Hi everyone,
i just had a third bleed in the pons due to a cavernous hemangioma-
it is inoperable-
bleed was about 2 weeks ago=
symptons have gotten somewhat worse but a second MRI does not show any more
bleeding.....anybody have something like this? double vision is the main problem=
thanks!!
Hi heidi,
So sorry you've had another bleed, especially in such an eloquent location.
What does your neurologist or neurosurgeon say about the symptoms?
While I've not had a symptomatic brainstem CM (though I do have CM's there), my 4th bleed requiring surgery was in the thalamus (on top of brainstem). From experience of my thalamic post-op, I too had double-vision & time has greatly helped improve my vision, though it's not 'perfect' & I've learned to adapt to the changes as best as I can.
If surgery is not an option, can you be referred to a neuro opthamologist?
I ran searches for both
neuro opthamologist's &
brainstem & hope these discussions will help.
http://www.avmsurvivors.org/forum/topic/search?q=neuro+opthamologist
http://www.avmsurvivors.org/forum/topic/search?q=brainstem+
Best wishes!
Patti,
thanks so much, i have all kinds of neuro docs now-
we are just waiting for the blood to be reabsorbed to see what the new stage of normal
will be- the double vision is totally due to the bleed-
i saw the neuro-opthamologist last week so i am ok
but i watched your video and advocated for myself today!
love the braids too!!
Thanks!!!
Hi-
anybody have any feelings about recovery after a bleed-
rest? no activity? or try to do more? any ideas?
thanks=
Hi heidi,
I'd encourage rest & allow your body to recover.
Your brain has had an insult & needs time & patience ;) to mend.
It's been my experience my body 'tells' me when I overdo it :(, though often it can be difficult finding a 'happy medium' & moderation.
Take care! :)
Sounds like you're in good hands! :)
Oh yes, "the new stage of normal"....makes life exciting, huh? lol
Hang in there & continue advocating for yourself.
after advocating for myself, i will see the neurosurgeon tomorrow am-
there is not much he can do as the lesion is inoperable-
i am getting pretty bored, frustrated, and weepy.... feeling so alone and helpless but have to keep on a happy and brave face for my family.....and my kids....
Hello heidi,
Am hoping your NS appt. went well & possibly gave you reassurance.
Louisa previously posted these articles & I feel it speaks for the majority of 'us' @ http://www.brainline.org/content/2011/07/lost-found-what-brain-injury-survivors-want-you-to-know.html & http://www.avmsurvivors.org/profiles/blogs/a-letter-from-your-brain.
All the waiting & uncertainty does carry a sense of helplessness & feeling alone, but know you're not here. :)
Hope you can enjoy the weekend w/ your family!
Hi Patti,
the appt went very well-
really liked the dr- he was honest and talked about my situation-
basically, given that this is the third bleed in the same area- they would usually operate but given that i "look so good" we are not going that route since the surgery would be in the high priced real estate/.. so now i wait... i thought i felt better the last two days...did more, went out for 2 hours last night and feel terrible today- head is sooo heavy.(I am also feeling so guilty about not helping clean, chauffeur, etc. thanks for the support Patti, it really helps!!
ps thanks for the links...really helpful
NEW ISSUES- after 5 weeks at home, i have developed new symptoms..vertical nystagmus constantly so i can barely type (ecvuse the typos) constant headache, the world spinning and severe balance issues..i may end up in rehad as now i cannot be alone, a scan on trhursday showed nothing- which leaves me wonndering how/why i am worse 5 weeks after the small belled any thought??i am sad, frustrated and know that i cannot ssay like this..
Hi heidi,
I'm so sorry for your new symptoms.
Do your drs. have ideas what may be causing the changes???
Rehab may not be such a 'bad' thing, as maybe they can find answers to the source, as well as help you work through this.
I truly HOPE you will be feeling better!
Take care & pls keep us posted when you are up to it.
Sorry for late reply , I’ve just joined today. I got recovery 90% after my first bleed .
My cavernoma located where yours (brain stem pons).
Same thing happened to me as well MRI Is not showing the bleed but Ive got the same symptoms but with such higher intensity from the first bleed like double vision(while viewing at right side) , weak left foot and hand,fingers , can’t move them though.
Hi & welcome, Ramzi.
So sorry you're having worse symptoms. Hopefully, this will improve, yet the unknowns are scary.
Though your MRI showed no bleeds, even the slightest change within a CM can cause an increase or changes in symptoms.
I applaud you for getting a 2nd opinion.
You may want to check out the http://www.avmsurvivors.org/group/avmers-from-asia sub-group for suggestions of experts closer to home. Multiple opinions from experts treating &/or managing CMs is always a good idea, or at least until you feel right about the direction of care.
Best wishes,
Patti
Hi Patti , I went for the cyberknife but they refused to do it because of it’s location .
As I’m on rest since 20 days , things are getting little bit better like 10-15% improvement until now.
I’ve been praying for myself and for those who are suffering from all over the world .
Thanks for suggesting me the subgroup. I checked that for a while and noticed that there are no such active people there I guess .
Now I’m thinking to join rehabilitation center so that they can help me to gain my movements back and hope for a speedy recovery.
Best wishes,
Ramzi