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.
