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.