Severe thoracic back pain, many tests, no diagnosis

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Ransomed
New Member


Date Joined Dec 2010
Total Posts : 18
   Posted 12/28/2010 12:01 AM (GMT -6)   
My husband has had pain in a spot in his middle (thoracic) back for the past three or four years that has gotten much worse in the past few months. He also has something like five bad discs in his neck, but they are not bad enough for surgery. He has two metal hips and has had a microdiscectomy in 2008 on his lumbar spine. He is only 30.

His symptoms have included sharp, stabbing pain in the middle back that sometimes radiate into his chest. It got so bad recently that he went to the ER, and they were worried he may be having a heart attack. But his heart was checked, and nothing abnormal was found.

He has also had spasms so bad originating from that spot that he has literally been thrown off from the bed by them. When we go to bed, the spasms usually get much worse after he lays on his back for a few minutes. So, he rolls on his side, and they ease up a little.

His arms often hurt and sometimes go numb, as well as his left leg.

A few weeks ago, he got really dizzy and lightheaded, and his body seemed to turn into a noodle. He couldn't stand or hold his head up and struggled to stay in a chair. His speech became slurred, and his vision became blurry, but he was still thinking coherently. These symptoms were accompanied by worsening pain in that spot in his back and a severe headache. We went to the ER, and they released him with a little bit of Valium but really didn't do anything about it.

Most recently, he has started having the hiccups several times a day, and I am wondering if this may have any connection to possible nerve damage somewhere.

He also appears to be retaining excess fluid. Sometimes his feet swell from it.

Over the past few months, he has had his lungs checked, finding nothing but granulomatous disease; his heart checked, with no abnormal results; a nerve conduction study which found nothing abnormal; a bone scan which found nothing abnormal (other than his metal hips and normal degeneration); and an MRI of his thoracic spine which found nothing abnormal. He has also had CT scans of his head, various blood tests, and multiple x-rays, all of which found nothing.

He has tried physical therapy which eased a lot of the pain in his body but did nothing for that one spot. He has even said that, when they gave him a shot of Dilaudid at the ER a little while back, it eased everything but that spot. Same thing with the morphine he was given on a separate visit.

We are desperate to find out what is wrong and how to treat it. He is in severe pain. (He says it's getting almost as bad as how he felt when he woke up from having each hip replaced.) And yet nobody can find anything wrong; so no one will treat him.

From my research, I've found that the morphine-resistance in that spot may indicate nerve pain. But none of the tests have confirmed it; so, I don't even know if the doctor would believe it.

I've also read that the nerves that cause hiccups feed into the intercostal/thoracic nerves. Could there be a connection here?

Can anyone help us figure out what's wrong?

Post Edited (Ransomed) : 12/29/2010 1:17:05 PM (GMT-7)


Chutz
Veteran Member


Date Joined Jan 2005
Total Posts : 9090
   Posted 12/28/2010 2:51 AM (GMT -6)   
Hi Randsomed!

And welcome to the Chronic Pain family. I'm so very sorry to hear your husband's painful story but I'm glad you found us. We can offer suggestions from our own experience, friendship and a lot of shoulders to cry on when things are at their worse. We've even cried for each other....and sometimes it helps.

As far as your husband's conditions...wow! What a nightmare the two of you are enduring. And to only be 30 is a morbid twist of fate. I have a couple of suggestions that might help. See if any of them sound interesting to you...

First, if you haven't already done so, get him to a university/teaching hospital near you. Even if you have to drive a long distance, mortgage the house or borrow money to get there, these places ARE the cutting edge of research and technology. They won't send him away without finding out what is going on. At the top of the page is a subject titles Chronic Pain 101. In there is a link to many of the university/teaching hospitals around the world. Here's the link so you don't have to go searching.

en.wikipedia.org/wiki/List_of_university_hospitals

There are likely others but this list has a wide selection. Find one closest to you and make a call. Explain the basics of his symptoms and ask for a referral to the appropriate doctors or clinic. It just might be the road to some relief for him and ultimately you.

One other thing that caught my eye was idea of nerve pain or neuropathy. This is something that is very difficult to assess yet the patient can be totally disabled by the pain and the doctors can't find out where it's coming from. Nerves are very tiny and if they are pinched, inflamed or otherwise being abused the pain can be beyond compare. I would continue to look into that area.

Other possibilities to think about are Fibromyalgia, Complex regional pain syndrome (CRPS), or even leftover pain from his hip surgeries. It's possible there was some damage done during surgery that has triggered other pain. Let me explain what I mean...that sounded a bit flakey...lol In particular I'm thinking of Fibromyalgia. This is severe muscle pain with no apparent cause. (you can check out our Fibro forum for more information on it) But most people with Fibro can trace the onset to some 'insult' to the body...either physical or emotional. Often times it's a surgery that can trigger fibromyalgia for life. I'm not saying this is what your husband has but I happen to have first hand knowledge on this one...it's why I came here.

There are so many things that could cause your husband's pain and it might be more than one. I hope something I've offered can be of help. Others will be along to share their experiences too.

Warm hugs,
Chutzie
Moderator on the Fibromyalgia and Chronic Pain forums

“If you want to live a happy life, tie it to a goal, not to people or things.” Albert Einstein

Screaming Eagle
Forum Moderator


Date Joined Sep 2009
Total Posts : 4994
   Posted 12/28/2010 8:14 AM (GMT -6)   
Hello Ransomed!

WOW!....I feel badly for both you're husband and you! I really don't have much to add to what Chutz suggested, but wanted to welcome you here to the CP forum.

When you first mentioned the hiccups, I thought maybe it might be one of the meds causing it, but then I saw that he is not on any pain meds. I used to get them all the time shortly after taking my Percocet, and at times they would last quite a while. There bothersome to say the least, and especially when your in pain.

We would love for you to keep in touch with us, so please do keep us informed on your husbands condition. You will find that the membership here, is wonderful at supporting each other.


Take care,

SE wink

Trudy2
Regular Member


Date Joined Dec 2010
Total Posts : 213
   Posted 12/28/2010 9:12 AM (GMT -6)   
I would definitely second the idea to contact a teaching/university hospital. I have been being treated by one since 2003. I had a rare skin condition in 2003 that my local hospitals just couldn't get a grip on. Then in 2004 I was diagnosed with acute myelogenous leukemia, I went through chemo and a bone marrow transplant. I almost died during the bone marrow transplant, but due to the care that I received, I made it through and have great supportive care ever since. I am now cancer free but suffer through many cancer related problems post transplant that are managed by my primary care physician and pain and palliative center through my hospital.

Without the care that I got there, I wouldn't be here today!

Trudy in Ohio

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 11420
   Posted 12/28/2010 12:42 PM (GMT -6)   
Hi Ransomed and welcome to Healing Wells chronic pain forum. I am sorry that you have to be here but very glad that you found us. Everybody here has a story to tell as to what has brought them to this forum. As you can see there are plenty of us here that suffers with CP. I guess the old saying misery loves company, must be true when it comes to dealing with CP. Perhaps your husband may be interested in coming and reading some of the posts here.

From what you have written he really does seem to have a lot going on and nothing definitive for a diagnosis and thats so frustrating. You mentioned he has a lot of pain in the thoracic area and that is just one part of the spine that no dr will do much treatment on at all. At best some physical therapy and thats about it. You know with so many different symptoms going on I too think a university hospital is a great idea. Those drs there see and treat just about any type of problem there is out there. They are trained to search for answers. Whatever you do don't give up on getting some answers, sometimes we have to advocate for our own care.

I do hope you will, keep us posted on how your husband is coming along and maybe get him to pop on and say hi to everyone. Good luck and take care.
Moderator Chronic Pain Forum

Ransomed
New Member


Date Joined Dec 2010
Total Posts : 18
   Posted 12/28/2010 6:05 PM (GMT -6)   
Thanks for you guys' support!

We went back to the doctor today to get the results of his MRI and bone scan. (We knew them already; but I wanted to talk to the doctor anyway.)

He said the only thing the tests found was a slight abnormality in a certain enzyme level that might indicate something that a rheumatologist could treat. (But I don't think he thinks it's what's causing the big issue here.)

I asked the doctor about his morphine-resistance and about the hiccups. As usual, he just said he didn't know and that "some things just stay a mystery" (or something along those lines).

I asked if the morphine resistance in his middle back might be a sign of nerve pain. He says he is sure it is not nerve pain. But I have my doubts.
I asked about Lyrica. He said he didn't think it would help, that asking for Lyrica was a "desperate move" but that it wouldn't hurt anything. So, he prescribed him two a day (30 mg each, I think.).

He also prescribed prednisone for the inflammation (ten days' worth, I think.)

At this point, we are hoping the Lyrica will do something.

He is also scheduled to get an epidural in his neck in January, but that's not even in the part of his back that's hurting him so bad.

I think he might be considering seeking help from a chiropractor as well.

In the meantime, I am doing a little research and am considering sending a form letter type email to all the medical universities in this state and surrounding states. We are not seriously considering this route yet; but I'd at least like to know which university hospitals deal with this kind of issue around here and which don't so that, if and when we do decide to go that route, we'll know which one to go to.
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