DS has tumour, here for a handhold

[MumtoDS]

Just here for a handhold, not wanting any scary insights right now.

DS - young adult - had a seizure earlier this week and the cause turns out to be a brain lesion/tumour. He stabilised very quickly and even before given the steroids. Surgery has been scheduled for about 5 weeks time. He has some regular meds to take, there will be preparatory appointments to attend and advice is to carry on with life with a few lifestyle adjustments like no alcohol, no driving, good sleep schedule.

DH and I in shock, DS also obvs. DH and I have gone into our coping modes. Mine is trying to be organised and practical. This can mean I act a bit detached, but more that I just don't think beyond the next step/arrangement and my reassurance responses are automatic not addressing detail if I can help it.

DS has lovely friends who have rallied round him super quick. A beautifully effusive card just arrived. All of them are just amazing young people.

We are telling close family and friends. This is fine, but with certain friends it's a bit difficult. My closest female friend is epileptic and I knew she'd share her story again. I fully understand why, but it was the wrong time for me to hear it, if that makes sense. My closest male friend used to be a paramedic and is very good at knowing what to say, so very grateful for this.

I name changed for this because I just want a handhold. I'm not even sure why an anonymous hug is important, but feel it is.

One week on, a big mid afternoon hug as we reached that point.

Big day at clinic at the end of the week. Meanwhile, more energy as the heatwave subsides.

Positives vibes from friends and neighbours bringing food

DS got pathology results on the growth yesterday. The lesion was benign. It was a localised brain abnormality with a 'complex pathology' bearing some characteristics of a cavernoma. The surgeon said that he was very lucky it 'manifested a symptom before it got any larger'. It was growing rapidly and bigger than they originally thought. There will be close monitoring for a year and then yearly scans. He will probably always take seizure meds.

So technically a growth/lesion not a tumour. They can't say what caused the abnormality at the core, when it started or what it is, but the cavernoma developed around it later causing rapid growth and the bleed that caused the seizure.

He's currently very tired after yesterday's consultations and stitches/clips removal. As regards the clips, if any of you have seen the Macmillan ad where a large head scar is shown, DS's scar is a bit longer and the head shaving around it is minimal.

So the prognosis is good and the likelihood it was a one off quite strong.

Feel very much like this is a 'phew' moment, but recovery is still taking shape.

Amazing uodate @MumtoDS soooo happy for you all xx

💐

In other news, he's got back his year 1 uni coursework, completed during the 5 week pathway to the op. He's got a first 💕

Well done to him !

That's 2 lots of good news.

Congrats to your son. What a battler! And congrats for holding on and dealing with all this.

Oh wow. Amazing news in many ways then.

Take some time to process what you’ve all been through. Just because you’ve been given the all clear from a malignant tumour doesn’t mean you’ll just bounce back as if nothing happened. Mentally this will take its toll.

Meanwhile celebrate all the good news

Thank you everyone. He's been quite subdued today. It takes a while to process it all. On the one hand, there was info on how serious the growth was in terms of size and potential to cause stroke etc. if it had not been found. One the other hand the outcome was very positive, but lots of check ups ahead to make sure of that.

It was good he checked uni email saw the coursework mark. Plus he's got the first proper hairwash done. 'Feels so good, but this baby shampoo is like herbal tea strength' 🤣

Really pleased you’ve had good news - getting a first is amazing, given what your DS was going through. Sending hugs.

My DH had a brain tumour on his pituitary gland and growing around optic nerves. He started walking into things and being clumsy. Then he passed out at railway station. He got taken to hospital in an ambulance and had a brain scan because he couldn't remember his name or recognise me when I arrived at hospital. It showed tumour. He was given appointment for 2 weeks later with brain surgeon. Then about 6 or 7 weeks later he went in to have it removed. If it was not removed he would have gone blind. He was very scared. They could only do it when they had an intensive care bed free just in case. I was told operation would take about 4 hours but it took almost 9 hours. It was tricky to cut away. Due to position they operated through his nose. He looked terrible after operation and had to have a rod down his spinal cord to drain fluid to stop brain swelling. After 3 days he got out of intensive care. He spend 6 more days in hospital but was then released early due to beginning of COVID pandemic and they were worried he'd catch COVID if in hospital where COVID patients were being brought. He made a full recovery and gained back the eye sight he had previously lost. I hope your son has a full recovery too.

Wooo Hooo congratulations to your ds @MumtoDS that Mark takes some serious work so to have achieved it at a time when he was so ill and dealing with this is absolutely awesome!!!!

9 hours and the route sounds gruelling. I'm so glad it all worked out in the end.

Neuro surgery is lot to deal with for anyone, DS seemed to take it on with a mixture of defiance and denial. Having the chance to complete his year at uni before the op really helped, gave focus.

Thank you, he's very driven academically. The whole mind mapping pre op process was also a an academic exercise. He actually enjoyed the 3 hour psychology assessment and IQ test.

That is amazing he could focus so intently whilst under such pressure. I forgot to say my DH has an annual brain scan to make sure the tumour does not grow back. It's a small price to pay for getting his sight back and he's incredibly glad the surgeon took him in and did the op when they did because most other surgeries were cancelled due to the COVID outbreak and the hospital that did his surgery took a lot of COVID patients. If your DS can cope with this he can cope with anything. You must be so proud of him.

Thanks to everyone for continued support.

All well, out and about on his own earlier. Much less tired and more himself.