balance: had a SAH in 2017 with a vp shunt. Had it... - Headway

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balance

Barnspops profile image
9 Replies

had a SAH in 2017 with a vp shunt. Had it reset over the years. On highest setting now 2.5. My neurologist discharged me in 2019 as I was doing so well. My balance is now awful. My GP cannot get me an appointment to see my neuro. I need my shunt checked. Any advice

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Barnspops profile image
Barnspops
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9 Replies
sashaming1 profile image
sashaming1

There are balance exercises that you could do so that at least your necessary muscles are up to the task.

cat3 profile image
cat3

Hi Barnspops. The response times to referrals are painfully slow but your GP has a duty of care to refer you on to an alternative neurology clinic if your own neurologist is unavailable. There will be a considerable wait of course unless the referral is marked urgent.

In the meantime, has your GP arranged for you to see an ENT specialist to eliminate other issues. I developed severe 'spinning' attacks (BPPV) post-SAH which were greatly minimised by the Brandt-Daroff maneuver at my local ENT dept. ; an exercise which can later practised at home, preferably with someone present until the dizziness subsides.

Dizziness & balance issues are common after brain injury. I still have poor balance (not dizziness) after 11 years.

If you feel your issue is urgent there's a chance you might fast-track by attending an A&E dept. in the hope of a follow up.

Also, Headway have extensive printouts explaining post B-i dizziness which you can either download or, alternatively, request a copy by freephone on 0808 800 2244 during office hours.

Take care m'love... Cat. x

Barnspops profile image
Barnspops in reply to cat3

cat

Thank you for your knowledge. It’s really is balance not dizziness but suppose they are connected. It had to be Addenbrookes as they hold the shunt reader tool. No hospital in Norfolk has a neuro shunt sister. If it’s reading 2.5. Fair enough. But as it had to be reset twice in 2022 I’d dearly like to know. Can’t even see me neuro from Addenbrookes privately as his sec says he doesn’t own a shunt reader!!! Fgs!

But thanks for your help. I tried the head balance thingy. Didn’t help. Onwards and upwards

M x

cat3 profile image
cat3 in reply to Barnspops

Surely a private consultant can refer you for a shunt check outside of their own practice Barnstops ? A relative of mine desperately needs a scan and diagnosis for a debilitating, life threatening issue but has waited 10 months for an appointment with nothing forthcoming. He paid £250 for a consultation a fortnight ago and is being dealt with this week at an NHS hospital in Leeds.

It's unforgivable how the NHS has been starved of resources these past 20+ years. I've always vowed never to succumb to private treatment but the Tories have us in a 'Do or Die' bind. I'm seriously considering the private option for a painful & debilitating leg injury I incurred 14 months ago.

Britain's healthcare system is now considered greatly lacking compared to other European countries, mainly due to the underhanded government ploy to privatise. Preposterous ....but true. Cat, x

lcd8 profile image
lcd8

So sorry to hear you're struggling. I think we're all in the same boat where neuro appointments are concerned unfortunately. I had a 'telephone consultation' last week but you really can't tell anything about what's happenings with these. I used to get called in for a check-up/scan every 2 years before the pandemic hit.

Barnspops profile image
Barnspops in reply to lcd8

i saw an expert Neuro sister at Addenbrookes during lockdown whi was concerned that my case having been so serious ninjas been discharged from consultantnlist after two years purely because I had fought so hard to get better. She said I should be seen every year. I’m

Still waiting.

itsallinmyhead51 profile image
itsallinmyhead51

Hello, I too have a head shunt and it was some time ago that it was fitted.It seems this is an ongoing issue as my Neurosurgeon has done the same thing.My advice to you is too,hassle your own G.P. to write to said surgeon,or ask your G.P.for a refferal of another consultant to get your shunt checked/re-calibrated.I dont know about you but when I get tired I get terrible headaches,and now I suffer with constant Tinitis,ringing in the ears.When my headaches are very severe,I tend to try and sleep as this is like a reset button and i wake up without the pain.Hope this helps a little.

Kevin.

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