Hi all. My partner was diagnosed with a pontine cavernoma about 4 weeks ago. She had been suffering for a out 6 weeks prior to that with what the doctors had thought was sinusitis and labrynthitis. All in all she probably hasnt felt right since christmas anyway she went to A&E with worsening symptoms i.e dizziness, loss of hearing, unbalancing and weakness down her right hand side, she spent the night in hospital and was given a CT scan first thing to which the "abnormality" was found. We got told it didnt look like a tumor but it was quite large (about 3cm) and we'd know more once she had an MRI scan which took three days due to it being a weekend. As you can imagine it was a scary few days but we kept positive and knew whatever it was we'd fight it and overcome it. When we finally got the results we were told it was a cavernoma which felt like a slight victory as it wasn't a tumor, this was before we knew the severity of what the symptoms could be. After a week in hospital we saw the neurosurgeon (Mr Stuart Ross) expecting the worst but he told us they would do nothing but wait and see, she was still able to do everything as normal just not quite as good, she needed help walking but only somebody holding her hand really to stop her falling. We were told she could come home and we were over the moon it felt like we worried for nothing and that everything was going to be ok. That first week nothing changed she still needed assistance getting around but she was ok untill she decided it would be easier for her to have a bath instead of a shower which at the time sounded like a good idea, everything was fine at first i helped her wash and she was ok untill she put her head under the water to wet her hair she immediately went weird and started feeling really sick and said she felt like she was going to pass out so i got her in bed and she slept. Since then over the last 3 or so weeks (they all blend into one) her symptoms have slowly got a little worse each day, not enough to notice straight away but when i think about how she was when she first got out of hospital it is noticeable. Iv spoke to the neurosurgeon again and he wants to see her tomorrow and asked if she was on steroids which she isnt so im wondering if they might help? To be honest after all iv read, which is alot, I'm kind of expecting surgery.. does anybody whose had similar experiences know if this is a good idea because at the moment shes in a horrible place and doesnt seem to be getting better?
Thanks for listening please keep caz in your prayers
Ross
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Hi Ross - I have had a pontine cavernoma removed 12 years ago. Surgery is only usually considered if the cavernoma is enlarged and keeps bleeding. Surgery is very risky in that area of the brain and the surgery itself can cause further damage - it is not entered into lightly. I have another pontine cavernoma which has bled twice but cannot be accessed surgically. It takes a long time to recover from a bleed but I live a normal life but do have some right sided weakness and balance problems. I would advise you to join cavernoma alliance uk (if you haven't already). It's free to join and they have a secret Facebook page where you can ask as many questions as you like and people in the same or similar situations to your partner will give advice and opinions.
Hi Emma thanks for your reply. We've seen the neurosurgeon this morning and hes said surgery would be the last resort because of location. Theyve admitted her back into hospital just so they can do tests and get her speech therapy quicker than if she was an out patient which is better for her even though i hate not being able to care for her 24/7. They're going to give her a low dose of steroids just to help her feel abit better and hopefully help her get over this rough patch. Once the MRI has been done they will assess the situation and decide if surgery is now viable if it has moved closer to the side of the brain stem. I will look into joining CAUK thank you. I wish you all the best in your battle and hope for a full recovery.
Hi Ross, I had surgery on my cavernoma 27 years ago, I was 20, it has left me with left facial palsy, but apart from that I have been fit and healthy up until last August, when the off balance returned, after MRI, it was discovered that not all of the cavernoma was removed and has slowly grown back and this was the cause of the bleed. I have been advised not to have surgery because of the risks but to wait and hopefully it won't grow too fast and I wont have lots of bleeds regularly and if all goes to plan I just live life to it's fullest! I do have Caz in my prayers, it is a worrying time and the "unknown" is hard to deal with. I know at the age of 20 I was super excited when they said they would operate...and even though living with facial palsy has had it's challenges (especially when I was younger), it's Ok and I have been blessed with a beautiful husband and have 2 amazing kids...so I feel like my prayers were answered 27 years ago and now I will definitely pray for Caz and I wish you and her all the very best.
Hi julebee thanks for the reply and for the support. After seeing the neurosurgeon this morning she has been admitted again just to get quick access to an MRI and speech therapy. They're going to put her on steroids which they say will make her feel better and help her get over this difficult period. Hopefully the scan will show some good news and she will soon feel much better. Thank you for praying for caz i will keep you in mine as well. I hope for a full recovery for you and no more bleeds. Take care.
Thanks Ross, all the best, I was put on steroids when I was 12 and then again at 16 (my first 2 microbleeds) and after 2 weeks had full recovery both times...stay positive
I have been reading your wife's story and can see you have both been through a lot so far. I don't know if you have heard of Cavernoma Alliance UK (CAUK), a charity that supports those affected by cavernoma? We have an extensive website and can offer lots of information, should you wish to join, membership is free: cavernoma.org.uk/sign-up/
We have a secret Facebook group, where you may find many others in a similar situation to you both (the group is for carer's, family and friends also). We hold meetings across the country (UK) and can send you an Information pack once you have joined, this includes a DVD and booklet (if you live in the UK).
If you would like to know more please feel free to contact me on community@cavernoma.org.uk.
Thank you for the support. I will join CAUK now and share our experiences and ask about others when i get chance. Shes back in hospital now while they do more tests and another MRI to see if theres any change. They are putting her on steroids to help her get over this rough period so hopefully they will help. Thanks again.
I have a Pontine Cavernoma, mid brain stem and went through the same symptoms as your wife last July. I was scanned then sent home without an mri as they didn't think the cavernoma had bled. I was booked in as an oupatient and eventually had an mri 2 weeks later and was told, whoops it had bled, quite a lot actually! Anyhow.....I was dizzy and very nauseus, headaches, for a few weeks after and had to be babysat. It took a good few months before I was able to lay down, have a bath etc, without the room swimming crazily!!! However, the good news is it has now settled. Yes, I occasionally get dizzy if I move too quickly, but I know what to avoid doing now! I've also been told not to fly on anything over an hours journey at present. My cavernoma is inoperable as it is mid brainstem....so it's just a watch and wait.
I hope so much your partners symptoms subside and she can return to normal asap
Thank you sarah its a relief to hear of someone that has had very similar symptoms and come out of it ok in the end. Alot of my worry was not being able to find anyone that has had the same deterioration as caz but iv learnt that no one persons experiences are the same really. She was booked in for an MRI this morning so hopefully that will shed some more light on the situation and give a clear plan of action as what to do next. They say if its grown and pushed itself to one side and is close to the wall of the brainstem they may be able to operate and i think given the option she would go for it. Shes a tough cookie and as much as i hate that its happening to her i dont think anybody else i know (including myself) would be able to cope how she has. Nothing will keep her down. Thanks again for the support and advice it means alot to me and to her. Take care i hope that your cavernoma ever flairs up again.
I had a brain stem cav and every time it bled or moved it made me very sick, dizzy damaged my hearing and gave me double vision. I already had epilepsy when the cav was found which had been thought to be due to surgery that I'd had 30years ago to remove a brain tumor but now the cav was blamed.
I was very lucky to meet neuro surgeon prof Bertalanffy from Hannover at the 2014 CA Forum and after scans etc he removed the cav. It is great to know that that little time bomb is not there now and can't do any more damage.
Sadly the epilepsy remains and my hearing hasn't improved but the good thing is it has not got worse and II'm not as dizzy and my vision is fine.
It is so reassuring to still be regularly seen at the Nat Hospital forNeurology in London where I've been going since the operation in 1985 and my neurologist was delighted that I had the cav out last year. And it's great to be a member of the CA particularly as I live in Guernsey and don't know any other cav patients over here so if there are any please call we're the only Porters in the book
Anyway we'll see you at the 2016 Forum, try to keep positive. Thank you to Ian for all that he does for everyone.
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