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cavernoma. 28 year old son diagnosed yesterday. help please.

(12 Posts)
lemoncrisp Thu 30-Jun-16 06:31:22

He was fit, healthy, hardworking ........and now this. He has double vision so can't work, can't go out unaided, can't read, can't use a computer - effectively blind??? Lethargy too. And other symptoms too like headache and cant concentrate.

He was discharged from hospital yesterday with paracetamol for the headache ........then wait and see if the other symptoms clear up.
Surgery or radiation treatment have been ruled out for now as too risky.

He is also aspie so needs routine and structure in his daily life. The life he has made for himself has now gone. I have no idea how to help him readjust.
Even if the symptoms do clear they could recur at any time in the future.

He is living with his girlfriend (together a year but just recently living together). What must she be thinking now????

We will have to support him financially and I don't know how we will do that.

Our dd, his sister, is in australia and about to start a new job. Should she come home???

Only last week he and his girlfriend booked flights to go to aus to meet the rest of my family there in January.

I have no idea how we go on from here.

Popskipiekin Thu 30-Jun-16 20:38:07

Bumping for the evening traffic for you. I really have no idea how to help, I'm so sorry. I do hope a better experienced person comes along soon. flowers

Abraiid1 Thu 30-Jun-16 20:39:43

You must be so worried. I'm really sorry and hope you get some good advice here.

traviata Thu 30-Jun-16 20:49:28

have you come across cavernoma Alliance for advice and support?

lemoncrisp Thu 30-Jun-16 23:23:52

thank you for these replies. I have spent the day googling everything i can find and feeling a lot calmer this evening. My gp was very helpful too. Ds saw his gp who had not heard of cavernoma.
Thanks traviata for the link to cavernoma alliance. yes I discovered that today, and some other support groups that might come in handy with advice.
Gp used the phrase visual impairment which to me sounds a million times better than blind. Double vision can sometimes be helped by prism glasses so that is one thing we can pursue.
Just need to take one day at a time.

Abraiid1 Fri 01-Jul-16 11:57:34

It must be a terrible shock for you all.

EverythingWillBeFine Fri 01-Jul-16 12:05:04

No idea about the illness itself but please don't say to your dd that maybe she should be back home.
Let her make her own life and her own decisions wo feeling pressurised it feeling guilty.

Re financial support, I would start by looking at what sort if support/benefits he is entitled to.
Don't write his gf off. Whether she is staying at his side fur a few weeks or a few years (or forever), she will still be a anchor and a sable point for him.

TealLove Fri 01-Jul-16 12:08:07

That sounds awful. I really hope it improves.
I also agree about your DD. She is living her own life and she's v far away. She shouldn't have to come home.

I hope you get the support you need.

lemoncrisp Fri 01-Jul-16 12:19:28

Many thanks, abraid, and everything. Yes I totally agree with dd making her own life and not rushing home. Brought her up to date this morning now that I am slightly less panicky than i was yesterday. She took it ok and is hopeful that his brain will adapt new pathways to restore his vision over time.
Yes, girlfriend is a great anchor. I feel so sorry for her too.

lemoncrisp Fri 01-Jul-16 12:25:02

Sorry cross posted, teal. CAUK seem very good for support . Contacted them this morning.

lemoncrisp Fri 05-Aug-16 14:35:11

Revisiting this with an update.
Good newsis that some of his symptoms have improved eg the double Vision so he has been able to work a bit. But he is still fatigued, struggling with short term memory and concentration. He is self employed so whilst he can regulate his work load to some extent, he worries about finances.

The main problem now is anxiety and depression and lack of motivation. He is so worried about the future and how this will affect him long term. Me too. My anxiety levels fluctuate day to day and some days are very very bad. I expect he is suffering far more than me. I am taking citalopram (increased dose since the diagnosi). Ds is very reluctant to take medication.
I have suggested he look at hypnotherapy and CBT to help. Any other suggestions??? He tries to get out for some exercise every day but some days he just can't manage it.
Does anyone else have experience of living with a life changing diagnosis like this?

MatildaTheCat Sat 06-Aug-16 09:22:15

I have very much benefited from learning Mindfulness which is an excellent way to manage anxiety and getting stuck in unhelpful thought patterns.

FutureLearn do fantastic free online courses and I did This Mindfulness Course recently. I highly recommend it. Of course you do have to want to do it, like CBT or any of these concepts it only helps if you truly engage and practice regularly.

Best wishes to your family.

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