Going to keep this abstract as I can, but here goes my bi-yearly serious post.

Someone I know had a benign brain tumour removed 5 years ago. They were told that progress will be slow, but there is no reason they would not be back to full fitness, but there may of course be some cognitive issues.

5 years on they are suffering from chronic fatigue, pain (fibromyalgia) and impaired cognitive functionality still (maths/reading skills etc). To the point they are in constant pain, walking to the shops will see them kiboshed for the rest of the day, not been able to return to work etc. Has to use a wheelchair for extended distances, and this was someone in their early 30s who was running and healthy before the tumour.

They get a scan every year, and see the surgeon who always says it all looks fine here so you should be ok. Neurologist has tried a few things, mainly medication which did get the seizures under control, but no joy really.

Now, not asking for specific advice really, more when they have their yearly meeting with the surgeon, and then neurologist, is there anything….in relation to tests/investigations/treatments…that they can be asking about to try and get to the bottom of what is causing all these continuing symptoms?

As to be honest they are really struggling with no signs of improvement after all this time. Well, it’s been the reverse. At the moment, with any new symptom or flare up of pain they go to the GP who will refer the best they can, i.e increased foot pain then off to a podiatrist who will suggest a treatment in isolation of everything else….and it’s obvious the foot is not the source of the pain just another component of the wider issue.

Thanks for any help. We’re kind of clutching sat straws at the moment.

Nothing to add but Fibromyalgia is a horrible condition I hope you friend finds a way to ease these attacks and symptoms.

sorry Jamie, nothing to offer except sympathy and best wished

(are you/someone able to attend appointments with them to ask the difficult questions?)

(are you/someone able to attend appointments with them to ask the difficult questions?)

Yeah. Be a family member, or myself. Thing is I can ask the questions, but need to know the right ones to ask. It doesn’t help when the person themselves is one of those ‘don’t want to cause a fuss’ people. Which is an admirable trait, but the non-squeaking wheel…..

I’m sure I’ll get pulled apart by the angry people… but how about a private consultation? Doesn’t mean you have to have private treatment, but at least get a more varied opinion and an idea of what is going on. At the very least they should be able to provide your friend with the right questions to ask, the right treatment plans to request or advise that unfortunately this is just how it is.

One medical approach (mine):

Ensure sensible nutrition intake ( bit.ly/cardiokitdiet reasonable overview ).
Look at gradually reconditioning his deconditioned muscles/core ( eg yoga/pilates/use footstep tracker).
Ensure sensible run of investigations have ruled out contributing factors. Usually means bloods to exclude anaemia/thyroid/diabetes/low vit D +/- testosterone etc.
Mental health assessment looking to exclude depression/anxiety.
Discussion around the fairly poor evidence base for long term drugs for chronic pain (others may disagree) and that restorative sleep is probably a key feature of recovery.
Ensure he does things which stimulate the “good bit” of his brain ie things just purely for pleasure.

But the combination of chronic pain/fibromyalgia is crippling and devastating and poorly understood so I’m note sure anyone knows what the best approach is. In an ideal world I think I’d try to cover the above, over time.

The only thing I can think of is to keep a dairy of all the problems, I realise this would be a depressing task in itself, but treat it as a data gathering exercise. When the patient attends any appointment or review they would have a detailed record of symptoms and effects, which might prompt further treatment, at a minimum, should counteract the stoicism.

but how about a private consultation?

Cost.

@dougal.

Will pass on the link. Most is being implemented in relation to diet, no booze etc. The exercise stuff is limited, which makes it like fighting with one arm behind your back.

Mental health assessment looking to exclude depression/anxiety.

I am no doubt the fact one can no longer do the very basic activities they did before can feed into a negative cycle which can perpetuate these things. Guess it’s finding someone who specialise in the mind > body connection from that angle.

The only thing I can think of is to keep a dairy

Can you please elaborate on how keeping cows will help.

Hi Jamie. Sorry to hear about the poor situation of your friend.
I feel I can offer some advice. Unfortunately I can’t help with the symptoms he experiences, however, in terms of quality of life and management of symptoms your friend needs to see a Specialist Neuro Rehab Occupational Therapist.
The bread and butter of the OT is to maximise the engagement of their clients in meaningful activity, thus improving quality of life, and hopefully, as a consequence, improving mental health.
They will support them to manage their pain and fatigue on a daily basis so that this barrier to meaningful activity is reduced. As a specialist in neuro rehab they will also be able to address his cognitive issues and will be able to provide strategies etc that again, will reduce this barrier to engagement in meaningful activity.
They OT will start small and begin with simple achievable goals, potentially working up to return to employment etc.
However, as he is 5 years post injury, he will likely not be able to access statutory services, but it will always be worth a phonecall with his local community or inpatient neuro rehab service to speak to an OT there.
The only option would be to go privately, and I appreciate there is a cost to this.
But what price do you pay for an improved quality of life?

Fibromyalgia is a bit of a medical label, rather than a bone fide disorder – so it may actually hinder access to appropriate care.
Private is a minefield – no guarantee of quality.
Anxiety is something not to overlook but again hard to resolve and NHS healthcare not really set up to help.
Sad, difficult problem.
Perhaps have a look to see if any units have research programmes that could be suitable. Longshot.

One off the wall suggestion would be acupuncture. Its the only one of the “alternative” medicines that actually seems to work especially with chronic pain. The explanations given for it make little sense but it does seem to work and has the advantage of not doing any harm. Some pain clinics use it.

Discussion around the fairly poor evidence base for long term drugs for chronic pain

I would agree – looking at this can do no harm and some of the drugs used like gabapentin have a lot of adverse effects as well as good especially on a damaged brain.

YOu need to find a doctor with both the skills and the will to look at the whole picture and review things from scratch. Neuro rehab perhaps?

In Edinburgh I could recommend a consultant to try to see.

The problem with brain injury like this is that it can present a diverse range of symptoms, and recovery is hard to predict.

It can also affect your mood and anxiety levels on top of what you’d naturally expect in someone with those symptoms, which makes it even harder to cope.

He may have tried these guys:

https://www.headway.org.uk/

If not, I’ve always found them to be one of the better charities, and they may be able to find an approach that the team looking after him haven’t tried yet, or suggest a specialist who has a particular interest in patients with this sort of condition.

Thanks for all the replies. Some good stuff I can pass on.

In relation to private/cost….

But what price do you pay for an improved quality of life?

Sadly it’s irrelevant if you don’t have any money because you’ve been unable to work for 5 years and living off benefits. Hopefully something can be sorted out via NHS.

Thnks again all.

I’ve been supporting my virtually house bound missus for nearly ten years now since she got cranial nerve damage. We have round and round in circles with every person she gets referred to either disagreeing with the diagnosis (but not offering a new one) and/or referring her back to someone she’s already seen. I saved up and got her some consultations privately but you just end up seeing people from the NHS in a different building..

The lack of willingness to actually get to the bottom of the problem is astounding. They can’t even be bothered to look back and see who she’s already seen and what treatment has been tried, which has amounted to sod all really. This a condition that has and is treated successfully by surgery in not only America, Japan, Germany but North Korea, Bangladesh and several other countries which we’re led to believe are backwards. But the NHS refuse to acknowledge anything of the sort can be done.

If we go in ready to listen she seems to get palmed off and if we go in with loads of info and research she gets labeled as wanting to have a problem. I don’t know how the hell you’re supposed to get anywhere with a problem which isn’t common and easy to fix to be honest. So I don’t know what the best approach would be, I think it boils down to finding someone in the NHS who is determined to get it sorted even if it’s not their field of work. At least they may be able to push to get it looked at.

I wish them all the best with treatment.

Maybe there is some chronic anxiety lurking under there? Must have been an extremely stressful time for him. Most of the symptoms you describe could be caused by it.

However if he is having convulsions and because of the tumour I think he’d be better off asking his consultant.

Hope he finds his answer.

Lot of sense in http://paintoolkit.org

Rachel

PM’d you some bits, may help.

Has the consultant mentioned neuropathic pain etc?

Sorry if I missed it.

After neurosurgery years back I’ve been on meds for neuropathic pain for many years and can give you some general info? Currently on pregabalin, clonezepam and amitriptyline for the neuro pain.