MRI tomorrow - possible brain tumour too?

[lw]

Greetings all. As the title suggests I'm having a MRI tomorrow as my neurosurgeon thinks there may be something wrong with my brain (no jokes please!). Basically I've had a severe pressure feeling in my head for the last 4 months, amongst various other symptoms, and I'm going through the whole diagnosis process starting with this. I am absolutely petrified as I know that something is seriously wrong with me. Have any of you been diagnosed with a brain tumour either before or after SCT? Does having one CNS tumour make you pre-disposed to develop another? Any thoughts on this would be much appreciated!

[funnywalk]

dear LW, so sorry to hear this. I dont have personal experience of a brain tumour, but a friend's son was diagnosed with Grade 4 glioma about five years ago, he had chemo and radio after an exploratory op found his tumour was not removable, and he is holding down a university lecturing job, taking meds to control seizures, and very optimistic about his future. He is 32. So don't give up hope. And have you got good supports around you right now? You should not have to face this alone. I will be thinking of you over the next 24 hours. My NS said that SCTs were good in one way, that the tumour rarely spreads anywhere else up and down the cord. I'll keep you in my thoughts for strength and a hopeful result until we hear your news. Love, FW

[Leofwen]

Hi Iw

I am so sorry to hear that you are going through this and send warm hugs accross the airwaves and good wishes for tomorrow. I cannot imagine how you are feeling. I don't have experience of this as I have a schwannoma, however saw a report yesterday saying it could be a schwannoma or neurofibroma. I know that neuros are more difficult to remove due to the nerve involvement and the way they entwine, this may leave tumour behind when re sectioned which creates the potential to regrow( schwannomas can also re- grow).

I should not panic yet as the pressure you are feeling may be related to your SCT. Have they checked for syrinx or cyst. Are you in the UK, if so what hospital are you going to? Are they trying to rule out NF2?

Please let me know how you get on as you have been particularly supportive of me.

Sue xxx

[lw]

Hello,

Thank you both for your kind words and thoughts, which are much appreciated at this horrendous time.

I've just got back from my MRI scan (had a 7.20pm appointment!) and am now waiting for the dreaded results (next Friday). I'm under Charing Cross hospital in London and have been since December 2008. My neurosurgeon who sees me every year was reviewing me in August and happened to ask me how I was doing. I told him I'd been ill for two months with almost constant headache/nausea/dizziness and that was what prompted this brain scan. My NS has told me in the past that my SCT is not responsible for my headaches - apparently only tumours high up in the neck can refer pain to the head. As far as NF2 is concerned, this has never been mentioned, and I've always been led to believe that my tumour is a one-off. Having said that, my surgeon did ask me at my very first consultation if anything ran in my family. Fortunately my spine has remained tumour free since 2008, despite the fact that the post-op remainder is continuing to grow into my heart valve (great!). As another nodule has appeared since my last scan I have been referred to Harefield hospital also for cardiac assessment.

My Dad is great and I couldn't have got to my appointments without him. This pressure in my head is so bad that it's made me vomit and almost pass out countless times. My Mum has rheumatoid arthritis and, up until a couple of months ago, I was her main carer. She tries to support me emotionally but has enough problems of her own.

All I can do now is wait. Luckily I don't have too long. Indeed I shall keep you posted and, once again, thank you both so much for the kind messages. Keep strong.

Leah

[Leofwen]

Hi Leah

I am so glad you have updated post and that you have had MRI. The reason I asked about NF2 is that I was tested for this as there is a "mosaic" type which mimics NF2 and related to schwannomas. I asked for a referral to Proffessor Rosalie Ferner at Guys and St Thomases as she runs a national Neurofibramotosis and schwannoma service. Any NHS patient can be referred as it is nationally funded and does not cost the pct or health authority. prof Ferner was fabulous and works with neurosurgeons from Kings College as she is a neurologist. If you want to have a second opinion I can email you the contact fax details. They see you very quickly. I was seen within 3 weeks of my referral. You need to use all the resources you can to get answers.

I feel for you as it must be miserable and you are so young too. Go and have a rest and keep us posted.

Love Sue x

[funnywalk]

dearest LW, thinking about you today as you get the results. Suddenly there is a little group of us all in the UK. It helps me to know that we share the same NHS [well, whats left of it!] and I'll send you an email address if you want to post anything to me. Sue [Leofwen] and I have just made contact. We rare conditions need each other. You sound like a courageous and lovely person. xxx FW

[pringleman]

Wish you well, LF. It cannot be a pleasant wait. I do not know why these places cannot tell you straight away - they see it while they do the scan. After my first MRI the tech just told me the news so I get things going. I had an ependymoma removed 15 months ago and started having new problems about 2 months back. I had to wait 3 weeks before they past the news on to my specialist. I now have 2 nice new tumours which is a bit of a shock. I hope yours turns out to be something better than expected.

[lw]

Hi all and welcome to the forum Pringleman!

Once again I'd like to thank everybody for their support. It can get a bit daunting when your body's falling apart and most of the people around you don't know what you're going through.

I actually get my scan results on Friday the 25th and, as I have just said to FW, I am counting down the days. I think sometimes the 'not knowing' is worse. Pringleman, when I was diagnosed with my SCT I was also informed there and then. In fact the tech's behaviour was quite despicable. I'd been under the scanner for about half an hour when I suddenly became aware of pandemonium around me. The staff were running around, shouting and slamming doors. A nurse then got me out and told me I'd need a contrast dye and would have to go back under. I asked her what was going on and she just kept saying 'I can't tell you anything'. I was then put under for a further hour. It was horrible. They were still screaming and shouting when the scan was over - 'Don't leave the hospital!' was all I could get out of them. I understand these people cannot diagnose as they are not doctors but it was handled all wrong. Eventually my regular neurologist came down - he took me into a side room and did it properly. It was not a good experience. Fortunately all my subsequent scans have been fine though.

Sue, I may well be contacting you for those details at some point. At the moment I am concentrating on Friday and hoping to get some answers then. If the scan doesn't throw any light I will need to explore other avenues as I can't spend the rest of my life like this! It is indeed miserable and a pain (pardon the pun!).

[funnywalk]

urgh no! I thought you meant yesterday! A whole week to wait. That really sucks. Is there a patient advocate office in that hospital who might help you get some results out of your neurologist sooner? Having had the inexcusable experience you describe with your previous MRI they owe you something. And your situation is urgent, whatever the result. I know when you're ill you don't want to be fighting any battles, but in the name of decency and natural justice, you shouldn't have to wait that long. Last time I had an MRI my consultant 'popped down' from his office to look at it and give me an on the spot opinion - but we're not talking London. Wish I was there to give those techies a piece of my mind [whats left of it!].
love, FW.
ps Hi Pringleman, hope you find this a congenial place to hang out!

[pringleman]

Hi LF and funnywalk, thanks for the welcome. Was uncertain about dropping into your conversation but glad I did now. Love your funky avatar funnywalk, it inspired me to make one.

Your inital scan, LF, sounds so similar to my experience I wonder how many others have had and will have a similar experience. I was told my scan would last 45 minutes which I knew would seem a long time, but then they announced over their little speaker that I would need some contrast. When they rolled me out and told me not to move or we would have to do it all again I asked how long I had been in and they said an hour! The contrast then took another half hour.

Fortunately I have found a faster MRI machine but I still dread the thought of my next one. I am meant to have another scan to check the regrowth in December and can't decide whether to have it before or after Christmas. Tending to think after on the basis of the waiting period. Could not think of anything worse than to have the scan before Christmas and then not get told the results till after.

Will be thinking of you LF on Friday.