meningioma headaches

[Clayden]

anyone still suffering severe headaches that wake them I’m almost 14 weeks post surgery headaches unbearable so tired . Feel left in the dark by doctors I wasn’t explained much about tumour it’s still bit surreal into hospital on a Thursday operated 6 days later and feel worse ever since I would love to wake up with no headache it’s seems to be never ending power in left leg arm arm doesn’t be great some days I have fear it’s coming back or am I just paranoid I’m on anti seizures could the be causing headache ????

[deepblues]

Hi. I am sorry to hear that you feel this way too. I had 12 hours of surgery 20 weeks ago to remove a large olfactory groove meningiom and I also have bad headaches. If I am logical, I tell myself that some head pain is bound to happen as tissue and bone heals and mends but I am not always logical with the pain! I was discharged with no notice, no advise, no support and told to get the GP to take out the 70 staples. No one explained what to expect or even how soon I could wash my hair......

The top of my head hurts so much, the ear to ear scar hurts too, the fiorehead area where the bone was cut out hurts a lot and my scalp is very itchy. I left hospital with no advise and have still not seen the surgeon for the promised 12 week post op debrief. I am on Keppra anti seizure meds and I personally feel they give me head pain, swollen ankles, nasal and chest congestion and utter exhaustion. In fact these are all in the user notes online but I was told this is not so by the GP.

So, we sound similar in many ways. I cannot suggest anything as no one has supported me either, my GP put up his hand and sait it was way to complex for him!

I have a very nasty phantom smell and taste even though I have no real smell or taste as those nerves were destroyed. I have asked for support as my mental health is worsening due to this. I have been allocated a 20 minutes 'chat' with a new junior trainee psychologist. I need a neuropsychologist who understands what the surgery was and can advise, support or help me, especially as it is worsening and not going away. I feel very alone and let down. It seems very common amongst people on thsi site.

I think the discharge after surgery with the lack of support for brain surgery is a disgrace. We are left floundering in the dark and cut loose to cope on our own. At a time when we are weak and confused, we need more support for the NHS in the first few months. I naively thought I would be well cared for after such a major long surgery.

Are you on pain medication? Can you talk to your GP about that and make any changes? I hope the pain eases for you and you get some relief. Sending hugs.

[deepblues in reply to deepblues]

PS If you are afraid of any return, you could ask for an MRI scan to monitor this and as a reassurance measure for you. I did have one recently, to show how much of the tumour has and has not been removed. This is to be discussed when I see the surgeon.

[Clayden in reply to deepblues]

I’m in shock the haven’t gave you your 12 week check up you should ring them asap it’s not good enough your going trough this you have had a lot bigger operation than I have had and the pain I have and had to go trough I can only imagine how difficult it is for you

[Trvlr in reply to deepblues]

I am very sorry to hear about this treatment of you. Do you have a friend or family member who could accompany you to your next appointment to be your advocate?

[Clayden in reply to deepblues]

I totally agree we are not informed of all the symptoms after surgery enough I do to feel alone in this in the last 12 almost 13 weeks I’ve been on morphine OxyContin for first 6 weeks numerous other medications since with no relief the headache won’t shift n is terrible in the morning and effecting my daily life I have been deaf since operation and asked several times for hearing test and if hearing will come back and promised every week the four weeks I was in hospital that hearing test be sorted nothing done so I’m in the dark not k own if hearing will come back my three month follow up no answers awaiting mri now as one was cancelled Tuesday everyday there something from weak legs to nausea I’ve been to A&E twice with headaches given OxyContin which I don’t like terrible nightmares I’ve a lump grown inside the head which I’m concerned for I believe the neurosurgeons takes your tumour out and after that the don’t care my own gp tells me every time I go in it’s not his field so he’s just been changing painkillers all the time it’s sad we have to suffer alone and nobody seems to be listening it’s not ok to be in pain everyday

[deepblues]

Hi. I have rung them and told them the 15 minutes I am allowed is not enough as I was not seen by the consultant before I left so did not have the benefit of that information time either. But 15 minutes it is. By the time my coat is off and said hello, that leaves a minute for each out=r of surgery to discuss it all!

I don't know what to say to help you or comfort you other than keep trying to get through to them. You have to be your own best health advocate now and it is important that you keep at them, for your mental health and pain. The new MRI will at least let you know what is happening so worth persuing and asking them to do it asap. I don't know about pain meds as everyone is different and everyone's reactions are different to them.

It is not sad that we suffer without NHS support, it is downright wrong. The system is broken when they send home brain surgery patients with little or no information or support.

Keep trying the hospital, do you have your consultant's secretary's email or phone number or a number for the ward you were in? Sending hugs.

[Clayden in reply to deepblues]

there is a group on Facebook called meningioma group I just set up Facebook book page today and joined it and I’m finding out loads it’s about all sorts of tumours so if your on Facebook it’s definitely one to join to get that bit of extra support we all need thinking of you xx

[Trvlr in reply to Clayden]

Hey Clayden, thank you for the resource. For me personally, FB is so void of respect for privacy, I deleted my account over ten years ago.

[Trvlr in reply to deepblues]

I am so sorry to hear that your medical care is inadequate. I can relate as I live in the U.S., and medical care here is a complete and total nightmare. It should not be to tough for anyone anywhere. Health care is a human right, after all.

[deepblues]

Thank you. I don't have social media, a friend's family had such a bad time using it that we all withdrew. I know there are more supports out there on FB but for now i am concentrating on getting to see the surgeon and the 15 minutes I will get to discuss the whole situation. Maybe one day i will try FB again. I hope that you find more support on the FB site, I am sure there are many more users there. Good luck and hugs. x

[Clayden in reply to deepblues]

Headache woke me it’s so bad is it ever going to end feeling nausea too , life is unfair to us that we have to suffer like this I’ve never felt pain until this tumour was. Removed out of sleeping tablets too been on them since operation in so tired of living my life like this I actually don’t have a life , a life of pain will I ever feel normal n pain free that’s all I think about these days I hope it not in pain xx

[Emz8311]

Recommend speaking with the brain tumour charity lots of advice, support, ect.