Brain Surgery - How do I get better?

[ForgetfulWednesday]

Anyone happen happen to know what good aftercare looks like following brain surgery?
About 6 months ago, I suddenly got really sick and needed to have brain surgery. Now, don't get me wrong, I am extremely grateful for those amazing men and women working for the NHS who did the surgery, patched me up and saved my life...
But, the since I was discharged two weeks later, it been tough. Once the neurosurgery finished their bit, I was seen once a week or so (by a tropical diseases doctor???) while I was self dosing with IV antibiotics twice a day at home. If I had a question, I had to wait 1-2 weeks for a response as it took that long to hear back from neurologist. After 6 weeks of outpatient, I was fully discharged from hospital. It was more than 4 months after surgery before I was seen by a neurologist.
I didn't come here to b---h about NHS. I saw some true horrors when I was in hospital and the staff who have to struggle through massive under resourcing are truely heroic. I came to ask...Is this normal?
I don't want to bore you with details, suffice to say its having a huge impact on my 2 kids and amazing husband.

Is this level of follow up normal? What do I need to do to get myself better and to get back to being there for family?

Hi OP, sorry to hear about your ill health and subsequent surgery. My advice would be to find a Facebook forum where others have the same condition / operation and will be able to offer you support / suggestions / what to do. I have found 2 separate support groups invaluable when supporting two different people with diagnoses and treatment. Hoping that you continue to recover and regain your health fully again

Tropical disease DR? What was the brain surgery for?

Thank you. I’ll have a look (and turn on notifications or I’ll forget about it)

Garden variety brain abscess. Nothing tropical about it. Nice guy, but couldn’t help with lots of questions.

Suspect he was an infectious diseases doctor so monitoring you on the antibiotics.

Is your GP any good? DH has found his really helpful when it comes to post surgery stuff, it wasn't brain surgery but it was a multidisciplinary thing across more than one NHS trust so no other obvious point of contact.

Do you perhaps need some help from an occupational therapist? I suggest this as my sister came to live with us a few weeks after having a brain bleed and op. She received helpful tasks and exercises from an OT, referred from her GP. The OT visited once a week for a few weeks and was very helpful and reassuring. Maybe you should contact your GP and see what help they could offer you.

Ah OP this sounds so similar to my experience. The care I had in hospital was birlliant and they saved my life but there was little to no after care. My kids were so little at the time too. My advice would be to reach out to charities like Same You and Headway. I didn't know they existed at the time. Also, like PP have said, contact your GP. Good luck

I’d contact Headway for support and advice. ❤️❤️

I would say a brain abscess is a pretty rare condition and the 'tropical diseases' doctor would have actually been an infectious diseases doctor monitoring your treatment as it would be out with the Neurology remit once they had operated as you must have had a severe infection elsewhere that had spread to the brain?

What follow up do you feel you lacked? I have never worked in Neurology but would expect a 4 months clinic appt with your surgeon is probably as much as I would expect from when I worked in surgical nursing.

I'd also go with there being no 'common' sort of brain abscess. Infectious diseases would have monitored to make sure it was fully cured.