Again…

…I have not been writing for a long time. Some time ago, my father died after a short illness. He was 84, so I guess it was not completely unexpected, still difficult. However, around Christmas, I noticed that I anyhow had managed all that had happened around his illness, death and funeral surprisingly well – physically speaking. This betterment has continued now during January too, so maybe the extra weakness and pain from the hormone imbalances and pituitary surgery last spring finally is going away.

I also now know that the MR brain scan in September showed a ‘clean’ pituitary! They didn’t see any residual tumour tissue on those pictures. Of course, in the end, there could be some few cells left, that slowly will continue to grow again, but for now everything looks fine.

In the autumn, I was also referred to a new specialist, specialising in neuro-muscular diseases and genetic mitochondrial conditions that now are known from DNA sequencing investigations. I spent almost two hours going through my whole story, from 25 years ago until now, with him. Well, really my whole life story –medically speaking. He even asked about if I had noticed something already as a kid and when growing up. The result of this interview/discussion with him was that he was going to take some time and think about my condition and story, and if he could figure out something, he would come back. This was in early October.

Well, now last week, I got an appointment for taking muscle biopsies. Exactly what he is going to check I don’t know, and I really don’t expect anything new to come out of this. But of course, it is good that someone is testing something new about CFS. Maybe there is something wrong with the energy producers in the muscle fibres – the mitochondria’s.

I will have another, completely different test done too. My father died of a ruptured aortic aneurysm, and when I told my cardiologist about this at the yearly ultrasound check-up of my heart, he immediately referred me to the vessel specialists here at the hospital. The condition is much more common in male siblings of known patients, and furthermore they started general screenings of all men at 65 years here in Uppsala some two years ago. So the knowledge is present here. I only hope it has nothing to do with my known brain aneurysm, or the hiatal hernia I have had for a long time now. It could be a generalized weakening of smooth muscle cells in these structures, but it could also be specialised disruptions at each site causing the different bulginess. No one knows the exact reason for aneurysms or hernias.

ZenMaster

Today I had...

... the first MR brain scan, again, after the surgery in March. Six months now since they were in and poking my pituitary. It's been some long summer months, mostly with heavy tiredness and pain in the muscles, but some short breaks for a couple of weeks when I felt better. Then again, tired, weak and in pain...

It has been disappointing; I had expected this summer would be better after so many years of weakness in my body. I try to convince myself (it only works from time to time... haha!) that it takes time for the body to adjust to the "normal" hormone levels. They are still exquisitely normal!!!

So, I expect the MR-scan will also show no residual tumour, at least not for now. It is strange how divergent our bodies can behave... I should be very well, but I feel like shit!

ZenMaster

I’m still...

... so extremely tired all the time. Today I was to an optician; I need new glasses for staring at this screen... hehe. The old one’s broke last week. After a long, almost an hour of checking my eyesight, she concluded that I should go back to an eye doctor before I get the new glasses. Some things were changed from earlier, and she could not (or would not) say if it was a result of the surgery, or ‘normal’ age-related changes. So now I have to find someone at the hospital – in the middle of their summer vacations, when many departments are closed – and try to pester them to give me a time as soon as possible! The Swedish healthcare doesn’t work particularly good during July and August – every doctor and nurse what their holiday then!

ZenMaster

It's been a terrible month...

... as you see, I have not posted in a long while! It's been a terrible month. Tired like hell in all my muscles, not sleepy, but tired and weak. Not so much pain this time. I was put on some cortisone again early in June, by my doctor, but it had no effect. Last week when I talked to her again, she could not understand why I was feeling so bad. So, 8 more tubes of blood on friday to the lab, to check a lot of the hormone levels again was the 'answer'!

OK, ok, I do have CFS also, and that could be the explanation, but none of my doctors know anything about that, so I am just in limbo as usual.

Well, I guess I should wait and see until these latest blood tests are done, maybe it is something wrong with some hormone system after all? Who knows...

ZenMaster

It's been some bad weeks again...

... a couple of weeks ago, I stopped taking the cortisone I was administered after the surgery and removal of the pituitary tumour. While I was decreasing the dose, I started to feel extremely tired and weak. Now more than two weeks later, I still suffer from this extreme tiredness. I don't know why this happened, I though I would feel stronger when I could cut out the cortisone dose... hehe!

ZenMaster

I still feel like...

...I have been smashed up on my nose and eye... hehe! The eye is running, and sometimes there is a little bleeding inside the nose. But on the whole, I have to say, it has gone pretty well. The worst thing: I had to shave off my moustache and beard, I have had for more than thirty years! My kids hardly recognized me; they had never seen me without it! Neither did I! I also have a lo of headache, so it makes me worried something is wrong.

But it was a ruff week, last week... But I guess it is just wait and see.

ZenMaster

Finally I have had...

...my transsphenoidal surgery last week, to remove the GH producing tumour in the pituitary.

Well, it was a little more complicated than just up through the nose, they also had to go in and open up from the outside of the nose, close to the tear duct on one side and the eye, so I was cut at two places during the procedure. Therefore it took six hours, instead of the regular 3 hours for the transsphenoidal surgery.

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This was a few days ago...

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Everything seem to have been going well, I could go home already on Friday. Tired and weak, of course, but somehow already feeling better in many parts of my body that have given so many symptoms and pain the last several years. Well, I have to wait and see. In a month’s time, the endocrinologists will make a lot of tests, to see what have happened with the pituitary function.

ZenMaster

Still haven't got...

... any exact time for the surgery. When I called the hospital last week the co-ordinator hadn't made any progress yet in the planning. So, I am waiting for the phone to call... this waiting is like hell!

ZenMaster

Stopped taking the medication...

This Monday, I stopped taking the medication for the pituitary tumour. It was the fifth attempt! I already feel much better, not so tired and no ache left in my legs anymore.

I also had a new appointment with the neurosurgeon, and he again is prepared to perform the operation instead. But it is a sensitive procedure, especially how my tumour is situated; he is not sure he will reach it the usual way. And since it is the third time he have planned for surgery, I am not sure he will do it until it is done! Backing off a couple of day's before the operation is planned is extremely emotional draining.

So, I just have to wait and see what happens next.

ZenMaster