MRI after second surgery

I went to the Hospital on August 24th to have my post-op MRI. It is a strange feeling when you go to do any of these tests and know the results in advance: neurosurgeons told me the day after the operation that there was a lot of tumor left and I had no changes after (hands, feet, face look exactly the same).

But each of these steps always means that the end is approaching somehow. It means that I have to do one less thing, I suppose you understand...

The point in posting about this is that, while I was sitting in the waiting room for the MRI to be done, a woman in her 50's came in and sat down. Inmediately, I knew that she had acromegaly too. It was so shocking that I had to think for a couple of minutes before I went to her and said: 'Excuse me, may I ask you a question?' and as she was saying yes she was also saying 'you also have acromegaly, haven't you?' It was so amazing!!! We spoke for 5 minutes or so and I carefuly suggested to her the idea of keeping in touch, or trying to know/meet more acromegalics. She politely refused...

I thought that she was going to be as fascinated as me or even more (she told me that I was the first acromegalic person she had ever met) but she wasn't interested at all... I felt quite dissapointed, if I had met her one year ago (newly diagnosed), I would had felt really sad, but each one decides how to live his/her life, no?

That makes me feel so so so proud of having found you all, you have made me feel that I am not alone, and have helped me to understand my feelings... Thank you so much for being there...

Finally... some update!

I am so sorry I haven't written this whole summer... It has been quite strange this summer because my mum was ill and she spent almost the whole July at the hospital, and in August she was at home recovering. She is much better now.

So I haven't had proper holidays, just went to "Picos de Europa" in the North of Spain, 5 days. This is me there. I thought I would never be able to do treking so early after the op, but I was!

First Anniversary

Well, exactly one year ago I was diagnosed. Happy anniversary!!!

I feel quite well, because I think I am recovering quite easily from the second operation (maybe the previous experience is helping). If someone had told me one year ago that today I was going to feel this way, I would have been quite happy!

Meeting Jason

Surprisingly, I had the chance to meet Jason last week. He and his wife had some time before taking the plane, so we met at Barajas Airport here in Madrid. It was a great experience!

Back at home after the second surgery!

You can see me at the Hospital, two days after the operation . I had a great "tamponage" in my nose, with a small cord so that the neurosurgeon could remove it (several days later)


So finally I am back from the Hospital! I went there on May the 29th, had the endonasal surgery on the 31st and came back home on June 8th!

It is so so different to face the same situation for the second time... It is so easy, knowing how you are feeling! Everything went as planned, except from the surgeons, who said that they expected to remove more than what they were able. Anyway, all that is removed is not doing bad in my body, so I have to be happy for that. Next step is Radiotherapy (again), but first I have to wait to have the blood tests and MRI done, I suposse they will be after the summer.

I do not know how much there is still in my head since I have to wait for three months from surgery to do a MRI, and I still have to receive the formal report from my estance at the hospital, but I feel quite strong, and the headaches are not too bad.

My only medication now is Cortisone, just in case they have hurt my pituitary funtions, and some pain killers.

Preparing for the second surgery

On April 24th I went to the Hospital:

- First I visited my Radio Doctor, who was very upset with the rest. He told me that the MRI where they have seen the "movement" of my tumor is the one from January. He told me that as they won't be able to remove everything (because it is very big and very close to critical tissues), I will have to go through radio anyway. He was mainly bothered because all the time they have spent preparing my sessions has been thrown away.

- Then I went to see the Endocrinologist, who was very happy. He told me that the more tumor they can remove now, the better for me, because that mass creating GH will be reduced (there will be fewer bad guys doing bad things), and because the Radio is supposed to be more effective if it is done to a smaller volume. He even told me that if I had low GH levels (now it is 29) after the second surgery, maybe it could be controlled with meds (no Radio!). He told me to talk to the Neurosurgeons so that they could explain me the surgery.

- So, I went to speak to the Neurosurgeons. It seems that as my tumor was so huge, it had grown downwards, upwards and sidewards. With the first surgery (transnasal), they removed all they could from the lowest part of the tumor, so the empty space it was left, now it has been refilled with some tumor it was above, they say it has "fallen down".
They have confirmed me that the operation is exactly the same, and that there are exactly the same risks than before. They also told me that I will surely need Radio, because the tumor is mixed with the dura somewhere, I think, but that the smaller it is, the more effective the Radio will be.

I have scheduled the pre-op tests for next Tuesday (May 8th), and then I will speak with the Anaesthetist, and then I will be operated! That simple!

I am quite scared but I suppose that is normal. I think that doctors do the best for me, but it is as if I were back to last October again, and this makes the process longer and longer. I am also scared because I have my 29 ng/ml of GH bad guys swimming freely in my blood and doing bad things, and this also worries me. But I know that soon this will be done.

The radio - and the day after

So, I went to the Hospital to have my first session of the 25 planned of "Fraccionated Stereotactic Radiotherapy". They were very nice, as always; they put my personal mask, and the treatment started. I felt a strange flavour in my mouth when it started, it was quite strange. But I felt no pain at all, or sickness, or dizziness. In ten minutes it had finished. Everything was perfectly normal. I was told to come back today, as it was planned from Monday to Friday.

I have gone to work this morning, as usual. Everybody has been very kind asking how I'm feeling. But then, my mother has phoned me:

My endocrinologist has phoned home to tell me that they are operating me again. He and the neurosurgeons team has been looking at some MRI or CT Scan (I do not know which one) and have found out that the tumor has moved. It is so incredible, it has changed its position so now it is accesible to have a second surgery. He has told my mom that I have to go on Tuesday Morning to see him and he will explain everything to me. He has also said, of course, that I should not go back to radiotherapy, maybe in the future I'll need it, but not now.

I still cannot believe it, I think it is good that they want to operate me again.