Hi i am new to the group brief history:
Diagnosed with grade 2 meningioma 2017 successfully removed and received 30 radiation treatments.
Since 2020 i have had mild left side pins needles and on 15TH May full left side pins needles paralysis, went to emergency CT scan showed scar tissue formation on tumor area.
Condition is getting worse a lot of tiredness then above symptoms.
it is the same condition post tumor surgery and treated with medication.
Appointment with neurologist on Monday to find out cause.
anybody any ideas support?
Thanks for getting in touch. Welcome to the Online Community. My name is Deborah and I’m one of the nurses on the Macmillan Support Line. I understand you’ve been through a lot since your meningioma diagnosis and treatment in 2017. I’m sorry to hear you’ve been experiencing such distressing symptoms over the past few months. I appreciate this must be worrying for you, particularly while the cause isn’t yet known. You absolutely did the right thing by getting this checked out and I’m thankful to hear that your neurologist is seeing you on Monday. Hopefully, they will have a better idea of what’s going on and how this can be treated.
Meanwhile, it sounds like you’re really struggling with tiredness, pins and needles and feeling generally more unwell. It’s really important that your symptoms are being well managed, even though we don’t yet know what’s causing them. If you haven’t already done so, you should speak to your GP about how you’re feeling. They may want to check your bloods and general health, just in case there’s something unrelated to your previous meningioma treatment that’s making you feel this way.
You might find our information about managing fatigue helpful. There are lots of suggestions on how to cope on a day-to-day basis. Unfortunately, there’s no one size fits all solution for fatigue but there may be something in there that can help you.
We also have some information on peripheral neuropathy and things that can help. It would be a good idea to speak to your GP about this too as they may be able to prescribe medication to relieve some of the discomfort you’ve been feeling. Your GP might also refer you to another specialist who can help you to cope with the effect this is having on your daily activities. For example, a physiotherapist or an OT may be able to offer treatment, equipment or advice on how to deal with any mobility issues or daily tasks you’re struggling with.
You mentioned that the CT scan showed an area of scar tissue where the tumour was treated. Radiation can cause changes in the brain tissue. Blood vessels may slowly become scarred and blocked, reducing the blood supply to some areas of the brain. This can have an effect on your brain function. Symptoms of this can include: problems thinking clearly; difficulty managing tasks that you previously found easy; poor memory; confusion; headaches similar to migraines that come and go. You might, as you mentioned before, also have symptoms similar to those you had when you were first diagnosed. Your neurologist may suggest that you have further scans, possibly an MRI or a PET scan to gather as much information as possible about any tissue changes. This will help them to decide the best way to treat you.
Another possible cause of your symptoms might be a condition called radiation necrosis. This is when the area that was treated develops a small area of dead cells. Radiation necrosis usually happens 1 to 3 years after the treatment finishes. It is more common in people who have had a high dose of radiation to a small area of the brain (radiosurgery). Most people don't have symptoms and do not need treatment. However, a small number of people might develop symptoms that depend on the area of the brain affected. If this is the case, you may have treatment with steroids or an operation to remove the affected area. Your neurologist will be able to advise whether this is the cause of your symptoms.
I know you might be feeling anxious about your upcoming appointment with the neurologist. I wonder if you might find it helpful to chat to other people who have been through a similar situation? Meningioma UK are a separate charity who offer support to people affected by meningioma. They have an online forum, similar to ours, where you can chat to people who might have a better understanding of what you’re going through. You’re also very welcome to give our support line a call. We offer emotional and practical support and would be only too happy to talk through how you’re feeling just now.
I hope this has been helpful. Please don’t hesitate to get back in touch of we can offer any further support.
I hope all goes well with the neurologist on Monday.
Best wishes and take care.
Deborah, Macmillan Information Nurse Specialist
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