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| Stenosis of the Spine | Illustration of Spinal Stenosis | Spine Doctor in Vail, Colorado (Photo credit: neckandback) |
Treating the cause is more important to me now than ever going back to straight medication management. There is more out there for you than a life taking pills and not really feeling that good anyway! Personal knowledge of others in chronic pain are many, the stories are so varied, some have either sunk into the 'poor me' category, or/and have gone the pill route big time, with non-compliance in taking too many, to selling them on the side. Hang in there if your choice is to decrease or stop altogether. I received wonderful emails from others in pain who are also either decreasing (and feeling better) or have stopped medication. Another reason why writing here has great benefit in support from others that are experiencing the same thing. Thank you to all who shared your story with me and gave me such encouragement! So that chapter is now over, and I move on to the next.
What is next to be written? What is to come and what process am I to go through next?
The level of damage in my spine is such that my options are to FIX the anatomy, or to COVER the pain from that damage. I have been doing the latter. It obviously was not the long-term answer for me.
For now that I have decreased to this point in my meds, the pain has returned, with a vengeance. This pain and the sensation is totally different than anything I've felt before. This is a 'Mechanical' pain.
What is happening, is now that I have lowered meds to a bare minimum, I feel vertebrae moving, I hear them 'popping' which I believe is a slipping, I am able to really sense what the cause of many things are. My instability feeling-common in spinal stenosis, FBSS and other issues, has gotten worse. (My neck is also popping/grinding).
I fell in January onto my spine, onto concrete, I am sure I broke ribs, and cracked vertebrae, or further injured my spine. My pain doc immediately ordered an Xray to rule out fracture of either. Two weeks later I hurt my knee (which I recently was informed has multiple injuries--totally different than originally told to me) so the direct fall on my back went to the back burner. I must remember this is very serious, and I need to start paying more attention to the root of my pain. What I did to it when I hit the concrete must be addressed.
For the past 9 years, I have felt as if I need a rod down my Thoracic spine, to feel stable again. I began searching online for Thoracic surgery, and I found not only a surgery exactly like mine in 2001 (Costotransversectomy with fusion is not a common surgery) but also discovered Minimally Invasive Spinal Surgery. At the University of San Diego, a team of dedicated spine surgeons strive to improve the disadvantages of open spinal surgery, taking full advantage of all the new equipment that helps the surgeons view the patient from many angles, still ending with simple band-aids over the entry points, even though there may be screws, rods, and other hardware inside.
The cutting of the muscles necessary to obtain the proper views in spine surgery, so as to isolate nerves, spinal cord, etc., results in a long recovery, post-op pain, and continuing pain. The muscles that 'run along' the spine, commonly called the Paraspinal muscles, are actually a group of muscles that do not run in a parallel line at all. I am speaking of the superficial muscles of the back.
In the method being used now, small incisions are made to insert the camera, and others to insert the instruments needed. I would need multiple levels worked on, and in the non-invasive method, this may be something I could recover from without the extreme post-op pain and long recovery and rehabilitation, simply due to muscles being cut.
It says a lot for me to even be talking about another surgery. And this is not 'just' one or two things being fixed. The choices I have had for many years have been few, regarding the available methods to treat my pain. I have said since the Costo in '01 that I would not have another surgery, and I concentrated on proper and thorough pain management. Eleven years later, I am ready to try something else.
Thanks for the support and telling me your own stories.
Gentle Hugs....
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This song inspires me by the energy it holds, it puts me in a great mood, and I have adored Freddy & Queen since they were played over here in the US. Kind of an ironic tie I have to them, 'Bohemian Rhapsody' was playing on the radio the night of the rollover accident. Because I was blindfolded, my hearing was heightened, and that song is forever engraved in my mind as the soundtrack to that slow-motion night.
*Only Freddie can play the piano just by standing near it. ;)
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And this one....an acoustic 12 string played beautifully by Brian May and a tenor such as Freddie? Amazing.
I find that the masking of pain while it helps me continue my daily activities also does a disconnect to the reality of the pain. Hoping you get the help you need. My niece has had a "flexible" back done with artificial disks and somekind of butterfly apparatus. Not sure if you have thought about implanted spinal stimulators (or you may already have them I have not been keeping up) but my peripheral stimulator used for my severe headache pain actually works pretty well. I was able to decrease my overall levels of pain drastically by this measure, and I understand can be done as part of a spinal procedure.
ReplyDeleteWinny,
ReplyDeleteI have tried a Spinal Cord Stimulator, with kind of hilarious results. (At least for me when things have gone this far I tend to laugh when it goes wrong, after the tears have fallen) The SCS innervated my abdomen and right thigh, it felt awesome in the sense that if it had been placed right, or was even able to be placed correctly, it seems that it would have really helped.
Looking into all the 'new' stuff out there for surgeries! Thank you Winny for this info and I am so glad that your Stim has helped you!
My son has a spinal cord stimulator and the difference is not as great as he'd like but at least now he can walk and sit in a chair and stand for longer periods of time. His wife is especially happy that at least now he can walk the dog so she can sleep a bit later in the mornings.
ReplyDeleteI need several joint replacements. And I refuse to consider it. I'm still relying on pain meds, no more than I was using 2-3 years or more ago. And some days / weeks, I don't need pain meds at all. I have other issues that make joint replacement surgeries problematic and risky for various reasons. Unless I have an injury that 100% necessitates a replacement of one of those joints, it's not happening.
That said - knowing the pain very well, I do understand where you're coming from on this. You'll make the right decision for you.
BTW I'm Prof Sherlock -- had to delete that blog and start over with a new incognito blog.
Hi Shauna, I only just found your blog today, and i had a couple of questions re: Pain Med reduction.
ReplyDeleteAre you reducing the meds due to the horrific side effects, or to reduce your tolerance and "start over" ? I have thought about doing the same with the 120mg of oxycontin im on atm, im really getting sick of it and the side effects.
Hello Shauna, I was looking at chronic pain blogs and found your blog. I read with interest your pursuit of reducing opioid pain medications. My name is Dr. Murray J. McAllister, and am a clinical psychologist, specializing in chronic pain management.
ReplyDeleteI think that reducing and/or tapering opioid medications is quite admirable. It is commonly in the long-term interest of patients because they develop tolerance to opioid medications. Tolerance occurs when medications lose their effectiveness over time. Tolerance to opioid medications can make it unfeasible for patients to remain on opioids for the rest of their lives – assuming a normal lifespan.
Reducing and/or tapering opioid pain medications is a difficult thing to do. While difficult, it is possible. Most often, though, patients have to learn how to do it. In order to succeed, patients often have to work closely with their healthcare providers to learn how to self-manage pain. Self-management is a series of lifestyle changes and ways of coping that reduces pain to a tolerable level. It can then serve as a substitute for the opioid medications. It’s also important to follow the reduction schedule that your prescribing provider develops with you.
It frustrates me that your healthcare providers are not super supportive of your goal. Perhaps you could talk to them about a referral to a chronic pain rehabilitation program? If you live in a large metro area, there is likely a chronic pain rehabilitation program near you.
Chronic pain rehabilitation programs are a traditional form of pain management that focuses on teaching patients how to self-manage chronic pain and improve functioning without the use of opioid pain medications. For patients who have a goal of reducing and/or tapering from opioid pain medications, chronic pain rehabilitation programs can be very effective.
Shauna, I admire you and am in awe at what you have done to lower your doses of meds. I don't know how you do it.
ReplyDeletemo