Sunday, 11 February 2018

Who gave me my diagnosis?




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,

Steffie

x.x.x




Sunday, 4 February 2018

Cleaning my retainers



I have had my retainers for years now. Not the same pair. I have had 3 replacement pairs since my first Essix retainers given to me by the hospital in December 2011.

In that time, I have heard all the warnings; don’t keep them in water, don’t use denture cleaner, don’t brush them with toothpaste, don’t use warm water. Apparently, all these things will break down the plastic. Well news is, general wear will break down the plastic. So there is very little you can do to prevent them breaking. The truth is, after a while they will just break. Plus, if it is a choice between putting dirty bacterial infested retainers on my teeth or clean retainers, I am saving my teeth and choosing the clean retainers every time. I did not go through this many years of treatment and pain to destroy my teeth.

So here is what I do to keep my retainers sparkling clean –

Note: I still wear both my upper and lower retainers 1-2x per week and I wear them overnight.

  1. In the morning, I take the retainers out and wash them under cold clean water.
  2. After this I fill up my denture pot with water, add the retainers and pop in a non-scented Steradent Active Plus tablet.
  3. I leave the retainers to soak for the rest of the day while I go about my business.
  4. When I return home from work, I rinse the retainers and give them a light brush using the spare head on my electric toothbrush.
  5. Then I pop them back into the pot with clean water. I change the water once a day until the day comes for me to wear them again.
  6. When it is time to wear them again, I run them under cold water and brush them with my usual minty toothpaste and rinse.
  7. I brush my teeth, floss and then rinse.
  8. I then brush over my teeth with Eucryl and pop in the retainers. The Eucryl acts as a whitener and reduces the amount of bacteria and plaque building up under the retainer during the night. 

I have tried many different ways of maintaining and keeping my retainers clean. This is the one that has been most effective.

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,

Steffie

x.x.x


Sunday, 10 December 2017

Exercise after Jaw Surgery

Let’s be realistic here for a moment…. After surgery your surgeon with advise that you do not participate in any contact sport for around 8-12 weeks. Your surgeon will most likely say you can resume non-contact sports and exercise as soon as you are ready.

I have spoken to many people who have had jaw surgery and I do not know anyone that was able to participate in any kind of sport for the first 4 weeks post-surgery. You may be lucky and be recovered within a few weeks, but for most people this is not the case.

After jaw surgery there are many aspects that you need to bear in mind when planning the amount of time off you will require from work and school. It is also important to be realistic and not to plan too much too soon after your jaw surgery. Regardless of what the surgeons have told you, hardly anyone is recovered within two weeks. It is imperative that you do not partake in any heavy or contact sports for the first 8-12 weeks. It is also important that if you have had a bone graft or have any external wounds that you do not get them wet. All in all, that means no weights, no heavy sweaty cardio and no outside sport when it is likely to rain.

After surgery many people experience swelling, numbness and (sometimes) a vast amount of pain. There may also be complications caused by the surgery and your ability to breathe easily. This could mean nose bleeds, mucus build up in the nasal cavity or just general swelling around the top jaw, nose and cheeks. This makes exercise difficult.

You may also have existing or new issues relating to TMJ pain and/or posture. Many patients say their jaw joints hurt a lot after surgery and any exercise can cause pressure around the jaw joints.

Further to this, your body will be under immense stress due to the surgery itself and the dramatic change in diet. You will be losing weight and trying your hardest to maintain a nutritious and high calorie liquid or soft food diet.

Separately these issues may or may not affect your ability to participate in exercise, but after surgery the combination of these aspects can leave you feeling exhausted, weak, tired and dizzy. I would suggest asking a friend or family member to accompany you when exercising. At least for the first few weeks, while you get back on your feet and get back to some normality.




My story


Before surgery I was in immense pain. I have TMJ issues and Atypical Trigeminal Neuralgia. This meant that I experienced excoriating shooting and stabbing pain 24 hours a day 7 days a week. I was unable to exercise at all. The pain took over my life. I went from being a very energetic person who loved to ride my bike along the river Thames, go to the gym weekly, swimming, dancing to doing Pilates in my home living room, to a zombie, navigating between my day job and a full-time university honours degree. I was on Baclofen, Ibruprofen, Cocodomol 30/500mg 8x daily and Amitriptyline 30-70mg. Even so, before the surgery I was still quite strong, able to walk, stand and get through a day’s work.

When I woke up after surgery I was rigid from my eye socket down to my chest. I could hardly move my head, neck, shoulders or arms. The surgeon had no idea what had happened or why I was in so much pain. The medication continued to roll on and on and I was discharge 2 days after surgery.

After surgery I was unable to walk or stand for any period of time and would often faint or feel dizzy on the high dose of pain relief. My head also felt like it weighed a tonne and I needed to constantly support my head and neck. My face would swell up and burn if I did constantly use ice packs. After a few weeks I was starting to feel a little better so tried my hardest to go for a 5 or 10 minute walk each day or use my exercise bike on the easiest setting.

The combination of the anaesthetic, lack of food, pain, swelling, broken bones, external scars and sedative pain relief meant that I wasn’t fit for much and walked around like a zombie for a good 2 months after surgery.


Picture of me post surgery - Working on balance. As you can see my shoulders were still completely turned in. 


Is exercise good?


Exercise after jaw surgery is supposed to be really beneficial for reducing the level of swelling. It is also important to maintain good muscle tone as your body adjusts to the change in diet and your inactivity. However, even after a short walk my face would often burn up and turn bright red. I was so exhausted that I would need to have a sleep after any exercise. I lost around 12 lbs and 6 lbs of that was in the first week after surgery. The muscle wastage happened so quickly.

When I had my titanium, plates removed I attempted to go swimming 6 weeks after surgery. I only managed 50 metres and I had to stop. My face turned bright red and started to go hot and swell up. I was worried but went home to rest. After a couple of days my face recovered and the swelling decreased. After discussing this matter with my friend, he suggested that it could be due to the opening of the face and the rupturing of the capillaries, arteries or veins during my surgery. He suggested that I should stick to a lighter form of exercise for the time being.

Important note


The final note I would like to highlight would be that your jaw bones take 8-12 weeks to fully heal and even after this point the bones may be very weak. It is important to be conscious of the sports you are participating in and ensure you do not hit or put too much pressure on your face or jaws.

Do not push your body too hard, too fast. Ease back into exercise and your normal routine slowly. Do not participate in any contact sports for at least 8-12 weeks and only go back to it once you and your surgeon are happy for you to do so. No point going through all that pain and suffering just to set yourself back to square one.

Recommended blog post: http://steffies-orthognathic-surgery.blogspot.co.uk/2015/04/faq-orthognathic-surgery.html

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,

Steffie

x.x.x

Monday, 4 December 2017

Kissing after jaw surgery


This is a subject that pops up in my inbox time and time again. Until now, I must admit, the thought of writing a blog like this felt rather embarrassing. Family, friends and maybe my ex might read this, so I didn’t know if this was too personal of a subject.

Approaching my 30th birthday, I thought, why not, I talk to jaw patients about this all the time.
After surgery the thought of anyone coming anywhere near my head, let alone my lips, would send me into an anxious fit. Even my mum kissing my forehead scared the life out of me. I was numb from the eye socket down. I remember stroking my eyebrows as this was one of the only things I could feel. This gave me a sense of comfort and made me feel like it would be ok.

It was months before my nerves started to wake up and I am still COMPLETELY numb on both side of my bottom lip, chin and gums. People message me panicked all the time; “What if I am numb, can I kiss my boyfriend/ girlfriend?” The answer is, I can and so can you. Yes it is different because you don’t really know what your bottom lip is doing, but as long as your tongue isn’t numb and you can feel your top lip you will manage just fine.  

About your lips


For your lips to move and work efficiently, a complex system of muscles and other structures is required. The lips are made up of an upper lip and a lower lip, which are connected and form the transition point between the skin on the face and the lining of the mouth.

It is the flexibility of the lips that allows for people to express different emotions. This is due to the muscular structure responsible for controlling the lips, which allows great freedom of movement and is interconnected with the rest of the muscles on the face. It is because of these lip muscles that movements like whistling and kissing are possible.

After the surgery


After the surgery your nerves and muscles will be stretched and damaged. They have suffered great trauma. They may be swollen, painful and numb. This may cause dribbling, drooping and the swelling can make your face feel hot.

Over the course of a few months, your nerves will recover or wake up. You may experience itching and shooting pains as they start to rejuvenate. It is important to note it can take up to 18 months to 2 years for your nerves to fully recover.

The nerves that are damaged, stretched, broken or dead may never recover, but the helpful part is, all those muscles connected to the lips will still work. Once the swelling has subsided and the muscles have recovered, they will serve your new face, just as well as they did before. This means that you will still be able to talk, eat and kiss without having a drooping or dribbling mouth.

How long before I can kiss my partner?



It really does depend on your recovery. I would say no sooner than 2 weeks. You need to be careful. Nothing too passionate. Your face is broken in several places, remember!

On top of the broken bones, you also have swelling and pain. You need to ask yourself, how do you feel? Are you in pain? How confident would you feel about your partner touching your face? If the answer is, no or hardly any pain, you are confident and you are a few weeks post surgery, go for it, but be careful. Even if it feels ok at the time, you may find your jaw plays up a lot after. There are a lot of muscles involved in kissing. Muscles that have gone through a lot of trauma and need to recover. I didn’t kiss my partner for 2 months after surgery. It wasn’t nice, but I couldn’t have anyone near my face. When we did kiss, it was little pecks. I had to learn how to do everything again. Talk, kiss, chew etc. It was like being a teenager again, having my first kiss. How should I move my mouth, what should I do, am I dribbling? It was pretty stressful. My boyfriend at the time was very understanding so that was nice.

Does it feel different?


Once I had recovered, my bones had healed, my nerves were mostly awake and working fine, things became a little more “normal”. My muscles still hurt and my bottom lip, chin and gums are still numb. If my partner and I had a “make out” session it would hurt quite a lot afterwards. Not so much at the time, I am sure it was something to do with the endorphins that meant I felt less pain. But afterwards, it would hurt quite a lot. We split up 10 months after my original surgery. I had gone through a lot and was still recovering. Dealing with pain, infections and learning to live with my new face and he had fallen out of love with me and just didn’t think to finish it. I was single for a long long time after that. When I got into a relationship again, almost 2 years later, it was all new again. Even now, if I haven’t kissed for a while, I need to teach myself how to do it again. What way do my muscles have to move and where is my bottom lip in relation to the other person’s? While it is not ideal, I can still do it and I am LUCKY because my nerves are completely dead. I know some people who can’t kiss their partner’s because it hurts. I am used to eating and drinking now and no one else watching would ever know my lip was numb. I am sure my kissing technique has suffered, but there are worst things in life, right?

Be kind to yourself, don’t rush yourself and do what feels comfortable. Be patient with your recovery. I really do hope you have an understanding partner who won’t pressurise you or rush you into it.

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,

Steffie

x.x.x

Monday, 20 November 2017

Learning to live with limitations

I’ve been up, I’ve been down, I’ve been unwell, I live with pain and sometimes you just have to accept that things are just as they are supposed to be.

This year has been a rollercoaster for me. Battling my demons, taking on my body and fighting between duty and self respect.

I’m not here to share my struggles or my achievements with you, I’m here to let you know, even as you sit reading this, feeling scared or assured in yourself, anxious or calm, in pain or pain free, stressed or relaxed, tired or rested, lost or empowered, weak or strong, ashamed or proud, sad or happy, hopefully or hopeless that every moment you are living… you are doing just that. Living! You are awesome! You (your body) and your mind are doing several million processes all at once; breathing, smelling, sitting/ laying, standing, holding a phone, tablet or sitting with a laptop or computer, reading, seeing, holding your head up, healing, digesting, your heart is pumping oxygenated blood around your body. And a whole host of other processes!  You are just awesome! Yes your body might be in pain, or behaving in a distressing way or not working at a optimal level, but you are here, reading this, possibly searching the internet for answers, learning, connecting, communicating, influencing. You are here and you are doing the best you can.

What has 2017 taught me?


If I were to summaries what this year has brought me, I would summarise it as a sense of oneness and a little bit of acceptance. Not fully, but a little.

My limitations may always be there, but my body is amazing and I need to be thankful for that. The immense pain, the stress, the exhaustion, it’s me and that’s ok. It may have taken me 7 years longer than it should have but, I respect my body and what I do every day just to get through. Thinking back to just a few short years ago when I couldn’t even hold my “fat head” up for more than an hour, or stand in a queue for longer than 2 minutes or walk from my house to my car or get dressed unaided. Heck there was a time when my mother had to hold my phone up (because it was too heavy) just so I could text my friend’s and family. I should feel proud of that and not be ashamed. Sometimes things regress in life, you feel like you aren’t getting anywhere. Where one day after the other is just a cycle of pain, medication and a pure struggle to just get comfortable or sleep. But there will be moments (be them seconds, minutes, hours or days) where you will do something different. You’ll open your mouth a little wider, you’ll try a chip or a piece of bread, long term pain sufferers, you’ll take one less pill or get yourself out of bed, or call a friend. All while, breathing, pumping blood, thinking, planning, moving. How amazing!

Never belittle your achievements and please try not to compare yourself to others. You are special and amazing and you need to look after yourself.

I know things aren’t perfect, but where possible eat and drink well, open the curtains and the windows and get some fresh air, go for a little walk (if possible), surround yourself with glorious fragrances and beautiful images, quotes or photos, drink water, moisturise your skin (even if it’s just your hands), do your nails, or go any get them down, take a shower or bath, meditate, be proactive. Enjoy the small things in life and be kind to your body.

Lessons Learned


A few weeks ago I worked myself into a horrible bout of illness. I was sitting on the bathroom floor, in tears at 3am, bladder on fire (girls you know), kidneys in agony, vomiting, shaking, sipping water waiting for the antibiotics and pain meds to kicked in. I crawled from the bathroom to the bedroom, picked up my blue bunny (the one my nanny bought me and my favourite pillow), my phone and a lighter. I literally crawled back into the bathroom, lit the candles by my bath, turned off the light, sat on the floor, put on some soothing meditation on by Louise Hay and cuddled my teddy. I stayed there for some time, waiting for the meds to kick in and trusted everything was ok and I could trust my body to let me know what to do. I made a decision right there and then, enough was enough, I had to put myself first. Running my own business and working 60 hour work weeks was not sustainable. And what was I achieving. I had no quality of life, no friendships, relationships, hobbies, or self care, it had been months since I went for a massage, saw a psychologist or eaten properly. What was I doing to myself?

I was so scared of work drying up, letting my clients down, or worse letting myself and my family down that I was on the treadmill. I need to be able to pay my bills and I was scared that if I did get off that treadmill, I wouldn’t be able to get back on. I thought a few hours off a week will work ok, my body had other ideas. I was enduring the face and neck pain daily, pumping myself with pills and Sumitryptan nasal sprays. I started amitryptline again, dulling down my nerves and sending me to sleep every night. But now, I sat on my bathroom floor helpless and out of control. The only way things were going to get better was by partnering back up with my body and working as a team. I couldn’t keep mistreating it and not listening to it. After all it’s the only body I’ll ever have.

I’m back on the road to recovery now, eating better, working less, drinking more water, topping up with vitamin rich foods and supplements, signed back up with a psychologist, go for a massage every 2 weeks and I’m starting with a personal trainer on Wednesday doing 30 minute sessions per week.

So what I’m trying to say here is, whether you are recovering from jaw surgery, dealing with pain or just not treating yourself right. Acceptance of the current state of things and putting yourself and your mind and body first is so important. Trust me you deserve it. Be patient with yourself. You know you are doing a bloody great job!

This marks the start of a new phase in my life and I am looking forward to getting back to you all and my blog. I have several blog post ideas lined up and I am excited to get writing again.

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,

Steffie

x.x.x


Wednesday, 15 February 2017

Bad skin and sore lips after jaw surgery

After jaw surgery your body will be full of drugs and anaesthetic. In most cases you will not be eating or drinking as much as you usually do. You may also be covered in the yellow iodine used to clean the area during surgery. As a result of these factors you may find you break out in spots or hives. Or alternatively, you may find your skin is very dry and peeling. Providing you do not have any external scars you can resume your usual skin care routine and make sure you drink plenty of water. However, if you have external scars, like I did, you may have to adapt the way you clean your face.

Cleaning my face after surgery


After surgery I had several external stitches and as mentioned in my previous blog, a very sore bloody nose dot between my eyes. When I was first home from hospital I cleaned my face using cotton wool and warm water (avoiding the wound areas). It is really important that you use a mirror and fully wring out the cotton wool to avoid any drips falling onto your wound sites or stitches.

Within a few days I was using sensitive perfume-free baby wipes to wipe my face after food or medicine. These were great for a quick freshen up. My skin was really dry, red and at times was very sore. I invested in a good night cream for sensitive skin by Olay and used cotton wool with E45 after I had a bath. Other patients who have very sensitive skin suggest using organic Aloe Vera products during their recovery. Personally, I have tried quite a few of these natural products and none of them worked particularly well and none of them provided the level of moisturisation my skin needed. However, this isn’t to say that they will not work for you.



Very sore peeling lips


During the surgery the main body of work happens inside the mouth, but on rare occasions small cuts can be found around the mouth area after surgery. This is due to the extensive pulling and stretching of the mouth during surgery. These small cuts are usually less than 5mm in size but can be quite tender and red in the early stages of recovery. Something that I was all too familiar with during my recovery. When I woke up I remember feeling like someone had tried to literally rip my bottom jaw off. My lips were so swollen and cut that I did not think I would ever be able to shut them again.

I had a very sore and dry mouth area after surgery. Each corner of my mouth was quite swollen, sore and slightly ripped. To combat this, I used Vaseline in the early weeks after surgery and bought an intense lip moisturiser once my lips started to properly peel and heal. It is important to note that this is completely normal and the area of redness can last for up to 10 months before fully healing. It does not usually leave a permanent scar.



Stitches removed after jaw surgery


Once I had my stitches removed, my surgeon told me to moisturise the area so the scars would fade. I used e45 body lotion on my face every day and also rubbed a small amount of vitamin e oil onto the scars before bedtime. My scars have almost completely disappeared and the only time they are noticeable is when I point them out to someone on a sunny day or when I have a tan (scars do not tan).



It is not uncommon for people who have had this operation or similar operations to have skin complaints after surgery. Some patients I have spoken to have had really greasy and unmanageable skin after surgery. Others had a very similar experience to me. I am lucky because my skin is no longer dry and I do not get any spots or skin complaints since the operation and this is the same story for most other jaw surgery patients.

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,

Steffie

x.x.x





Wednesday, 11 January 2017

The Nose Dot

So what exactly am I talking about here? After surgery I woke up in the recovery room, in agony and totally groggy. I woke up with weird numbness and a crazy level of pain radiating along my jaw, down my neck, back and shoulders. meaning I was completely paralysed in these areas and unable to move my head. On top of that, I had a splint in my mouth, which was not holding in place my bottom teeth, as I now had a 3mm overbite and I had a lot of excess saliva in my mouth. Anyway, besides all of this going on, I was very aware of how painful the bridge of my nose felt. It was so painful that I actually thought it had been broken. I didn't remember my surgeon talking about a nose job and I had no way of checking what was going on or why it hurt so much. 




I was wheeled back to my room an hour later to be welcomed by the sight of my mum's horrified face. I had external stitches and a noticeable red dot in between my eyebrows. All of which I was totally unaware of and too drugged up to care about. 

After a couple of days in hospital I was able to look in the mirror and see the images mum had taken of me on her camera phone. It was then I noticed the bloody scab between my eyes and what seemed to be the main cause of all my nose pain. 



Before I was discharged I had to have the splint removed by my surgeon's assistant. It was causing me to gag and produce a lot of saliva. And it was also restricting me from drinking and swallowing properly. When he removed the splint I was finally able to talk with a little more clarity. It was then that I asked what had happened to my nose.



My surgeon's assistant went on to tell me that the dot was caused by a pin that had been inserted into my face during the operation in order for my surgeon to use as a reference point to align my jaws. He assured me that my nose wasn't broken, but admitted that he was quite baffled as to why it was causing me so much pain. 

Over the next few weeks I visited the hospital for a weekly check up and was told to avoid my stitches when washing my face. I was told that my nose dot would disappear within a few weeks, the pain would subside and the dot would simply dry up like scab and fall off. 



It went on for weeks. I was careful not to scrub it and gently patted it with wet cotton wool when I washed my face. Eventually the scab fell off, revealing what I felt like, was a mammoth hole in my face. As we can see from the images, it was not big, nor a hole, but merely a small dent. To be honest, I was mainly annoyed that I'd never been told anything about this pin or the possibly of it marking my face. Thankfully, the pain in my nose had died down and I was only left with the dent. The dent that I still have to this day. 


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,

Steffie

x.x.x

Wednesday, 28 December 2016

I still wear my retainers

Hi All,

Hope you all had a good Christmas and are all prepped for the New Year. With most of this week off work I thought it would be a perfect time to blog about my ongoing retainer drama.

Believe it or not, I still wear both my upper and lower plastic (Essix) retainers at least one night a week. Although my surgery was over 5 years ago, I still suffer from muscular and nerve pain in my face, neck, shoulders and head. This is made worse when I do not wear my retainers at least one night per week. The retainers not only keep my teeth in position, but they also act as a vice holding everything neatly in line while I sleep.

When I initially put the retainers in, the lower ones always hurt and feel tight. A painkiller usually settles this down and I use a heat pad around my face to relax my muscles. Once I get off to sleep the pain subsides and does not return. When I take the retainers out in the morning they are rather disgusting, my teeth feel horrible and smelly, but both my face and teeth feel better for it.

A decade ago, wearing a retainer for more than a year or so after brace work was unheard of. But recent evidence has shown that the only way to 100% guarantee that your teeth won’t move and they remain straight is to wear a retainer once or twice a week or a fixed retainer indefinitely.

Do I have to wear retainers for the rest of my life?


It is a commonly known fact that the roots of your teeth are held in place by fibrous tissue that stretch and adapt while undergoing orthodontic treatment. Some of these fibres are moved and remoulded while undergoing orthodontic treatment. But not all stay that way. This means that the fibres that do not remould or stay in their new position try to spring back to their original positions. Thus, causing your teeth to move with them. Without braces or retainers to hold them in place, relapse can occur. Some people are lucky and their teeth do not move post-orthodontic treatment, but for most of us they do. I do not know about you, but I do not fancy going through any of this again.

So coming to terms with the fact you will have to wear retainers for the rest of life is a bit of a tough one. I do not like being reminded of my operations and it is hard to explain to new people why I have a jar in my travel bag that looks like false teeth. But there really wasn’t another viable alternative for me. While there are several options for retainers: Hawley, Essix and Permanent retainers, my only viable option was the Essix retainers. Hawley retainers made me gag and produce so much saliva I almost drown. And Permanent retainers restrict proper teeth cleaning. When I was young, Sidcup hospital took a lot of teeth out, much to my later orthognathic team’s dismay. This means that while my teeth are straight, I have larger gaps between them and I must floss and get them cleaned a little more often that the average person. This in turn means that a Permanent retainer was out of the question for me. On top of this, the last time I had a fixed appliance added to my back teeth, tissue grew over the metal and these had to be yanked out.



Cost of retainers


I have had my retainers now for 5 years and I have had them replaced by the hospital free of charge 2x. I have now been discharged for my orthodontist at Guy’s hospital, so if I needed a new retainer I would have to go to central London and pay £150 for each new retainer or £300 each at my local London dentist. A few weeks ago, right before Christmas my trusted bottom retainer broke. I have had this retainer for 4 years and it simply split in half. Ok I hear you say, no big deal. Well the problem was I had not worn my retainers for a couple of weeks previously because I was very unwell with sickness and Kidney issues. All in all I had not worn my most needed retainer for almost a month. My teeth were painful, my jaw was being pulled in a different direction and my neck muscles were in a right state. Working and living up in Essex and having a busy work load in the run up to Christmas meant I had little time or option but to try and source a local alternative and hope they were not £300 each.

After a quick Google search I found 2 local dentists who provide orthodontics and retainers. After emails and telephone calls neither got back to me. It was then I remembered one of REM’s clients Thaxted Dental now provided orthodontic treatment. After a quick email, I was provided with a quote for only £69. A whopping £81 cheaper than the hospital. I booked an appointment for the same week and was on my way.

Being the first time in 11 years since I let anyone touch my face, jaw or teeth, I was a little scared. I even cried before I went in. But they were lovely and really put me at ease. The impressions were taken first time and they used the correct size mould. Often the hospital try to use huge moulds that hurt my jaw and face and they end up getting the paste in my hair and all over my face. But Thaxted Dental were great and really knew what they were doing. I was so impressed I even booked myself a hygiene appointment for the end of January.

I received an email to collect my retainer the day before Christmas Eve and popped by before work to pick them up. Unfortunately, I did not have enough time before the Christmas break to book an appointment and I was really desperate to get my bottom retainer. In hindsight, it is always best to get the dentist or the ortho to fit the retainer and ensure it doesn’t rub or dig in anywhere. When I got home I realised the retainer had a few issues and was really tight. So, tight I almost couldn’t get it off again. It digs into my gum and it is quite low set compared to my hospital equivalents. The retainer itself is also quite a lot lighter and thinner than my previous hospital made ones. I am going back on Friday to have it filed down and adjusted.

In a panic and in agony on top of Christmas, I decided to try and put the two broken pieces of my old retainer into my mouth.  Luckily, they fitted and they did not cut my tongue. I also booked myself for a hot stone massage at a beauty salon not far from my house. It was heavenly and I felt so much better after a massage, some pain relief and a good night with my retainers in. I have been wearing these on and off for the past few days as my teeth are really tender.



How to clean my plastic retainers?


This is a question I get asked a lot and I always couple this with some friendly general oral hygiene advice. When you first get your retainers you will have to wear them most of time and eating and drinking can become quite a chore.

While you are wearing the retainers continuously, please ensure you brush every couple of hours and avoid drinking anything that is not water while you wear them. When it comes down to wearing them of a night time only, this is when it becomes a lot easier.

So here is my routine for cleaning and inserting my retainers:


  1. Brush your teeth using an electric toothbrush using a standard toothpaste.
  2. Once complete, floss and follow up with a non-alcohol based mouthwash.
  3. (Optional): I then use a baking soda based toothpaste (e.g. Eucryl or Arm & Hammer) but you can use your general toothpaste.
  4. Simply brush your teeth again lightly moving your brush in circular movements around all your teeth. At this point you do not rinse your mouth out.
  5. Using a brush and a little dot of the same toothpaste, pick up your retainers and generally clean them.  Rinse them under the cold water tap and place in your mouth.
  6. After you wake in the morning, remove the retainer, rinse under cold water and place into a cup or container. Thoroughly brush your teeth, floss and use a gentle mouthwash. Moving back to the retainer container, pop in some cold water and a Steradent tablet. Yes, the same type your nan uses for her false teeth. Leave the retainers to soak in the cold mixture for the rest of the day and rinse and brush again before wear.


After going through years of braces and surgery it seems silly not to look after teeth and ensure that you can enjoy your new bite and smile to the absolute maximum. If you do not regularly clean your teeth and retainers properly you will find your teeth will start to become translucent, stain and decay. Moreover, you retainers will need to be replaced more frequently and that can become very costly.

So, there you have it, a run down of my pre-Christmas retainer drama and my top tips on how to keep your retainers in great condition. I will be blogging more in the New Year and I look forward to speak with you all then.

In the meantime, wishing you and your loved ones a Happy Pain and Stress Free New Year and a prosperous 2017.



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,

Steffie

x.x.x


Wednesday, 21 December 2016

Jaw pain in the Winter

Winter is finally upon us and although mild weather so far, I still find my jaw plays up horribly. Cold, damp, foggy or snowy weather is the arch enemy of us jaw patients. 

Ever since my first surgery back in 2011 my jaw has played up terribly in cold weather. At first I thought it was all to do with the metal plates and screws, but as the years have gone on and my plates have been removed, I have come to discover that it much more complex than that.

When I had my upper and lower plates and screws in place, the cold would literally sting my face and nose. I was really uncomfortable and at times it was so bad it made my eyes water. A year after my original orthognathic surgery I asked my surgeon to remove all my plates and screws. The upper screws were in my naval cavity and causing horrible sinus infections and because of the lack of flesh around my lower jaw, the lower screws were close to the surface and causing my nerves and muscles to fire up.

I had my plates and screws removed in the December of 2012. After my plates were removed I could breathe so much better and more freely and there was a lot let tension around my lower jaw. However, I still found it really painful to go out in the cold.

According to studies, changes in barometric pressure and temperature drops can trigger pain by causing air pockets throughout the body to expand and/or shrink, putting pressure on the nerves and muscles. Winter can be the worst for jaw joints because the atmosphere is continuously altering and becoming colder. In warm, dry weather, your joints tend to be naturally looser, but they can tighten up, tremble, and contract when it is cold or damp outside.

So here is what I do to try and combat the cold:

1. I try to reduce the amount of time I spend outside in the cold and opt for warm and comfortable locations. I am practically a hermit in the winter months and I really look forward to getting home and snuggling up on the sofa with my neck support and warm blanket.

2. I opt to always wear a scarf, inside and outside. When I am indoors, I drape a scarf around my neck and shoulders to avoid drafts and chills. When I go outside, I wrap the scarf around my face and neck and cover my head and ears with a fluffy warm hat. Some people take it a step further and buy a Balaclava or ski mask to protect their face from the cold. I also always ensure that I wear gloves. Sounds silly, but when my hands are cold it makes me tense up and this puts pressure on my shoulders and jaw. The gloves also restrict the nerves that run from the neck to the fingertips from firing off.



3. When I get home, usually the first thing I do is run a hot bath or have a hot drink and wrap a microwave heat pack around my face and ears. When I have a hot bath, I try to add Epsom bath salts and some aromatherapy oils to help clear my airways and help relieve the pressure and compression on my sinuses caused by the cold weather. This feels so nice when I am in a lot pain and it is one of the things I look forward to most.

4. After my hot bath or shower, I also use SBC Camphor & Menthol Massage Gel. My friend Theresa bought this for me last year and I only started using it the past couple of months. What an amazing product. After I am fully dry I gently rub it into the top of my shoulders, neck, my temples and my jaw joints and wait for it to work its magic. I wrap up in my fluffy dressing gown and my PJs, take my pain relief and curl up on the sofa.

5. I drink plenty of water. My house is like a remake of Signs with water bottles everywhere. I drink around 2-3 litres of water every day and also drink more black tea in the winter. Green tea is also great to help reduce the amount of mucus in your airways.
6. Finally, I ensure that I maintain a good balanced diet and take multivitamins, omega fish oils, green tea extract, coconut oil, aloe vera, acai berry and raspberry ketones.


I think with most things, we cannot expect to fully escape jaw and face pain at this time of year, but we can treat ourselves with a little more compassion and care. Treat yourself to some TLC, pamper yourself and relax as much as you can.

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,

Steffie

x.x.x



Merry Christmas and Happy Holidays. Wishing you every happiness this holiday season. Speak to you all soon!




Wednesday, 7 December 2016

You Can't Get Used to Pain!

A couple of weeks ago I was in a really bad place. To be honest, things aren’t that much better now. During this time I had an interesting conversation about pain and my ability to cope. Since the attack at the age of 18 my anxiety levels have been rather erratic. With the anxiety and stress comes more pain. I suffer from migraines, face, neck, shoulder and arm pain. Both neurologic and muscular. This can sometimes completely wiped me out and leave me unable to communicate. The pain is totally debilitating to the point where I feel sick and I can’t form my sentences properly. With this comes total withdrawal; mentally, physically and spiritually. I shut down; emotionally and physically, while I try to deal with the pain. In this time, I find it hard to communicate, I cannot get comfortable and I cannot lift or move my arms and hands freely. This happens a lot and most of the time I can hide it from co-workers or acquaintances, however, I cannot hide it from my family and friends. Especially those who I live with.

While I try to reassure my loved ones, and tell them that I am ok and that I am just in a lot of pain and need some time, it is hard to live with someone who is like Jekyll and Hyde. One minute I am happy and chatty and looking forward to my day, then within half an hour I can be an angry mute who just wants to be left alone. The only thing that really helps is a massage. This relaxes me mentally and physically and loosens the muscles and in turn the nerves. Unfortunately, I am not a millionaire so an on-call massage therapist is out of the question. So for the most part I try to stretch the spasmed muscles and rely on medication (something I hate). Without the medication I would be unable to have any quality of life. 

From being ill a lot of the time, over time people’s sympathy and empathy diminishes. Unfortunately, for us long term pain suffers the pain doesn’t. During the conversation about my pain and my stress my friend said: “surely you should be used to the pain by now!” When you live with pain every day, day in day out, surely that becomes the norm and you learn to get on with it?” He pointed out, that unlike others who think they are dying after one day of a bad head cold, I somehow must have become used to this pain, even immune to it by now and be able to function the same as any other human being who lives day to day without pain.

I know there will be a few of you raging as you read that. I was a little taken aback myself. Especially beings as he is an intelligent chap. But alas, he obviously does not understand. I am not taking this as an opportunity to bad mouth him or discount his view in anyway. He has never even set foot in a hospital in his life, so he can not even begin to understand or sympathise with a chronic pain patient. He doesn’t understand other people or the struggle they go through. The conversation did make me a little sad. Part of me felt weak, needy and angry at myself because I have to rely on people to help me and the other part felt totally sad and helpless. 

For all those people who live with someone with long term illnesses or pain, just for the record you can never get used to pain. Pain is not a natural state of being. Pain restricts your ability to do things and really impacts on your hormones and your ability to feel happiness. Over time it wears you down and it often means that you are more prone to other illnesses and disease. Not only this, but situations that an average person can cope with just fine, can become a big deal for a chronic pain patient. Being in a constant state of pain is tiring and frustrating. And it can also be very isolating.

I know being back at work and working from an office desk can be quite a challenge and that is one of the reasons why I cannot undertake a full time job. By 11-12 o’clock every day out come the strong pain meds and there with it goes part of my functioning brain. I try and stretch out and take a walk to the toilet. But once the muscles have spasmed and the nerves start to fire off, the only hope I have is to numb the pain a little. The rest of my work day is a bit of a nightmare. Lunch is often unappetising and the pain makes me feel sick. When I am trying to type and use the mouse, the nerve running down my neck, arm and hand starts to fire off. This then leads to the trigeminal nerve firing off and my head and neck muscles becoming so stiff and pressurised that I am sitting at my work station hoping that someone will actually chop my head off.

I also can not drive too far or stand or walk for too long. Christmas shopping is an absolute no-no and I opt to buy my gifts online. Doing my own hair is a challenge so I opt to let it dry naturally or when I can I pay the hairdresser to dry and straighten it. Ironing is another no-no, I cannot even lift the board and the iron to get it set up without triggering pain, so I still rely on my mum to help me. Large boxes, bottles, pans, casserole dishes, bags of washing, laptop bags, shopping bags, pull handle doors and anything else that is heavier than a 500ml bottle of water physically hurts me to lift or move.

Unfortunately, for thousands of people all over the world, pain is a constant and daily battle. One that you cannot often see being fought. People often make jokes about my weakness and limitations but it is a reality for me. I would love to be NORMAL. And even typing this now, my eyes are filling with tears. I feel so flawed as a human being. This article isn’t supposed to be a woe is me moment, it is supposed to help you understand what chronic pain patients go through.

Many patients are worse off than me. The drugs cannot contain their pain and they are suicidal and bedridden. Some people are in so much pain they cannot physically talk, stand or lift a thing. I know I am lucky in that respect and I know I need to learn to love myself and embrace the pain because the pain is part of who I am and it has lead me to the place I am at now. Unfortunately, I resent it, I hate myself for not being able to fix me, to be stronger and to be more stable. It is a constant battle, body and mind and one that I know I need to approach with more compassion.

I'm Sorry!


On a final note, I have received a few nasty messages over the past few months and I want to say for the record I am sorry if you think I have let you down. I am sorry I can not be there for you all and make all your pain go away. I feel guilt every day that I do not respond or blog. There are only so many hours in the day and in between my job, running my own house, going to my appointments, dealing with extreme tiredness and my pain and trying to see my mother and brother, I do not have a lot of time or energy to do much else. Mentally and physically I feel broken. When I usually have a spare hour after sorting everything out at the end of a long day at work, I am in so much pain and so drugged up that I can hardly speak, let alone read, reply and blog. I just want to curl up with my heat pack and sleep. Unlike what some people believe, my battle is still on going, I have not been cured and I suffer, just like you do every day. 

I also lost my God Mother Ann in October after her battle with cancer. And this is another reason why I have been so quiet. Ann was one of the closest and most constant people in my life. She has been there for me since the day of my birth, came with me to the hospital appointments when my mother couldn’t make. She was at christenings, birthdays, Christmas and even supported us all when my baby brother Arran died. My mum and brother were able to be with her son by her side when she passed away. She was an amazingly strong and wise woman and I know that me, my brother and my mum are going to miss her dearly.

Despite everything I have going on, please know, I am sorry and I will try my best to get back to you all. I receive so many messages and some often get missed in the message request file. I set up this blog to help people and to make sure people do not feel alone and I know my lack of response or recent blogs goes against that. I cannot make any promises that things are going to get better, because my health has been bad recently to the point where I thought I was going to lose my job. But I will try my hardest to get around to blogging and replying a little more than I am now.

Thank you as always for the support and I shall speak to you soon.

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,

Steffie

x.x.x