Can I access Headway support with a Brain Aneurysm?

[Patient300]

Hello everyone,I have been recently diagnosed with a brain aneuryism by the NHS which sent me home with no support or follow-up plan other than a MRA check up in a year from now. I am progressively losing my sight in one eye, I have strong photophobia and headaches and neck pain but the NHS neurologist insists that these are not caused by my aneurysm, with no explanation for my symptoms and they said I should just wait and watch. My work life has been affected by my symptoms, I can't work as quickly as I did before because I get neck pain and headaches when I focus too much or for too long and I am afraid I will get fired soon. Do you know where I can access support also to ask for reasonable adjustments at work? Does Headway help those with aneurysms? Thank you

[Alibongo60]

Hi Patient 300, and welcome to our group, where I am sure you will get lots f support. I too have a brain aneurysm, had several surgeries but it’s very unpredictable and not conforming to the usual. I presume as you have been told they are going to watch and see that it is quite a small aneurysm, and that is what is worrying you, but I am sure if there was any concerns they would have had you back sooner, they are the experts and although they can’t predict everything they do have a pretty good knowledge. I don’t know how big yours is but when mine enlarged, I knew and asked my doctor for a scan an I was right , because of the pain and pressure, I was having. Have you had your eyes tested, what is the cause of losing your sight, does the optician say. I am sure Headway, will help you, I think they help all matters to do with the brain I think,. Do you have a HR department at work that you could go and speak to, and they should offer you support too. I hope you get some help let us know how you get on love Alice xx

[CanisLupus]

Hi

You could look into applying for PIP Personal Independence Payment, this will help with money meaning you don’t have to work so many hours? Check an online benefits calculator there maybe other support. Definitely see an optician and your GP may be able to refer you to a pain management clinic etc.

[Patient300 in reply to CanisLupus]

Thank you CanisLupus, I thought I wasn't eligible for PIP because I am not "disabled". I feel very much not like the person I was before with the dizziness caused by the photophobia, the immediate headaches I get when I get mentally tired. The most minimum amount of stress makes me have a headache, while before this wasn't the case, I could handle working in a fast paced environment with no problems. But I read brain aneurysms themselves are not a disability. GP gave me nerve pain blocking painkillers, told me to keep my eyepatch on for dizziness/photophobia and told me to work as usual. The aneurysm is there, there is evidence from a scan, nobody can deny that, there is evidence from the opthalmologist that I am losing my sight in one eye due to worsening repeated eye tests, but they are denying that my symptoms come from that. So they're saying it's not the aneurysm causing you these things, take painkillers, you're not disabled because of the aneurysms. I don't even want to be "classified disabled" I just want the possibility to take breaks in my job without getting fired.

[CanisLupus in reply to Patient300]

Safely To an acceptable standard Repeatedly In a reasonable time , these are the assessment for PIP, not the type of injury (or disability) to be able to maintain these at all times. Please look carefully into the process as you have to answer all the questions as if it was always your worst day. Call Headway, google info the funds are to support you in the best way you need. It’s not an easy form and it will take a while to do the process. But to be registered disabled means your work have to allow reasonable adjustments.

[Leaf100]

hi P300

You are in the right place, welcome.

And by all means give Headway a call.

They likely can suggest some other specialties to see,

I do remember meeting someone with some neck situation that was contributing to issues. I don't remember the 300 pound word for it, though.

The point really being that specialists have a narrow view and one in a different field, or sometimes another in the same field, may have an entirely different outlook.

Ask Headway for brain injury associations in your area, if you get in contact with them then will likely know which docs in the area tend to be helpful, and then you may be able to ask specifically for them which can save a lot of frustration.

Not every doc is brain injury literate, even if they are dealing with conditions that ciubt as grain injuries. Yes, it is odd, and unfortunately true.

Keep us posted.

Leaf

[sashaming1]

Of course you can access Headway.

[Alibongo60]

Hi Patient 300, unfortunately the aneurysm alone doesn’t count when claiming PIP, I applied at the beginning trying t reduce my hours to take it a bit easier but was refused I got no points, the only time that changed was when my aneurysm ruptured, the stress side alone should be taken into account, I wish you luck love Alice xx

[Shreds]

Get help to fill in the PIP form. I am sure you will be able to claim PIP and just highlight things as they might be on your very worst day.

I hate form filling and tick boxing as every case is different and never takes into account what your starting point might be.

Plus there are stupid time limits on claiming obviously set by someone who has no concept of the difficulties BI patients face.

So do persist: break the system if necessary, but do not give up.