The Injury
In June 2018 I was doing a core workout, mountain climber (you know the one where you’re on your hands and feet, and bring your knees up to your elbows like you’re climbing a mountain). I think I twisted as I was doing it and felt an incredible pain ripping up my side. As I was working out with other people, I didn’t want to create a scene, but had to stop because the pain was so intense. I have quite a high pain threshold (probably all the martial arts and deep tissue massages!) but this pain was extreme. I ended the workout and headed back to work. I couldn’t focus on work because the pain was so intense. I figured I had pulled or torn a stomach muscle. I called the nurse at my GP and spoke to her to make sure it wasn’t something more serious. She asked me a few questions and said it sounded like a muscular injury.
I booked in with the physio pretty quickly. He told me that he thought it could be the muscles that connect under the ribs, because that was where the pain was. He said it seemed like a pretty bad injury so it could take about 10 weeks to heal.
6 months later and it still wasn’t any better, in fact getting worse.
The pain is just underneath my ribs, around the 8th rib on the left side. At one point it started clicking which was so strange! I asked my partner to feel it, he hooked his fingers underneath my ribs and gently pushed in, he could feel it clicking (and it hurt A LOT). It was actually really sore for about a week after that, so we won’t do that again.
By this stage I had figured out what I could physically do, and what I couldn’t physically do. If I stuck within these boundaries, the pain was bearable (just). Some of the things I couldn’t do:
Sitting for too long
Walking for more than 30-40 minutes
Lying on my side (any side)
Carrying or lifting anything heavy
Twisting
Bending down (like putting things in the dishwasher)
Sitting on my knees and leaning forward (like cleaning the shower)
Doing anything that uses my core (which is a lot of things)
Those are just some of the things that I can’t do. As you can imagine my life has become quite restrictive. I adapt pretty well to things, so adapted to my new lifestyle ok, my kids and partner help with the housework a lot, they understand when I have to lie down on my back because of the pain, or want to go to bed at 7pm (it’s quite tiring being in constant pain!). I also wake up every time I roll over or change position in bed as it hurts quite a bit, so I am constantly tired. I’m very grateful that my family is so supportive.
Another 6 months later, and I had undergone lots of tests. I had an ultrasound scan, x-ray, MRI and a TC bone scan (this is where they injected me with a radioactive substance, wait for 2 hours for it to seep into my body properly, then do a scan looking for bone abnormalities). ALL of the tests came back normal. At least I know I have healthy organs. The person doing the ultrasound commented that my liver was in really good condition, which was nice to know, but it didn’t give me an answer as to why I have this awful pain! I knew the pain was real, why wasn’t anything showing up?! They said if it was a torn muscle, it would have shown up in the scans.
I felt so deflated and upset that the cause of the pain couldn’t be found. My partner and I ended up looking to Dr Google for answers. Turns out there are LOTS of reasons why you could have pain in the upper left stomach! One day we found a medical article about slipping rib syndrome. I had pretty much ALL of the symptoms. One way to diagnose it is by doing a “hooking manoeuvre” where the doctor hooks their fingers underneath the ribs. It is painful, and sometimes you can feel a clicking sensation. Hold on, didn’t we do this before and that’s EXACTLY what happened! I didn’t want to try doing the hooking manoeuvre again because of how sore I was afterwards, so we decided to do some more research about it.
I felt sure that we had found what was wrong. It’s commonly a misdiagnosed and under-diagnosed condition because it’s not very common.
Slipping rib syndrome is when the cartilage and the ribs detach from each other (usually the false ribs - ribs 8-12). With the cartilage no longer holding the rib in place, the tip of the rib is hanging out stabbing the insides and causing pain and inflammation.
I went to my doctor with a printout explaining the condition, and highlighted relevant parts. I asked her for a referral to a thoracic surgeon as apparently it’s their territory, and according to everything I had read, they are the specialists to see about it. My doctor told me she hadn’t heard of slipping rib syndrome before, and that she didn’t think a referral to a thoracic surgeon would be a good idea, as they wouldn’t take me seriously since I diagnosed it myself.
She did refer me to a sports medicine doctor however, so in September 2019 (over a year after the injury) I had an appointment with a doctor who specialises in sports injuries. I did the same thing, printed out the information sheet about the condition and told her what I thought it was. She had heard of slipping rib syndrome, but didn’t know much about it. She actually laughed when I asked for a referral to a cardio-thoracic surgeon. She told me to try acupuncture and gave me a prescription for nerve pain killers. After the appointment I felt so deflated we drove to the sea where I sat and cried for a while, trying to process everything. It felt like none of the doctors were taking me seriously. I had already been doing acupuncture, but I continued doing it, despite it not helping my ribs. I took the nerve pain killer which helped after a while, it also helped me sleep at night! It’s called nortriptyline (it doubles as an antidepressant which is probably why I slept better). The pain still woke me up every time I changed position in bed, but I managed to get back to sleep easier. I didn’t have any follow up with the specialist, so when the nortriptyline ran out, I didn’t know what to do so I just stopped taking it. The side effects were quite awful coming off it so I decided I didn’t want to try that again. (I had only been taking 2x 10mg pills a night, and I realise now that’s why it didn’t do much for the pain!)
In November 2019 I went to see another doctor about something else, and told them about the pain in my ribs and how much it’s affecting me (even though it wasn’t their field as I was seeing them about something else). They asked if I had any information about it - “well actually I just happen to have this information here in my handbag, and have even highlighted the relevant parts.” They were AMAZING - they listened to me, took me seriously, and read the information. They looked it up and saw that it can also be diagnosed with a “dynamic ultrasound” where the patient is moving while the ultrasound is being taken (instead of lying still like a regular ultrasound). They said that they just happened to have a great radiologist working next door, and he would be happy to see me.
The radiologist had never heard of slipping rib syndrome before, but he read up about it and did the dynamic ultrasound. During the ultrasound he asked me to look at the screen - “see that bit right there? That’s the tip of your 8th rib, it’s not connected to anything, so it’s stabbing your insides, which is why you’re getting so much pain.” I felt like crying with relief that he had diagnosed it and found out what was wrong.
He gave me a guided cortisone injection and also a local anaesthetic injection into the affected area. The local anaesthetic worked almost instantly. This was the first time in 1.5 years that I wasn’t in complete agony. I was trying to hold back tears and I’m pretty sure I thanked him about 10 times.
The radiologist had explained that the local anaesthetic would wear off that evening, and the cortisone injection can take a few weeks to start working. The cortisone ended up not having much effect on my ribs and I didn’t think that having a local anaesthetic injection every day would be very good.
Research to Find a Surgeon
I thought that now I have a diagnosis I could get this fixed easily! Because the rib will never re-join the cartilage by itself, the options are surgery, a nerve block (to try and dull the pain) or just living with it. Because mine is so severe and the non-surgical options I’ve already tried haven’t worked, it would need surgery to fix it. Normally to fix this, the surgeon would remove the affected ribs (or part of it) and the affected cartilage.
In the meantime I had done HEAPS of research about slipping rib syndrome (SRS) and even found a Facebook group with other people in similar situations to me, all around the world. It felt amazing to find out that I was not alone, that I found other people who were suffering like me, and had to pretty much diagnose themselves through google as I had done. I read their experiences and things they had to go through to get a diagnosis, and what surgeons they had found that knew about the condition.
In my research I found that quite a few people who had the rib resection (removal) had some long term side effects like causing the ribcage to become unstable and other ribs had broken away from the cartilage as well. I also found that there was a surgeon in West Virginia, USA who has quite a lot of experience with SRS and has invented a new procedure to stabilise the ribcage, instead of taking the ribs out. I was so excited to find that there was another option that didn’t involve taking my ribs out! But the USA is halfway around the world, and would cost SO much money, so it didn’t seem like a viable option, especially now with coronavirus!
I decided to continue trying surgeons here in New Zealand to see if I could find one who could help me. I spoke to four different cardio thoracic surgeons around New Zealand before I found one that knew about SRS and could operate on it. If I get the surgery done here in NZ, I would have my ribs and cartilage removed. I would much rather go to the USA and see the specialist who deals with cases like this regularly, and has a procedure which means I can keep my ribs in place.
Getting Worse
Over lockdown I got a job working at a covid-19 testing centre which I really enjoyed doing, and learnt a lot. Unfortunately the pain in my ribs has become a lot worse; I think because I was doing a lot more walking and sitting than normal, which my ribs didn’t like much. I started taking a nerve painkiller again, nortriptyline. I’m taking 30mg per night which helps the pain a lot. I was on 40mg but I was getting heart palpitations and constant headaches. I still get quite bad headaches on 30mg, but I would prefer that to the intense rib pain.
As time goes on the pain is getting consistently worse. The ribs aren’t connected to anything at the front, so they stab my insides causing pain and inflammation. Sometimes the rib stabs my diaphragm which REALLY hurts. Breathing is extremely painful but of course important, so I lie flat on my back and can only take in very shallow breaths until the pain lessens. This is really embarrassing when that happens in public. I’m not one to cause a scene but when it gets my diaphragm there’s no hiding or ignoring it!
In April 2020 I was sitting and I twisted around trying to stretch my back a little, and I felt the other side of my ribs break away from the cartilage. I knew what had happened straight away. I have no idea why that happened, it was a gentle stretch!
It’s gradually getting worse, but not as sore as the left (original) side.
I wonder if there’s something wrong with my cartilage? Why would this happen on BOTH sides?! From what I can gather from reading about other people’s experiences with this, it's not uncommon for other ribs to come away from the cartilage because of the stress on the remaining ribs. Another reason why I want to keep my ribs rather than have them removed.
After doing HEAPS of research on other people’s experiences with the different types of surgeries, I have decided now that even though it will be expensive, I would rather see the specialist surgeon who has dealt with this condition many times before. He can fix my ribs rather than take them out, especially now it’s happened on both sides. If there is an issue with my cartilage or other complications, then he will know how to fix it. This is my body and whatever I decide is going to impact my future greatly.
I've been in touch with the hospital in West Virginia, they are so helpful and lovely. They said even though they haven’t operated on both sides at the same time before, they will do this for me since I’m coming half way around the world for surgery. (the alternative is waiting 2-3 months in the USA between surgeries, and paying for 2 surgeries). I’m pretty tough, so I will get both sides done at once, I would prefer not to be away from my children for too long!
I look forward to being able to sit without pain, to lift my son, to walk, run, dance, exercise, and just to move in general! I understand that I probably won’t be able to do martial arts again, definitely won’t be able to dance like I used to, but I have a chance to be able to be whole again.
I encourage anyone who gets told they have to deal with pain because the doctors can’t find what’s wrong with them to RESEARCH. You can’t always rely on the health system as I’ve found out. I felt the system let me down, but I hope that this can bring more awareness to the issue and that other people can help themselves instead of having to live with debilitating pain. I would guess that in 5 years time the American surgeon’s procedure will become more common around the world, but the peer reviewed paper for this surgery was only just released a few months ago and I can’t live with this any longer.
We have started a give-a-little page to help raise money for the surgery and I’m going to put on a fundraising show in early October. If you can donate anything at all to help with this I really appreciate it. I know a lot of people have been affected by covid-19 and won’t be able to help financially. I just appreciate you reading this blog, I would like to try and create some more awareness of this terrible condition!
Here is the link https://givealittle.co.nz/cause/help-jayne-have-surgery-in-america-to-fix-her-rib
I will post more about it and about my journey on this blog. Thank you for reading, and please feel free to message me if you have any questions!
I am writing this from a reclining chair I just bought second hand from TradeMe, it reclines back far enough to take the pressure off my ribs, and if I balance my laptop on some cushions, I can work on my laptop without as much pain! So good. Putting an ice pack on my ribs helps as well.
If you'd like more information about slipping rib syndrome and Dr Hansen's surgery that I will have, please see
