Not sure what to do - Pain Management Message Board

JeanneO · 05-21-2006, 01:05 AM

You all here on the boards were so helpful to me last year when I was having a problem with my Ortho for my shoulder pain that I thought I would come back for more

Might be a little long....I had ACDF on C-5-6 in Feb 2005, the radiating pain down my arm and the pain when I rotated my neck went away, but I was left with pain in my shoulder blades and up into my neck. BTW, my Neuro never had me go to PT post surgery. Well in the months following surgery my muscle tightness, burning and pain increased so I found a wonderful Spine Surgeon closer to my home and he did X-rays, MRI's, Bone Scan, and found nothing..suggested that I go back to the Neuro because one of my screws was a little off and he didn't know if that was where it was placed originally or if it had moved. Anyway, went back to the Neuro with my MRI's and X-rays in hand and he said everything was fine, I was completely fused and everything was where it should be. He sent me to have nerve and muscle testing...everything was fine there. Said he could do no more for me and suggested I see a Physiatrist.

That's where I am now....I've been doing PT, MT and have been seeing a pain psychiatrist for 7 weeks now. I've seen minor improvement...meaning that I have a bit more stamina now and don't go into a major pain flair everytime I do something such as vacuum or go out for an evening, or even just a bit of housework. I even planted in my garden last week and thought for sure that I would pay dearly but to my surprise I didn't (paid just a little, but I could deal with that). The psychiatrist has helped me immensly in making some life changes that are definately better for my health and mental well being...leaving my current job being the biggest.

But the fact is that I'm still in pain everyday. About a 7 or so on the scale, I do have times that it goes down as low as 3 or 4 but those are few and far between. I feel that my pain could be managed better.

I'm new to all of this so I thought that I was in Pain Management with my current regiment of healthcare providers, but when I went for a follow up last week with my physiatrist and told him where I was, he suggested accupuncture or facet injections, I opted for accupuncture first, he agreed, he likes to go the conservative routes first. I told him that the pain meds (Hydro 10/325 1-1/2 tablets 4 times per day) weren't always enough and that some days I go over. He gave me a little look and said that the goal is to wean me off the pain meds, but at this point I can't imagine being off them...I feel like I'm 90 years old in the mornings (I'm only 47

) he said that's ok but try to even it out. He gave me script for Gabapentin for the burning nerve type pain and Rozarem for sleep. The Rozarem had the opposite effect so I only took it for one night, but am still on a low dose of the Gabapentin. The verdict is still out on that because I got hives but it could be something else causing that. Anyway. I called him to tell him about the hives and the Rozarem and asked if I could be switched to something stronger or perhaps a LA med and he said that he doesn't prescribe LA meds becasue he's not a Pain Management specialist (much to my surprise). He did do a blood test to check my liver levels bacause of all the tylenol and I've also been on Mobic 15mgs since January, the bloodwork came back normal.

I'm working really hard on my PT and excersises, strengthening my core and my posture, but it hurts. Everytime I'm touched in my neck and upper back I'm in terrible pain for at least one day until it mellows out to my normal every day pain.

So after that long story, my question really is do I ask again for something stronger or do I ask for a referral to PM specialist or just try to tough this out until my next appointment which isn't until the end of June.

Thanks so much and I have to tell you all that I've learned so much from you all on this board. JeanneO

ARANGER · 05-21-2006, 09:01 AM

Hey Jeanne,

Sorry to hear about the pain that you're in. In addition to all the lumbar fusions I've had, I also had a cervical fusion and know the pain and post-op pain that I was in. So I have some understanding of what you're going through.

Just to clarify you are seeing a Physiatrist and not a Psychiatrist right? You mentioned both in your post. And they are both completey different. If indeed its a physiatrist that you are seeing, then it suprises me a little that he says he's not a PM specialist. The actual definition for a physiatrist is a doctor that specializes in physical medicine and rehabilitation. To me, that seems to qualify as a PM specialist, but I guess everyone is different. In my area, two of the PM clinics here have physiatrists on staff as docs that see patients primarly.

It is true that a physiatrist will usually always opt for other modalities of treatment as part of there specialty is rehabilitation. And that is a good thing I think for any doc. A doc that just prescribes meds, is only masking the pain and not attempting to fix the problem. However, some problems just can't be fixed, but atleast tried to fix.

If he is saying that he is not a PM doc, then I would probably start looking for someone else. If he is prescribing meds and you've been taking them more than an acute regime, like everyday for months, then it only makes sense to move to an LA med. Most good PM's see this as it only helps you in the long run. But it sounds like this doc is trying to get you off the meds and is probably not going to prescribe LA meds.

As far as the meds, you are at the top for hydro. They don't make anything stronger than 10mg hydro. You will and probably already have built a tolerance to them. So either you will need to go to a stonger med like Oxycodone or add in a LA med and maybe reduce the hydro just for BT pain. There are many LA meds that have a very smooth release and never feel them kick in or fall off (no spikes). Kadain (Morphine) is one of those drugs with a great release system in my opinion.

Anyway, if it were me, I would find a "PM Specialist" to treat me. I think continuing the PT and other modalities are great if they're working for you. And of course it would be great if you could get better and get off the meds. I think thats the goal of all of us that take meds daily. Unfortunantely, for many of us, that will never be an option.

Anyway, thats my opinion. Good luck

JeanneO · 05-21-2006, 10:03 AM

Hi Arranger...thanks for the response

Yes, I am seeing both a physiatrist and a psychiatrist along with massage therapy and physical therapy. At this point my medical benefits have been exhausted for the PT and the MT but I feel like they are helping slowly but it's better than nothing so I'm willing to keep going and pay for it myself. Many of my muscles in my neck and upper back (thoracic I think) have turned ligament like, is what the PT said, so it's really tough to get them to soften and just be muscles.

I did think I was in PM, I signed an Opiate agreement. I do think that I've developed a tolerance to the pain meds. I have been on them off and on pretty much since about November of 2005. I started out with hydro 5/500 prior to and after my surgery and was off them pretty much within month or so after surgery for a couple of months, just taking tylenol or tylenol with codeine and OTC muscle relaxers.

I thought that my pain may be related to my shoulder issues so I had surgery for that in Feb of this year and was on Percoset for the post surgery pain due to the fact that I'd built up a tolerance to the lower dose of Hydro, but I only stayed on that for 3 or 4 weeks and then went to the Hydro 10/325.

I guess that the hope here is that I will respond to these other forms of therapy but in the meantime I would like my pain managed adequately.

I hate to be a pain (pun intended) with my physiatrist, but maybe the best thing is to call him or maybe even make an appointment sooner than my follow up to talk to him. I'm pretty sure I need to talk to him before I seek help elsewhere, right? Wouldn't that be DR shopping?

I feel like I'm being treated far better than I have before this, with the Neuro and my GP and almost feel like I don't want to rock the boat too much. The truth is that I'm really angry with my Neuro, no PT after the neck surgery...all he said was....have a good life

Maybe angry at myself too for not realizing that I would need PT.

Thanks again

Kissa · 05-21-2006, 10:32 AM

I have the same pain issues you do as well. I had an ACDF 2 years ago, or maybe it was 3, I'm so forgetful these days. While I was doing good with only the burning and achiness post op. I was in an accident a year later the pain became severe and I have a broken screw as a result. Needless to say I can totally understand how you feel.

Like you when I started having severe pain problems (even before the accident) I went back to my surgeon who told me everything was in place, all looks good, bit of OA going on there or DDD and a broken screw as a result of an accident (this was the second visit to him post op), none of which would cause the pain I am having. His diagnosis was muscle and nerve damage. Seems most nuero's will never admit when there's a problem that is their fault. If it's fused then life is good and they act like we should feel like a million bucks.

I have had 1 steriodal injection or ESI in the neck, made it worse, never again. I currently see a PM for my neck (and several other pain issues/problems) and he prescribes pain medications and Lidoderm patches in addition to Baclofen to stop the spasming and burning.

My suggestion to you would to see out a real Pain Management specialist but definately continue with the physical therapy.

CTmom · 05-21-2006, 12:07 PM

Hi!

I have a lot of the same issues you do - seems a lot of us are in the same boat. I had ACDF two years ago. Was also told by my surgeon everything looks great - have a good life. I have been left with intermittent (thank God) but severe upper back and neck pain as well. I have come to discover it is primarily muscular. Thanks to a great primary care doctor I've been helped with physical therapy and primarily muscle relaxants although I still need occasional narcotics when the pain is bad. I have found that since my pain is cyclical, if I can catch it early when it's just starting to build and take the Motrin/muscle relaxants early, I can keep the pain from getting out of control.

Recently I was diagnosed with a facial neuralgia and put on Lyrica (for nerve pain). Surprisingly, I've found it helps with some of the back and neck pain - although it doesn't stop the muscle spasms.

Don't give up. After two years I can say I am pain-free at times and hope to get this under control eventually. I really hope you are feeling better soon.