9 months post-surgery update

Bertolotti Syndrome
Jun 21
9 min read

Hi Bertolotti friends!

I know many of you have been asking me for an update, I initially wanted to post a 6 months post-surgery update, but things have been quite hectic so here is my 9 months update! :)

I don’t even know where to start as a lot has happened since my last blog post. I have been doing well overall but recently ended up at the ER… More about this later, let me first go back to where my last post was around 3 months post-surgery.

I felt pretty good around 4-months after surgery, PT was very helpful and I slowly went back to work and society. This was a huge adjustment since I was out for quite some time. I forgot how much I love my job. It took some time to adjust as prior to surgery I was working hard to get things done and everything was flowing so well that I was in a flow state and hitting my goals. At first it was frustrating to not be on that level but over time it became easier again. First time traveling for work was a big test for me as I didn’t know what my body could handle and my limits. I thought I was doing pretty well until I came back home and crashed...

The illustration makes more sense now when things are off balance

I didn’t have (and still don’t have) the usual lower back pain around my LSTV, that’s a huge improvement in my quality of life, but unfortunately other collateral damage causes left hip and groin pain, as well as left knee pain and right upper shoulder pain. My PT said that my left hip is tilted, which might cause the other pains in my knee and shoulder.

I also still have migraines, but some months less than others, I’m hoping everything is still rebalancing and that it will reduce at some point. Some months have been really tough with on average 15 migraine attacks/month, often with a migraine hangover the next day, which leaves me with literally 0 days without it. And next to this still dealing with my hip/groin/knee/shoulder pain... If you ask me how I get through these days, I don't know actually, I feel like my body is in survival mode and my will to push through kicks in and I'll somehow get through it. Luckily, the Nurtec for migraines often helps to stop the pain but it's still not the same as not having an attack at all.

Regardless of the other pains, I am so grateful for not having the usual lower back pain around my LSTV, and everything else feels more manageable because I’ve been through worse… The fact that our condition is not visible from the outside makes it also harder to "show" when we are in pain. No one really knows how it feels than those that are going through something similar, the chronic physical pain and deep emotional and mental pain is so ingrained in us since we've been living with it for so long that it becomes hard to explain to those who are not going through the same. When people ask me how I’m doing I never go into details of how I really feel, at times it feels futile to explain.

Creating this Bertolotti Syndrome platform and having the monthly meetings with other Bertolotti peers feels very healing and I thank all of you for showing up. It was scary to launch this but I’m so happy that I did. I’m doing my best to help those that are living with Bertolotti Syndrome as I understand how devastating, hopeless, debilitating this condition can be and I want to lessen the hurt in a way and help us all live through this and leave the world in a better place than we found it.

I went off track a bit, but going back to the 6 months mark. I had my check-up with Dr. Jenkins and also needed to do a scan to see if the hardware was situated correctly. I was super anxious to go for this scan as I was afraid for bad news, doing a scan felt like things were becoming real and I just could not bear any bad news. But at some point I had to do it cause the appointment with Dr. Jenkins was coming up.

So with all my courage I drove to the hospital, ending up sitting in my car for a long time before I went in… And luckily everything looks good :) Dr. Jenkins said that the hardware is well seated and the fusion is well developing.

Regarding my migraines, I also have done cervical MRIs before and Dr. Jenkins reviewed it. Other docs didn’t catch this before, but Dr. Jenkins noticed a small C3/4 disc bulge and congenital cervical stenosis. At the time, I did not want any treatments for a while, I decided to continue with PT to also address my cervical area pains. For the longest time, my upper shoulder was bothering me a lot and my muscles would lock up /spasm when it was bad. Muscle relaxers helped but it made me very sleepy so I rather not wanted to take them.

I further did cupping and dry needling for my back, it mostly helped for my upper back and not so much hip/lower back. Cupping and dry needling is not pleasant to do and can be painful at times, but my muscles were so tight that I couldn't get rid of the pain no matter what I tried (exercises, stretches, massage, heatpad).

My stitches were healing nicely though, I still am very conscious about the scars :( But in a way it grounds me and reminds me of the past battles and hard times and that I got through it.

Awake for 1 min, twas a very good night rest :)

My sleep quality has improved a lot after I recovered, I feel really rested when I wake up. I can’t even remember when the last time was before surgery that I actually feel so rested when waking up. Even when I sleep less than my usual 7-8 hours of sleep, I still feel rested now without the usual lower back pain and the pain doesn’t wake me up in the night anymore. I’m so grateful for this, I don’t know what will happen in the future and this all might be taken away but for now I enjoy and stand still with having these little things that might seem normal to others but huge for me.

Having said that, I recently woke up and turned my neck, just a normal turn but I felt a sharp pain along my cervical spine and couldn’t move for some time. I eventually got up and stretched, hoping it’d go away and that it was just a muscle sprain (although I knew something was wrong as I have had muscle sprains before that did not feel like this…). I waited it out for a day hoping the pain would be less, but it got worse in the night and I also got dizzy, nauseous and had tingling feeling down my arms.

Next morning I saw a physician (totally useless, referring me to PT which I’m already doing, being medically gaslighted but in a way I’ve been through it with my lower back so that helped to stand my ground and advocate for myself). Since I was still in a lot of pain I went to urgent care, they heard me out and based on my symptoms and history of spine related issues they sent me to ER and put a neck brace on. At the ER they checked everything and did a scan, which showed cervical nerve compression (radiculopathy, along with C3/4 facet and disc damage, and uncovertebral hypertrophy) that might cause the pain. I'm doing much better after some rest, so hopefully I'll be up and running again soon.

Silver lining in this is that my right upper shoulder pain is gone, perhaps it was all related and leading up to this... I’ll be following up with cervical/thoracic MRI and still have to do the MRI hip scan too, so to be continued…

After they pumped me with meds, record t sleep

I’m not gonna lie, it really sucks. It feels discouraging as I was hoping to recover from the lower back pain and everything else will work out. But the reality is that many of us have collateral damage and other conditions to deal with. It sucks that this happened so unexpectedly, so basically I'd not know when it flares up again?

Having gone through the lower back pain and ups and downs, I have learned a lot, to push through, even when all odds are against me, to somehow have faith that this too shall pass and this too I will get through. It sucks bigtime, but there are some things that I can't control and others I can, so it's best to focus on the latter instead of living in fear.

I do want to express my deepest gratitude to the Bertolotti friends I’ve made along the way since the launch of this platform. Over time, we have spent quite some time together during the monthly meetings that take 2-3 hours, and we text back and forth outside this. I never really had this support in the past when I was going through hard times with my lower back pain, so it feels different now when talking to those who understand what you’re going through, so thank you all - you know who you are ;)

We cried, we laughed, we shared raw stories during the first Bertolotti Syndrome Virtual meeting 🥹 It was initially scheduled for 1 hour but… we spent 3 hours together 🥹♥️

I’ve never been in a (virtual) room with so many people who are going through the same condition, it felt healing and inspiring and my heart is so full after the call ♥️🙏

We had people joined all across US, Canada and even London, UK! You all made this possible and I’m grateful for the moments we shared.

This was our first BSy Buddy Match, by now we have 15 BSy Buddy Matches :) (follow it on my IG!)

I also love getting messages from the community that they’re happy with their Buddy Matches, and when we hear that one person is not doing well we check in on them. That makes my heart full and that’s exactly what I was trying to create: a support group where we can uplift, support and motivate each other to get through this.

It also makes me happy to get to know some of the Bertolotti friends better and follow their journey. Some already went through surgery, I get so excited when I hear someone going into surgery for this Bertolotti Syndrome as I know how much it means to get to this point and to finally get the surgery as a solution to a better quality of life with less pain. I can't wait to one day where we will all be "on the other side" and finally start living with less pain.

This was the first post to support our Bertolotti friend going through surgery (follow it on my IG!)

Although I know that reality is different as many of us still have collateral damage and pain in other areas. However, for me, living without this chronic lower back pain around my LSTV area is huge and such a big difference - I have zero regrets doing this surgery.

The other hip/groin/knee/shoulder and migraine pain all feels more "manageable" relatively seen to the previous lower back pain so I'm very grateful for this. I don't know what will happen down the road, and how long I will actually be pain free from the lower back and/or other things pop up, but I'm trying to enjoy every moment and day as I know how I felt prior to surgery...

Since the launch of the platform many exciting things have happened. Dr. Schulte from Germany found me through the Instagram page. He created a virtual Bertolotti Syndrome meeting with top Bertolotti knowledgeable surgeons.

Afterwards, Dr. Fogelson subscribed to this Bertolotti Syndrome platform, I was telling the group that THE Fogelson connected with me lol, and he is open to join one of our meetings. This made me excited and I was shooting Dr. Jenkins a message to ask if he'd join too... And he said yes! I then knocked on Dr. Haines's Instagram door and got a yes too! Funny how things can go, moral of the story: never give up! So Dr. Haines and Dr. Jenkins will join our June meeting next week, this is huge for the Bertolotti Syndrome community and I'm so excited for this! I further have a lot of other exciting ideas and things coming up, so stay tuned!

Thank you also for your feedback on my new shirt: “Forever Screwed”. I also have one with my surgery date at the front, and we have another member who got a shirt with “Cut it out!” since she had a resection haha I love it, we gotta keep the humor in things and see the silver lining in everything to get through this, no matter how difficult or discouraging it seems, we will get through this together and you are not alone in this!

Check out the link to see how you can order your customized embroidered shirt and raise awareness on Bertolotti Syndrome too!

https://www.instagram.com/reel/DIHvMkiOwUd/?utm_source=ig_web_button_share_sheet&igsh=MTRjcDdlaHpxOHc0NQ==

My next update will most likely be around my Spineversary in September! :)

For now, please hang in there my friends, even when it all seems lost.. it's not, you've got more in you than you think. Living with Bertolotti Syndrome is not easy but for you to get up every day, after each flare-up, after each set-back, that means that you're strong, stronger than you think and that somehow, one way or another, you'll get through this. So never give up.

And remember: it's ok to not be ok, it's not fair, it's so deeply painful on physical, emotional and mental levels I know, but together we will get through another day, that turns into weeks, months and years.

Let's leave the world in a better place than we found it!

Photo dump of my chocolate lab to cheer up your day!