After my nerve ablation at the end of September we knew we were working with the right area. But since the pain had come back after 2 days we weren’t quite sure what the next steps would be. I decided that I wanted to start working with a new doctor. The one I had been working with was really helpful, but he didn’t preform medial branch blocks or ablations so he would have to send an order over to Utah Valley Hospital then whatever Interventional Radiologist was on call that day would preform the procedure. So I had a different doctor each time I went in, and didn’t have a chance to meet with or talk with them before the procedures. This created a lot of confusion and it seemed like we were always making last minute phone calls between my doctor and the radiolositst trying to clarify my unique situation.
It turns out that I never did have the nerves blocked or ablated (killed) on the vertebra that actually had the injury because of miscommunication. So I found Dr. Faber (thanks to a friend) at Spinal Interventions and had a really great consultation with him where we went over my imaging, speculated what had gone wrong with my ablation and made a plan.
He speculated that when I had my ablation done in September that the anesthetic they injected spread out and numbed the area that the pain is actually coming from. But that they didn’t kill the right nerves, if they killed any nerves at all. From the look of the ablation imaging he thought it was possible that they missed killing the nerves on L4 & L5 all together (because of the needle placement). We also found that they inserted so much anesthetic that it was almost impossible to know where the pain was coming from because it could have spread pretty far. He speculated that the source of the pain is likely around the vertebra that is broken (sounds obvious) and that the anesthetic spread down to that area. That would explain the 2 days of relief, followed by the return of my pain after the anesthetic wore off.
He also helped clarify what my spinal abnormalities are. I have what is called a transitional sacrum; where the top of my sacrum (S1) is only partially connected to my sacrum and looks/acts like a Lumbar vertebrae instead. So they call my S1 an L6 because it is more like a lumbar vertebrae than a sacral vertebrae. You can see in the first picture how my S1 or L6 is only connected to my sacrum on the right side of the picture (which is actually the left side – MRI flips the sides). My breaks, and my spina bifida occulta are both located at the L6. The doctor said I have an over arch in that section, that caused extra pressure & inevitably added to the cause of my injury.
Sacrum showing transitional S1/L6:
Side view showing over arch & lumbar-like S1 vertebrae:
Vertical view of S1/L6 showing breaks on both sides that I did not have previous to 2010 child birth:
So first we did a trial run with medial branch blocks. He blocked the nerves (with 1/4 the amount of anesthetic that Utah Valley used) at level S2, then L6/orS1. I could feel quite a bit a relief but we decided to also block the nerves at L5 and after we did, I had complete pain relief for about 2 hours before it slowly came back.
That is exactly what we were looking for. Dr Faber was very careful to pinpoint each nerve involved, block one at a time while communicating with me, and only use enough anesthetic to block that one section so we don’t end up with more confusion from the anesthetic spreading to other areas.
So today I had my first round of nerve ablations to kill the nerves we pin-pointed a couple weeks ago. They have to split it into 2 procedures because the doctor said it is too hard on your back to have that many ablations done in one day. So today I had the nerves ablated on the left side at L4/L5, L5/L6, & L6/S2. Everything went as planned but since they don’t inject very much anesthetic I am in a lot of pain following the procedure. We won’t know anything definitively until a few weeks after I have the right side done. The right side is scheduled for next Thursday.
Wow, I can’t believe it has been so long since I have written an update about my chronic pain. It has been 9 months since my big surgery last August.
My pain has improved some since the surgery so I am convinced that the nodule/calcification was a part of my problem, but for whatever reason I am definitely not pain free. So this thing is not over yet.
The first 2 months after the surgery were brutally painful with aggravated pain/healing, as well as withdrawals from weaning off of narcotics. I was determined to be done with those meds because I know being on narcotics is not something I want to do long term. Dilaudid helps me so much with the pain, but is so addictive that I never want to have to take it again.
The months after that were confusing. I had a couple of months were I would feel significantly better for 2 weeks or so and then have a very painful 1 1/2 to 2 weeks. It seemed to be related to my menstrual cycle. I would crash right around ovulation time every month which was new since surgery. The good times were so good that I would often get my hopes up that I was actually going to make a full recovery. But the good times were always followed by really painful times. Then the good times started to fade and get shorter and shorter. After the ovulation crash happened 5 months in a row I decided to try to eliminate ovulation with birth control. After trying 2 different kinds I found one that seemed to help (progesterone only/mini pill). I haven’t had any more of those really good times since January, but I have a more tolerable pain level each day without the big down swings.
I also started taking a nerve pain medication (cymbalta) around the same time. I actually took it about 3 years ago but it didn’t seem to help me. I decided I wanted to try it again, and I’m so glad I did because this time it has helped me. That is another indication that something changed with this surgery. The combination of birth control and cymbalta has made my pain a little more manageable.
The medicine helps me a lot when I am taking it easy. I always had my lowest levels of pain while laying down followed by sitting, but it was still pretty horrible. I couldn’t sit for long periods of time and the only way to really get my pain to actually get a bit better was to lay down. Now on this medication I feel a lot better while I sit down. I can sit and feel pretty great for long periods of time. I also can feel little to no pain at all while I lay down! Those 2 things have improved my quality of life significantly. I no longer need to have Tom drag a bed downstairs in the evenings so I can hang out with my family. Now I can sit on the couch or out in a lawn chair or even on a beach cruiser bike and feel significantly better! I am sleeping better because the pain isn’t waking me up through the night and I feel so normal when I lay down that it just makes me feel happy.
The medicine does help me slightly while I’m standing and walking but not much. I still can’t do a lot of things around the house or go grocery shopping or anything like that. But since I feel so much better sitting I can hurry and walk a short distance and sit down and still be okay. So I haven’t had to bring my wheelchair to church in a while because I can recover once I sit down. I usually wait till the hallways clear out a bit before making a mad dash to class… (lol) I love not needing to bring my chair.
The medicine also seems to help me handle a bit more intense exercise. I’ve been able to run a bit further and a bit faster and I feel really good right afterwards. I’ve also been doing some yoga and swimming laps. Being in the water still takes my pain almost, if not all the way, down to a zero, so swimming is definitely a wonderful exercise for me. I get to workout and have my pain recover and go down at the same time. Exercising more has also helped me emotionally, so this has been a big improvement too.
I decided at the beginning of this year that I was going to take a year off from really looking for answers. I’m not researching, I’m not looking for doctors or going to new appointments, and I am definitely not having any procedures or surgeries. I just want to feel as good as I can for this entire year and think about my chronic pain as little as possible. This part has been wonderful. It is exactly what I needed right now and I know I was inspired/prompted to make this decision. I’m also excited that this will be the first year in 7 years that we haven’t reached our $6,500 out of pocket yearly maximum (2010-2015) which is a bonus :)
I am so incredibly grateful for all the many prayers, cards, flowers, calls, texts, etc. with love and support over this last 9 months. I am sorry I haven’t been better about letting people know what is going on, but I just wasn’t ready to deal with nailing down the details of “how I’m doing” yet. I am loving not letting my pain take a front seat in my life this year. So this year you’ll see me sitting outside for hours with my kids, smiling more and just really remembering that this life is so beautiful. There is so much to be grateful for even when things are hard.
Domo’s Christmas party was at the Grand America Hotel in Salt Lake City this year and we had a great night. I had a particularly good day for me that day and I was feeling so happy to just not be miserable all night! It was the perfect night to feel better than normal. We sat with some friends for dinner and the food was really good. They actually served buffalo stake which we have never eaten before, and it was delicious.
This picture is kind of strange and has weird lighting. It almost makes us look like we are getting white hair or something. But it’s the only one I have of us from dinner, so it’ll have to do.
The whole set up was really pretty and I just kept thinking about how grateful I am that Tom gets to work at Domo.
This little sweetie is growing up so fast and I just can’t believe it.
It was so fun to take the girls to see Santa this year. Lilah was so excited but actually got a little nervous when it actually came time to sitting on his lap. She decided that she would feel okay if she could hold my hand. Daisy was just a little confused and curious about Santa but didn’t cry at all. Over all it was a fun experience and I think it got Lilah more excited for Christmas morning.
After seeing Santa we headed into a little toy store next door and let the girls walk around and look at all the fun things. Lilah has a picture sitting in this mini cart just like this when she was about Daisy’s age.