Brain Tumour Biopsy

[BellMcEnd]

My sister has been diagnosed with a tumour in her cerebellum and is having is biopsied in the next few days. It’ll be done under a general anaesthetic and because of its location and the risk of complications she’ll need to spend a night or two in ICU / HDU although this is more for monitoring - it’s highly unlikely she’ll need ventilating etc.

Have any of you had experience of a brain tumour biopsy? What should we expect in terms of how she’ll feel afterwards? The neurosurgeon has said it’s in an “awkward” position although looking at the MRIs he’s “cautiously optimistic” that it’ll be amenable to treatment.

I’ll be with her for the first couple of days in the hospital - are they any things you think she’d might appreciate that I can take with me?

It’s all been a bit of a shock and a whirlwind.
All advice and suggestions gratefully received!

No advice but wishing your sister all the best with it and you strength to endure this with her.

Ah, thank you Hopping, that’s really kind of you

Sorry to hear that. I have not had a brain biopsy, but have had a biopsy of the inside of my spinal cord. Neurosurgery is major surgery, even for a biopsy, and it took me about 6 weeks to feel even vaguely normal. I was tired a lot, and very emotional. I remember sobbing at the nurse changing my dressing because my hair looked greasy! I was supposed to go to HDU/ICU, but I recovered very quickly, although I had 1 to 1 monitoring. Afterwards, I had to take a steroid called dexamethasone to prevent swelling. That made me extremely hungry, and I had trouble sleeping. I had some sensory issues, and some bladder problems, which resolved themselves within a couple of weeks.

I had a specialist nurse who I could contact if I needed to, and could call the ward any time. As for things to take, ear plugs (good ones), I had a kindle I was very grateful for, headphones and something to play music on, pyjamas with a button up front (short sleeves are best to allow for monitoring), sachets of salt, maybe some treat foods and squash. Also, toiletries and body wipes, as feeling clean makes a huge difference.

Best of luck to your sister, and don't forget to take care of yourself too, both physically and emotionally.

I'm so sorry to hear about your sisters diagnosis. Unfortunately I have had a brain tumour. I don't have experience of 'just' a biopsy ( I hope you understand what I mean by just) I was diagnosed at 28 after falling ill very suddenly. The little bugger had been there for 10 years. I had a craniotomy to remove it and they performed a biopsy. The wait was pretty excruciating.

It look about less then a week to get the histology report.

Do they suspect your sisters is low grade? I have details for some brilliant charities which would be good for you as family to contact for support. At this point, I would advise you all, especially your sister stay off google as tempting as it is. Everything you'll find it pretty bleak. But there are plenty of people living a relatively normal life with inoperable BTs for many years with treatment.

Feel free to pm me anytime if you like. It's such a scary place to find yourself, I completely understand. My memory has suffered due to the location of my tumour but I will do my very best to remember to check back on this post!

my dh has had brain surgery to remove a dead bit of tissue that was causing seizure.
the brain isn't a weight bearing bone and there are no nerve endings in the brain soooooo pain was just local and relieved by just plain Tylenol.
he stayed in the hospital for 2 nights as he had a drain in place and they monitored to make sure there was no brain swelling.
once home he rested and did light work (washing vehicles, tinkering with a motor etc.) after a week he was reading his work e-mails and returned to full duties by the second week.
because of the size of his incision he did have difficulty chewing initially (sorry forgot that bit).

Hi Op sorry to hear about your sister. My DH has a brain tumour and had a biopsy when it was discovered 2 years ago. He is lucky, his is benign. His biopsy was done when he was awake and he was fine throughout, and recovered quickly. He had staples in his head for about a week afterwards. Obviously your sister will take longer to recover if she is having a general anaesthetic, but in terms of the wound healing etc it was all fine.
My DH is currently having chemo to try and shrink/stop the growth of the tumour but inbetween courses he is able to go about his day to day life, go to work etc. He is on seizure medication and blood pressure medication. He does get tired easily and is usually in bed by 9pm but other than that he leads a normal life.
Good luck for your sister, let us know how it goes

Oh you’ve all be so helpful, thank you! I’m so sorry that you’ve all had first hand experience of this.

lyrebird those are great suggestions of what to take in for her, I will definitely ensure that I take those for her.

Woah (great name) yes, the neurosurgeon thinks that judging by the MRI with contrast that it’s low grade and hopefully very amenable to treatment. It’s the position that’s awkward making the biopsy tricky. I can’t believe that yours was there for ten years! My friend’s sister had a meningioma that her neurosurgeon said would have been there since childhood - it was only when she had a series of fits in her 30s that they found it. This was years ago and she’s absolutely fine now although on anti epilepsy drugs for life.

Ivebeen wow, that sounds like a very quick recovery for your DH. I’m so glad he’s doing well.

Bluebell my sister’s neurosurgeon has said he believes she’ll need chemotherapy rather than a craniotomy and tumour removal although he hope it’s low grade. It certainly doesn’t appear on scan to be one of the really nasty ones. She’s in (otherwise) very good health and akthough obviously really scared she’s pretty stoic. All the very best to your DH.

Thank you all again so much. All your information and support has been so helpful to you all.

@BellMcEnd
Fingers crossed for positive news from the biopsy.
My DH cannot have his tumour removed, it is 'diffuse' meaning it spreads out and so to try and remove it would do more damage than good. He had an MRI after 3 rounds of chemo and the results look promising, he has one more round to go and then we will see. I think all you can really do is try and remain positive. I know it can feel bleak but we've been living with this for over 2 years now and you just get on with life really.
Best wishes and please come back and update.

It all depends on where it is, the ease with which they can get to it. My son had a medullablastoma. He had to go straight for removal in an 11 hour operation as it was extremely aggressive. He was in HDu for two nights then moved to another ward for a few nights. Before going on to the paed oncology ward. He was there for 6 months.

Hope for the best, prepare for every eventuality. At this stage there is very little you can do until she has her biopsy and you get results.

If she is in hdu it is unlikely that you will be able to stay with her.

I hope that everything goes as smoothly as possible for your sister.

minmooch I’ve read about your beautiful son. It’s so unfair. Brain tumours seem to be everywhere at the moment. My friend’s nephew died from DIPG which is an absolute bastard that no one survives.

I know the NHS is on its knees but there really needs to be more funding and research into brain tumours.

Sorry that your sister is going through this, it sounds like she's lucky to have you for support.

I had a meningioma in the cerebellum, and had is surgically resected 8 years ago. My experience of having that area poked around with was that I had temporary balance & vertigo issues that were resolved with physio. Initially after the surgery, I was unable to move my neck or lift my head, but this got better after a couple of days. I would say to your sister that, she may come round feeling like she'll never get up, feel normal again but everyday things improve. Advise her to rest and take it easy. I had some fairly elaborate hallucinations too. She may feel very nauseous so having snacks that she can take little & often might be helpful. Pack lip balm & baby wipes. I was in hospital 8 days and probably had about a 12 week recovery.

I was mum to a 22 month old when I had the surgery & have gone on to do a degree and have another baby since so there is hope.

Best wishes

I had a brain tumour removed from the brain stem. I've had issues with balance ever since and lost the hearing in one ear. Immediately after the op I was extremely sick after all the rummaging around and For the first few months after the op my face drooped on one side. I had 46 staples in my head for around 10 days and some hair shaved off. I had rehab and was off work for nearly a year. I have returned to work with a few adjustments to my working hours and lead a normal life now.

oatly and grumpy thank you - it’s brilliant to hear stories of recovery from this. Well done on your degree and congratulations on your baby, oatly.

With regards to the nausea, is there anything that helped you that I can take her? I’ve often heard that lemon essential oil can help with chemo sickness, do you think it would be good post brain surgery as well? She has had some nausea associated with the vertigo but it’s been manageable without any intervention so far. Any snack suggestions too? Do you think things like ritz crackers would be the right sort stuff?

Wow, grumpy surgery on your brainstem- I’m so pleased that you’re so well now.

I was very nauseous and couldn't really keep anything down for a good few days, but I don't know if that's the experience for everyone. To be honest it's probably best to let the medical team manage it with anti-emetics. Dry snacks are good but it might be a good idea to give her what she fancies. She will most likely be on IV fluids for at least the first 24hrs. My well-meaning annoying husband kept bringing all sorts of foods to my bedside and it was a bit overwhelming.

I have remembered also that I had a drain in for 48hrs draining my cerebral spinal fluid, once that was removed I did start to feel a lot better. I also had a catheter until I was up and about.

The skull base is apparently very tricky to get to so for long term treatment, advise your sister to seek a neurosurgeon that specialises in skull base treatment if she isn't under one already. I had my ear taken out and had a graft from leg put inside my head to reseal everything.

You sound really supportive, unlike my sister who complained that sitting between bags of my body fluids wasn't the best Thursday night she'd ever had! Or my mum who for some reason thought hospital curtains are soundproof & could clearly be heard saying "Christ you don't think her ear is going to stay like that do you" love them really

Wishing the best possible news and outcome for your sister xx I remember what a scary time it was.

Oh and my ear looks perfectly normal now

Please do come back and update us OP. I will be wishing you all the very best for the biopsy 🙏🏼.

Hi again bell. Wrt the nausea I literally could not move without vomiting. I was given various anti-emetics iv but in the end the only thing that helped was skin patches that were put on my neck behind my ear. Afraid I can't remember what they were called. I struggled with eating also due to my swallow ability being affected so I wouldn't recommend anything too dry as snacks. Hope your sister has her procedure soon and can concentrate on her recovery.

Morning everyone, today’s the day. I’m on my way to the hospital now as she’s going down at 9 following the MRI.

Gosh, oatley that all sounds very tough. You also make a very good point about not overwhelming her with snacks etc, I will absolutely bear that in mind as I think I could definitely go down that route if I’m not careful! I’m a HCP so I’m used to being on the other side, so to speak so I need to try not to over compensate for not actually being part of the staff, iyswim! It’s not the same thing, but my (also well meaning but annoying at times) DH kept trying to feed me weird shit when I was in labour which massively irritated me. I’ll sit on my hands if I need to

Woah I’ll absolutely be back - this thread is invaluable to me. I also have the bodyform advert song as an ear worm......

Grumpy ooooo, an antiemetic patch. That’s very interesting. I don’t think I’ve come across them I must ask our pharmacist about them next time I’m at work. Nausea and vomiting are awful. Unfortunately due to the location of her tumour I fear that this will be quite likely for her.

Once again, thank you all so much

Very best wishes today op

Good luck OP, thinking of you and your sister.

I think she is lucky to have you supporting her. You sound a very thoughtful and caring sister.
I would say some small snacks. Ditto wipes, lip balm and ear plugs. Perhaps a more expensive cordial like Elderflower which is refreshing.
Can't offer any more advice but will say a prayer for you both today.

I hope your sisters op goes as well as it can, and what a lovely sister you are

How is your sister doing? Thinking of you all.

Hi everyone!

So sorry for the delay, it’s been so busy my end, I’m exhausted!

So, she had the surgery - an MRI under anaesthesia followed by a mini craniotomy and biopsy on Wednesday. She then spent one night in the ICU purely for monitoring, she wasn’t ventilated or anything. She was very drowsy and queasy for about 10 hours but always fully orientated etc, she didn’t have as much pain as expected (but she is pretty stoic!).

She’s now eating a light diet and mobilising slowly. She still has a bit of dizziness / balance issues which her surgeon says is to be expected, this should resolve with time and steroids. Her vision is also a bit of an issue as she’s finding it hard to focus - again, this is improving slowly.

She should be ok for discharge home on Monday (according to the nurses and surgeons) then an outpatients appointment for suture removal and the all important biopsy results in about ten days.

I’m so relieved that this hurdle’s nearly over but we’re all so anxious about what’s next .

In other news, very unexpectedly, her SIL has been told yesterday that her uterus which she had removed semi-electively 2 weeks ago has malignant cells within it. This was not expected and even the surgeon was shocked. My sister is very close to her SIL so obviously we’ve not told her yet.

Honestly, 2018 can do one!

Thank you ALL again SO much: your support and concern has made an enormous difference to me. I’m the only HCP in our family and while I’m alway more than happy to help with anything at anytime it can sometimes be a bit overwhelming. to all of you - whatever is your virtual treat of choice!

Thank you for the update, it does sound as if it went well although obviously really tough to go through. Wishing her a speedy recovery and of course best wishes for the biopsy results. Also sorry to hear about your sister's SIL, what a nightmare Thinking of you all.

So glad to hear your sister made it through and is doing as well as can be expected. Wishing you all the very best for the results & for SIL too