My Bertolotti Journey Over The Last 20 Years
- Bertolotti Syndrome
- Dec 16, 2024
- 9 min read
Updated: Dec 21, 2024
2004: The One Where I Had No Clue What Was Happening - “I thought everyone has back pain and it’s normal to not be able to walk for a week?”
In 2004, I injured my back at the gym and from that point onwards I always thought I had a weak lower back because of that injury. I just went on with my daily life with that chronic back pain lingering in the background, thinking that time would heal. Little that I knew, this lower back pain sometimes became so bad that it shifted my hip leading to mild scoliosis and I couldn’t walk for days because of the excruciating pain. This happened in the beginning at least twice a year.
Back then, I was living in the Netherlands where doctors were more likely to downplay the situation and the advice I got was: “Take some paracetamol and come back a week later”. It’s not surprising that a week later the shift in my hip disappeared from the outside, hence it felt useless to go back and I was tired of not being taken serious. I continued coping with the pain through many physical therapy sessions and massages but I didn’t feel much progress. Towards the end of my PhD, I was having a lot of flare-ups back to back and often ended up bedridden due to the pain and couldn’t walk for a week but pushed through by writing my thesis in bed...
2019: The One Where I Finally Got a Diagnosis - but what does lumbarization or pseudoarthrosis mean?
After this period, I moved to the States where I still experienced chronic back pain, which was “manageable” and I had no big flare-ups for two full years. Until in 2019, I was sick for a longer time and had a bad cough, this weakened my back and I sometimes had to kneel down to be able to cough as my back would otherwise hurt too much. One day, I was bending over to get my laundry basket and had to cough… I felt something slipping away in my back and the pain was immense, I dropped on the floor and didn’t know if I could even walk. My best friend brought me to ER for 7 hrs, pain meds and injections didn’t help and eventually the muscle relaxer knocked me out for a bit. It was here, where they did a CT scan and referred me to a spine doctor as they suspected that my lower back pain could be caused by “S1 lumbarization”, MRI scans later on verified this finding.
I recovered physically after this, but it was emotionally and mentally very tough. On one hand, I was happy that it has a name and that I’m not crazy all these years, on the other hand, there’s no real cure/treatment that I knew of around this time. The spine doctor back then was laying out the options: “pain management, steroid injections, nerve ablation, but there is no treatment to cure it”. I felt like time was ticking as this condition causes collateral degenerative damage on other levels...
After this period, I have had flare-ups occurring whenever I was bending over and shifting a light-weighted chair, or pulling up and lifting my bike on a slope, sneezing became dangerous whenever I didn’t brace my core or kneeled down. It was a very depressing period ever since the results from the CT scan. I continued searching on the web but back then there wasn’t much on the internet about this, except for a Facebook group (Bertolotti’s Syndrome Education Group (USA)). I joined this group and finally started to understand that it’s a very rare condition but I’m not alone in this. This escalated a lot of things and acceptance and peace with the diagnosis.
When I joined the FB group in 2020, there were only two main surgeons who were Bertolotti knowledgeable and have performed surgeries on these patients: Dr. Jenkins and Dr. Steinmetz. I started to have consultations with Dr. Jenkins and he explained that this condition is congenital from birth and that the pain can be more prevalent after an injury. He further did more research and classified the different types of Bertolotti depending on the gap and size of the “extra joint”. As a scientist, I leaned more towards his practice as I valued his collection of data points and publications of several scientific research articles. I also resonated with his explanation of the “extra joint” being there since birth and perhaps for a reason to support the spine.
Surgery as last resort would be a fusion or resection depending on the type of Bertolotti one has. In my case, I was diagnosed as a Type 2C on the left (where my main pain source is) with L6, meaning a fusion would provide stabilization and alleviate the pain. However, some people choose a resection for several other reasons, e.g. a different type of Bertolotti where resection shows a positive result, it’s not a “permanent” solution, the surgeon is in-network and it’s being covered by insurance, more convenient location etc. I, however, wasn’t in favor of removing the “extra joint”, there was also a fear of the bone growing back as happened with some people. In addition, I had an extra lumbar vertebrae that makes it more rare, this L6 instead of L5 causes more instability and pain and removing it didn’t seem a wise choice in my opinion. On the other hand, a fusion is a permanent fix and one would have the hardware in them for a lifetime. For me, I felt more comfortable in Dr. Jenkins’s fusion technique despite his office being out of network meaning the surgery is all out of pocket.
After gaining more information, I went for diagnostic injections to confirm that the extra bone was causing the lower back pain. And indeed, the injections seem to help albeit temporarily for a few hours. Despite the brief relief, it felt amazing to not feel pain. I honestly forgot how it feels like to be in no pain and it meant a lot to not experience the constant pain in the background and to live like a “normal” human being even if for a few hours. The pain returned after this but in a different way, it was more “manageable” and I was ok living with it around this time.
Things were looking a bit brighter since the pain was more manageable and in 2022, I made a post in the FB group asking who would like to meet up for coffee, to share our stories in person and to have a little local support group. I found three other Bertolotti friends and we had dinner together. I can’t emphasize enough how much this meant for me, to be able to share our stories and to understand and learn from each other. We have been checking in with each other from time to time in a separate group chat and went for dinner each year since then.
2022: The One Where The Elevator Accident Changed My Life - for the worse…
I was doing pretty good overall with the Bertolotti condition living with me, until one day I got into a terrible elevator accident… I was going up to my apartment on the 18th floor but before reaching that the elevator suddenly dropped down a couple of floors, it got stuck and I couldn't get out, the screen also didn't display on which floor I was and the call didn't get dispatched nor did the alarm go off, needless to say I was traumatized and had severe panic attacks. Later in the evening my back pain flared up and I experienced heavy migraine attacks ever since (10-12 events per month).
On top of that, I was mistreated by the apartment complex management and was traumatized to use the elevator so l had to walk 18 floors at least 3 times a day to let my dog out, imagine that with a BS flare-up... I moved out soon after this and chose to live near the beach side which was truly amazing and very peaceful, so in a way l'm grateful for this change.
“Every adversity brings with it the seed of an equivalent advantage” - Napoleon Hill
The period after this, my back pain got worse and I did intensive chiropractic and physical therapy but it didn't really help or just very temporarily. I chose to go for steroid injections again, same doc, same procedure and it was supposed to be two shots but while he was performing the procedure, it seemed to take a bit longer than the last time and even though I had local anesthesia the pain was really high when the needle was deep in the bone while he was wiggling around to get to the spot. At some point he said to his tech 'it doesn't go', and I got really nervous while biting through the pain. He then asked if it was hurting a lot and I said yes and he said that it was almost done. Turns out he did one injection, so between the lateral and bottom side. He said that the effect would be the same, but I did not experience any relief at all and decided to never do the procedure again (note that it's not recommended to do too many injections, one can only have a limited amount per year).
2024: The One Where I Finally Got My Fusion Surgery Done!
After this period, my back pain got worse and I experienced other pain related to my hip, groin and upper back. The search for a fix was taking its toll and nothing seemed to help. I was at the end of the road and decided to go for a fusion surgery with Dr. Jenkins. Of course deciding this, there were other scary thoughts crossing my mind such as: a fusion is fixed, what if the screws come loose over time, what if a nerve gets damaged during surgery, what if it worsens the situation and causes other complications, a fusion also can lead to other fusions on the levels above so is it wise to do a fusion? How about the pain where several websites indicate fusion back surgery as the number 1 most painful surgery… All this crossed my mind and a bunch of other doubts at first, but on the other hand there will be even more accumulated collateral damage on the levels above if untreated and left with this pain. I wouldn’t decide on surgery if I felt the situation was getting any better so it felt as a last (desperate) resort to a life without pain, or even with less pain I would already be so grateful. I think this process deserves a separate post as there is a lot of information to share about the pre- and post-surgery side of things (see my other blog post about the surgery).
Fast forward, I’m in the recovery process which has been a tough period but the temporary pain is worth all the pain we experienced in the years prior to this. I’m grateful for the chance to go for a surgery and, finally after so many years, truly feel hopeful for a life without pain.
>> Next update will be in 2025: my 6-months post-surgery check where an X-ray will show how the fusion is going.
For now, I’d like to emphasize to those who are suffering from this rare disorder: You are not alone in this. Everyone experiences pain differently, but I want you to know that I hear you and I understand to some extent how it feels to go through this for years. The mental and emotional pain, the inner turmoil, to not be believed, to explain your story over and over again, to emphasize that it’s not the same as the “normal” back pain, just to explain how much chronic pain we are experiencing day in and out and that we are not exaggerating, to half of the time hear “ooh I have back pain too”, to be medically gaslighted, to feel vulnerable and weak and not understood, the strength that is needed to get through the days and to continue working and to deal with society, the little things that we are not able to do, to wake up and notice the pain instantly and to drag yourself out of bed, to not be able to turn around in bed in the night and to fall asleep as it’s too painful but waking up the next day with the pain. It is not easy and I know it might seem so so dark at times… but you’re not alone in this. This platform is by no means to provide any medical advice, but through this platform I want to help you find your solution and provide support to make a difference while you’re battling with Bertolotti.
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