Back and Neck Pain Exchange

Hi lpolak,

You need to google pain management specialists and find yourself a pain doctor now!!! He/She can offer so many more options than what you are being offered now.

I had a L4/5/S1 fusion almost 3 yrs ago and my pain is worse than ever. Now my hips and pelvis have joined in and I cannot even move when I am laying down without screaming out in pain. Not much better at standing, walking, sitting.

My heart goes out to you. I had major lumbar surgery in 2002 It made everything worse. I went to Pain management. They gave me cortisone injections, procedures, PT, a psycologist to talk about the pain and offers of a spinal cord stimulator or a pain pump. Nothing helped so another Spine Surgeon gave me a $2375.00 tortoise shell back brace that I was to wear 24/7.

Nothing any medical people did helped. Have you thought of getting disability?

Geradine,

I was not sure if your question was directed to me or lpolak. Anyway, I retired from the federal government on a disability pension in 2002. I am getting 45% of what my base pay was, and it is about the same most people on SSA get.

I have had two spinal stimulators. First one I ran almost 24/7. It was the only way I could move. I was also taking care of my serverely ill husband.

I have heard good things about the pump. I have been told it is the last option for us chronic pain spineys.

My arthritis has spread to my hips and pelvis. I see a wheelchair waiting for me.

Huggles, Annie

Oops!! I had a second stimulator implanted. It was a different brand. I could never get it programmed right. Too much area to cover, and had it removed 6 months later. Then in 2008 I had my lumbar fusion, L4/5 - S1. Surgeon botched it. Pain is worse than ever.

I found a good PM doc...at least my first visit was great. I had a myelogram/CTscan done this past Friday...go back to the spine surgeon tomorrow for the results.

I am just sooo tired of the runaround I am getting from the surgeon. He is good at the surgery part,but the rest of the recovery stuff sucks!! It seems to me that he has a set protocol for his patients after the sugery and if you go outside of that protocol, whatever the patient says doen't register with him. His solution for the increased pain I had AFTER the surgery was more pain pills-not a different strength-just more of what I was on(5mg vicodin). I finally went to my PCP and SHE adjusted my pain meds. And SHE was the one who sent me to pain management. She also was the one to send me for a CT scan after my surgery...it was after THAT that the spine surgeon got on board and sent me for the EMG...

I know that there are others who are far worse off than I am-and I truly am grateful for what mobility I do have. I am just tired of this stupid merry-go-round the surgeon has me on. I have to finish the ride with him so my ins. will continue to pay...if they start denying me, I am SUNK!!

As for disability-I have been told that I have a "marketable" skill and for SSI, they look at the total income in the house-not what I used to make. My hubby-God love his heart-does make a decent living and I wouldn't qualify for SSI. What other kind of disability is out there?
Thanks for the Vent!!
Peace,
Lisa

SSI is different than SSD, SSI is based on ones income, but what you would be applying for is SSD based on your inability to work esp. after this amount of time and even though I understand that you are a nurse I also had to leave the work force early and apply myself and was worried after being a Critical Care nurse for twenty five years that they would feel that way but due to advanced DDD, osteoarthritis,unspecified type of arthritis was not able to continue anymore because of chronic pain. Social Security is what you have been paying on all these years and yours to obtain based on your ciicumstances when your not able to no longer work, I live in one of the highest disability states (TN) but was able to get mine in 4 months based on Medical records..so apply and good luck, I'm glad you have a PM now...Retired and disabled at the age of 48!

P.S. sorry but I did forget to mention how extremely important Physical Therapy is because I didn't see it mentioned in your post. Your PCP should be able to send you to a modified back class to learn stretching and strenghtening exercises and that will greatly help with your mobility issues.

Today my surgeon said he didn't want to start me in PT yet..."let the nerve settle down first" I have started to work with 1lb weights sitting in a chair...working my upper body seems to hurt-but in a good way.

He also told me to "push pass the pain-push the limits of what I can do" And to "let the pain build a little-don't take a pain pill at the first sign of pain" Now as a nurse I am taught NOT to ignore the pain...don't let it build up because then the pain med will have to work harder to be effective and it will take longer for it to work...thus being in pain linger than needed.

My PM doc is just the opposite-she says that I DON"T have to live with the pain-she is willing to go to whatever needs to be done to ease the pain. She IS talking about PT-next visit(in May) she wants to set up a schedule.

I hate that your in that sticky situation with trying to appease him or anybody else as far as that goes with your problems/situation but your absolutely right as far as what you said about what we are taught with the administration and taking of pain meds that it should be done early on and that it will work better in the long run! On a personal note when I was in PT, was taught a home exercise program (modified back class) because of my severe osteoathropathies would schedule my appt. times so I would premedicate myself 30 minutes prior to going and it helped a lot. I am so glad that your PM doc is and seems to be on board with what really needs to be taking place... Good luck to you

We who have severe chronic pain know how difficult it is to live with that kind of pain.

The doctor from Sister Kenney who has many physical therapists working with him and my pain doctor both told me to tame the pain by taking pain meds on time.

When I have tried to stretch out the time with the pain meds, I tend to have flare ups that take days to calm down to a lower level. Most doctors only understand acute pain.

I too have terrible issues injured 2 yrs ago. trying not to have surgery. Have tried so much PT nerve blocks etc. My PCP begged me to try Lyrica. I didn't want to and coultn't figure out how it could help me. I don't have fibromyalgia. Tried it and I feel superhuman now no side effects not other drugs. try it.

I too had fusion l3-l5 and need more at 3 C levels - For God's sake go to a pain management Doctor... fusion is rarely an end all to the pain (saying that from my experience and those Iknow persobnally) There are many new devices and therapies that might help but a PCP isn't going to go there.... it is a pitty that medicine has gotten so specialized.... I too have pain daily ranging from 5 - 10 but I keep going I take 7.5 mfg percocette every 6 hours and a load of Gabapentin... along with Elavil (an anti depresant which also helps) Pain and depression go hand and hand.... from my experience and only me... Therapy can also be involved in pain management to give you new tools for managing the pain along with the right meds... This has been working for me... I work every day and I won't tell you I am pain free but I get by and I never stop looking for new methods of pain management and if a Doctor stalls at meds only I fire them.... keep looking and don't give up... life will never be the same but it won't be all bad either.... Good luck and hang in there but mostly take responsibilty for your own treatment.... be proactive

My Previous response was for lpolak sorry it got posted to another reply...

I had a double lumbar fusion in June of 2006 and went through the same thing! It was like reading my own story. Fortunately, I am a retired veteran and I am treated at the VA hospital in Detroit. I met with the pain management doctor there and he put me on Oxycontin, 80mg, 2 tablets every 6 hours. I now have my life back. I don't feel drugged and my pain has lowered to 7 and sometimes a 6, but after being at a 10 for a few years, it is a God send! The hard part is that doctors have to seperate the real patients from the drug seekers. I see people go so far to fake their illnesses that they show up in wheelchairs or anything else to fool the doctors into writing a script. Those people make it harder and harder for us to get the medication we need to get back to living and it is just plain wrong! When I found out that the pills I take each day are going for 50 to 60 dollars a piece on the street, I just about fell over! It is the greed of these scumbags that keep doctors from prescribing them to people who actually have a valid need for them. I took every test, went through some of the most painful procedures out there to prove that I was actually suffering to the point that I needed these medications. The only advice I can give to you is to ask your doctor what you have to do to prove that you need something stronger before all of those other drugs destroy your liver and cause a host of other complications and see what he or she has to say to you. I get 224 tablets every 28 days on my pain management contract and I would NEVER even think of selling even one. I NEED this medication and I would never violate the trust between myself and my doctor and you need to make that same commitment and live by it! You need to take a stand and don't take no for an answer! God Bless you and hang in there. I wish you the best!!!