Severe Pain In Spine - Feels Like Lumbar Puncture (Spinal Tap)

[spraven]

Hello,

I have had chronic pain for awhile now.  In fact, I have had a severe Migraine that never goes away and I've had it for over 7 years.  I have been treated by several specialists, including 2 weeks at the Diamond Headache Clinic under the treatment of Dr. Merle Diamond herself in Chicago.

I have also been diagnosed with Fibromyalgia & Degenerative Disc Disease over the course of the past 7 years.

My history is that I'm a 34 year old Male who was very active and loved my work at the time this all started.  As you can imagine, I am no longer active and can't work on anything for more than a few minutes at a time.

I have had Heart Surgery in 2008 to have a Pericardial Window cut in the Pericardium around my heart to drain a substantial amount of fluid.  That fluid was tested for everything by the Pathology Labs and came back with NO Reason for the fluid buildup.  They called it Idiopathic Pericardial Disease and said I will have it the rest of my life.

I had Hip Surgery in 2007 to repair a torn Labrum.  While that was not related to my health issues, per se, it did reveal a tremendous amount of Arthritis built up in the joints that was photographed and shown to me by the surgeon.  He said that if I had that much in my Hip, chances were that I had that much in the rest of my body.

I've had virtually every test known to man and they've found nothing substantial in my case, such as any AutoImunne issues like Rheumatoid or anything.  It has truly baffled most any doctor I've seen.

Anyway, the reason I'm posting here is that I have been having a strange pain (and I've become very used to pain) and it is scaring me a little bit.

It only happens every so often (few days apart usually) and it is a Severe Pain located in my Spinal Cord area along the lower back.  It feels exactly like a Lumbar Puncture (Spinal Tap) and I know that feeling because I've had one done in the past 7 years.

It doesn't make me throw up like the real LP did, so the "pressure" isn't as intense, but it's so much the same pain that it realistically feels like I'm having a LP done right in my bed.

It's even in the exact spot where the original LP was done 6 or 7 years ago.

If anyone has any ideas, or maybe even any suggestions as to how I might find a real diagnosis of what has been going on with my health for the past few years...I'd really love to hear them.

I get so frustrated with the fact that the doctors all seem as confused as I am.

Thanks for your time,

Scott

[spraven]

I must apologize that it has been this long since I followed up on this post. Things have been majorly crazy in our lives.

I now have multiple specialists that work to help with better quality of life in their area of specialty. Some have been great, some not so much!

I did switch to a new Pain Physician that I absolutely love!  This was just after a series of unrelated surgeries and finding a new doctor while I was in the hospital for Bacterial Pneumonia in BOTH lungs after a surgery that was done because of my tonsils having a mass on one of them. They took them both out and the surgeon decided to do a little exploring while I was on the table. He found that my Hyoid Bone is deformed.  He isn't sure is this is what might be causing swallowing problems I have been having for quite some time.

Anyway, the new doctor I use was called in to consult on me because of my strange history. She is both Internal Medicine and Infectious Disease and usually doesn't take patients under 50.  She asked my wife if she might be able to take me as a patient, which was perfect timing because my previous doctor closed his practice and moved away.

When the Surgeon took out my tonsils, because I was on pain meds for a long time by the time I got to him (by no choice of my own), he told me he was going to prescribe a 30 day supply of MS Contin (Morphine Supfate ER) once every twelve hours as a control drug and Percocet up to 3 times per day for "Breakthrough Pain!"  That was new to me.

When I went for my first appointment with the new doc, she said I should have been on a long term plus a breakthrough for the entire time I've dealt with Chronic Pain!  She decided to put me on OxyContin 20mg and Percocet (this was on top of my regular meds).

I could tell right away that it helped, just not as much as needed. I was still taking the breakthrough meds 3 times per day.  Long story short on that, thanks to hitting the Gap in my Drug Plan, she had to put me back on the Morphine Sulfate ER at 30mg once every 12 hours again.

So, to go the direction I started out with this post...

In the last 2 years, I had 10 Surgeries over 22 Months. Not all were related to the same areas of the body. It has been a rough couple of years. On top of the first couple surgeries, I had developed an even more severe form of pain directly on my Tailbone!  Nothing helped it. Not special cushions or pillows. Not my meds. Nothing at all.

My new Pain Doctor tried injections and they would last about 3 or 4 days at the most!  He then had me do a trial of a Spinal Cord Neurostimulator to target the pin and intercept the signals before they made it to my Brain. I was up for anything at that point!

He put in the trial on the day before Thanksgiving and I came home and slept awhile. I got up later, when our kids were already in bed, and I walked into the Living Room, where my wife was, without my wheel chair (that I had to start using again off and on) or my cane (which I have used since May of 2004, I think). My wife couldn't believe it and even got the kids up to see!

We actually got in the car and drove to Thanksgiving Dinner with her family, 3 hours each way, I sat the whole time I was there (loving on my new Great Niece), and we drove home. When we got home, I was just starting to feel pain trying to creep in.  This trial was an astounding success!

On March 5th of this year, I had the surgery for a permanent implant put in. At first, we didn't have the right settings targeted like the trial.  I've met with the Medtronic Rep twice more to change settings a little and we still don't have that "Magical Setting" that we had back on the trial. I have an idea of what to have him adjust and I think it'll be almost perfect...if I can ever be there when he's available to do so.  BUT...the stimulator has helped me tremendously since the surgery, even of it hasn't targeted the worst area we need help on.  I would definitely suggest it to anyone!

Now, after all that "babbling" about everything, I DO have a question and I'm not sure if anyone will even follow up on this since the original post was so long ago...but it's worth a shot!

I have had a pre-cancerous polyp removed from my colon and been told I also have Hemorrhoids.  I already knew that to some degree from past colonoscopies, but there are days that I can't have a bowel movement without the toilet paper looking worse than when I have nose bleeds!  Sometimes, the blood clots are bad enough to bounce to the sides of the toilet.

My question is this...

Can this be part of what's causing or contributing to my Tailbone pain?  I don't have burning, stinging, or itching of any kind.

I hope at least someone that is a professional reads and responds to this!

Thanks so much!

Scott

[Dr. A. Srivastava]

Hi, Thank you for your question. I do sympathize with your health concern. Degeneration of spinal disc occurs as age progresses and this can occur at any level of spine. Therefore, this makes disc more fragile and slight pressure may lead to disc prolapse. As a result of prolapse or injury, nerve impingement may cause intermittent low back pain, leg or thigh pain, numbness or tingling of the buttocks and loss on bowel/bladder control(if severe disc degeneration). The pain originates due to degenerative disc disease is usually treated with heat compression, rest, rehabilitative exercises and pain killer medications. In addition, surgical treatment like discectomy, spinal fusion, and spinal laminectomy may be the last resort in most of the non-resolving cases. . I would recommend you to see a neurologist who can evaluate the details of your case and could better determine the insight of your situation.

[tjj3761]

Sorry to hear about all of your pain and medical issues.

Maybe you need another neurologist's opinion.  Sometimes a neurologist will then refer you on to see a neurosurgeon for unexplained pain as well.

I believe there is one test called a "myelogram" to look for different disorders of the spine.  

Also, sometimes patients are referred for Pain Management where a specialized neurologist will do a series of pain medication injections for pain relief as well.

Your problems could, indeed, be 2 separate issues (head versus spine) since you have a history of migraines.  

From personal experience with my own brain MRIs, not all things show up on these tests as one might expect.  It can certainly be frustrating, for sure.

I would certainly think about some kind of pain management clinic until your neurologist can find out what is going on.  I hope you can feel better soon!

terri

[ggreg]

http://www.buzzle.com/articles/lumbar-puncture-complications.html

Read about halfway down in the article at the above link, the several paragraphs about complications from a spinal tap.  On the arthritis thing, you'll need a new scan of the area where it hurts now, so they can see what mechanics are causing the pain there.  Also, a review of any cervical spine MRI is in order, to see the level of arthritic changes, which can cause headaches.  Probably whatever the cause, at the very least you'll need some waaaay better medicines to get rid of your headaches and new spine pain.  GG

[spraven]

Thanks for the comments.  I am definitely going to talk to my doctor about the new pain issue.  It's strange that it is just now happening if it were related to the original LP, wouldn't you think?

I have had scans from head to toe, pretty much.  Several MRI's and 2 MRA's of the brain to try to figure out the issues of the headache.  I have also had a Discogram done (about 5 years ago) and talk about pain...wow.

There is a lot more to my history than I was able to put earlier too.  For instance, in the first year and a half that I began to have problems, I spent a great deal of time in a wheelchair due to the severe pain throughout my legs and even some issues of temporary paralysis.  Thank God that I don't have to do that now...I am able to at least walk with a cane now.  The pain is still there, but I haven't had any issues with the paralysis since about 5 or so years back.

I also had trouble early on with blackouts.  I'd be standing and talking to my wife or kids or someone and then just drop like a tree that's been cut down.  It got so common that when it would happen, my 2 daughters (who were 5 and 3 back then) would go grab a wet cloth and start washing my face and forehead and talking to me to bring me back around.  Talk about a sad situation for them to deal with at such a young age.

The simple fact that nothing on any of my scans has turned up anything that one might normally see causing the Migraine and the chronic pain throughout the rest of my body is why this has been so frustrating.  Dr. Diamond in Chicago told me that she thought I might have some kind of damage in my Central Nervous System causing it all.

She did tell me that my Pain Reactors where messed up.  I feel pain in scales that are off the charts for most people.  Like if something were hurting you at a 2 on a 1 to 10 scale, the same pain would be at least a 9 for me.  When I had my hip surgery, the surgeon had to massively up the dosage on my Pain Pump that they inserted into the surgical spot.  It was designed to last for 36 to 48 hours for most people, but only lasted about 6 for me.

Also, when I had the heart surgery, the pain was so bad that they couldn't keep me under during the procedure and the anesthesiologist gave me the maximum she could give without killing me.  You could hear me screaming throughout the entire hospital.  It was horrible.

Another strange thing is the way my body handles medications.  I've had several doctors tell me that they've never seen anything like it.  It works like a sponge and just absorbs the medications but it doesn't metabolize them right or something so it takes incredibly high dosages to have any affect on me at all.  It is similar to what a junkie might be like on illicit drugs due to prolonged and heavy usage, and at the time I wasn't even on any type of narcotic for pain management.

For instance, back to my heart surgery...to get me to stop screaming from the pain and to even dull it a little, they had me on Morphine (which wasn't doing a single thing) and they had to add in Dilaudid too.  Still, it took almost 3 hours for the 2 meds combined to work and dull the pain.  I will say that it worked beautifully once it kicked in and I was in "la la land" for the next few days.  LOL

Also, when I have to go to the ER if my Migraine gets so bad that it's unbearable (which happens every so often), they would give me a shot of Nubain.  The "regular" ER Doc there got used to the fact that he had to give me almost 4 times the normal dosage for my body to even respond to it.  The first few times they had to do that, they couldn't understand how I could get up and walk out to the car on my own (of course, my wife was driving  LOL).  They totally expected me to be knocked out and have to be wheeled out there or something.

Anyway, I wanted to toss in some more of my history and some of the other things I deal with on a regular basis.  I know this post has gotten WAY LONGER than I intended, but sometimes the more info you can give, the better idea some people get.

I really need to set down and put ALL of my history together in a document and print it out and take it to my pain specialist/neurologist since I have only been seeing her for less than 2 years.  We recently moved here and I had to find a new doc that was local for me.

Ok...I'll stop rambling now.

Thanks again for the info.  Any other comments you might have or anyone else might have would still be greatly appreciated and would give me some other thoughts to share with my doctors.

Scott

[ggreg]

Interesting.  I was going along with spinal disc degeneration or arthritis until I got to the part about your new back pain being in the same spot as your spinal.  See, sometimes a lumbar puncture can cause something to go wrong with the spinal fluid and it'll create pressure in the head.  I don't know the details on all that, I just vaguely remember reading about it one time.  So, you could ask your doc about it, seems like they can drain the fluid in your head and you get relief.  And if the LP has done this, then probably the nerve where it hurts right now has been damaged and is finally "complaining," in which case they can give you some shots of cortisone in that area (just what you need) or maybe acupuncture might help that nerve.

But generally, I do know that if you tear up your neck bones, like if you have bad arthritis there, it'll give you a terrible headache that just won't quit.  And likewise, it may just be a coincidence that the place you got the LP is where your bones are getting arthritic and weak, and maybe the arthritis or a damaged disc is pushing on a nerve a little, and is causing pain there.  So, you could also ask you doc to do a scan of your spine, from the neck down to where it hurts now, and it should show if bad arthritis is a possible cause of your headaches and the back pain.  The solution, if that's it, is generally medication, maybe a good back brace, and possibly physical therapy, the moderate route of treatment.

I broke my back in three places in a car accident, and talk about a hurting back, used to be it would take me an hour to get out of bed.  But I finally got the right medicines and I can manage much better now.  So, considering the alternative is surgery, and since I am older and disabled anyway, I think medicine is a perfectly good way to go.  My X-rays unnerved my neurologist, so I think because your surgeon showed you your pictures, I would take the arthritis thing more seriously than any problem with the LP.