I have been putting off this posting because I wanted to make sure that my health update is for real and not just another up time on the roller coaster ride of recovery. I have finally healed! Praise God for his love, provision, mercy, comfort and reassurance through his overwhelming presence through this 2.5 year ordeal. This post is very long but will encourage post-op Tarlov Cyst patients and I believe they will find this story very helpful. I'm just going to address my pain and medication and will update you on my current status in the next post.
My two year surgery anniversary was this past January 13th, 2018. My nerve pain had gotten so much better about 15 months out but I began to have a lot of back pain. So, I continued the medications, including the opioids.
Coming off of 7 medications, including narcotic opioids.
Around February, I had to visit a colorectal surgeon for some complications. He looked me straight in the eye and said the surgery I need is very painful and he was very hesitant to perform it because of the amount of opioids I was on. He said there would be nothing they could do to help my pain. I was on 120 morphine equivalent doses, which is the Tennessee State maximum allowed for non-cancer patients. That same week, I saw my psychiatrist and told him how tired I was all of the time and I had no energy. He said, "I hate to tell you this, but that's the pain medication." That same week, I also spoke to one of my good friends who is a physician's assistant. (I believe that's the highest provider next to a doctor.) We discussed all of the crap ton of medications that I was on and she told me the side effects of each. She said, "No wonder you are so tired and feel like crap!" It was a wake up call.
I came up with a little rhyme for what I discovered about pain meds. Opioids mess with the pain receptors in your brain. You become more sensitive to your pain. (I am a self-declared goof ball.) From the second I put my feet on the ground each morning my heals hurt, my knees hurt, my hips hurt, my butt and back hurt. The pain was debilitating. I had been so much better at 15 months post-op on the meds and they helped me function and have a normal life again. (Refer to previous post on Universal Studios from dawn til dusk on my feet and riding roller coasters).
I took all of those conversations within the same week as a divine message that it was time to get off of the meds. I HATED HATED HATED being physically dependent on something that could make me go into withdrawal if something like a trip came up and I couldn't fill my prescriptions early. I hated being followed on the state registry where they flag you for some circumstances beyond your control (like when Dr. Feigenbaum prescribed me medication from out of state, or when you fill your prescription at a different pharmacy because yours is out or doesn't carry what your pain management provider prescribes). I HATED the thought that if I were in a car wreck and had to go to the ER, there wouldn't be anything they could do to help pain. I HATED the stigma. I HATED the thought of being treated like a drug addict. (Please refer to post about difference between physical dependency and addiction). All of the restrictions and regulations nearly make you a nervous wreck. I wasn't just physically dependent on the pain medication, but also 4 other non-narcotics.
There was a progression to my healing. First, functioning without pain while on the medications. Second, I would have backlashes of shorter time or no backlash after being active. Third, I could tell the nerve pain was gone because I didn't feel it after my morphine wore off. I will say that around a year after surgery, I had to undergo an operation for a cystocele and a rectocele. I feel like that surgery and recovery threw me backwards on the TC healing timeline. I was feeling pretty well before that. But winter weather also didn't help. But, by the end of January 2018 (Surgery-Jan 13th, 2016), I weaned myself off of 60 daily mg of the morphine, which made up half of my daily opioids. I immediately started feeling better and the whole-body pain went away. That was another sign it was time for the narcotics to go. I was highly motivated and determined to get off of all of the meds. In February, my Uncle passed away and I needed to reschedule my appointment because we had to go out of town. When I called pain management, they said they couldn't see me until a month later! Ummm... oh crap! I told them I would go into withdrawal and what in the heck was I supposed to do!?!? It ended up being a blessing in disguise because they prescribed me Clonidine to take and cause my body to not have withdrawal symptoms. The end result was what I wanted anyway! I'll share more about that experience further down.
I started to gradually wean myself off of the 1800 mg (600mg 3x a day) of Gabapentin (Neurontin). That's a very high dose. It sucked I had to look up the physician information on the schedule for weaning off, but that's what I did. (Please don't do that. I would definitely recommend that anyone be under a doctor's care because it is dangerous. At the very least, call your pharmacist.) I also started weaning off of other medications: Topamax (Topiramate) 50mg a day, Three 10mg Flexerils (cyclobenzaprime) a day, 75mg of Lyrica, and a high dose of 500 mg prescription Aleve every 12 hours. 3 flexerils is A LOT! I remembered that years ago, I used to take one pill for migraines and I'd feel like crap until the next day. Three!! I was also on a medication to help urinary retention that I started around surgery time for cystocele/rectocele. I was also still on my psychiatric medications and sleep medication I'd taken for years. That included 120 mg of Cymbalta (also used to treat nerve pain) and 1mg of xanax twice a day. I have to admit the xanax helped take the edge off of the pain. I have no idea how I was functioning but I didn't feel the slightest bit drunk. I did however have trouble with short term memory. I would forget conversations. I still can't remember a lot of things that happened while I was on all of that. I also had a hard time recalling simple words. Words like "door," "shirt," "Gatorade." I'd point and get frustrated and say, "Ugh! You know, that thing...over there." Apparently, I didn't realize it, but I was speaking slower than I normally do. After I was off of everything, they told me I looked different, sounded different and they could tell I was back!
The week I started the Clonidine was also the week my husband had to go out of town for work. My Mom came over to stay and help with the kids. That was another God thing because little did I know the .3 mg of Clonidine 3x a day was going to knock me out and make me so weak I could barely walk to the bathroom. When my husband got back, he had to give me a bath because I couldn't stand to take a shower. Thank God AGAIN for his provision because my Mom was able to take care of me. I can see how God had the perfect timing planned out before I even knew it. Aside from that, I had no withdrawal symptoms, which is FAN-FREAKIN-TASTIC compared to actual withdrawal. After those 5 days, I was off of my (Opana) oxymorphone (the long acting opioid you can't split in half or it could literally kill you) and completely off of the opioids. By the time my appointment came around I was off of the Gabapentin, Topamax, Aleve, Lyrica and Flexeril. That's 7 medications!! I had been on a total of 12 medications!
My nurse rejoiced with me and was so happy for me. So were my pharmacists and friends. I was overjoyed and so happy that I was healed from my Tarlov Cyst Surgery. The journey took forever and felt like it would never end. Tiny baby steps and milestones took forever. But gradually, it got better.
I did have slight nausea and headaches for about 3 or 4 weeks after that and had to have another week of Clonidine. (But this time I asked for a lower dose and went with .1) My pharmacist said that he would expect me to have some of that coming off of as many medications as I was on. It wasn't too bad. Just annoying.
That's the story of coming off the meds. Next up, Where I'm at now.
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