Feeling desperate

[Liberty82]

My sister has hydrocephalus, only discovered in 2014 and she had several operations and had a shunt put in. She'd been having headaches for a while but not debilitating but since her operation the headaches are much worse and we think it's because there was some nerve damage done during the operation. She's only 37 and has 2 young children ages 6 and 7 and she's in so much pain its just horrendous to see. She's been suicidal at times and I worry that she could get to that point. Shes only recently been getting some kind of medical botox that helps with the pain but it only lasts a few weeks and its only available on the NHS once a year. She pays to get it every 3 months but the doctor said it'll get less effective over time so she only gets around 3 or 4 weeks relief. She can't work anymore due to the condition.

I'm sorry I'm not 100% clued in on all the medical terms as my mum and dad go to the appointments with her. She seen her neurologist and he said there is nothing they can do she'll just have to live with the pain and when she saw the neuro surgeon he just shrugged and said 'these things happen, I did the op to save your life so that's my job done'. We live in Northern Ireland and she seems to think there is no one else that can help. We'd go to America or England or anywhere to help her. We aren't rich by any means but we'd spend our last penny to get her her life back, my mum and dad are instantly worried about her. Her children know that mummy is sick and they worry as she's had several brain surgeries to fix her shunt and god knows what else. I've lost count. Once the pain was so bad she considered throwing herself in front of a train but thankfully because of her children she stopped herself. Could anyone recommend a neurologist or neuro surgeon or anything? She's tried medical massages, cbd oil, acupuncture etc. The only thing that works is the medical botox (not sure of its name but its a nerve blocker) but its short lived but we are grateful for those few short weeks every 3 or 4 months.

She was on tramadol but her gp took her off it because its addictive but better that than horrendous pain. If only these doctors could see the true misery its causing, the neurosurgeon was awful, his bedside manner really upset my parents and sister. The neurologist is a nice man but unfortunately can't offer anything other than sympathy.

She takes amitriptyline but I'm not sure how much that actually helps.

If anyone could offer any advice it would be do much appreciated. Thanks x

[cat3]

I'm so sorry to hear of your sister's awful plight and the worry it's causing for everyone. It's a complex issue with (it seems) no obvious solution in your sister's case. I suggest you phone the Headway helpline for advice on possible contacts who specialise in this area of expertise.

The helpline tel.no. is 0808 800 2244 - office hours/free calls.

Good luck in finding help m'dear & all best wishes. Cat x

[Liberty82 in reply to cat3]

Thank you so much for your reply cat, I really appreciate it. I will try the helpline x

[Kirk5w7]

I used to suffer from feelings of intense pressure in my head causing migraine like wipeouts every few weeks, but no pain. Neurologists i saw used to scratch their heads and say they couldnt help but to take paracetamol or ibuprofen which never helped at all, and my GP was equally at a loss.

After i insisted on a referral back to my rehab consoultant, who by the way helped the use of botox for neurological problems, he suggested i try pregabalin as he had found it helps some patients and in my case it did.

Pregabalin is the same family as gabapentin which is a widely used painkiller.

It may be worth mentioning this medication and see what reaction you get.

Janet

[Hidden]

This sounds terrible and awful for everyone. The headway help line mentioned in the first post by cat3 is very helpful, cat3 is also a great advisor on these message boards, please do speak to headway. If your after experiences, My wife had 12hour neuro surgery to remove a Tumor which wasn't successful and 2months later a VP shunt fitted. She is still on Gaberpentin 7months later, specifically for nerve pain which does help, its maybe worth noting for reference it has recently become a controlled drug and so may be harder to request from your GP.

Regards

[WinB]

I had a shunt fitted and I remember nothing before shunt was fitted I was in my own little world xx Talking to parents who died, the shunt sorted mine out. I would ask why Sis keeps getting head aches and say we are not satisfied. It must be bad for her to feel as she does. Ask them to check it out!! I had mine done at Kings College hospital and get the odd pain but not as bad as your Sis she needs help. Good luck and don't delay get her to see a Specialist straight away xxxx Good luck both. Mine is a permanent shunt as I'm older than Sis xxxx

[Hidden]

Messing with medication, they tried to say my dihadracodine was addictive which it is and stop it, I ended up snapping and getting it back. Ametriptelene is an anti depressant used sometimes to aid sleep having used it myself it can somewhat zombiefy so if not working stop using it, for my own constant headaches following surgery remarkably enough paracetamol are the best at easing the pain

[Hidden]

Hi I too have stubborn untreatable congenital hydrocephalus (I have ETV and shunt on the safest maximum setting I had bleeds post surgery) and because I am also epileptic take high dose of Tegretol MR which I believe as well as being an anti epileptic is used for nerve pain so manage to control my headaches with paracetamol. The most debilitating affect I have however is my lack of balance so am fairly immobile can’t have it all I suppose! Keep smiling Kate 😀

[Liberty82]

Thanks so much for your replies. They are very much appreciated and I know some of you are living with pain or caring for a sick loved one so thank you for taking the time to reply. I contacted headway who put me in touch with shine so we are going to try and get her an appointment with the best neurologist we can find. She's had countless appointments with pain specialists, neurologists, neuro surgeons etc, they don't really know why her headaches are so severe but they think there was nerve damage done during an operation. Thankfully today she had her nerve blocker medical botox type injection in her neck and she's pain free for the first time in months but this is only a short term treatment and will be less effective over time. So far this has gben the only thing that works. Pregablin didn't work, tramadol helped ease the pain a little but there have been times when she's been so bad they've had to put her on a morphine drip, that's when it's been unbearablely bad. She's had to have her shunt replaced twice since 2014 and her ventricles have always stayed larger than normal but now docs are saying that's maybe just the way they are.

Whatever is wrong she was fine before she had the shunt put in. She had a few headaches in the 6 months running up to her op but nothing that couldn't be dealt with with normal pain killers. She was diagnosed after she was driving and lost power in her left side and managed to pull over. So we are very thankful the doctors saved her life but something happened on that operating table that left her like this. We have no clause for complaints either as she'd to sign a form as it was brain surgery and of course there are always risks.

She's happy today she's almost dancing after having her injection this morning but we know in 3 or 4 weeks she'll be bedridden for most of the week with the headaches again.

I think she really needs to push the gp to go back on the tramadol but shes very soft natured so I think she won't speak up. That's why my parents go to all her hospital appointments because they'll demand answers and won't be fobbed off. Thanks again everyone you've all been very helpful x