Pontine Cavernoma: Hi Everyone, my... - Cavernoma Allianc...

Cavernoma Alliance UK

404 members111 posts

Pontine Cavernoma


Hi Everyone, my sister suddenly got paralysis and after the CT and MRI scan doctors confirmed that its Pontine Cavernoma. Which changed all our lives, entire my family situation went up side down.

Initially doctors tried to reduce using medicine but unfortunately it became worse and went for Surgery on Dec'17.

Now she is recovering slowly, but still she not able to walk and hold anything with right hand. Her eye sight also not clear. Not able to talk clearly. Doctors said it will take long time to come to complete normal. Now we are doing physiotherapy. Waiting for the day when she will come to normal.

Currently my sister is week. To improve her health and to get energy to start walking One of my friend suggested to take 'RESERVE Juice Blend (Junesse)' which will give energy and its a anti-oxidant juice. When i seen the contents of this product it has Sodium (for 100G juice, it will contain 100Milli Grams Sodium).

And also I'm in dilemma whether to give this juice to my sister or not. Will it show any side effects by having this. And also it has sodium, not sure the level of sodium will show any effects. I would gladly take up any suggestion whether to take these kind of juice blend or not. Thank you.

1 Reply

Dear sriramkumar,

Sorry to read of your sister’s situation. I can fully understand what you are going through - I have a cavernoma myself.

I’m wondering - have you heard of Cavernoma Alliance UK - it’s free to join me available to anyone.

Among other resources, one of the things we offer for our members at CAUK is access to a secret and protected Facebook support group. Here, members share stories, experiences, questions, queries and concerns with other members. There is always someone able to offer advice and it is a very friendly supportive group. It may be good for you to join us and post your questions on our group?

If you would like to join us - it’s free and takes just 2 minutes - you can go to cavernoma.org.uk and click ‘Become a Member’

Hope this finds you well

You may also like...