Hi just been diagnosed on the 10th feb. Got contrast mri this monday and booked in for results Wednesday..accidental find on ct scan. Hss anyone on here have this type of tumour. Thank you ️
They sound very thorough and it is good if they checked your BP to see how you are doing. I wish results would come through quicker though as it is difficult waiting. I'll keep my fingers crossed that they come through by the end of the week but as you said, the neurosurgeon is phoning next week so hopefully they will have some information. I had this when I was first diagnosed, I saw an A&E doctor, then someone else but when I finally spoke to a neurosurgeon it was a relief as I could ask them lots of questions and they seemed to know the answers.
Hi..had my telephone consultation today...neurosurgeon seemed nice..talked way too fast though! I have a small M and it seems its been in my head a long time...benign which is good news. He asked about my sypmtoms..which are awful..headaches..numbness..tingling and involuntary muscle twitching..all on opposite side of M. He said this is not related to M and has referred me to a neurologist..got to also have another contrast mri as they found lesion/ swelling in brain vessels..didnt explain why what etc. Said neurologist will deal with all the above. Feel like there are many unanswered questions!
Glad you had the telephone appointment, neurosurgeons have a habit of talking so quickly and is hard to keep track of what they are saying sometimes. I have similar symptoms on the opposite side and hopefully after you've seen a neurologist, they can give you some more answers as to why that is happening. Contrast MRIs create a much more detailed image, my meningioma is pushing on a blood vessel so I often have the MRI with contrast. There will definitely be unanswered questions (I still have some three years on!) but after your scans have been looked at, your neurologist should be able to give you more information. Hope you speak to your neurologist soon and maybe write down anything you want to ask.
Thank you for replying. I will be asking lotsnof questions. Ive had 16 involuntarily shakes in my left arm today and walking is weird? Didn't feel very confident going out today. Ive never felt this vunerable in my life! Very scary...hope I don't have to wait too long.....x
Can I ask if you have been put on any new medication? It is alarming when your body has these involuntary movements which is why it is reassuring to read that you are having another MRI. My right leg was affected as I had a bit of swelling around the tumour but that has improved over time. If you don't feel confident going out then definitely listen to what your body is telling you and have a rest. When I was first diagnosed, I made sure that someone came with me for walks as I was a bit unsteady.
Ive been put on 2 types of blood pressure tablets..as when i went into a & e with initial head pain..they found i had extremely high BP. I think i feel scared as never felt ill all my life. Ride or rode my motorbike..very active person. And now feel so different...x
It is completely understandable to feel scared, I would say that everyone who has a brain tumour diagnosis is apprehensive as it often comes out of the blue and everything seems to happen quite quickly. But you will surprise yourself with what you can deal with and it is perfectly okay to have days where you feel down. I recommend speaking to friends and family as well about your needs as I found that helped. Sometimes I just needed to talk to someone on the phone about my concerns and process how I was feeling. I was active and that stopped after my diagnosis however, a year later, I did an alpaca trek which I never thought possible.
Wow..thats amazing..i do have some really great friends and family...i live alone..which i love! But after Meningioma was accidently found..i was told at 3am whilst in hospital..due to my bp..so had a long time on my own..as all my mates ect were asleep at that time. So did feel I had to manage my feelings...scary ones at that..on my own... im generally a tough cookie..but my thoughts and fears suprised me! Im much better mentally..but still early days...only diagnosed onnthe 10th feb. Its been a bit of a whirlwind! So pleased this group and charity is here...thanks for answering...has helped a lot xxx
Your diagnosis sounds so similar to mine, I was also told in the early hours of the morning which I don't think is the best time to inform someone as I had been asleep and when I woke up I couldn't follow the conversation that easily. I had all sorts of thoughts and I think that is part of processing what has happened. It is early days as you said, there is no rush to come to terms with the diagnosis, it is important you do it at your own pace. This charity has really helped me as well as I felt quite isolated after I found out about my meningioma.
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