The story of TB from the UK

TB from the UK

Surgeon: Luke Cascarini

Patient: Registered nurse

Medical history: Right Temporomandibular joint replacement February 2022, Antiphospholipid syndrome diagnosed 2023, Osteoarthritis various joints.

My problem all started at the end of 2018, aged 29. I went for a routine check-up at my dentist, and when asked if I’d had any problems I explained I had been experiencing some pain and restricted movement in my right jaw joint. My dentist immediately referred me to the oral maxillofacial department at my local hospital. I was treated conservatively until May 2020, when I had an unsuccessful arthroscopy of my right temporomandibular joint. This left me in a much worse state with a mouth opening of just 8-10mm, on multiple pain medications Oromorph, co-codamol, Baclofen and amitriptyline, and on a pureed diet with supplement shakes to meet my nutritional requirements. At the time I was studying for my Post Graduate Diploma in Specialist Community Public Health Nursing; I was told by my employer to go off sick, or I would be failed for the course as they would be unable to make the reasonable adjustment recommended to accommodate my jaw condition.

In October 2020, I saw Luke Cascarini at Harley Street Specialist Hospital. Luke Cascarini identified displaced disc without reduction and degenerative changes in my right temporomandibular joint. On 30th October 2020, I underwent a Level Two Arthroscopy with Bone Marrow Aspirate Concentrate (BMAC), a new regenerative treatment. Immediately post-surgery my mouth opening had increased to 20mm, from just 8-10mm. Within three weeks I’d come off all my pain medication, my mouth was 30-35mm, and I’d been able to return to work full time to complete my course. Unfortunately, this was short lived, and at seven to eight most post arthroscopy I started to experience quite a dramatic regression in my symptoms; increase in pain requiring co-codamol, decrease in mouth opening and crepitus noises from the joint. In July 2021, just nine months after the Level Two Arthroscopy with BMAC, Luke Cascarini advised that the joint had degenerated further, and the only remaining option was a right temporomandibular joint replacement. A surgery which I went on to have on 5th February 2022. With the exception of a facial nerve paralysis which lasted for four months but was fully resolved by six month my recovery was uncomplicated.

Luke Cascarini had advised there was a possibility my left temporomandibular joint could require replacement in the future, given the degree of Arthritis, and the fact there was evidence of damage within both joints. I was referred to Rheumatology after my right temporomandibular joint replacement to investigate the cause of the loss of my joints.

It became obvious early on after the right temporomandibular joint replacement that the left joint was not regaining “normal” movement. It was slipping to the side on opening, and there was significant crepitus noises from the joint. Initially, we gave it some time in the hope it would settle but it didn’t. After the right replacement, I had come off co-codamol and Oromorph, but unfortunately I ended up back on co-codamol due to the pain in the left joint. In October 2022, nine months after my right temporomandibular joint replacement Luke Cascarini injected Kenalog (a steroid) into the joint. Unfortunately, this provided very little relief. So, in January 2023, Luke Cascarini performed an Arthrocentesis; again, with very little effect. The amount of co-codamol I required was increasing. In July 2023, Luke Cascarini performed a nerve block again with little improvement. It was following this I received a diagnosis of antiphospholipid syndrome. This is believed to be the cause of the degeneration within my joints. I was commenced on 75mg Aspirin once a day with 300-600mg as required for the migraines and Hydroxychloroquine 200mg once a day (a disease modifying anti rheumatic drug with anti-thrombus properties).

Luke Cascarini again, felt we had exhausted all the options, and the only option remaining once again was joint replacement. I was existing on soft diet, overnight oats, yoghurt, protein shakes, Mediterranean rice, and fish. Chewing had become so painful, that for the most part I avoided foods that required chewing. At its worst my mouth opening was around 20mm, as it had been with the right side. I was put onto a Butrans patch for the pain, however I had a severe allergic reaction so reverted back to co-codamol. The Hydroxychloroquine also helps with joint pain, as does the Aspirin, so I was able to manage on this combination of pain relief until the surgery. Although I was continuing to run, I was in a lot of pain afterwards. My joint felt very unstable and slipped out of position. It took a good few hours to settle. There are days at work where I would have back to back meetings, and I would be in significant pain after lots of talking. It’s difficult to put a value on the pain, having had it for so long, I’ve just learnt to live with it. But generally, on a day to day basis probably around 7/10, and after lots of talking or exercise it would be an 8-9/10.

I had my left temporomandibular replacement on 12th March 2024. The surgery went smoothly, without complication. I was on puree food initially, with limited movement of the jaw. Due to the underlying antiphospholipid syndrome, I required sub cut Heparin for two weeks which commenced six hours post-surgery. My pain was managed with Co-codamol and Oromorph. The joint was sent for analysis, this came back showing severe degeneration.

Around nine days post-surgery I developed burning hot redness and pain to my left cheek, and fullness within the ear. Initially, Luke Cascarini was concerned about infection, antibiotics were continued for a further week. Thankfully the blood tests showed no sign of infection. Luke Cascarini then diagnosed neurovascular face pain and commenced me on Pregabalin. After being on the Pregabalin for a week, the pain was controlled and had gone from a 9/10 to a 2-3/10. I had very little pain by this stage from the surgery itself. We held off on commencing exercising the jaw until this was settled due to the extreme pain I was experiencing. I commenced using the Orastretch on Day 15 post-surgery, and my mouth opening was already an incredible 32mm.

My recovery has gone from strength to strength, although would say second time round has been harder than the first time. Where am I now at 8 weeks post replacement? I have weaned off the Pregabalin and the neurovascular face pain has resolved itself. I still have some fullness feeling within the ear, but that’s improving and is no longer constant. I am weaning off Codeine and only take 30mg two to three times per day now. I am continuing to exercise daily with the Orastretch, and my mouth opening is consistently between 35-40mm. Diet wise I would say I am now eating better than I was before my surgery! I’ve had pizza, meat kebab skewers, Greek food, salad. Mouth opening and chewing is completely easy, painless, and smooth. I’ve returned to running, slowly but surely rebuilding.

I would say for me it's only when I have no pain, that I realised just how much pain I was living with before the replacement.

Having already had a right temporomandibular joint replacement two years ago, I knew it would transform my life. It will enable me to progress with my running, to enjoy days out with my son without worrying about the pain and eat a normal diet and not have to avoid foods I enjoy. I can now socialise and talk, without fear of the impact on the pain the next day. Last but not least, as both a nurse and a patient I want to use my positive experience to help others who are facing temporomandibular joint replacement.