So I went to a private physio yesterday who specialises in brain injury. I’ve been having balance/dizziness problems and some co ordination issues as a residual symptom from stroke and honestly the NHS were totally useless.
For context the NHS physio didn’t know how to rehab vestibular conditions and watched YouTube tutorials while in my house/‘treating’ me. I was kinda on my own and doing my own rehab I’d researched.
Adding to that they offered trying to treat me for inner ear issues…. It’s my brain that is the problem.
Oh, and she said, and I quote, ‘nothing you do for rehab will help the symptoms more than just time spent day to day and your brain adjusting to that’ - then why do any rehab, for anything, ever??
Anyway off I went yesterday for an almost 2 hour session. Vestibular is often a symptom of serious concussions, so while my brain stem stroke is rare ish, she has treated a lot of professional athletes suffering from brain injury with my same issues.
I’ve already noticed an improvement and I’ve only started. Physically it was worth it to go, and I’m going next week for follow up armed with new training.
But socially it was worth it as a lot of time was spent explaining my issue, case studies of similar issues (and worse!) and I felt like there was a light at the end of the tunnel.
A tunnel honestly constructed by the NHS physio that left me on my own. I left it 11.5 weeks before I went. My only regret is not going sooner and thinking/assuming I’d be pointed at least the right direction by now.
My take away from this is, don’t let the NHS guide your recovery. Take it into your own hands and go to a private specialist neuro physio. You will see the benefit.
we’re on our own ; wait for no one. I have my team, but nothing empowers me more than my own research & hard work. Nobody can do it for you. Besides, they have not experienced anything remotely similar. I have had to learn how life & the human body works. Good luck ; let us know what you learn & discover.
Also want to add to this, question everything. If you aren’t happy with the answer, look it up and or get another opinion.
A lot of research (and those giving it out) are extremely out dated. We have a mass amount of information at our fingertips, for everything we could ever need.
Good to hear that you have found somebody who can help you
My own experience somewhat matches yours. I have found that my own researchers are necessary and often give me enough context to understand that professionals I am talking to are generalizing inappropriately plus they do not have visceral understanding - haven’t done the basics of reading notes for example!
My experience is little different from yours in that I have found private practitioners can be as ignorant as public sector and rarely but possibly public sector can be knowledgeable and able at the top of capability.
The one thing that causes me angst with the national health service is that there seems to be no process by which you can say “this person is not doing what I need I want somebody else” - I suspect that’s because it would be a mechanism by which the worst of the vaguely competent would get weeded out fairly quickly - but with with the current arrangements They can survive for longer at our expense in both our health and our taxes
Yeah I get that Simon and do agree with you. I struck lucky with this one I reckon (we shall see over the coming weeks/months), but from previous injury etc not all private physios are inherently ‘better’ than the public counterpart.
@matt_d13 great to hear that you’re already seeing some benefit from your visit yesterday.
It’s strange that the NHS physio didn’t offer vestibular exercises. I got them from my NHS physio. But it was a neuro physio I saw rather than a “normal” physio. Maybe that was the difference.
Yes, we are in chargw of our own destiny and we should question everything. My biggest worry about the NHS lottery is for those who can’t afford private rehab.
Hi Matt, I totally agree. Why is stroke rehab so frustrating ??
I 'm 7 years post stroke and have met some great neuro physiotherapists both in the NHS and privately. Unfortunately if you are seeing someone privately the are very expensive and therefore not available to everyone.
The last private neuro physiotherapist I saw cost £100 an hour. I recently asked my GP to refer me to a local Neuro Rehabilitation Team and had 7 weeks treatment with them.
I have to say that the most knowledgeable and informative professionals I have come across since my stroke have been Neuro Physiotherapists and if you find one you can work well with, they are worth their weight in gold.
I’m glad you have found someone to help you, keep us posted and I hope your recovery goes well.
Ditto, had no input into physio for my vestibular issues, was left dangling in front of the computer. I’m still agog at the level of training, recently went to a hospital for suspected TIA (cerebellum), the doctor there sent me off for a CT scan, I informed her that a CT scan won’t show up a further TIA in the cerebellum, had to comply but have meeting with stroke team at my old hospital, where I was sent after stroke, so can organise an MRI from there.
Another deja vu moment was when I first saw the doctor and expressed my concern of another TIA, she suggested it might be BPPV. You should have seen my reaction, since four years ago, GP misdiagnosed my TIAs with BPPV.
My physio recommendation, back then, was similar to yours, physio watched some YouTube videos and then sent me the links. However, mostly unsuitable for vestibular/oculomotor problems.
Yep. I know what you mean re the cost and NHS lottery. I do also think the same way.
Add in I’m not ‘too bad’ symptom wise, I really worry about those less fortunate AND unable to afford private treatment.
However, mostly unsuitable for vestibular/oculomotor problems.