Hello,
I am new and I am not sure whether I should be here or not. My husband(34) was diagnosed last year with, I quote from a letter from the neurosurgeon, "a right cerebellar pontine angle lesion which is an unusual looking lesion which extends in front of the brain stem and over to the left side at the level of the medulla. The neuro-radiologist feels that this is most likely a meningioma. An epidermoid maybe another possibility".
They say it is benign and they are taking the wait & see approach. They are reluctant to do anything due to the location. He suffers from terrible headaches daily, hands & feet feeling cold and shaking of the limbs. However the neurosurgeon does not think these symptoms are related to the CP angle lesion. He has not seen a neurologist yet. We are waiting for an appointment. We are told there is a very long waiting list. A few weeks ago he suffered terrible muscle spasms of the neck and he could not move. It took two of us to lift him in the bed. I brought him to the hospital, they kept him a few days. Did another MRI. There was no change in the tumor and they sent him home. We do not know if the spasms were related to the tumor or not. When I read about other peoples brain tumors, they have specific names and a grade. Most seem to have had some treatment too. We are just confused. We have no idea what is around the corner. I do see that this site is for people with high grade tumors. I hope it is OK to come here.
Claire

Hi Claire, I'm no great bt expert, but I think a meningioma is a benign tumour and an epidermoid is a cyst if I remember correctly.
My daughter-in-law has a benign tumour which has cause petit mal fits,which are controlled with meds.She too has severe migraine type headaches sometimes. She has had her tumour for many years and just has annual check ups to make sure the tumour is stable. I think she could have it operated on, but the thinking is that there is no need for surgery at this moment in time.
I would think if it were anything more serious, they would have started some form of treatment.
I'm sorry I can't be of more help, someone else will probably know more.
Kathy

Hi Claire, I, like Marney am ne expert, in fact probably even a lot less so than she is. What I do know and appreciate is the upset and worry you are going through. Don't concern yourself about who this site is or isn't for, if people on here can help you they will. If I was going through what you were I would be ringing people up every day to demand action. Somebody once said to me that to get anywhere with the health service you need very sharp elbows so keep at them. Demand a second opinion, do not sit back and expect them to come to you. I know this sounds negative towards the NHS and to be honest we cannot complain about our experience but it was not for the want of hassling people. You need answers for your own sanity. Contact the Samantha Dickson Trust, they might be able to advise, listen or help. Our very best wishes to you both. Andy & susan

Thank you Kathy, Andy & Susan for your kind messages. The last year has been very hard, getting through the initial shock and then waiting for the next scan and results. It was the last thing we expected to be bombarded with. My husband had bother with his ears. He needed a mastoidectomy. Next thing we knew we were told he had a brainstem tumor and they would not do his operation. Eventually they did the surgery, but they were very hesitant for months. Now he has severe deafness in his left ear and they are afraid any treatment might leave him totally deaf. So once the tumor does not misbehave they are just monitoring it. At one point they spoke of doing gamma knife in Sheffield. We live in Ireland. It all seems very backwards here. It is quite worrying. I think you might be right about seeking a second opinion. It would not do any harm, would it?

Hi Claire, definitely worth a second opinion. Hassle your GP, speak to the senior practioner and make him listen. They also do Gamma knife in Leeds and London. It is incredible what they can do but obviously I say that with caution as each case is on its merits. Speak to them direct and ask them what you need to do to get action. If it was me I would be at them today and every other day for action and answers. You have every right to a second opinion so don't be fobbed off. You must be desperate and deserve more help than you seem to be getting. Best wishes A&S

I would definately get a second opinion.
My son says we should think of ourselves as customers of the NHS and if we're not getting the service or answers we need, we should demand better.
Andy and Sue have given you some good advice, speak to them directly to get the information you need first.
I once e-mailed a surgeon in the States I had heard about for advice and he got back to me. You've got nothing to lose have you?
xxxx

Thank you. I just rang his GP. You are so right! We need answers. We have to know more. It is not just going to go away. I guess sometimes you just need an extra push! Instead of being quiet about it all. I will let you know how we get on. I am inspired by all of you. Your strength and positivity is amazing! Thank you again. God bless you all!

Hi Claire, hows things going. Are you getting anywhere......keep at them. Hope things aren't too bad with hubby, give him a hug from everybody on the forum. We're all in this together and it aint much fun, but supporting each other helps. Take care and best wishes. Andy & Susan

Hi Seajay, I notice you haven't been on for a while. Hope things are ok and your both coping. I noticed a thread on the adult treatment forum entitled Mr Chis Mascott who is a neurosurgeon based in Dublin. I googled his name and it threw up a BBC N.Ireland news article about a guy from Belfast who did not get the help he hoped for and went to Chris Mascott. I thought of your situation and wondered if it might be an option for you. Best wishes to you both, Andy & Susan