Happy old and new year!

Another year is just a few hours away from becoming a memory. Looking back I can say that it was an important year for my myasthenia. I had my thymectomy in January and my condition has been stable throughout the whole year (I don’t think I’ve ever been so grateful for my good health!). My eye patches and prisms glasses are gathering dust and coming across them every now and then I just can’t believe that I was wearing them not so long ago. I had my second diagnosis ‘anniversary’ in November and am feeling more positive that the symptoms will stay ocular. Will I be one of the 10-15% of patients whose disease remains exclusively ocular for the rest of life? That is what I was hoping for a couple of years ago! The risk of generalization is highest in the first year after onset. Approximately 85% of patients have generalized disease within that time frame. Reading through medical studies I have found out that the risk of generalization is significantly reduced after two years. This gives me big hopes that my ocular myasthenia will not progress into anything nastier from now on.

I continue to take Mestinon (Pyridostigmine) which is the only medication I have been taking since onset. I don’t know if it makes any difference at this stage and the doctors cannot say what the consequences would be if I decide to discontinue the treatment. So far I have managed to reduce it from 180mg just after the surgery to 30mg daily. I have not been bothered by any muscular twitches since which was definitely a side-effect of the medication. However I am reluctant to go off medication completely due to the fears that if something goes wrong I will blame myself for not keeping things under control. Who knows, maybe the medication is one factor that has contributed to the stabilization of my disease. I am sure that the thymectomy has also played a major role. The proof is that my anti–acetylcholine receptor (AChR) antibody test has recently shown a drop from 25 (levels at onset) to 13 (while normal levels are below 5!). This has been reflected by the absence of double vision episodes which have been quite severe during my first year with MG.

In terms of treatment, I still see my neurologist every six months for routine checks but I have just been discharged from the Orthoptics department as they consider that my vision has been normal for the past six months. As the appointment was just yesterday it gave me a good feeling towards the end of the year which I wanted to share with you now during the festive season (yet another reason to celebrate!).

I wish you all a happy New Year with best health and positive thinking!

  

Under recovery

Days after the thymectomy just over three months ago I was screaming in pain so excruciating that I almost lost my hope that life will ever get back on its normal track. It has been an uneventful period of time from a medical point of view since my discharge from Oxford. Local follow-ups have been arranged with neurologists but unfortunately I haven’t been seen by anyone up to date. My appointment with a neurologist in April has been rescheduled in December which certainly beats my records for waiting times with the NHS (eight months waiting for an appointment which has been cancelled from their end seems far too much and a follow-up almost one year after the surgery is not at all what I expected as a patient - and a patient person). This was so disappointing but I am still trying to chase this up and arrange an earlier appointment if possible. If not then I will certainly look into seeking for a second opinion with a private neurologist. I was expecting to have some tests repeated e.g. the blood test for acetylcholine just to check if the surgery has made a difference or the improvements I feel are only a placebo effect of the surgery which I put all my hopes in.

My post-surgery histological report was very brief and mentioned ‘very occasional lymphoid follicles with germinal centres but this is not a prominent feature. There is no evidence of neoplasia’ – which I took as a good news despite not having this information properly ‘translated’ by a doctor. Dr. Google has helped me once more to make sense of the medical terms but still I don’t want to make an habit out of consulting the Internet rather than a doctor (doctor who?!).

All in all, I am very pleased with how things have progressed since the surgery. The pain subsided completely a couple of weeks after the operation but has started again around the main incision six weeks after that most likely because of my negligence... You never give your 12-stone partner a piggy-back while you are still under recovery! Probably it is too early to say whether it has been a successful intervention or not after only three months but I am certainly feeling better compared to the times when everything seemed to be a bit of a struggle. My scars have been healing nicely and they are hardly noticeable now. In terms of double vision, I experience this only very rarely – for instance when I doze on the bus and wake up minutes after that but definitely not after a good night sleep which was the case before. Unfortunately I am still feeling dizzy sometimes which I am not sure if is caused by the problems with my eyes or whether the issues are of a different nature (my diagnostic creativity or just to put it in plain words - health anxiety has been developing steadily over the past year!).

Following some experimentations with the medication as recommended by a neurologist in Oxford, I have reduced the Mestinon dose to 60mg or even 30mg a day (at least three times less than the maximum dose I had prior to the surgery - 180mg). I don’t feel any difference in myself except less side effects - mainly decreased muscle twitches or spasms which are almost gone now. I am unsure whether my high energy levels recently are due to this change of medication, the effects of the surgery or just divine providence. With all this energy going on, I am finally back to the gym more determined than ever after a painful (literally and figuratively) couple of months break. I have already noticed some progress in strength which is extremely promising for someone anxious that the general muscle weakness can install anytime now (this is normally the route for approximately 90% of people with MG!). My hopes are that the chances for MG to generalize are significantly decreased after the first year of illness but the risk is still there. I think that the exercise (which now consists of mainly lifting weights which target the main muscle groups – arms, legs, back, chest, shoulders etc.) played and continues to play a major role in my recovery and MG management (at least as much as the love and care from my partner and family plays on a psychological level and prayers on a spiritual one). One day I plan to write a more detailed entry concerning the exercise and the diet just in case this information could be of any help for people with similar symptoms.

Until then all I can say is that I am grateful for where I am symptom-wise at this stage and am fully enjoying my life – personal and professional. Two weeks after the surgery I have returned to work on a phased schedule and despite dealing with a series of crises at my workplace I think that I am coping much better than I expected. I am continuously learning how to better deal with stress which definitely does not do this illness or any other physical or mental illness any favours. Although I am working with vulnerable people (or probably because of that?) I am also learning how to better protect myself and look after myself with all the kindness and compassion I can always offer to others.

Time for thymectomy

I stepped into the operating theatre less anxious than I expected. The thought that the thymectomy might be my chance to get better has helped me overcome all the fears related to what could go wrong during the surgery. Risks like infections, internal bleeding, conversion to sternotomy, phrenic nerve injury, or even death were all listed prior to the surgery (well defined but in reality with very low chances – 1%).  

My surgery was scheduled at 7.30am last Tuesday at the John Radcliffe Hospital in Oxford. Unfortunately I had to wait until 11am due to an emergency the surgeon had that morning (at least this time my surgery has not been cancelled again!). The waiting was so tiring that I was all numb and resigned by the time I was taken to the operating theatre. I just wanted to have this out of my way no matter what. Six hours later my thymus and I have happily parted full of hopes and pain. Although the procedure was VATS thymectomy which is less invasive than the transsternal surgery, the levels of pain shortly after the general anaesthesia have been excruciating. I have spent the whole night on morphine and oxygen as I was not able to breathe properly. Deep breaths would have caused a great deal of pain just below my chest. Turning from one side to another in bed also has been a challenge due to the incisions. There were six such incisions – three on each side of my chest as pictured. Five of them are only 1-1.5cm and the big one has 3-4 cm. This is where my thymus was extracted through and it was the most painful area for at least 48 hours after the surgery. After that other small pains and aches developed with varied levels of intensity (chest, ribs, etc.)

It has been exactly a week since I have been discharged. I have spent two nights in the hospital and during the third day I was on my feet ready to go home. Not without problems though the most significant one being extreme shortness of breath. Walking 50m made me breathe like I ran 10 minutes on the treadmill with a high incline. Not to mention climbing the stairs which continues to be a challenge as I live on the second floor with a generous number of stairs. The distance I am able to walk now has increased day by day and the pain which stopped me from sleeping at night has decreased significantly and is now manageable without any painkillers (Paracetamol and Ibuprofen were initially prescribed by the doctors for this purpose).

I am not sure whether this is only a psychological effect, but one of the first sensations I felt after the surgery was a ‘lightness’ of my eyes. They did not feel so heavy and difficult to focus when looking around. The double vision is still present in my lateral gaze and I don’t expect this to change soon. I was told that improvements could take weeks, months, or years to show (if ever). The chances to get better are 50-60% (how I love numbers!). Again not sure if this is related to the surgery but immediately after the procedure I didn’t feel any major random twitches in my muscles like I did before. I was told that the medication (Mestinon/Pyridostigmine 60mg three times a day) might have caused that and my neurologist encouraged me to experiment more by adjusting the dosage or time intervals between administrations. I am currently on 30mg three times a day as I decided to half the dosage and see how it impacts on my myasthenia. So far I can’t say that I’ve noticed any difference which makes me reflect again on whether this medication has any real benefits. I hope that the levels of anti-bodies presumably secreted by the thymus would decrease in time so they won’t attack my muscle receptors anymore which is the main issue with ocular and generalized myasthenia.

Now that I have made a short story so long I might add some more paragraphs! I have been off work for a couple of weeks and I’m far from being recovered completely. I have been advised to return to work in stages and contact the Occupational Therapy at my workplace. Monday is going to be my first day at work and I am feeling quite apprehensive as I still struggle to walk to work (which is only 15 minutes away). Also I get very short of breath when talking which is the main nature of my job (not to mention about walking and talking at the same time!). On the other hand I can’t wait to leave the house and gradually rebuild my old routine. The gym is the activity I miss the most but I am not allowed to do any exercise of lift any weights for another six weeks. 

Finally, time to thank... Thousand thanks go to... my partner who was so wonderful and supportive (he has even forgiven me for pretending not to recognize him while I was in intensive care – bad joke, I know!). My friends and family have had so many kind words for me and helped my morale a lot during this experience. Dionisios Stavroulias who was my surgeon has done a great job without any complications and a ‘Thank You’ card is on its way. I don’t have words to express how grateful I am for all the efforts he and his team have made. I have also been looked after by the Myasthenia Clinic in Oxford (sister Mary and Dr. Hilton-Jones) who reassured me all the time and followed up my progress and recuperation thoroughly. 

This is how the beginning of my New Year looks like which I hope is going to be healthy and wealthy, happy and full of nice surprises. For me and for you all...