I had my first appointment with a PM doctor today. I REALLY liked him - I felt like he listened to my story and really took the time to understand what my pain was like, where it was coming from, and what my understanding of my treatment options are.
He initially recommended trying different meds to try to eliminate some of the side effects I'm currently experiencing (sweating, memory issues, constipation) from the Lyrica, Fentnayl patch, Vicoden, Percocet, and Cyclobenzine. I told him that I'm simply sick of trying this new medicine or that new medicine because I'd been doing it for 12 years now and it's simply not gotten me anywhere. I've just come off 7 different injections (ESI, facets, SI) and two different hospital stays that were both over three days inpatient in the last two months alone. My pain is starting to affect my heart, with me having a tachycardic (rapid) heart rate of up to 190 beats/minute. I'm 23 years old and at the end of my rope with all this nonsense. He heard me out (including a few tears I must admit!) and then told me he saw where I am with this and understood that I need a bigger pain intervention that what has been done.
He recommended that we start looking into a pain pump. He wants to take three weeks to do more research with my disease (Schuermann's disease) because he has no experience with it (it's a really rare disease!). I was a little bummed after the appointment because after testing all my reflexes he noticed a significant reduction of reflex in my right leg, which wasn't there three months ago. He said this obvious involvement of my spinal nerves being pressed now is concerning, but since no dr. is willing to do surgery on me (my case is too 'complicated' for any doctor's I've been seen by to surgically intervene on - plus, since my disease is degenerative they are reluctant to do surgery since chances are it's just going to progress anyway..) So after he does the three weeks of research, I'm going to go back and have the trial done, and hopefully if that works have the device implanted! I'm so hopeful that this helps to control my pain because it would mean 1/100th of the medicine that I'm currently having to take. Amazing. That also means 1/100th of the side effects. Can I get a hallelujah?!
Sorry for the excedingly long post. I'm just so happy to finally have something to be hopeful for. It's been such a long road of having procedure after procedure done with no relief, and having doctor's turn me away as a hopeless case. I feel like I have something to look forward to and work toward now. I have a renewed sense of strength and feel like this is something that mentally I am ready to take on again. Now that I have a doctor that is willing to fight with me I think that even though I will never be pain free, I now have the chance to look forward to live not consumed by my disease.
Thanks for letting me share!!!!