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...
