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jbmd, Board Certified Physician
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Experience:  Board Certified physician in Internal Medicine - 30+ years experience
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Hi,My brother in law (Brendan, 49 years old) is suffering

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Hi,

My brother in law (Brendan, 49 years old) is suffering from very severe pain from what has been diagnosed as severe thoracic nerve damage, possibly as a result of various accidents he had over the last 40 years (car accidents where he had cracked and broken ribs and vertebrae). Over the years, the pain was manageable and he had what you might refer to as a bad back.

Two years ago (April 2011), he had a ‘karting accident’ (he is a teacher and was on an excursion with the class and one of the students rammed into the back of his kart) and there was impact on his rib cage from the steering wheel. It was at this point that the severe pain began. It started with darts of pain from around the rib cage area going towards his back.

(Around that time, he had a rash called ptiorisis rosea (about 2 years ago). Across his shoulder and along one arm. He was given a cream to treat it. The doctor at the time, thought that the rash might be as a result of shingles and also that the nerve pain may have been also. I am just including this here in case in is significant. However, Brendan (the guy in pain) isn’t sure about this)

The pain since that time two years ago has gradually got worse and worse. He has gone for multiple tests, scopes and scans – MRI’s and CT scans but with nothing showing up.

Earlier this year, he got a diagnosis called thoracic nerve damage. He has been on various types of pain management since then, but nothing has really worked.
He had his first epidural injection (which contained steroids) on 19th July which gave him very insignificant relief for about 3 days. He is on a long waiting list for the second injection which we have been told can take months to get. Seemingly they try 3 injections before giving up on this pain management route so then there would be a third injection.

In terms of other medication. He has used
1) All the standard pain killers - Tylenol etc etc
2) Tramadol
3) Steroids as part of the epidural injection 6 weeks ago on 19th July
4) Very high dosage of Amitriptylene
5) He has tried lyrica it didn’t work and had bad side effects
6) He is on Neurontin all the time
7) Diclac for pain
8) He is on morpine all the time, again something I am very worried about
9) He gets regular cranio-sacral which doesn’t help the pain much but at least relaxes his stress and his mind
10) He gets regular Accupuncture

Nerve Ablation (where they burn the nerve) was mentioned as an option at one stage but he was told the damaged area was too big.

Over the last 6 – 8 months the pain has spread. As mentioned it was originally in the rib area darting towards the back covering an area about the size of a hand. However, it is now in the whole upper back area, on his side area and all over his ribs. His upper back is hyper sensitive to the point that even touched by a feather causes unbearable pain.
Also any movement of his organs internally cause unbearable pain.

The pain has intensified even more (which he thought wasn’t possible) in recent weeks and is now affecting his breathing. So it just appears to be getting worse. He is at his wits end, unable to face each day and he is aging rapidy and fading before our eyes.


My questions are as follows:
What are the standard steps from here. I understand that they are going to give him 2 further epidural injections. Is that the standard process to treat thoracic nerve damage , is it worth waiting for or is it likely that the second and third will be as unsuccessful as the first?

With thoracic nerve damage is it normal that the pain might get worse and that his condition might deteriorate, as Brendans is or should we start looking to see if it is something else?

Are there alternative treatments? Is there any other pain relief for him?

How does thoracic nerve damage affect the organs – what is the internal damage?

He hasn’t been able to work for a year and has 3 very small children. Aside from the unbearable pain and the stress of living with this, what is the long term alternative. He can’t stay on this heavy medication long term.
If the next 2 injections don’t work. What is the procedure from there?

Is surgery an option. There are mixed reactions from what I have read. Also I am not sure that they know the root of the nerve – to me it is probably around the rib area where the pain started. But is there surgery that can treat this?

What else can be done for him?

thank you
Rosey
Submitted: 4 years ago.
Category: Medical
Expert:  jbmd replied 4 years ago.
Hi--I'll give you some advice though I cannot examine or replace local treatment.

Your brother-in-law has a very difficult problem as there seems to be, from what you say, no surgery-treatable problem except for nerve ablation, which is usually not really surgery, anyway. A surgical treated problem example would be disc disease or arthritis with the nerve openings (foramens) in the bone squeezing down on the nerve as it exits the spinal column.

If it is on both sides, it's unlikely that the cause was shingles--unlikely but not impossible as that is usually just one side at a time. Shingles rash looks VERY different from pityriasis rosea. Shingles, caused by the chicken pox virus, is a series of blisters and hurts while pityriasis rosea is more pink or red rash without blisters.

The new treatment here in the States is anti-tumor necrosis factor injections for low back pain (I don't see why it couldn't be tried for his problem). http://www.ncbi.nlm.nih.gov/pubmed/18287835 though there are some studies that it falls short of expectations.

Other than that, he is on quite comprehensive treatment where you are. I would suggest them also trying biofeedback to see if he can train his brain to override the pain impulses that come from his back.

Any questions? If not, please rate to close. I like to give excellent service and my only way of knowing is to get feedback and/or questions for more comprehensive information.

Customer: replied 4 years ago.

Hi jbmd,


 


Thank you for your email.


The main thing I wanted to find out here is if the process he is following is the only option and what can be done for him in the long term.


 


(The shingles related rash isnt relevant, what I was saying is that the doctor diagnosed the rash as ptiorisis rosea and my understanding is that the doctor said that the rash was a rare side effect that manifests years after shingles (Brendan had shingles years earlier). Anyway I just included it in case it might have been related).


 


So the key question I had was if there are any alternative treatments and it is good to hear that there potentially another injection, so thanks for that, I will look into the anti-tumor necrosis factor injections and see if its an option for him to try. We are based in Ireland so Im not sure if that is available here, but we will certainly see if we can try.


 


Do you think that it is worth his while waiting another few months to have these second and third epidural injections, given that the first injection have very insignificant effects and only for a very short period of time?


Is this standard process in the US or what would you do, if he were your patient. Would you wait for the second and the third?


 


On the biofeedback - I havent heard of that before, do you have any further information on that and where we can access that from Ireland.



Other than that, if this was your brother / sister / child etc, what would you do in the longer term. If the second and third epidural injections have no effect, what can we do. He cant continue on this very strong medication. If surgery is not an option, there must be something else? We are at our wits end and would really appreciate any other ideas / alternatives you an think of?


Is there anyone else we could talk to on this site / elsewhere, who might have dealt with people with the same problem/who might have experienced the same thing. Im understanding that what he has is rare?


 


Appreciate your help.


 


Rosey

Expert:  jbmd replied 4 years ago.
I wouldn't wait for the second injection if the first didn't work, only partly worked, or only lasted a short time. The injections are not necessarily specific as to site on the back so trying to give relief with a second is worthwhile. There is a risk of infection or nerve damage with all injections there, of course, but he's suffering.

It's very understandable that you are at your wit's end with this. Having someone you care about in chronic pain is terrible.

Here is a treatise on the widely-accepted as useful biofeedback in the US: http://www.mayoclinic.com/health/biofeedback/MY01072 at the famous Mayo Clinic. I Googled "biofeedback Ireland" and got a lot of area-specific info for providers. I don't know where you are so I couldn't narrow it down for you. You can check with the one nearest him for payment through your health service.

Another thing that can be tried if the location warrants is a TENS unit: http://emedicine.medscape.com/article/325107-overview

I thought it was very reasonable that you mentioned shingles as it is a common cause of chronic nerve-root pain. It just looks very different from pityriasis rosea and it would be hard to imagine a doctor mistaking the two but it could happen.

I think he needs a high-level pain specialist locally as possible. This is going to be a long-term management process.

Hope this helps--ask more if needed.
Customer: replied 4 years ago.

Thanks so much. I am reassured in someways by what you are saying in terms of a little hope that maybe the 2nd injection might impact - am I understanding that correctly?


 


I am very depressed to hear that it is likely to be a long term management process. I was really hoping for a miracle:-) or even just a magic pain killer we hadnt heard of:-). (Brendan hasn't been able to work for a year and has three beautiful little girls under 7 so its very tough for him and my sister right now to cope and very hard for them to learn that its going to be long term. my heart just goes out to them)


 


When you say a high level pain specialist locally as possibly are you talking 'local' to the root of pain? (or do you mean local to his location). Sorry just need a little more clarification on what you mean here.


 


I think we are probably limited in Ireland to knowledge relating to something this specific as it seems to be very uncommon here as it seems like the the pain management consultant he is seeing (who is supposed to be one of the best here) doesn't appear to have anything else on offer outside of these epidural injections.


When you talk about a high-level pain specialist, how can we find out if there is anything more 'high-level' than what he is getting? Im assuming that the other alternatives are what you outlined in your first email or are there any other avenues we could investigate?


 


If there is something available outside Ireland that isnt here, obviously if it means him having to travel so be it (its just terribly difficult now as he has great difficulty moving, let along travelling). However, he will have to come up with something to manage the pain, especially if as you say, that its going to be long term.


 


That last question I have is in relation to this spreading. Do you think we should be very concerned that the pain, which began as a darting pain going from his ribs towards his back, which was initially covering an area about the size of a hand and was concentrated to this area, is now all over his upper back and side and all over the rib area?


Also the fact that the pain previously was regular but is now constant chronic pain, which is now affecting his breathing. Do we have the right diagnosis from what you are hearing - could it be something else, or is this a normal progression for this condition?


 


My sincere thanks for your help


 


Rosey


 


 

Expert:  jbmd replied 4 years ago.
Hi--I meant specialist local to where he is. But you say he is in consult with the best. I am used to myself and the pain specialists to whom I refer being nimble at searching out other/alternative treatments.

If it is affecting his breathing this is something that needs aggressive trials now. Having someone go into the physician's office with him (as he might be in too much pain to speak up for himself) and discuss other treatment options (or even go in without him but with a letter from him allowing it). Discuss anti-tnf, biofeedback, etc.

I would definitely worry about his breathing. I would be tempted to even try an epidural (like they give with childbirth) or sequential long-acting numbing meds (long-acting like 48 hours maybe) in different spots to see where if anywhere relief comes.

I'm so sorry I can't refer you somewhere here but maybe the pain doctor will be willing to help attempt treatments outside of the norm for Ireland--if he takes pride in profession and fixing patients' problems. (Obviously, saying that is NOT a good idea.)

Patients do come from around the world to places like the Mayo but it's not inexpensive and this is long-term, I suspect. No miracles, unless the tests were all wrong.

I'm so sorry to say this, too.
Customer: replied 4 years ago.

thanks a mill.


 


the epidural injection he received on 19th July I think is the same as the 'child birth' one, but had minimal effect - or could it be a different epidural to childbirth one? e.g. are there different variations of epidural?


 


have you any examples of 'sequential long-acting numbing meds' that might be suitable and we can ask his pain consultant.


 


again thank you and have a nice weekend


 


Rosey

Expert:  jbmd replied 4 years ago.
What I meant by "sequential long acting numbing" meds are ones like bupivacaine given in one nerve-root area, see if there is relief, if not, try another area--trying to locate EXACTLY where the pain comes from.

On the other hand, it might not be nerve root (the shots might show this) but myofascial pain: http://www.webmd.com/pain-management/guide/myofascial-pain-syndrome

I wish I could (but I cannot) examine his studies and records. I'm trying my best to be comprehensive in a situation where I think the diagnosis is uncertain but overwhelming to you all at present.

Long-term, I still think biofeedback is the way to go.
Customer: replied 4 years ago.

Again thank you - We find it so hard to get information that it is great to get something from someone who understands
Are there any specific symptoms that might help us differentiate between myofasical and nerve root?

One of the issues is that the area has been so big even at early stages when it started that they find it hard to know where the root of the issue is. But what I'm understanding is that they need to keep trying with injections to see if/where he gets relief?
Expert:  jbmd replied 4 years ago.
For nerve-root pain they would need to keep trying injections. but you saying it started with widespread (I had a different impression of what you were saying at first--that it started very local and spread) makes me think it is myofascial.

Has he seen an excellent physical therapist or even better a physiatrist? He should to try the stretch and spray or ultrasound treatment with steroid cream. And for this, biofeedback would be even more excellent.

Again, I'm limited to what you tell me and my own deductive reasoning from afar. Hands on with someone interested and aggressive and willing to try is the key.
Expert:  jbmd replied 4 years ago.

I must go offline for a while. I will check back later.

 

I would also consider simple arthritis at the juncture of the spine and ribs from the kart accident. Shame he went--go-karts/skiing/sky-diving/bmx motocross all sound like fun, but...

Expert:  jbmd replied 4 years ago.
Did you have further questions? You haven't rated this to close it so I wanted to ask. I do not know if the person is satisfied by my efforts unless they rate.
Customer: replied 4 years ago.

Hi jbmd,


 


Apologies for not coming back sooner. I will rate you with an excellent review as you have been most helpful. (can I do this now or do I wait until I have asked all questions?)


 


I hope you dont mind me asking some further questions.


 


OK after reading up further on what you suggested and also some further conversations with my sister and brendan, we are fairly certain that the diagnosis is correct e.g. thoracic nerve damage. it took a long time to be diagnosed.


 


 


Can I ask you some specific questions around nerve root damage


 


1) The pain has spread over the last 1 - 2 years from a small area about the size of a hand in the rib area, now in his upper back and sides as well as spead in his rib area. And in the last 2 weeks the pain has intensified and is affecting his breathing.


It feels to XXXXX XXXXXke the pain is spreading to either affect nerves around diaphragm or perhaps the effect of him scrunching up is affecting his breathing.


Is this normal with this condition?


2) when he is in a car, the vibrations make his organs become very painful. what is happening here do you think - is the nerve root damage spreading to his organs? How does this condition affect his organs?


 


3) A very specific question. About a month ago, Brendans morphine dosage was increased from 25 mg to 50 mg.


On the day this increase happened he was sitting out in the sun (not sure if this is relevant but in case).


He vomited a lot of dark blood on the day he did it. Would this be normal from too much morphine?



thanks


Rosey

Expert:  jbmd replied 4 years ago.
Brendan's story is most affecting. The vomiting blood is very unusual and not related, in my opinion, to the condition of nerve root damage or morphine, unless the dark blood came after repeated vomiting.

What you say is concerning for the possibility that he has something very different--something more internal like possibly an aortic dissection (a splitting of the wall of the main blood vessel in the chest) that has leaked into the esophagus or stomach. However, you describe MRIs and CTs and they should have shown something like this. Was he seen for this dark blood? If not, he should be but if it came after repeated vomiting, it could be from a Mallory-Weiss tear of the top of the stomach, a tear that comes from violent retching.

Morphine, pure morphine, is one of the safest drugs known as long as it doesn't depress breathing. However, it does cause nausea and often vomiting in susceptible people.

Nerve root damage would not spread to his organs but anything that jarred the spine would give pain spreading up and down the spine and all along the ribs supplied by his nerve roots. Breathing with his chest would also irritate these nerve roots. Can they do respiratory training to teach him to breathe with his abdominals if that hurts less?

I am so sorry for Brendan and all of those who care for him. I don't care when you rate or if you keep asking questions after you do rate. Sometimes the site closes questions but the timing or rules for that are unclear to me.
Expert:  jbmd replied 4 years ago.
Also, if he's been taking a lot of NSAIDs, like ibuprofen and etc. he could be getting gastritis or an ulcer and it could bleed.
jbmd and 3 other Medical Specialists are ready to help you
Customer: replied 4 years ago.

Hi jbmd,


 


Im really struggling with all of this and finding the situation so frustrating and heartbroken watching brendan continuing to suffer.


 


I am wondering if you could tell me, what would you do if this was your brother/family member?


Have you come across anyone who has had this? Or where would we find someone who had it? We need to find out if there is someway to live with this, if the injections they are proposing dont work.


Thank you


Rosey


 


 

Expert:  jbmd replied 4 years ago.
One often hears the term "heartrending" but a situation like Brendan's really does make your heart feel as if it's being torn in two.

What would I do? As a doctor, I'd review the scans to make sure they adequately showed the spine/cord/aorta. I'd try all the things I described above, one after another--as it spread so quickly, I'd start with the spray and stretch and US steroid under the control of a physiatrist and massage therapist.
Customer: replied 4 years ago.

Hi jbmd


thanks for your help.


yes I a really asking person on person as a family member what would you do?? We are desperate and need to find something.


So not necessarily what you would do with a patient.


 


But just to go through what you have suggested as a doctor and ensure I am understanding correctly, perhaps you can correct me if I am wrong.


1)anti-tumor necrosis factor injections –my sister doesn’t believe it is muscle related or artritis. Would that rule this out?


2)Is the US steroid for joint or muscle related or is it also suitable for nerve root pain?


3)Biofeedback – we will definitely look at this


4)Epidural – he is doing this. waiting for his second injection~
5)Is the Bupivacaine Injection different to this. Im understanding that the epidural injection he had was a steroid injection, so is that different


6)Review the scans to make sure they adequately showed the spine/cord/aorta - The consultant has reviewed the MRIs and scans and there is nothing showing.


7)He cant bear anything on the area e.g. he is hypersensitive as it even very light touch really causes bad pain so not sure if the spray could be used or anything that has to touch him


 


So if you can think of anything else and just let me know what we can eliminate that would be great.


 


Thanks so much


Rosey

Expert:  jbmd replied 4 years ago.
I don't treat patients any differently than I treat relatives (sometimes I even like them better). After all, they're all people.

What I meant by "as a doctor" is that I can go to the radiology department and say, "REVIEW THESE WITH ME" to the radiologist. A lay person cannot.

The anti-tnf treatment is for nerve root like sciatica. It's like a SUPER long-acting steroid treatment.

Even if it is nerve root, by now the muscles are sore anyway. And the stretching and steroid US might or might not help but has almost no side effect and can make him more mobile with less pain and spasm.

The Bupivicaine I was talking about was going from nerve root to nerve root to see where an injection works--as the muscles react to nerve pain, it gets tough to tell. So, block T2-T3 and see if that helps. Then T3-T4 to see--it's diagnostic to see where to put the steroid or other shots.

The spray can chill the skin so the superficial nerves are numbed and then GENTLY, the work begins to end the cycle of pain and spasm.
Customer: replied 4 years ago.

My apologies, I didnt mean to insinuate that you didnt treat patients differently to relatives. I suppose, I am really just trying to know what to do as we feel so desperate. We would love if there was someone we could speak to who has been through this and got out the other side:-)


 


Is there anywhere we can go to find people who might have had this. are there any websites in the US, UK or anywhere else that we mighn't have found?


Or any other health care professionals or doctors that you know of who might have had patients with the same thing and might be able to give some insight.



thanks again for the above explanation and for all your help



Rosey

Expert:  jbmd replied 4 years ago.
Don't apologize--I saw it as a way to make a feeble but true joke. Some relatives are awful. Obviously Brendan is not.

Let me research websites and see if I find something useful.

Contacting physiatrists in your area might help
Customer: replied 4 years ago.

Thanks again for your help. And yes, believe me i have some of those relatives too:-). Ironically, Brendan, who is one of the most amazing relatives is the one who is suffering this awful pain!!


thanks anything you find would be greatly appreciated or if you think of anyone else who might know anything.


all the best


Rosey

Expert:  jbmd replied 4 years ago.
Here's a great UK site on thoracic back pain: http://www.patient.co.uk/doctor/thoracic-back-pain

Here are two support forums: http://forums.webmd.com/3/back-pain-exchange/forum/551 and http://www.spine-health.com/forum/pain/upper-back-pain-thoracic

Maybe too low level for Brendan: http://www.thoracicbackpain.net/thoracic-back-pain/how-to-sit-properly-to-avoid-thoracic-back-pain

There are also braces sold for this but I hesitate to recommend one without a diagnosis.

Customer: replied 4 years ago.

Hi jbmd,


 


Just a follow on from our conversation regarding my brother in law Brendan and his nerve damage.


 


Firstly I wanted to thank you for the website recommendations and help, it is fantastic speaking to someone with medical experience.


 


I just want to ask a couple of more things if that is ok with you?


 


Since our last mail Brendan has received a second injection which was very effective for approximately 5 days. It included some kind of heat treatment also or was given with a heat treatment.


 


Unfortunately since then, the pain has returned with a vengeance and obviously we were so hopeful that finally he may have a chance to return to his former life.


 


Brendan’s doctor called him to say he wouldn’t be performing any more injections on him. The doctor said that usually 3 injections could be given to a patient within a given year but he wants Brendan to work with the pain management team instead of receiving any more injections. Obviously we want to explore every avenue before resigning him to the pain with management and with the short effectiveness of the second injection we were so optimistic of success.


 


In your experience could Brendan be a good candidate for a third injection in any circumstance or what may be the reason he is not a good candidate for it?


 


Can I also ask your opinion on the MRI report, it reads as follows:


Disc desiccation at the C5/6 and C6/7 with loss of the intervertebral disc height at C5/6. Normal bone marrow signal.



C5/6: Posterior disc bulge eccentric to the right with moderate narrowing of the right neural exit foramen. No evidence of central canal stenosis.



C6/7: Posterior disc bulge eccentric to the right with mild narrowing of the right neural exit foramen. No evidence of central canal stenosis.



Impression:


Posterior disc bulge at the C5/6 and C6/7. There is associated stenosis of the exiting neural foramen most pronounced on the right side at C5/6.



Could anything on this report cause the type of severe pain Brendan has or does the report look ok to you? Maybe there is something here we can look further into.


 


One more question I promise. We received a recommendation for Brendan to see a particular neuro-surgeon but is it a neurologist rather than a neuro surgeon that would potentially be able to help to investigate his case further.


 


Thank you so very much for all your help. Brendan got a short taste of near normal life and we are hopeful that this dream will happen again for a longer period of time so I am very appreciative of all your help.


All the best,


Rosey

Expert:  jbmd replied 4 years ago.
Rosey, the MRI is not terribly bad--certainly NOT surgical. It might account for some of Brendan's pain but again it might not. I think, as I said, his pain is mostly muscle/tendon/ligament/fascial.

That the injection worked is wonderful--it broke the pain cycle. If you can arrange it, through paying for the medication or whatever, the anti-tnf treatment in the SAME area as the shot that worked might do wonders for as long as a year and during that year he should work like mad with a physiatrist/physical therapist with spray and stretch and strengthening as much of his strength is probably gone.

Here's why I don't like the "3 shots and you're out" deal: what if some of the shots don't work because the docs put them in the wrong spots? However, steroids NEVER work for long (5 days is short but a couple of months is long).

This is my opinion.
Customer: replied 4 years ago.

Thank you again and we are very reassured by your response.



Just to ensure we are understanding


1) Is there any other reason why the consultant would refuse to give him the 3rd injection? It seems logical to us that he should try something that he got some (even short term relief from finally) so we are inclined to follow your advise on this.
The consultant refused to answer our question as to why he is refusing, could there be any other reason why he is refusing this treatment?


 


2) In relation to who might be able to help him next. We received a recommendation for Brendan to see a particular neuro-surgeon but is it a neurologist rather than a neuro surgeon that would potentially be able to help to investigate his case further?


 


thanks again


Rosey


 


 

Expert:  jbmd replied 4 years ago.
1. That I don't know. What would worry me, vis-a-vis repeated steroid injections is the fact that, in the same spot, steroids can thin and damage the tissue--i.e. it could cause rupture in a tendon/ligaments. If the injection was assuredly in the same spot, that might be a worry but the area is not like the shoulder or knee--the ligaments and tendons are not as important structurally.

2. Here, the neuro-surgeon MIGHT say, "I have no reason to see you as your MRI is non-surgical" (if they agree with me). Or, they might have a clinic with staff that do non-surgical treatments for the back and so see some useful time spent and money gained (cynically speaking). I don't know the system well enough in Ireland to know who would most likely be able and willing to help. For sure, if he sees the neuro-surgeon, he will get another opinion on the MRI (the guy should read it himself) and possibly a recommended course of action OR a referral to a neurologist (I'm not sure this would be better than a physiatrist/high level physical therapist. They would be my choices at this time.)

Good luck, Rosey.