Tracheostomy question/brain stem tumour

[Moondog123]

Hi all, I'm a bit new to MN, and there's such a wealth of knowledge and wisdom here that I'd like to ask a question of any medics who might be around..

My sister had surgery to remove a meningioma on her brain stem 7 weeks ago. It's wasn't straightforward at all, the tumour was found to be impacted and fibrous and an artery was damaged in the process and she had a massive haemorrhage which halted the surgery. The surgeon does not want to do any further surgery but has removed 50% of the tumour.

The plan is to deal with the rest of it with radiotherapy.

The haemorrhage has affected the function of her throat. She spent 4 weeks in neurological ICU on a ventilator, and was then fitted with a temporary tracheostomy. She had an NG feeding tube but now has a PEG. The arterial nerve to her right ear has been severed (she was already deaf in the left one) so now has no hearing, no speech, can't eat as is tube fed, can't get out of bed etc etc so is pretty miserable.. We communicate in writing, now that her writing has improved enough to understand.

So yesterday an ENT surgeon came by and told her that the tracheostomy is going to be permanent. She was clinging to the hope that she would regain function in her throat and this is quite a blow.

My question is (sorry to ramble on) if she is fitted with the permanent device, is it reversible? Would it be unreasonable to hope that one day function might return?

The physiotherapists are working on her mobility and finding her centre of balance again - is there any physio for the throat? I know it's clutching at straws but she is in such a grotty position that I'd like to find something, anything, to help her feel like continuing to work at recovery, whatever recovery is possible.

Thanks for reading.

I'm sorry to hear about your sister. I'm sure her team will do all they can to help her breathing and swallowing, and a trachy can be reversed if things improve enough. But take things as they come - neurological recovery can be a slow and unpredicatable thing.

In the meantime, your sister might find a communication app on an ipad would be useful as it would give her a voice, and can be quicker than writing.

BTW, your username is very close to a long standing MNetter, so you may get confused with her

Has ahe got a speech therapist? They can really help with communication whilst having a tracheostomy in situ.
There are aids such as speech valves that can help with talking, but can be difficult to master, especially with neurological issues.

Getting tracheostomies out from patients with neurological problems can be very, very difficult. Taking a really slow approach is sometimes the only way, and then its not always successful. (I worked in this field for 10 years)
The fact that her cognition is not affected is to her advantage, and makes the use of apps and aids so much easier
Good luck to you both xx

Just to clarify, speech therapy is the equivalent of physio for the throat. They can work on swallowing and mouth movement, if she doesn't have an allocated SLT, please ask for a referral to be made asap.

Thank you so much for your replies - I was talking (writing) to my sister today, she is very down but wrote that she will concentrate for now on regaining mobility - she falls to the right, bless her, the ear thing has confused her centre of balance - and when more time has gone by will ask the hospital for a second opinion. I think that sounds fair, and I also think that being able to move independently will take some of the sting out of her other difficulties. I never dreamed what a massive trauma neurosurgery is..

CM thanks for the heads up about my user name, I'll come up with another one.