attack). It subsided several times over the years, then returned each time after a severe asthma attack involving coughing. The last time, it didn't go away. He has had this chronic pain for years. I am not well educated on shingles, but that didn't sound like the usual course to me - but perhaps I am wrong.

5) Metanephrines The biochemical testing for pheo was apparently not done completely properly either, so it is not entirely certain (at least in our mind) if it really is a pheo. He was not testing supine, nor with an indwelling cathetor, nor fasted, nor were all potentially interfering medications discontinued - these are the conditions specified by the NIH protocol. However, it is appears unlikely that even with rigorous sampling conditions that he would have normal values.

He has a 2.5 fold elevation of normetanephrine consistantly. What I am wondering is - CRPS for example can cause elevated catecholamines (norepinephrine), even 4-fold. Could his pain, which was uncontrolled for 6 months and only somewhat controlled now be causing the sympathetic activation, and elevating normetanephrine? Thus causing a false positive for a pheo?

They are not considering this a differential, and I am unclear if they should be - I haven't found studies on pain and metanephrines, only catecholamines. However, I don't have access to all articles, of course.

Tam63,

Interesting thoughts and questions.
• The Brown-Séquard syndrome results from unilateral lesion to long spinal tracts on one side of the spinal cord. The primary findings would be weakness and reduced proprioception in the leg on side of the putative lesion and loss or reduction of pain and temperature sensation in the leg contralateral to the lesion. Typically, the person has a limp for a while, cannot use the other leg to test the temperature of water in a bathtub. Because both the sensory loss and motor weakness resolves over time, especially if the lesion is partial, it is sometimes difficult to tell several years after the injury. However, a careful neurological examination may reveal the losses.
• MRI/CT and I-123. I agree with you. While I think that it will be useful to do I-123 and that it might show something, I wonder why there is a reluctance to do CT/MRI. If I-123 shows something, a CT/MRI probably should be done anyway.
• Shingles do show up with a rash in the beginning. However, a single attack of shingles can cause long-lasting neuropathic pain, called post-herpetic neuralgia. It should gradually ease over time but can last for years. Prolonged post-herpetic neuralgia is less common in people under 60.
• I have not heard of increased catecholamines levels associated with neuropathic pain and particularly metanephrine. I think that here is liledhttp://www.mja.com.au/public/issues/182_12_200605/har10036_fm.html

Wise.

[TAM63]

Originally Posted by Wise Young

Tam63,

Interesting thoughts and questions.
• The Brown-Séquard syndrome results from unilateral lesion to long spinal tracts on one side of the spinal cord. The primary findings would be weakness and reduced proprioception in the leg on side of the putative lesion and loss or reduction of pain and temperature sensation in the leg contralateral to the lesion. Typically, the person has a limp for a while, cannot use the other leg to test the temperature of water in a bathtub. Because both the sensory loss and motor weakness resolves over time, especially if the lesion is partial, it is sometimes difficult to tell several years after the injury. However, a careful neurological examination may reveal the losses.
• MRI/CT and I-123. I agree with you. While I think that it will be useful to do I-123 and that it might show something, I wonder why there is a reluctance to do CT/MRI. If I-123 shows something, a CT/MRI probably should be done anyway.
• Shingles do show up with a rash in the beginning. However, a single attack of shingles can cause long-lasting neuropathic pain, called post-herpetic neuralgia. It should gradually ease over time but can last for years. Prolonged post-herpetic neuralgia is less common in people under 60.
• I have not heard of increased catecholamines levels associated with neuropathic pain and particularly metanephrine. I think that here is liledhttp://www.mja.com.au/public/issues/182_12_200605/har10036_fm.html

Wise.

Again, thank you very much for your interesting and helpful information and suggestions.

That is a very interesting article - they seem to have some different ideas than the NIH on which biochemical tests are best.

We have spoken to my husband's primary physician - if necessary, HE will order a CT. All of our doctors, even other doctors at the university, agree this should be done. So one way or another, it will.

I do realize there are a lot of incidentalomas, as shown in the article that you included above, but I have also read that they are rare in young adults - and my husband is significantly younger than the patients in that article. As my husband seems to have several problems potentially related to his adrenals - we are somewhat curious to see the things - lol does he have 1? 2? 6? Who knows...

For the most part, potentially interfering medications were discontinued. However, as that article references, I do wonder if his pain alone could be a factor.

Just for your interest, here is a study out of RIC on CRPS and catecholamines:

http://www.ncbi.nlm.nih.gov/pubmed/15502052

The shingles remains an interesting thought - the pain came on with coughing however, and also remitted and then returned a few times, always with severe coughing. Presuming you are right however, I don't believe that would make any difference in treatment - correct?

Your input has been very valuable, I truly appreciate it.