Has anyone had brain stem compression... - Acoustic Neuroma ...

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Has anyone had brain stem compression on the spinal cord from there Tumour before ?

Steve_04 profile image
4 Replies

I have started to get sharp nerve like pains in the centre lower part of my neck , this is where I think the brainstem connects with the spinal cord. If anyone has had this before what actions was taken ?

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Steve_04 profile image
Steve_04
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Colejoe1 profile image
Colejoe1

Hi SteveI had brain stem compression and a 3cm by 3cm an removed June 2019.

I used to get pains in my face They had to leave a little bit of tumour on the facial nerve and I did get slight facial palsy for the first 3months I also lost a lot of hearing in my right hear.

It’s amazing how the body adapts and recovers. Just be kind to yourself do the face and balance exercises and walk a little each day when your feeling better after surgery. The worst part for me was the waiting and worrying. The surgeons are truly remarkable

Steve_04 profile image
Steve_04 in reply toColejoe1

Thanks. The waiting isn’t the best. Mines 4cm x 2.5cm as of 19th January 21. I was informed, normally this would of been removed within 2-3 weeks. However due to Covid and the requirements of the ICU I just have to wait. They’ll be doing the labyrinth approach with mine so I’ll lose all hearing on that side. It’s frustrating when the surgeon says some symptoms I’m having are unlikely. Then another symptom comes along and he says go to A&E rule out x y z ( heart and lung related ) I’ve just had those ruled out. Now I think he has to put the symptoms down to brain stem compression and decide to either act and speed up the process or risk delaying and risk the complications that can happen from not acting sooner.

Colejoe1 profile image
Colejoe1 in reply toSteve_04

That’s the surgery I had and didn’t loose all my hearing on that side although Its only minimal it’s still there . They have to tell you worst case scenario just in case. Hope you get it done ASAP and good luck for a speedy recovery.

You will get through this!

Martin-mtig profile image
Martin-mtig

Hi Steve I have intermittent nerve pain in my left side of my neck. I found , oddly, an herbal supplement Ashwaganda that worked for me, but it has knock-on effects and you should def check with GP before using it (can raise testosterone high(. I've been doing acupuncture with a good practitioner which helps a lot - and was recommended by a leading pain specialist on my case.

I also got prescribed diclofenac 50mg which also helps - much more than parcetmol or ibruprofen. In dire cases I will take a dose of Parc + Codeine but that is rare. It doesn't really do much for the direct pain, more relaxes everything - but only use it once in a blue moon. I got a heat bottle that is circular for around my neck which also helps.

I\ve also had to modify my working - either standing or a modification to sitting where the seat, keys and mouse are the same level because stress from overworking can go up and aggravate the neck.

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