Pons bleed

Discussions of issues related to living with cavernous angiomas

Pons bleed

Postby tbrain » Sat Dec 15, 2018 1:37 am

Had my first pons bleed and I need all the info I can please to deal. I have everything from loss of bladder control to numbness in my face during bleed. I see awad in February if I continue to have no more symptoms. He will the. Do an mri and if it isn’t stable we will discuss surgery. Has anyone traveled for brain surgery? What was recovery like after surgery? How long from one bleed to the next although I know everyone is different.
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Re: Pons bleed

Postby Carterst4 » Sat Dec 15, 2018 11:58 pm

Hi,

Sorry to hear about that. My husband has a CCM in his brainstem and has had several bleeds. We traveled to U of C to meet with Dr. Awad last year and we were going to have surgery, however, after consulting with other Neurosurgeons we were advised this was too risky.

It is not an easy decision, we discussed with several specialist prior to signing on to
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Re: Pons bleed

Postby Michelle2000 » Thu Dec 27, 2018 3:10 am

I'm sorry you are having to decide about surgery. My son had a pons bleed when he was 9. He had his CM resected successfully at Mayo, but it was not easy. Physically he is doing well, but the personality changes caused by the surgical path have been difficult to deal with. He also still has facial numbness, lack of corneal reflex, and very minor left-side weakness. His vision and balance issues have resolved. He fatigues much more easily than he did, and he has suffered from headaches. He has sleep apnea due to his bleed, but that has resolved enough that he no longer needs bipap.

Before agreeing to surgery, be sure you know what the surgical path will be and what types of problems it might create. Also be aware that what your neuro surgeon sees as a successful outcome might not seem as successful to you. Talk to PT/OT and see what recovery might be like according to them. I don't regret my son's surgery and would do it again- he was in a bad way. We had to travel for his care, and we continue to do so.

Best wishes,
Michelle
18 year old son with brainstem CM resected in March 2010, CM at C2-C3,
CCM2 mutation; DH & BIL with multiples in brain and spine; (MIL - deceased spine & brain)
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