Helpless

My sig other was diagnosed was diagnosed with an inoperable Cavernoma in his Pons. It bled in 2011 and he was able to recover fully. A couple weeks ago, he was rushed to the ER with similar symptoms. He has been home now for one week. I am trying to keep it together right now and stay strong. His Cavernoma grew 5mm from his last MRI in 2015. While his symptoms were similar from his 2011 bleed, it seems his symptoms are worse. He is very dizzy and is unable to balance himself. He is using a walker to move around but still needs assistance. His numbness, which was only around his mouth and nose has now spread to his entire head. His vision was ok but is now getting more blurry and this morning was having a hard time opening his eyes. The doctors say they cannot do anything for him and he just needs to rest and keep his bp down. I don’t know what to do. I know patience is key but I want to know if there is anything, vitamins etc, that I can give him to help speed up recovery.

Hi Ellam, I would agree in part with your doctors in that rest and sleep are key to recovery and getting better, I had speech issues after my second surgery but this was only when I moved around (walked even a few steps !) , when I was resting and had enough sleep I was able to speak fine. We here can share our own experiences with you but it is not allowed for us to give medical based advice since each and everyone’s medical case is different , I hope that things get better for your partner. Take care and stay strong .

Martin

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Thanks for the support. I understand that no medical advice is allowed. I am just feeling so helpless and really wish he could get better. It is so hard to see someone you love going through such a difficult time. I just want him to be better and back to his normal self again. I know patience is key and I am just trying to keep it together and be strong for him.

Ellem,

Martin’s other usual recommendation is to keep his fluid balance up nicely.

I also read 7man encouraging people to keep their oxygenation up the other day – in practical terms, that might mean breathe effectively / breathe deeply, have fresh air in the room – all as “normal” stuff he can do to give himself the best chance of recovery. I did read that oxygenation is an important part of recovery the other week.

You’re doing a great job being there and supporting him. This is a big exercise in patience.

Very best wishes

Richard

I was also diagnosed inoperable brain stem cavernous malformation. It was treated by Dr Barrow at Emory in Atlanta http://neurosurgery.emory.edu/faculty-bios/barrow-daniel.html might be worth a second opinion. I was told to stay away from blood thinners. Hope my experience was helpful.

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