Recently diagnosed brainstem cavernoma

[Wendysparks]

I have double vision and numbness down the left hand side. I have had a recent bleed in the brain stem and have been told by my neurosurgeon in south africa that it is inoperable. Any advice? Anyone else in a similar situation? Will rest help with bleed and swelling in the brain? How long will it take before it improves? Anything I should or shouldn't be doing?

[Icecoach]

I too had double vision and loss of feeling in left arm and leg in March 2015,Lots of rest will help with the symptoms reducing.I have a left brainstem cavernoma which is also in operable but 21st september i had Gammaknife treatment.The surgeons said this was the only treatment as it would probably bleed again and this would give it an 80% chance of not bleeding again.Do you have this option?

[Wendysparks in reply to Icecoach]

Thank you for responding. So has your vision improved or do you still have double vision? Has the numbness gone now? How long did you have to rest for? My cavernoma is right in the centre of brain stem so no options except divine intervention.

[Icecoach in reply to Wendysparks]

Vision has improved but still sensitive to light.numbness has gone but left me unable to do alot of exercise without feeling exhausted as muscles in whole of my body have disappeared.I rested pretty much for 6 months!!still not doing an awful lot now but first 3 months you should watch what you are doing.Why no Gammaknife?

[Wendysparks in reply to Icecoach]

Hello thank you for the information. I am encouraged to hear that your vision has improved. I think the double vision is my most frustrating symptom. I am determined to rest until my sight is better. I live in South Africa and we don't have gamma knife, so it isn't an option unfortunately. I ha

ve also felt extremely tired and find I have to lie down often.

[Icecoach in reply to Wendysparks]

yes you will feel extremely tired at the start it does get better eventually.sorry to hear that you don't have Gammaknife but when i researched about it, its not fully conclusive that the Gammaknife works sometimes people are asked to rest and wait over time as sometimes it gets better.Hope this helps.

[Wendysparks in reply to Icecoach]

Thank you. I appreciate your advice.

[Icecoach in reply to Wendysparks]

Anytime.

[Warwick]

Hi I had a bleed from a brainstem cavernoma in April 2012. I had numbness down my left side and was diagnosed by Neurosurgeon, who told me that it was too dangerous operate on it. The feeling gradually came back over about 6 weeks as the bleeding stopped and pressure eased. During this time I rested and did not do any thing heavy. I was however referred to the Stereotactic Radiosurgery unit in Sheffield (UK) and in Feb 2013 had Gamma Knife treatment (one off). I have luckily have not had any further bleeds. Hope this helps. Good luck.

[Wendysparks in reply to Warwick]

Thank you much for responding. I am so happy to hear your symptoms disappeared after patiently resting. That is encouraging. My vision is probably the most frustrating symptom and it will be wonderful to regain my vision instead of having double vision in the one eye. I am normally a very active person and walk 5km a day and play golf several times a week. Initially one is so shocked to discover that one has a life threatening brain problem ... now I am trying to get as much information as possible. All the best for your future.

[Wendysparks in reply to Warwick]

Thank you for your message. It is reassuring to know that with rest, the symptoms should start to improve. One doesn't realise how dependant you are on your eye sight, until something goes wrong. The double vision is my worst symptom. I think it is also a sense of losing my independence, as I cant drive at the moment.

[CAUKcommunity16 Partner]

Hi Wendy,

For more information please take a look at the Cavernoma Alliance UK website cavernoma.org.uk/ you will find lots of information and ways in which we can support you. Membership is free.

Best wishes,

Angie

[julebee]

Hi I also have a cavernoma in pins of brain that at the moment my neurosurgeon doesn't want to operate but will have another MRI in jan and if changes then may look at some intervention. Re: deficits I lost my balance and that lasted about 3 days ..I also have facial paralysis but that is from a bled I had when I was 20 (27 years ago) I am active and enjoy sport and my neurosurgeon basically said the fitter you are the better .... And there were no restrictions on what I could do. Hope this is helpful... All the best

[Highfivetrish]

I have brain stem cavernous I have had it from 2010 I have all the things you have but doctors carnt do anything to help me