7. The pandemic

The beginning of 2020 truly felt hopeful. I felt powerful, sexy, independent, and determined. My stress weight loss was now being maintained by a healthier lifestyle of exercise and balanced diet. I looked good. I was starting to eat and sleep regularly and I was looking forward to my 40th birthday. I was no longer in survival mode and my body starting to down regulate. However, pain had started to come back in the mix. Now if I over did anything, I’d feel it. I’d flare up for days at first, then weeks, then a month. At the start of 2020 I lost my ex-husband’s employer based PPO insurance and now was on a subsidized Affordable Care Plan and most of my specialist providers were now out of network and not covered. I had planned ahead for the loss of this care and saw all my doctors throughout 2019, pushed them to order any and all tests, and got two diagnostic injections into my psuedoarthorsis (LSTV). I now was armed with the confirmation that I did in fact have Bertolotti’s Syndrome. I was not unilaterally connected as previously thought by all physicians, but was bilaterally connected. The connections (LSTV) were not fully fused solid bone but had micro fishers that demonstrated a capillary action when flooded with lidocaine and contrast under fluoroscopy. I had also met a doctor back in 2018 before my world upended that had given me some wonderful free advice. So I was working off his list and doing my best to check off each item, which would, qualify me for resection surgery.

I met Dr. Brian Vernon though a lady, who I will call Utah, I met on Instagram. I had followed some important hashtags and created a Bertolotti’s specific IG account. I messaged anyone on IG I saw that had BS or a resection. Most didn’t respond. Utah did. She told me her story and how life became difficult. That her quality of life was non-existent and her husband had to carry her around and shave her legs. She lived in Northern Utah and her doctor was willing to learn about Bertolotti’s Sydrome, read all the research and case studies, and evaluated her risk to reward benefit of performing a resection surgery. Dr. Vernon at the time was not experienced in resections but knew this surgery had the potential to restore her life. Which it fully did. By the time I met Utah and contacted Dr. Vernon he had already done a few resections. He didn’t understand why I was having difficulty getting a doctor to treat me but left the door open to becoming his patient if I exhausted all local Los Angeles options. He even cited white papers written by doctors I had seen in LA (the one that left me waiting and released me into a dark closed office).

All throughout 2019 I had to jump through hoop after hoop to get my diagnostic injections. I started to see a new fancy Santa Monica pain management specialist and I was ordered to have him do a discogram by the LA NeuroSurgeon. Discogram? Why? To prove that my degenerated disc wasn’t the cause of my continued back pain. Still no one believed I knew my body and pain. The discogram proved the disc was a nonissue because it caused pain and pressure with zero relief. Then next I had to have facet blocks at levels L3-S1, bilaterally. I think there were 6-8 injections here. Again with all my diagnostic injections I wanted to be fully awake and not given any local anesthesia apart from what was injected into the spine. The pain management doctor was so confident that I had pain caused by my facet joints, he went so far as to schedule in advance multi-level rhizotomies. Guess what, zero pain relief. The facet blocks caused me to lose function of my left leg for 12 hours. I almost fell over getting out of my car after the procedure. This doctor, now at a complete loss, reluctantly agreed to do blocks at my LSTV. In the end he made like 10 thousand dollars from all the failed injections, and why he didn’t do it first is beyond me. Because I had technically failed all the previous injections he now had to lie to my insurance and in my medical record to get the insurance to approve. I had the LSTV block on the left side and had back relief for the first time since 2017 for a total of 8 hours. It took away 90% of my pain and left me a familiar feeling of what life used to feel like prior to DDD. After this injection, I returned to the LA Neuro with this data and hoping to schedule a resection. What happened next was surreal. He said he didn’t believe the results and that they would all have to be repeated for him to be believed and ended our visit with “it’s best to let sleeping bears lie”.

With that blatant “fuck you”, I went on a quest to find more help in LA. I sent out a desperate email to all my doctors telling them I was out of money, facing homelessness, and loosing independence and I needed another diagnostic injection, mri, and another surgeon to review my case. My beloved first pain management, South African savant, doctor replied and offered to do this injection for free. He knew I needed care and to cut the red tape of dealing with insurance. This was fall 2019. This time he did a bilateral injection, into both sides of the LSTV, and when he did he lit up. He said “no wonder you feel what you feel. You aren’t fully fused, there are microjoints”. There were web like labyrinths of voids within the bone and with the DDD the bones were now compressed. The pain could be explained as bone on bone and my muscles were in spasm to guard the area. He followed it up with “this is not in your head”. At last someone fully believed in my experience, sadly he was not a surgeon.

Once this second injection confirmed me to be truly a Bertolotti’s Syndrome suffer, I contacted Dr. Vernon. Dr. Vernon was no longer at the office I first reached him but had started his own practice. Like the month I called. I called in the middle of them packing and moving into a space and setting up his and his wife family office of treating both Pediatric and Orthopedic patients. His wife, Yohanna, answered my call and was such a breath of fresh air. She cared. She told me “Brian” was in Ohio, as he was splitting time doing ER surgeries and working out of their office. She gave me their address, email, and said to send over all my records, CDs of images, and anything else I could think of. I was so excited. I immediately burned copies of my many CDs of CTs, Spect scans, MRIS, X-rays, and any clinical notes I had and sent them off next day fedex. She wanted to schedule a phone appointment but couldn’t lock down Brian’s schedule. So for a few months I called and try to make that happen. I left messages, I sent emails, and I got ghosted. Turns out some staffing issues were to blame as well as misplacing my images in the settling in at the office. At the end of 2019 I had given up the idea of fitting in a resection at the end of the year to use my PPO plan. By beginning of 2020 I started to give up on the idea of getting an appointment with Dr. Vernon.

What you don’t see are the three cats in carriers next Lemmy, and that plant is actually attached to my aquarium. Exodus from Santa Ana.

The pandemic. Due to the insecurity of my living arrangement, Jan came and moved all my most valuable items including our cats and myself into our buddy‘s, Goose, house a day before lockdown. At the time we had started to hang, this time romantically, and it was exciting and felt like we were dating. We were cautiously dipping our toes back in to a relationship. The pandemic made us dive back in. We both felt like if we had to spend lockdown 24/7 with another person, we were each other’s person. We had spent nearly a decade living and working feet away from each other and we were alive to tell the tale. Almost overnight, my work dried up. I had become very reliant on industries that were effected the most by this global atrocity. Weddings and events, retail, restaurants, and trade shows. That cushion I had now was less than a month’s worth of rent and I was faced with paying rent or eating, but not both. Now at Goose’s we pooled our resources and ate. I wrote my landlord a message and only paid a fraction of my rent. Luckily legislation had come in that allowed rents to be furloughed. Now it was like we were married again. The stress and everything from the year before prevented us from finalizing our divorce and now I was thinking I didn’t want that but also felt uncertain in our relationship. We both tried to find work. Him odd start ups and paid freelance, me with helping a friend ramp up a major PPE production. I worked 14 days straight and was able to pay back back rent, pay back some money loaned to me by my aunt Patti, and pay for things Jan and I both needed, like food. I was able to use a little of the money to invest in fabric, a serger, and thread and started cranking out fabric masks. I sold them online and used that money to help provide a tiny income. In all I think I personally sewed over 1200 fabric masks and several hundred face shields. I was able to donate some of the PPE to underserved areas. I felt the call the action and it was a great way to cope with the scary parts of covid. It also distracted me from Bertolotti’s Sydrome.

No one was going to see their doctors, physical therapy office were closed, and the United States was in the middle of racial reckoning fanned by the flames of a racist asshole in power. There were real world issues much bigger than my individual struggles however this this was an easier year to handle than 2019. Out of nowhere I got a phone call from Dr. Vernon. He called himself and apologized profusely and admitted to the errors of staff and misplacing my records. He had reviewed all my data and said very confidently that I was a perfect candidate for resection. That I would do very well. I was ecstatic. One road block was insurance. My Oscar plan only covered care in my immediate area, not out of state. I looked into other plans available through Covered CA and all had the same draw back. My only option to have this surgery was to get on an employer based plan. November 1st, 2020 Jan got full time employment and I called Dr. Vernon’s office and gave them my new insurance info. They called back within a week and said “no prior authorization was require”. Could it be this easy? Yep, and during that call I was able to schedule a date of surgery: Jan 14, 2021. Hello Northern Utah, I’ll be there as soon as I close my shop, move all my belongings into storage and prepare my life to heal from surgery. This was the 5th move in a little over 2 years.

8. The resection

6. Starting over.