Pain Management - Is there any?

[idotaketwo]

My fiance was just diagnosed with OPLL and has had his second bout
with some intense pain. He's tried heat, ice, naproxen, tramadol,
Tylenol, oxycodone - you name it, he;s tried it. Nothing eases the
pain. He has to sleep in a recliner and even that's not really
comfortable. it's been about 4 or 5 days now. Neurologist doesn't want
to see him unless he's going tpo consider surgery and suggests he go
to his family doctor. We just moved to a new state and don;t have a
doctor yet. We're going to make an appointment at a local pain
management clinic. Until he gets in there, does anyone have any
suggestions for anything that he can do to make things better? Is
there any exercise, weight loss, medication, therapy, etc? Getting
desperate for relief.

[rockdoc]

Hi Idotaketwo -

I'm sorry to hear about your fiance. Most of us here have been there
or are in the same situation. I was diagnosed about a year and a half
ago and was symptomatic for about six months before that. I don't
think I've had a pain free day since it started. I have a reclining
bed (Tempur-pedic) that helps quite a bit in terms of getting
comfortable but does not really help with pain. Sleep is a luxury at
times (I feel very lucky if I get three hours of continuous sleep).

I had a laminoplasty last year that helped tremendously with my pain,
numbness, and other issues. The surgery resolved almost all of my
numbness, tingling, and walking issues except for my left shoulder and
upper arm - the numbess and weakness I have there is likely
permanent. Still not pain free and have become comfortable with the
idea that I probably never will be again for the rest of my life. I
don't take pain meds nor sleep aids (yet.....) but that idea is
warming to me the longer I live with pain. Another member - Big
George - has quite a bit more experience with OPLL and will likely
offer some perspective for you.

Please keep us posted on your progress. Your post did not indicate
where your are located but you might let people know your location and
see if they know of any good doctors in your area. The group has many
opinions and experiences to offer so ask away - we are a small but
caring group of people.

Cheers.....
BrianS

[ksopll]

Sorry to hear about your fiance. I also have OPLL of the cervical
spine and thoracic spine since 2006. I had surgery in 12/06 on 6
vertebra in my neck. Was just starting to get severe arm pain prior to
surgery. Surgery helped with the upper arm pain, but I hurt in my
shoulders and upper back a lot after the surgery too. I had pretty
severe compression prior to my surgery, so didn't feel like much
choice on whether to not do surgery or not. Unfortuantely I can't help
you with helping your husband alleviate his pain. Sounds like you've
done just about everything one can think of. I would say DONT go to a
Chiropractor. Don't let a Physical therapist push on his spinal
column. Do start taking Vitamin D supplements. I think Vit. D helps
pain a little in for all pain so I take about 3000 iu's a day. I would
also suggest he does very little physical work. This past year I have
had 5 steriod injections of the spine by my Pain Management Dr. Two
epideral steriod injections in my thoracic (middle back) spine, and 3
in my cervical spine. The thoracic injections worked wonders. But not
a miracle injection for my neck. I just had my third one 3 weeks ago.
My arm has started aching all the way down since last summer. Can't
keep the pain away. Seeing my Pain Dr Jan 31 to figure out what else
to try. I also don't take pain meds, beyond tylenol, or naproxen. I
also have been thinking I may need to start taking oral pain meds soon
to see if any thing can help. I hope the pain dr will be able to help
him. Take care.

[Nancy McInally]

Bummer,
I continue to struggle with OPLL cervical and upper thoracic. I have pain in my neck, shoulders,upper back. I also have tingling in my left hand and neuropathy of my left foot. I had a surgery in 07 to shave down a spur at c-7 but it didn't help. The OS that I saw last spring doesn't think I am ready for the surgery yet. He said because of my congenital fusion and severe Osteophytes my surgery would be quite extensive and would take long time to heal from and I may not get any reduction in pain. I guess if I can't walk or have bladder or bowel problems I will have the surgery. I currently go to pain management and have tried injections, blocks and many different meds. I do take pain meds and a muscle relaxer to make it so I can sleep. The meds are RX and monitored by my PCP monthly. In the spring I am going to try another Spinal Cord Stimulator trial. If It helps I am to have a Lamy to attach the Paddle leads to my Thoracic spine. I will do this in June as I have the summer off from work. A SCS is only suggested if you have tried many other tx. first. I have tried PT 3X for 4 weeks and I think a few sessions of PT to teach excercises, to keep limber and maintain strength might help. They are not a cure but I think stretching out everyday has helped me be able to get around. If the pain continues I find pain management is a good route to try. A new bed? Sleeping with lots of pillows for support? I use microwave gel heat pads on my neck and upper back. If you decide to have surgery make sure and get a second opinion. It seems many doctors don't really know what to do to help us. Welcome to our little group.
Nancy

[idotaketwo]

Thanks everyone for your detailed responses. I clicked reply to author
just now and submitted a more detailed reply. It's really for
all...thanks.