I really need help

[jchebert1979]

Despite multiple spine surgeries I am still in horrible severe pain. I thought that I finally found the main pain generator. My problem is that the neurosurgeon disagrees. Despite an MRI that shows foraminal stenosis, classic pain patterns that correlate, and a positive discogram, he thinks that this is not the problem yet can also offer no other explanation or help for the pain. He ordered a CT myelogram and unfortunatly the report shows nothing at the level in question however, the films (to me at least) look like at least a little nerve compression.

Where do I go from here? It is the same thing with every new doctor. Wait for the appt., wait for the tests, wait for the follow up appt. I can't endure this suffering any longer. I've been on every medication possible from hydrocodone to Fentanyl, to lyrica, to neurontin and every combination possible. At best my pain is reduced to a 9 for maybe an hour. I fought this pain for two years and it has beaten me. I just made my will and made sure that everything is in order so I don't leave anything for my family to have to take care. The worst thing about this is that I'm not even depressed, I'm in too much pain to even feel sad.

[Eddie G]

Hang in there. Alot of us feel the same way you do. Try to keep a positive attitude if nothing else. Ask alot of questions and bring a notepad or a sweety* to the Dr. because alot of the spine info can be overwhelming and complicated. My doctor tries different drugs with me all the time, even antidepressants that work on "substance P". I finally settled on Neurontin, Oxycontin, TENS unit, massage therapy, occasional Valium, and medical marijuana and I'm still in horrible pain. I spend most of the time in my queen size hospital bed with my Playstation so that distraction helps too. I can kinda function to a point and l am still able to drive the 4 minutes to the diner frequently just to get out of the house. One of my issues is that my artificial disc is auto-fusing but we dont know for sure if thats the pain generator, only that it's happening.
Maybe they'll figure out Substance P someday.

If your biggest problem is waiting for doctors & tests, fishing for a pain generator, trust me it could be worse. You could be having to deal with insurance companies trying to screw you over and the stress of that is not gonna make your back feel any better.

Or you could be like my friend who has 95% spine blockage and injects Morphine in her tummy all day while her husband complains that she's not cooking his dinner. Ugh.

It could always be worse!

Keep yer chin up.

Have a stiff upper lip.

Buck up litte camper.







* = wife, girlfriend, or both.

[fireyangel76]

I know how hard it is to deal with the pain. We are all here and have been through it. I read this right after reading "I lost another friend" post. It is easier to deal with the pain than the hopelessness that is sometimes felt after dr.s appt, loss of jobs, family, friends. Keep your chin up. If you don't find a Dr. listens to you or doesn't give you hope...find another. We can live with pain but it is harder without hope. There is always something that can be done....just keep searching and never give up...people here have good ideas and a great source of support...

With the deepest empathy for you,

Betsy

[sahuaro]

Did your doc just read the report or did he actually look at the films?
The reason I am asking is that I saw several neurologists and neurosurgeons who just read the report and then told me that I did not have a problem--one neurologist (a woman) actually yelled at me that I didn't have a herniation and I shouldn't even be using that word. All they did was reach for their prescription pad.
Please don't give up. Get another opinion--from a surgeon who will look at the actual films and do a thorough clinical evaluation.

[New Disc-Man]

Or better still, take the report out so they have to make their own opinion. You know what the report says, so you will soon see what sort of dr he/she really is after they give their opinion of what the scans say. ANYONE DONE THIS?

[steve55]

I was feeling the same way prior to my 3 level ADR. My pain level was 9 and I wondered what Id do if I couldnt rid of the pain after surgery. I got a 3 level ADR and my pain level went to zero afterwards, what a relief. Dr Bertagnoli said putting in my 3 discs was the easy part of my 6 hours surgery that should have only taken 3 hours. The hard part was spending meticulous time decompressing the nerves, one by one at each disc level. He said I was a complicated case due to the nerve compressions. I sense that not all docs are equal in how good of a job they do with that type thing during surgery. You need a top dog with seasoned experience who has handled difficult cases. Something is causing your pain and it seems your docs so far cant locate what it is. FInd out who he best docs are in the US or Europe even, and who has the reputation at spending the time and dedication into working with you till they locate the issue. I think some docs just dont get aggressive and committed enough to finding the problem. Get one who will go to battle for you instead of non chalant attitudes of "sorry, we just cant find anything". Anytime I read of AFR patients who dont have pain relief, I wonder whether their doctor was more focused on the ADR placement than the more important "nerve decompression" part of the surgery.

[wilsonrob]

I would never bring an MRI report or tell a surgeon what another surgeon said. I am paying for their opinion not some radiologist or another surgeon. My MRI's, catskans, myelograms did not indicate clear nerve compression but once I had the nerve decompression the pain was gone.

[dshobbies]

I understand your pain and feelings of hopelessness. What comes to mind is my incessant phrase "it's not fair" as I saw all around me going through their days and complaining about everyday happenstances.

Is there any chance you can find your way to Germany for a consult with the infamous Dr. Baumbach. From reading other posts, his diagnostic skills are second to none, and that's exactly what you need. I understand his examinations are beyond thorough so I think they must be done in person as opposed to online or via telephones.

I realize I recommend this as if you were made of money and especially in this economy it's probably not all that doable but... your difficult situation leaves few options.

Getting all your ducks in a row is a good idea for everyone but using your pain instead of your brain as a decision maker, not so much. Your pain is not capable of rational thought. . . .

You are in my thoughts, Dale

[Maria]

What you're saying, was there over 15 years ago but am in agreement w/Dale re using brain not pain to make the decison you might. Of course when pain overrides brain it's extremely difficult to do this but try real hard to hang in there for the chance that things have the possibility to improve~ still, someway, somehow even if thru more pharmacology or other type of non surgical tx or surgical tx.

Pain is horrendous taskmaster. I recall that only too well, esp. 24/7.

[jchebert1979]

The problem is that I do not feel hopeless. I'm not sad and I don't feel despair. I know that that I can be helped but the pain is so severe that I don't know if I can hold on long enough to find it. I cannot rest my head on anything without causing excruciating pain. I can't drink out of a glass because extending my head back causes excruciating pain. I can't yawn because triceps and chest lock up when I do. On the exhale of every breath when my shoulders relax just a bit I get a shock down my left arm. I can't not breath.

There have been 3 times in the last two years that "something" has released and my entire body relaxed. My shoulders dropped, my neck released, and all of the muscles that were spasmed released. You could visually see all over my body. I have never felt anything better. It only lasted until I moved my head.

Steve, I completely agree with you but I have searched for that very doctor for two years now. I don't have the money to do it anymore. If you know where he/she is let me know.

[fuzzy]

Don't give up. There are some really good doctors out there and I wholeheardely agree with the comment above about Dr. Baumbach. This neurologist is a specialist in spinal nerve problems and so right away diagnosed my problems that were missed and continued to be missed by stateside Dr.s for years. Everything this man has said and predicted about my condition in the last 2 years has been spot on. His opinion would be so valuable but he is in Germany. But there are good ones here in uS as well. Continue to look for answers, there is an answer to your problems.

[Maria]

This is most likely something you've tried already but how about an injection of Toradol 60mg IM. I know even if this works it would be a very short lived type of relief for you but just thinking it might help.

I don't remember that much about my pysch nursing but perhaps you are feeling *detachment* in terms of your pain and your mental status. I think this evolves out of a pretty intense depression if I recall correctly and who wouldn't be with the level of pain that you're describing and situation.

$$ ~ understand that. I wonder if one of the good docs would see you and treat you under charitable circumstances? There are surgeons that do this in the LA area altho I don't know exactly how one qualifies for this and it sounds like you are short on endurance/strength because of the degree of pain you're experiencing. Again, I understand this as I've been so bad that there was nothing I could do but lie on the floor and movement was excrutiating in my lower body. Even going to the bathroom was an event of epic proportions. And the pain dragged on and on...

While I understand where you're at or imagine that I do I am hoping there will be some type of answer for you that would be beneficial and viable.

[steve55]

Originally Posted by jchebert1979

Steve, I completely agree with you but I have searched for that very doctor for two years now. I don't have the money to do it anymore. If you know where he/she is let me know.

Dr. Bertagnoli

And yes, perhaps Dr Baumbach would be even better at diagnosing you. Maybe you could see both. But if you cannot afford them (they would be out of any insurance network you may have), then you can still find good docs in the US also. Ask Mark, (MM global) if he may know of someone reputable in your area. If you have to stay in your network, then you may need to move on to a different doc and keep trying. I would hope you have family members who can chip in to get you to germany to see Dr Baumbach at least for a correct diagnosis.Seems you are in desperate situation and it would be too bad if family couldnt help out financially in this kind of serious situation.

[Crystal33]

this report refers to use of traction to reduce cervical intervertebral pain. u would need to google the title to find pdf

"Annular tear of a cervical intervertebral disc
treated with spinal manipulation and
intermittent axial traction: a case report"

[Crystal33]

this is info from a doctor with Phd, on neck injury and rehabilitation.
http://www.cfpsa-borden.ca/cfpsa/Nat...ies%5B1%5D.pdf

[JKDE302]

very sad... I FEEL THE SAME WAY...