My Road To Bertolotti Surgery

My fusion surgery with Dr. Jenkins was set for Sept 12th, 2024.

Prior to this, there were a lot of different things to arrange and it felt really overwhelming at times as I didn’t know if things would work out in time, if I was doing things correctly, if I forgot important things and I didn’t know what to expect exactly. On top of that, the anxiety for the surgery was creeping up as time was ticking…

I had to book my flight tickets, accommodation, flew in my family from the Netherlands, get the back brace measured and ordered, authorization approval from insurance, pre-surgery tests, order useful tools for pre- and post-surgery, just to name a few.

I hope by means of this post, that I can provide you some insights in my journey to the surgery and things I prepared, or hindsight wish I knew or did, that will hopefully help you in your journey in its own way.

3 days before surgery 

First-time in person meeting with Dr. Jenkins in NYC, which was amazing. I came across his name back in 2020 and have followed his research ever since. I have had a couple of virtual consultations over the years but to finally meet him in person is like finally meeting one of your heroes. It’s truly amazing what he has done for other Bertolotti patients and there has been so many positive stories from the Facebook group about him and his work. I finally felt more comfortable and confident about my surgery coming up after meeting him. My mom also met him and she also felt more at ease after this. Before this period, she was doubtful about surgery and no matter how many times I reassured her that I did my research and that this is what I need to do to not be in pain anymore, she regularly brought the topic up which made me doubt at times too…

3D model of the spine with screws and rods for the fusion

On this day, I also went to do my back brace fitting in NYC. Interestingly, this clinic is a branch and I already went to a location in Boston as it was easier for me to do the fitting beforehand in Massachusetts. I do have to admit that I was a bit aloof about this process until it was 4 weeks before my surgery and I suddenly realized that I needed to act and get the brace done. I called several locations around Boston and all I heard were different stories: “The brace will not be insured since it’s not medically necessary before the surgery, we have to submit the claim first before your insurance decide whether or not it will be covered, it will take two weeks to get the brace done”. This all added even more stress to the process and I could only blame myself for not starting to look into this earlier. However, I know I was hesitant to act because of my fear towards the surgery and I kept postponing things I needed to do.

Instead of dwelling on, I reached out to Dr. Jenkins’s office and the surgical coordinator has been really helpful and stepped in to talk to the back brace clinic. The clinic first asked me to sign a waiver (advanced beneficiary notice of non-coverage) and they would submit the claim to insurance but it’s not a guarantee that it will be covered. I was willing to pay the costs beforehand since the whole out of pocket surgery costs was already so high that I thought “What’s another couple of hundreds”. But the surgical coordinator mentioned that she never heard of patients signing such paperwork for the brace fitting. That made me retract my decision.

I also called my insurance and they said that it will be covered, however, when calling the clinic after they talked to the surgical coordinator they said: “I’ve talked to my upper management and it will NOT be covered”. This has been really confusing but the surgical coordinator came with a solution and mentioned that I could get the brace covered in NYC, they will be able to do the measurements and will get it ready the next day. This sounded too good to be true and I was anxious that it wouldn’t be ready in time so close to the surgery date, to be exact: 2 days before surgery…

My thoughts were: “What if it didn’t work out in time, I need to bring the brace to the surgery, when is the next available surgery date, I already brought in my family and they can only stay for a limited time, and I already booked the expensive hotel in NYC…”. I also was too late in this process and it was already the week before I would fly to NYC and I didn’t have time to go to NYC to do the fitting in time. It was very stressful to decide on these things and I needed to make a decision… so I went for a brace fitting at the clinic in NYC which all worked out and it was covered by my insurance (total amount would’ve been against $3000 otherwise!).

Things I’ve learned or wished I’ve done

Start earlier, even though it’s scary to act because things get more real, trust the process and make moves in time. Hindsight, I could’ve get the brace done earlier and in NYC so that it didn’t add more stress right before the surgery as you will need to bring the brace to the surgery. Depending on your state, things might be different for insurance and it is good to look for solutions and walk the path of those before you and who had positive experiences. Be careful with speaking to insurance companies as they will only state what’s black and white on paper and in their policy. Reach out to your surgeon’s office, ask as many questions as needed to get to your answers.

I also procrastinated on setting an appointment with my physician and the hospital to do the pre-surgery clearance and get the tests done. It was one month before the surgery and I finally decided to pick up the phone and set an appointment, however, my physician wasn’t available until the week before I would have my surgery. Writing this already gives me anxiety… I did do the bloodwork in the hospital in the meantime as it was a walk-in visit, but some levels were lower than recommended and I had to take supplements. It wasn’t something too big of a concern, but I didn’t know back then what was “allowed” in order to be cleared for surgery. Clearance is upon discretion of the physician and your surgeon. So lesson learned, schedule your physician's appointment in time one month before your surgery, get that visit and if something is off, you will need to get on meds/supplements, or worst case you will know that surgery will need to be postponed and to cancel/reschedule other things such as accommodation and flights etc in time. This will reduce your stress significantly..!

2 days before surgery  

Brace fitting done!

The brace was ready to be picked up and if it didn’t fit properly they would have another day to fix it, so I finally felt more at ease around this time that things were working out in time and that I could have my surgery as planned on Thursday. But somewhere I was also feeling very anxious as things were getting real.

I further started preparing things such as getting enough food etc with my mom. Mom’s food, especially for recovery, is the best :) I also got stuff that I know I would eat in case I was nauseous or didn’t have any appetite, for me it was for example chicken soup or crackers.

Things I’ve learned or wished I’ve done

I chose a hotel with a kitchen, because I wanted my mom to cook her nutritious food :) I also made sure breakfast was included with the hotel so that at least that part was covered and I didn’t have to worry much about my mom. She is an older woman from the Netherlands and doesn’t speak English. I wouldn’t want her to get lost in the busy streets of NYC so made sure that food was replenished sufficiently. I also hooked up Netflix on the hotel tv with shows that she likes so she would be entertained.

1 day before surgery 

On this day, I was able to pick up my meds locally in NYC. It was overwhelming and a lot of pills that I had to take per day after surgery (±15 days/day). I knew I wouldn’t be able to keep up, my mom would also not be able to note down which ones I took at a certain hour as it was so many and in different forms. So I thought that there must be an app of some kind that helps people documenting meds and surely I found several on the app store and downloaded “MyTherapy:Medication Reminder” on the App store. It’s a free app and you log your pills and indicate at what times or how often per day you have to take them. It will remind you and give a notification on your device. This was of tremendous help as I was out of it during the initial recovery period and this was pivotal to make sure I kept up and didn’t forget (sometimes I forgot to log it, but you can ask the person helping you to double-check).

This was also the day before the surgery and I got a call that we had to be there at 6.30 am and surgery was scheduled for 8.30 am, I was the 2nd person in line for the surgery. I made sure to put the back brace and my cane ready so that I wouldn’t forget to bring it with me in the early morning. I was also not able to eat or drink anything after midnight, so made sure to hydrate well the evening before. I felt restless and emotional, but just before I went to bed I felt super happy and encouraged, I was finally getting my surgery and really looking forward to a life without pain. The moment was finally there after 20 years…

Things I’ve learned or wished I’ve done

Make sure to look into the local pharmacy and choose the one closest to your accommodation. Also double-check that your information and insurance card is on file at that pharmacy. When the nurse sends the meds through, the pharmacy will verify with your insurance first.

You will need to take certain meds preferably two days before surgery so that it’s in your system, e.g. gabapentin, this might make you more sleepy/fuzzy/off.

Also prepare any other meds you think you’ll need, e.g. I asked my physician for meds that would help if I experienced stomach pain, Dr. Jenkins mentioned anything without salicylates is ok, so just make sure to verify with your surgeon.

I also took the recommended meds for constipation but it was horribly obstructed for 4 days… Dr. Jenkins said that my back pain would feel better once the constipation is gone, to spare the details: it took 2 hrs on the loo to get it out. So prepare all the meds needed for this and take them accordingly as it can add more pain and huge uncomfortableness otherwise.

For my fellow women BS warriors, naproxen is not allowed for up to 6 weeks post-surgery. I experience heavy cramps during my periods and normally take a high dosage of prescribed naproxen but I couldn’t take it and had to consume Tylenol, which didn’t really work for me so my first two cycles after surgery were painful…

Surgery day! :)

Day of the surgery! My mom and I woke up early and arrived at Mt Sinai in time. I wanted to find a spot for her to wait and orient her a bit to make sure she doesn’t get lost. The staff was amazing and reassured me that they will get her after my surgery, if she had any questions she could go to the counter and they’d call someone to translate. I could tell she was nervous and worried about me and I had to keep it together so that she wouldn’t worry more but once inside it was scary.

I went from room to room, first to change my clothes and leave my belongings in a bag, I got asked a bunch of questions and blood was drawn from the top of my hand (never had it done like that before), Dr. Jenkins came in to log some things on the computer and gave a little pep talk which I really appreciate. They then sent me to the pre-surgery prep room where multiple people were waiting in a large room with curtains open and it felt like a battlefield. I didn’t know what to expect so that threw me off a bit. They put me on the bed at the end of the room so I saw people being wheeled in for surgery but mine was delayed and I had to wait an extra 1.5 hours or so.

This period was a bit nerve wracking, I heard people crying, people in pain, people complaining that they wanted water but they couldn’t. I saw the person across me since all curtains were open and he mentioned that it was his 12th surgery for different things… he forgot to take some meds and just popped in the pills without water. Another person came after him and she first seemed in high spirits, but after some time she had a breakdown and doctors came to calm her down, she needed to wait even longer as the person before had a longer surgery than expected. Seeing this made me feel so grateful that this was ‘just’ my first surgery, it’s a humbling experience… If you can, choose to be the first person to have surgery that day or at least second but don’t opt for anything after if possible. Surgeries can take longer and chances are that you have to wait hours or worst case to be postponed.

I tried to sleep in this period but wasn’t able to because of the nerves but tried to keep my calm. A couple of anesthesiologists came by and introduced themselves to me and they were all really nice which made me feel more reassured. More blood was drawn, more questions asked and someone else was making measurements of my head for the EEG. When it was time to go they wheeled me in and it felt overwhelming to see the surgery room and the team each having their own task and putting things on me, things were happening too fast for me to comprehend and before I knew they injected the anesthesia and I was out.

The moment I woke up was an indescribable feeling, I instantly was bursting into tears both because of the high pain as well as the realization that it’s done and I’m still alive and can feel my legs (one of my fears was that a nerve would be damaged and losing other capabilities). My back felt really painful right after I woke up and I asked the nurse to call my best friend and she also gave me narcotics and after 3 dosages I wasn’t feeling any pain anymore. I kept on wiping my tears and she constantly said to not touch my eyes. After this period I was in the other recovery room but I can’t remember how and when. I suddenly was sitting there biting on crackers and sipping on ginger ale. The moment I saw my mom coming in I broke down again and we instantly bursted in tears. I could tell that she was very relieved and happy and so was I.

By this time hours passed and I was ok to go around 5 pm. Poor mom was up since 5 am and had to wait so long… they wheeled me out and put me in a cab to the hotel. I needed to stay nearby till Monday to be cleared and get an ok to fly back.

The rest of the evening I was doing ok, I could eat and move around, perks of having all the opioids in me. The next day was the start of a rough recovery…

Post-surgery days 1-4

Post-surgery day one was rough. It was really tough to get out of bed, my mom helped me but couldn’t pull me and I had to use my arm strength first to push myself up sideways, hold onto her and slowly pull up while she’s supporting me without moving too fast. I wasn’t nauseous and could eat well. I did experience dizziness after getting up and had to rush to the toilet as I had the feeling of passing out when being upright. It came to the point that I couldn’t get up as I immediately became lightheaded. I called the surgeon’s office and Dr. Jenkins mentioned that I’m most likely dehydrated and recommended drinking electrolytes. This was something I didn’t think of before, water alone wasn’t enough for me and I ordered some electrolytes drink and orange juice through Uber eats and they brought it to my room. I felt much better after this. Mt Sinai also called to check in if I was doing well.

Back just right after surgery

It was also really rough and painful to turn around in bed and I needed my mom to pull/push me to rollover. She has been the greatest and was instantly awake when I needed something. She was even cooking in the middle of the night so that I didn’t take my meds on an empty stomach. It was a lot of pills to take and I was worried about my stomach issues. In the past whenever I would take painkillers for my periods, my stomach would ache afterwards and I couldn’t eat much for days. I made sure to prepare for this and asked my physician to prescribe me omeprazole. Luckily I was ok during the first two post-surgery weeks (my stomach issue acted up after I stopped most of the meds..).

I first thought that I could handle the pain and didn’t take much of the opioids but it became too painful and I had to increase it to 2 pills every 4 hrs. I could barely walk as it was putting pressure on my lower back, the left side where my ‘extra joint’ is was hurting the most.

I further slept a lot and the meds would make me feel fuzzy. I can’t remember day 2 post-surgery, I don’t know when and how I took the pills and ate but apparently I did and my mom has been stuffing me with food but she was saying afterwards that, every time she was done cooking and turned around I already fell back asleep haha.

My back did become very swollen and turning around in bed was hurting a lot. I didn’t have the back brace on in bed but I’d keep it on anytime you’re out of bed. It gives more stability, at first I didn’t feel I was walking normal, I didn’t know how to walk normally as my whole body and spine was adjusting, it felt as if I was leaning more backwards and every step was painful.

Things I’ve learned or wished I’ve done

Once home, you’ll notice a lot of things that you’re not able to do. What helps is getting tools that will make it easier, see section "More information on Bertolotti Syndrome, helpful tools pre- and post-surgery" for a list of tools. Be prepared that your voice will be raspy and throat will hurt a bit due to the intubation, so drink lots of fluids.

Post-surgery day 5 - clearance to head back home!

I felt a bit better, the pain meds were working and I went in to visit Dr. Jenkins. My incisions looked good and overall no other complications so I was cleared to go back home :) My back was looking very swollen though, if I saw a photo like that and didn’t know better I’d think it was the front of a body lol but my whole lower back was so swollen. Luckily I had the brace, that has been a life-saver. I’ve heard stories of other patients not having a back brace, that must’ve been even tougher.

Insanely swollen back days after surgery

Flying back was a hassle but not too painful as I was high on meds and the flight wasn’t too long from NYC to Boston. Compared to the usual flare-ups pain, this was very doable with meds. I guess in a way our pain throughout the years prepared us a bit to cope with the surgery pain. I made sure to indicate the handicap assistance during booking and that has been a life-saver too. You then just check in at the counter for assistance and they put you in a wheelchair going through the security checks and to the gate. You have the right to keep your back brace on, just indicate that and they’ll wipe you down while you’re in the wheelchair, no need to get up or take the brace off. You further can ask for assistance to your chair in the plane but I was able to walk a bit and requested it till the entrance of the plane, make sure to use this benefit as it’ll prevent more pain while the trip is already very uncomfortable.

Once home, I made sure to sit down and asked my family to let Maximus, my energetic chocolate lab in, he was so excited and was all over me. It was great to have him around and just to be in bed with me was nice during my recovery.

For the rest of the first post-surgery week I was recovering. While still in pain, I felt more hopeful.

Post-surgery week 2

While I initially felt hopeful, it became more tough as I was weaning off from opioids  during this time so the pain was high. When I saw Dr. Jenkins after my surgery, he asked if I still experience the usual Bertolotti pain and I said that I can’t objectively say that yet as I was on heavy meds so I didn’t know if it was just blocked by that. But after weaning off from opioids I didn’t feel my usual Bertolotti pain on the left lower back side anymore. Normally I just have to arch my back a bit and feel the pain but I didn’t at this point and this feeling has been the greatest. Whenever I was in high pain because of the surgery I just have to arch my back a bit and I would feel so grateful to not feel the usual pain. I knew I had to push through and that the surgery pain would go away. It’s an indescribable feeling to finally not feel my usual chronic pain that I’ve been living with for the past 20 years…

My back was still very swollen for the longest time and I could only sleep on my sides. This means that turning around in bed hurt a lot as I had to go over my swollen back each time. At some point my leg muscles were giving spasms and it was hurting to lie on my sides. I used my heat pad to feel some relief for my hip/leg muscles. It felt really exhausting as there were no positions to feel any relief. Nights were very rough and I needed to take meds to try to get some relief.

It was a hard and a tough period but I tried to feel grateful, no matter what, there’s always something to be grateful for and I kept reminding myself to look at the things I do have instead of what I don’t or what I can’t do. Felt really grateful waking up, sun shining through the window in the early crisp morning, blessed to be alive and to get through another day.

Things I’ve learned or wished I’ve done

You’ll spend a lot of time in bed passing by days without much thoughts or strength to do anything. Compile a list of movies, tv shows, audiobooks and inspiring songs that align with you (see section "More information on Bertolotti Syndrome; helpful tools pre- and post-surgery" for a list of this).

Inspirational, on the topic, podcasts also help to create a different perspective, e.g.

‘What can I do today that I couldn’t do yesterday’ - Jay Shetty (Genius 251: Coping with Illness, healing takes time)

Post-surgery week 3

By this time I was off all meds, hindsight I could’ve continued the muscle relaxers and normal painkillers. It would’ve made my nights easier but I didn’t want to be hooked on the meds for so long and was afraid my stomach issues would act up. It did though… I wasn’t able to eat and the first bite would already cause pain at the top of my stomach. I didn’t eat much for the following days and chicken soup with crackers was a safe choice but I felt really weak.

I "slept", but red indicates time awake...

On top of this, I experienced migraines more than ever. The constant lying down position didn’t help as it would get worse lying down sometimes. I couldn’t sit for long, I couldn’t walk much, I couldn’t stand long, lying down would trigger my migraines and if lying down on my sides, it hurts and my back was still swollen, there was literally no position that felt comfortable…

I had to push through and day after day small improvements happened, it was all trial and error. I tried walking more and get some fresh air outside. I was doing well with my back brace on and cane on one side. But be careful to not overdoing it, I had to learn it the hard way and sometimes felt good and thought I could already do more but the next day my back would hurt more and I’d have stinging sharp pain. It’d take me 1-2 days to recover and sets me back even more. It was a frustrating process but it’s good to get up and try and learn from it.

Other things I experienced are constant clicking in my right groin area, my knees would hurt and my left ankle. I guess these were all adjustments my body needed to make after the fusion.

Overall, being off the meds was a difficult transition. It did get rid of the fuzzy feeling and I was able to think more clearly, but that also meant that I realized more about the  surgery and going through it was quite traumatic.

Post-surgery week 4

This week was much better, I could eat well again, my migraines were still present but the meds as preventives helped. Back still felt bruised but less swollen. Trying to walk and sit longer but am still very limited. Also had an appointment with Dr. Jenkins and things were looking positive, celebrating the small wins 🥹

Post-surgery week 5

My pain pattern changed, the left hip pain is still there but different than before but no pain in my ‘extra joint’ lower back area and that was the main pain source. I did cover my incisions with sterile pads whenever I was wearing my brace for a walk as it was hurting when it pressed down on my incisions. However, at some point I developed rash and pimples and stopped covering it. It was itching like crazy, but days after applying corticosterone cream it disappeared. I still couldn’t walk or sit long and it felt bruised around the hip and lower back along the spine in between the stitches area.

Post-surgery week 6

He has been she greatest support, always checking in but so confused when I couldn't play with him

I was weaning off wearing the brace around this time and I thought I was doing better. I felt stronger physically and did more around the house without the brace on. This was a mistake… I had a big flare-up and experienced the pain as how it was before the surgery when I shifted my hip, except this time the shift was less when seeing it in the mirror and it’s not the ‘extra joint’ that’s painful but the areas above and around it and the hips. This was a huge setback and I had to get on certain meds again to recover…

What also made it more difficult was that my parents had to go back to the Netherlands. It was really nice and necessary to have the help doing house chores, cooking and taking care of Maximus. When that dropped away, it was a hard “back to reality” realization and I had to do everything myself. It was frustrating when I couldn’t… and it was a depressing period without the usual daily routine where I would walk around the block a bit with my mom, or watching movies with her and just have the company. For a long time I didn’t feel like talking, texting or calling anyone and it was really difficult to push through the days…

Post-surgery week 7

Around this time, my physical therapy was about to start. This helped tremendously for me to get out of the house and create some sort of routine. Dr. Jenkins recommended 3 PTs per week with pool therapy. I found a nearby PT that offered pool therapy, however, my left incision was still oozing and wasn’t fully closed. Hence, I wasn’t able to get into a pool yet and started carefully with land therapy. This gave me a lot of confidence just in general and to have some trust in my body’s capabilities again. Driving has still been an issue, PT helped me gaining confidence with getting in and out of my lower car and especially without wearing a brace. The fear of twisting, bending without realizing has been ingrained but little by little my body gained more strength and confidence. Note that you’ll notice that turning your wheel feels “difficult” at first, the side back muscles will pull which have been quite dormant during the recovery period with the brace on, so it’ll need to get used to it again. If possible, start pool therapy first as that'd help a lot with your recovery, mine was way slower because of my flare-up and not able to start with pool therapy first.

3 months post-surgery!

I feel like I’m alive again, things have been improving a lot. In this recovery period, there were a lot of “first times” and it feels amazing to be at this point now and see the progress. I will never forget the pain and struggles, it makes me feel more grateful for the little things in life and to be mindful about it. Simple things such as tying my own shoelaces again felt like a huge victory. It is still difficult to get back to the "normal" way of living, and there are times when my hip/groin hurts more along with my upper back/neck leading to migraines, but the main pain source around my left "extra bone" is not as present anymore and that is a huge relief. I might not ever fully get rid of the other collateral pain with this condition, but hopefully those are manageable with PT and active stretching/exercises over time. Also note that, even though you're not using your back brace anymore, it is still useful at least to me for times when I have to for example shovel the snow. I have the sweetest neighbors who helped me out and cleaned my front without me saying anything, this means a lot especially because my back is not up to strength yet. It helps to have the brace on, I feel safer in a way that I don't do a wrong movement, or worst case, if I slip and fall it'd probably hurt a lot because the brace is rigid but I'd not want to accidentally bend or twist my lower back.

My last words of advice for this post: please remind yourself to not compare with other recovery periods, every individual is different and if your body needs more time then that’s the right thing to do. Keep listening to it because you know what’s best for yourself.

"Guess I'm screwed for life is my pun now ;)"

Some other tips

Before surgery, pay your bills, set auto-payments, check if your insurances are up to date, if your renewal is within your recovery period, do some research before you go into surgery. If you have pets, get sufficient food, visit the vet to do any comprehensive tests needed before your surgery.

Stay on top of any pre-authorization you need from your insurance. This process was started one month before your surgery and I got the approval one week before going to NYC, which added more uncertainty and stress.

Book flight tickets and accommodation in time, with insurance/option to change the dates.

Prepare comfy clothes, be aware that certain pants go over the incisions so that might be uncomfortable when the incisions are still open or itching. It helps to get soft sweaters and pants, blankets, socks etc that makes you feel cozy and comfortable during this process.

If possible, look for mental counseling, I was feeling very anxious before the surgery and also after my initial recovery it’s nice to have someone to talk to in order to process and heal. Pain has been a part of me for 20 years and it feels so relieving to finally heal from things and experience life better.

Lastly, have a Bertolotti buddy, from the Facebook group I met other Bertolotti peers locally and one of them has been checking in with me regularly which I really appreciate. I wasn’t always the fastest in my response as I wasn’t feeling well for the longest time, but it’s nice to have someone who understands if I don’t have the capacity to respond. This is something I want to establish also, sign up and stay tuned for future Buddy Matches!