I'm quite new to site, I've read lots of posts but this is the first time I have ever posted myself. I recently had an MRI scan to check whether I'd had a mini stroke because I had intermittent numbness down one side of my body, reduced function down the same side, severe headaches, memory problems and I keep dropping things etc. Which has made everyday life a huge struggle because I live alone and I'm already disabled due to back and hip issues. I have to use crutches.......which is pretty impossible with a numb arm. I was called back to the hospital to have a second MRI with contrast, no explanation from GP. I have had a bit of palaver tbh getting the results from my GP surgery because the receptionists have me the run around. When I finally did get a phone appointment, the GP told me that I had a meningioma and he'd referred me to a neurosurgeon (didn't elaborate or tell me what me what expect).
A few weeks down the line, I have my first telephone appointment with a Neurosurgeon next week. I'm looking for advice on what questions I should ask during my first appointment?
Got to admit I'm dreading a phone appointment because if I get interrupted or if a conversation goes off at a tangent I completely forget what I was saying in the first place and my mind goes blank. Finding that particular symptom very frustrating at the moment
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BrainGatecrasher
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I was diagnosed with a left frontal meningioma three years ago following a CT scan with contrast. I had very similar symptoms; weakness down my right side and I kept dropping my shopping basket which hadn't happened before.
Sounds frustrating regarding the receptionist and the GP, I found it a relief when I finally spoke to a neurosurgeon as they have the expertise to answer the questions in a lot more detail. I also had my first appointment over the phone and I would recommend writing down all your questions and leaving space for the answers so you can write those down as the doctor is speaking.
I asked what size the tumour was and what grade they thought it could be. Also if I was eligible for any treatment and we discussed side effects of potential treatments. I asked about whether I should carry on working as well. I think they have a list of possible questions to ask on The Brain Tumour Charity website so might be worth having a look.
The neurosurgeon is a professional and are most likely used to patients forgetting what they had been saying or needing something repeated. I hope the appointment goes alright for you next week.
Thank you KaspianSky for replying, hope you are keeping well. I'm going to jot down a few questions before the appointment. I have already looked through the Brain Tumour website a few weeks ago and my sister has printed off the info sheets etc I wanted, but also wanted to engage with others who have been through it for some feedback 🙂
If you don't mind my asking did you have any treatment for your meningioma?
Great that you have already looked at the website as I found that helpful myself. Because of the size of my tumour, I was told that surgery was my best option so I had a craniotomy shortly after diagnosis. Some people may not need surgery/radiotherapy and there will be a 'watch and wait' approach where you are monitored with scans.
If I am honest, I felt overwhelmed after my initial appointment on the phone with the neurosurgeon as everything was so new and they kept talking about side effects etc which are not necessarily going to happen. What really helped me was talking to family members and friends and also speaking to someone at the Brain Tumour Charity who was very reassuring.
I am so glad that I had the treatment and my team are great and I can always call them if I have a concern. I'm in a completely different place now then where I was when I was first diagnosed so my advice is to make sure you have support and ask the neurosurgeon as many questions as you want to.
That's reassuring to hear you're now in a different place compared to when you were first diagnosed, it's also very reassuring to hear that your team are great and you can call them anytime if you have any concerns.I don't really have any close friends to speak of (the one I do have and confided in, straight when into know it all mode because they knew someone who had a tumour once and she then proceeded straight into horror story mode and she hasn't contacted me since, which I have to admit I'm glad she hasn't because I want to keep positive and don't want negativity right now). Apart from her only my immediate family know so far, I decided to keep it to myself until after I have spoken to the professionals and know more myself. Taking it one step at a time
It is very helpful being able to phone a member of the team as they can give me advice over the phone which saves me from having to go into hospital. Why is there always someone who suddenly turns into an 'expert' as soon as you tell them about your diagnosis. I had someone who kept telling me it was related to my diet so I stopped talking to them. You have to put yourself first, you're the one with the diagnosis and if someone is not supporting you or making it about them then I would recommend distancing yourself from them as you have done.
You have to do what you feel comfortable with and if you just want to tell immediate family then that is entirely up to you. I just told my family and a couple of friends and I wanted to do things my way. Good idea to take it a step at a time, here if you want to chat more.
Building on KaspianSky’s excellent reply, the Brain Tumour Charity has prepared a list of questions you could ask. You can print them off if it helps. It may not be possible, but having someone with you is really helpful, if not, write down the answers and don’t worry about telling them to slow down to give you time - they’ll expect this. Good luck 🙂
Hi Andy, thank you for replying. I visited the Brain Tumour Charity site a few weeks ago and I have found the site extremely helpful, I sent links to my sister and she printed off the various packs I requested. I'm going to use some of the questions but also wanted to direct feedback from others who have been through similar.At the moment I intend going it alone for my first appointment because I don't want any distractions during the appointment or for anyone to keep chiming up on my behalf or interrupting. I love my family dearly and they mean well but they have a tendency to interrupt me or go off at tangents or try talking on behalf, plus my mum in particular has been extremely emotional since the meningioma was found, she gets tearful. I don't want to come across as mean but I want to get as much out of the appointment as possible and I feel I'll be able to that better if I have the first appointment alone......if that makes sense
Hi Lytham, I had my telephone consultation yesterday. It went well thank you, the consultant was lovely, he explained I have 3 options and he is going send me some information about surgery and gamma knife treatment. After I have read the info and thought it over, I'm to get back in contact with what I have decided 🙂 x
Awe that's good, pleased he was lovely ! I've had both surgery and gamma knife treatment or Steriotactic Radiosurgery they called it and it's a lot less invasive than surgery if the prognosis is the same . Hopefully the consultant will be able to guide you based on your situation, good luck! x
It's having the cage fitted is the only part that bothers me. Mainly because I've had bad experiences in the past of local anaesthesia not working on me during procedures for other medical issues! 😬 x
Thank you for being honest. Yeah, to me the surgery seems the rougher option. He said I could 'watch and wait' instead but if it grows they would advise me to have either surgery or Gamma knife done. x
Hopefully he'll be able to advise you best based on the position and size but if you've got side effects I would have thought you would need to do something? X
He said the meningioma isn't causing the numbness in my left side. He wants me to have a scan on my upper back, he thinks I might need spinal surgery (disc removal and a fusion) but he said I'd need to be prepared to go ahead with the surgery soon.........which I was honest and told him I'm hesitant about going into hospital because of Covid. He is contacting my GP to issue me some medication for now and we agreed if that if the pain and numbness hasn't settled down in a few weeks I'm to get back in touch with him x
I've just asked my OH and he says at the hospital he works at they can give you it there if you're going in for an op. I had my Gamma knife at Sheffield Halam hospital, back then there was only two hospitals that did it, there and one in London, any idea where yours would be? X
It is an excellent hospital, I've been taking my daughter to all her appointment's there for a few years now (ever since she was swapped over from Sheffield Children's hospital to the Hallamshire for adult care), the haemophilia clinic has been fantastic with my daughter! x
Hello BrianGatecrasher, im new too with a diagnosed meningioma. How are you getting on? Hope you don't mind me asking but im feeling very afraid and have not heard anymore than the result of the mri from the GP who said he was contacting a neuro surgeon. Best wishes Bests.
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