Dexamethasone but no CT Scan

Super Nurse just called. She asked how I was doing and referred to my voice mail. She had spoken with the Neuro-Surgeon and they agreed that in case the headache would have become less (disappear) that I can reduce the Dexamethasone. That is however not the case. To minimise the side effects of the Dexamethasone (without knowing I have several: thick feet, desire to eat more, feeling tense and hyper) she gave some advise on how to counter them:

• Put my feet up in bed
• Take the Dexamethason around 18:00
• Don’t drink tea and coffee in the evening but warm milk (forms a protective layer in your stomach)
• Don’t eat too much
• Take up to 6 paracetamol per day against the headaches

I asked her for an additional CT scan but it seems that makes no sense. The CT scan will not reveal anything in more detail as long as the edema is there. She understood my concern about the grade 3 Glioma but explained that although a grade 3 grows faster than a grade 2 it will not be an explosive growth. She will contact me again on Thursday the 3rd of April to discuss my situation. If the headaches have become worse or I have started to throw up (especially during the night) I have to call the hospital immediately.

I have decided to now start regularly take two (harmless) homeopathic drugs my mother suggested me to use:

• Cinnabaris (D6) which helps very well against Sinusitis to avoid confusing the headache caused by the edema
• Zincum Valerianicum (D6) which helps to calm down a bit

Endema?

Today will be a busy day and it started with a lousy night. Although I didn’t drink anything last night (coffee, tea, water) after dinner and went to bed around midnight did I wake up every hour of the night to go the toilet. I have a numbing headache (it’s always there but not really painful, a kind of permanent pressure)  on top of my head on the left side.

My gastric acid levels are still high, the pain in my stomach has not become less. Again, it is not unbearable at all but just an indication that I probably should do something about it. During my working period in Italy have I learned to appreciate espresso and although I already cut down on it (max. two cups per day) do I now think I should not drink it at all in the evening. Every evening my sweetheart Monling prepares a dish with different kinds of fresh fruit for me. Thanks baby, I love it!

I would like to have another CT scan made and have it compared with the CT scan of the 22nd of March. I suspect that the endema has not become better and if that is the case this could mean something for the activity of the Glioma. I’ll try to approach this positively, believe that as the 24th of April draws closer that also psychosomatic factors are going to play a roll but I need to know. Enough is enough. I left a voice mail with Super Nurse.

Seizure II

Yesterday, while feeding the cats, I was struck by a seizure (for the second time). I felt the seizure coming and was able to tell my wife to call an ambulance before the convulsions really started. I didn’t loose consciousness (neither did I bit my tongue etc.) but after the seizure I was unable to move my right arm, hand and leg like this first time in Japan. The fire brigade had to come to transport me out of our house through a window on the first floor. Must have been quite a show, the whole neighbourhood was present. Under different circumstances I may have enjoyed it as well.

I was taken to the same hospital where I went before (the hospital that will perform the surgery). On the first aid department of the hospital we had to wait for hours. Blood-pressure was high (170 over 100) and once a nurse was able to get a blood sample through the IV (finally she gave up and used a normal needle) all lab results proved normal. I had a Posticatal Paresis (a partial paralyzes that happens especially in case of a clonic-tonic attack) in my right leg. Slowly I recovered the feeling in my arm and hand but my leg remained paralyzed.

My parents came and when it became clear that walking the stairs at home would be no option did they volunteer to get me some support equipment to turn our downstairs into a bedroom/toilet/bathroom. They had a hard time finding the home care center and were only just in time. Thanks guys for the trouble!

The Neurologist on duty called my Neuro-Surgeon and they agreed to perform a CT scan. One scan without and one with contrast liquid. The outcome was an Cerebral Oedema and a slight Midline Shift. I’m especially concerned about the midline shift as this is a condition where one side of the brain pushes aside the other.

The Neurologist prescribed an increase of Keppra (500mg 2 times daily has become 500mg 3 times daily) and Dexamethason (4mg twice daily). Dexamethasone is is used to counteract the development of Oedema. I will be contacted by the team of Neuro-Surgeons to discuss the way forward.

I hope that this seizure at least increases my priority. Especially the The Cerebral Oedema may be caused by a partial increase of the grade of the Glioma (from grade 2 to a partial 3). I was allowed to go home, had a delicious dinner made by my sweetheart and went to bed.