Just a quick update. I am STILL 100% symptom free! My surgery was a success. I still do not have any of my pre-op pain. The back and forth recovery finally stopped in January 2018. Almost 2 years to the day. I can't believe it's been four years. After two years of going through a deceptive recovery, I was very skeptical and scared that it was just on an abnormally long upswing. I expected the pain would come back at any moment with a vengeance. That is the nature of TC recovery for everyone I've ever talked to, spoken to, interacted and observed in groups with over 2,000 people with in the past five years. I'm not going to drop numbers, but it's well over any numbers you'll ever find in a case study about TC's. I had a hard time believing it. I wasn't sure. I noticed if I didn't take pain medication, the pain didn't return raging. I also noticed my body was getting overly sensitive to unrelated/new things I knew weren't wrong. It's called opioid-induced hyperalgesia and it's different than a tolerance. Mind you, I had been taking a very high dose of opioids for 2.5 years. As soon as I woke up in the morning and my feet hit the floor, the soles of my feet hurt, my knees, my hips, my back...all over. I knew I did not have any disorder that would cause the soles of my feet to hurt. These were not anything like my TC symptoms. I also noticed that if I didn't take the pain medication and as I weaned off of the opioids, that pain went away. So, if you've been on them for awhile and begin to have new pain, I know it will be difficult, but talk with your doctor about cutting down and taking a break. After a few months, I realized...it's gone. It's not coming back.
I regret taking the Gabapentin because of the weight gain. I don't think it even helped. I also regret taking Topamax and a high dose of Lyrica. That's when I became so spaced out it was like I had Alzheimers. Repeating things. Not remembering anything, conversations I had, going places, meeting people, trouble recalling basic words, slow thinking. It was embarrassing. There is a pretty significant gap in my memory from when I started those medications towards the end. For me, I don't think any of the medications for nerve pain helped me enough to make much of a difference. Maybe a little, but not enough to be worth losing my memory. Many people who have never had severe disabling chronic pain do not understand that you suffer so badly you are desperate and willing (within some boundaries) to do anything to make it go away. If a doctor told me to try something, I would. I hoped it would help. I wish I was in my right mind and could have had the insight to say no or stop them. As soon as I stopped the Gabapentin, I lost 60 pounds without trying. When I came off of all of those medications, I had so much more energy and people said the fast-talking lively Natalie was back. I was doing great, super active, kicking butt and taking names, cleaning out my house after two years of clutter that built up. Then...in October 2018, my back went nuts. Totally unrelated. But back to chronic pain.
I do have a word of caution. I actually did have symptoms return for 2 weeks. But, I know what caused it. I went to PT for an upper lumbar muscle spasm that wouldn't (still won't) stop. My L3/L4 disc is collapsing. I thought at the time I'd pulled a muscle. I asked the therapist if he knew what Tarlov Cysts were. He said "uh-huh." I explained my TC surgery and that there was nothing but scar tissue protecting that area. I specifically told him ..."Do NOT touch my sacrum." I said it more than once. He started to do a manipulation there and I said, "STOP! Don't touch my sacrum!" I was nice about it, but I think he just thought I was paranoid. I bet you already know where this story is going, don't you? At one of my last visits, without warning, he did a physical manipulation over my sacral area. By physical manipulation, I mean he put both hands over my sacrum and did a pumping motion to check for mobility. Not only did it send me into panic mode, it felt weird. I said, "STOP. I don't like the way that feels." It felt like everything between my sacrum and my front pubic bone was completely hollow. He didn't touch it again but I started to feel pressure over my surgical site like it was going to explode. Then gradually, I started to have a slow progression (about 2 weeks) of symptoms again. I called Dr. F's office and asked if this was normal given I had a full recovery a year earlier. They said yes. They do hear that sometimes from patients who have fully recovered and have an accident, a slip in the bathtub, a fall, a MANUAL MANIPULATION. She told me to go to my doctor, get a week of steroids and a steroid injection and do as little activity as possible for two weeks. I asked, "by 'as little activity as possible' do you mean stay in bed?" She said YES. I went to my doctor. I got a Toradol injection as well as a steroid. My doctor prescribed me two WEEKS of Prednisone and prescription strength Aleve. I prefer Ibuprofen so I took that as she directed. 800 mg every 8 hours. I laid in bed for two weeks, rested and it went away. Talk about a SCARE! So, don't let anybody touch it! Definitely not pump it with both hands.
Since January 2018, I have had TC symptom pain in my legs maybe 3-4 times for a few hours and nowhere NEAR as severe as pre-op or recovery. I noticed it was on rainy days. Rainy days made my TC pain worse during recovery. I hear that a lot from other cysters as well.
That's my lengthy update for now!
I regret taking the Gabapentin because of the weight gain. I don't think it even helped. I also regret taking Topamax and a high dose of Lyrica. That's when I became so spaced out it was like I had Alzheimers. Repeating things. Not remembering anything, conversations I had, going places, meeting people, trouble recalling basic words, slow thinking. It was embarrassing. There is a pretty significant gap in my memory from when I started those medications towards the end. For me, I don't think any of the medications for nerve pain helped me enough to make much of a difference. Maybe a little, but not enough to be worth losing my memory. Many people who have never had severe disabling chronic pain do not understand that you suffer so badly you are desperate and willing (within some boundaries) to do anything to make it go away. If a doctor told me to try something, I would. I hoped it would help. I wish I was in my right mind and could have had the insight to say no or stop them. As soon as I stopped the Gabapentin, I lost 60 pounds without trying. When I came off of all of those medications, I had so much more energy and people said the fast-talking lively Natalie was back. I was doing great, super active, kicking butt and taking names, cleaning out my house after two years of clutter that built up. Then...in October 2018, my back went nuts. Totally unrelated. But back to chronic pain.
I do have a word of caution. I actually did have symptoms return for 2 weeks. But, I know what caused it. I went to PT for an upper lumbar muscle spasm that wouldn't (still won't) stop. My L3/L4 disc is collapsing. I thought at the time I'd pulled a muscle. I asked the therapist if he knew what Tarlov Cysts were. He said "uh-huh." I explained my TC surgery and that there was nothing but scar tissue protecting that area. I specifically told him ..."Do NOT touch my sacrum." I said it more than once. He started to do a manipulation there and I said, "STOP! Don't touch my sacrum!" I was nice about it, but I think he just thought I was paranoid. I bet you already know where this story is going, don't you? At one of my last visits, without warning, he did a physical manipulation over my sacral area. By physical manipulation, I mean he put both hands over my sacrum and did a pumping motion to check for mobility. Not only did it send me into panic mode, it felt weird. I said, "STOP. I don't like the way that feels." It felt like everything between my sacrum and my front pubic bone was completely hollow. He didn't touch it again but I started to feel pressure over my surgical site like it was going to explode. Then gradually, I started to have a slow progression (about 2 weeks) of symptoms again. I called Dr. F's office and asked if this was normal given I had a full recovery a year earlier. They said yes. They do hear that sometimes from patients who have fully recovered and have an accident, a slip in the bathtub, a fall, a MANUAL MANIPULATION. She told me to go to my doctor, get a week of steroids and a steroid injection and do as little activity as possible for two weeks. I asked, "by 'as little activity as possible' do you mean stay in bed?" She said YES. I went to my doctor. I got a Toradol injection as well as a steroid. My doctor prescribed me two WEEKS of Prednisone and prescription strength Aleve. I prefer Ibuprofen so I took that as she directed. 800 mg every 8 hours. I laid in bed for two weeks, rested and it went away. Talk about a SCARE! So, don't let anybody touch it! Definitely not pump it with both hands.
Since January 2018, I have had TC symptom pain in my legs maybe 3-4 times for a few hours and nowhere NEAR as severe as pre-op or recovery. I noticed it was on rainy days. Rainy days made my TC pain worse during recovery. I hear that a lot from other cysters as well.
That's my lengthy update for now!
Thank you for your blog. I am just starting my journey with TC. - Susan
ReplyDeleteI am so sorry you have thos disease. But happy that you found something helpful here.
ReplyDeleteExtremely happy for your freedom from TC! God Bless!!
ReplyDelete