A jaw surgery and chronic facial pain patient recently asked if I could write a blog about who I spoke to in order to get my diagnosis and who I went to see to be referred for my different treatments. I realise the way modern healthcare works changes like the wind and the criteria they once used to assess certain diseases and treatments has changed, but I thought this information may be of benefit to the UK patients and some international patients who are just starting their treatment or part way through their journey and are looking for their next step.
Jaw Surgery & Brace Work (Dentist)
From a young age my mother was told I would need to be referred to a specialist about brace work and maxillofacial surgery. I was around 8 when this was flagged up as a concern by my dentist. At the age of 11 I was referred to St Mary’s Hospital in Sidcup. They agreed with my dentist and started brace work to correct my bite and prepare me for surgery when I was 18.
Changing Hospital / Treatment Team (Dentist)
If you have read my previous blog posts you will know they weren’t particularly child friendly and a lot of my esteem issues stem from my time with them. I was deeply unhappy with the way they treated me and the way they made me feel, so I spoke to my dentist who wrote a referral letter to King’s College and Guy’s Hospital in London. This is when I met prof Cobourne and Mr Shaun Matthews. They agreed to take my case on and they were the team who operated on me.
Second opinions about surgery (Dentist)
During my treatment I started to develop terrible left sided facial pain. I was desperate to be out of pain and to have my surgery. I was also very nervous about having surgery at King’s College as this is where my baby brother died and it had some horrible memories for both me and my family.
I wasn’t sure what my surgical team had proposed would be the best option and I did not want to wait, so I spoke to my dentist again who wrote to Eastman’s hospital and asked for a second opinion. This is were I saw Mr Lloyd. He stated that he was a good friend of my team at Guy’s and he wouldn’t feel comfortable to take me on. He said that the team at Guy’s had my best interests at heart.
Going private (GP)
Unable to wait much longer and unsatisfied with Eastman’s response, my dad added me to his health insurance and requested an appointment at the Sloane Hospital. There I met a very senior consultant. And I am terrible because I cannot remember how to spell his name. He explained that it was he who actually mentored my surgeon and reassured me I was in good hands. He explained the same procedure my surgeon had proposed and said it would not be any quicker and certainly not cheaper to take the private route. Even if I were to pay for surgery I would need to have surgery at King’s College because it was the only hospital in our area that had the required machinery, equipment and specialist team required for my type of surgery. He suggested that I be patient and wait it out. Feeling a little deflated and very worried, I had to bite my tongue and hope it would all be ok.
Diagnosis Atypical Trigeminal Neuralgia and TMJ (Maxillofacial Surgeon & Neurologist)
As previously mentioned, 2 years into my brace treatment, I started to develop terrible left sided facial pain. I was and still am in pain 24 hours a day. This pain was debilitating, distracting and unmanageable. I had never experienced anything like this in my life. I would describe it as the worse migraine of my life, but in my face and it just didn’t stop. Stabbing, shooting pains all day and all night, clicking and muscle spasms around my jaw joints and huge painful balls behind my ears. My neck, jaw joint and face was hot and it felt like half my skull was on fire while being crushed by a vice. My surgery team asked for x-rays, CT scans, MRI of the joints. All came back clear. Just a slight slip of the disc on the left side. This is seen as quite normal.
I spoke with my GP and dentist. My GP referred me to see a neurologist who did more MRIs and x-rays. I was also tested for Lupus using a blood test. The neurologist diagnosed me with Atypical Trigeminal Neuralgia based on my description of the pain and the absence of anything untoward on the scans (cancer etc).
My surgeon who is a TMJ specialist believed that the joint pain was TMJ dysfunction and it was he who diagnosed me with TMJ dysfunction.
Chronic Fatigue and Fibromyalgia (Psychiatrist & GP)
After several years of pain, severe issues with my mobility post operations and complete exhaustion, my psychiatrist and GP diagnosed me with CFS and Fibromyalgia. To remind you I was completely unable to move from my neck to my lower chest after surgery and had to go through years of physiotherapy and rehab to get where I am today. Often these diagnoses are only given after all other disorders have been discounted. I had been feeling exhausted for a period of years. I believed it was the combination of crippling daily pain and the sedative pain meds which had caused it. But my GP and psychiatrist believed it was Fibro and CFS. They said that the muscle weakness, shaking, urinary tract issues, inability to walk far without pain all over my body and the flu like symptoms were a result of these two disorders.
I also had glandular fever when I was 18 and had a terrible reaction to the medication Amoxicillin. I was a lobster and burning up for a period of weeks. Then I turned a horrible black and blue colour when the fever finally broke. We found out in 2015 that I am severely allergic to Amoxicillin and Penicillin and I won’t be able to use these ever again. Apparently, Glandular fever makes you more susceptible to getting CFS in the future and this was another tick in the box for my psychiatrist and GP.
Optical Neuralgia and Trigeminal Neuralgia continued…
I have recently seen a new neurologist. My psychiatrist has now referred me to St Thomas’. I am now awaiting further tests and scans to see if anything can be seen on the new scans. Since the surgery I get terrible migraines, face pain attacks and neck spasms and weakness. This was never investigated. Instead it was assumed my lack of mobility post-surgery was due to a reaction to the muscle relaxants used during surgery. My neurologist would like to discount anything new and would like to see if there is anything visible which could be causing the tension, muscle spasms and muscle weakness. I also have trouble with shooting pains down my arm and problems with grip now. So this is a new development.
In conclusion, there are a lot of people involved in making my case and diagnosing me. If you are having problems with your surgical team or need a second opinion, ask your dentist to refer you to another hospital. If your dentist isn’t helpful, go elsewhere. Try a different dentist.
If you are having problems with long term facial pain or chronic pain of any sort, speak to your psychiatrist or your GP about a referral to a neurologist. If your GP isn’t too helpful and you don’t have a psychiatrist, you can always ask your pain management team to write a letter to your GP who will be able to refer you to the correct team.
I know it is frustrating and it sometimes feels like you won’t ever get the answers you want or desperately need. But do not give up hope and do not give up trying. If at the first, second, third or fourth attempt you don’t succeed, try, try again. It only takes one good specialist to diagnose you.
Always ensure you have a full list of your symptoms to take with you and keep a pain diary and calendar. Something like this….
If you go fully prepared and with as much information as you can, this allows the specialist to be able to assess you a lot faster and get a better grasp of your overall condition and how it effects your life. Without this, you could forget crucial symptoms, examples and pain management tactics. All of this helps to develop a story of your life and what you are dealing with on a day to day basis.
You can now continue the chat and speak with other patients on my new closed Facebook group:
Looking forward to connecting with you soon!
Lots of love always,