I have just been diagnosed with an intracranial epidermoid cyst on my cerrebellapontine angle. It is 33mm in the round bit and it is also expanded out a bit beyond the golf ball type mass. cranial nerves are inside it.
I am 37
if I knew that one day I would feel ok and look normal again and function normally I think I would feel better.
I am told I will have a wonky eye - the nerve is in the tumou. Will I be able to drive? will squint surgery, if I need it, give me back normal eyes. Will I be able to workallied employed and screen based graphic designer
I may have palsy and that there is a small chance this could be permanent. I feel like I am going to be very ugly. I realise this is extremely vain and selfish. I am very scared that when I am in intensive care I won't be able to hide my face as I'll be sedated and my partner will see me. I want to stop that happening; can I ask the nurses to cover my face? Will it ever recover if it happens? And if it's bad how good is plastic surgery? is it possible to cover half a face with scarves horizontally. Will I dribble?
Hearing. I have a 50% chance of losing the hearing and 'once it's gone it's gone'. Do people adjust to being single side deaf quite quickly. Is it scary?
5. Balance: my brain stem is pushed out of the way by the tumour so I guess I am going to be very wobbly for a long time.
6. Stroke; chance of stroke is very low (2%) but if I have one it will be big, they are not so worried about the main artery with is going right through the tumour as much as the small blood vessels.
7. Chance of death: 1%. And honestly, this is the only thing I don't stress about!
What about stairs? Can I just go up them on my bottom if I can't walk? (don't want to have to move
Can anyone help me regain some grace and perspective - in short, some hope?
Naomi from Somerset (having surgery in Bristol), UK.
I had a couple of pituitary tumors myself - and when I found out, well, it was very scary and I think everyone freaks out about the potential changes. Part of it is oddly muscle issues and one effect is my eye muscles and I have no depth perception due to my eye muscles.
I have had a friend that had a very aggressive acoustic neuroma and he lost his hearing and had a facial palsy. I have had family members with Bell's palsy (where half the face is paralyzed).
It is natural to worry about scarring, what you will look like, feel like and how you will manage. After all, it is all unknown at this time. I would hope that your partner would not mind seeing a surgical site - think of it this way - if the shoe was on the other foot, your focus is really concern about the other person, not exactly what the person or the site looks like (and if they are that concerned, perhaps that is not a correct focus?).
Until you have the surgery, you are not going to know - but you can check out the laws to see if you need to have two functioning eyes to drive. You may have restrictions such as only day time driving.
The deafness can be resolved by the use of a cochlear implant. Plastic surgery can help with some palsy issues. You may need eye drops to help if it effects an eye lid.
Stairs and all is all a depth perception issue - if you have only the use of one eye, then you may have issues until you adjust. I pretty much learned to cope. Physical therapy can help with balance issues. It is going to take time - it is going to be a change and there will be an adjustment period to get back to the new normal.
Whether you can work or not will depend on the tumor and the skill of your surgeon.
If you are this upset, you may want to get counseling beforehand?
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