Have you discussed your symptoms with a Neurologist?
If not, I would start there. Document the symptoms you're experiencing in a diary. Record duration of the symptoms, and if it impacts your sleep, moods, depression/anxiety, anything out of the norm. Then go to your Doctor and get a referral to see a Neurologist. Google Neurologist's in your area that specialise in your type of injury or similar. They may suggest getting an MRI scan done, but keep in mind that MRI's don't necessarily show all damage, they only show significant areas of damage (and from memory only from formed scar-tissue).
are they a neurological rehabilitation occupational therapist ? That’s who I was seen by. A generic OT is not best placed to say.
I agree with the comments from James. You need to get appropriate reviews by the right specialists before simply making complaints about those you have already seen. It will just descend into a he said she said state and no useful forward progression.
Keep your powder dry, get supporting evidence for yourself then go back with the right answers and ammunition.
I’ve replied further down below to all the replies but remembered I forgot to mention the title of the person I saw was ‘advanced occupational therapist’. They didn’t have the words neuro included.
But they are the therapist for the head injuries unit in my area.
I’m unsure where you live but for me I’m in Cornwall which don’t have neuro rehab or hospital ward .. I’m four years fighting and paying private for information on my injuries ( including a ruptured hamstring that was missed in hospital) .. for me the best I can get is information to help me understand why I am who I am .. and luckily the old me knew a lot about head injuries from previous jobs I had done so I did my own rehab 🤔 .. keep fighting for YOU … and please keep us updated on your PALS issues .. all I got from then was all of my records of my stay in hospital as I have no memory of being in hospital plus it was COvid lockdown and I had no visitors of information passed on to my husband ..Sue 🥴
Initially, I was treated for mTBI with the head injuries unit since October 2023.
It was just strange after the second assessment in May they said I could continue at home with the vestibular physio exercises and as then had lots of trips from Newcastle to London for my wife’s cancer treatment every week we would pause the occ heath work until my mri result and I wasn’t as busy constantly triggering my symptoms
They said they needed the mri to know if it was a “hardware or software” issue with my brain.
But then, once I said I was ready to continue the support they just said they couldn’t make sense of my recovery. Why I wasn’t improving and performed worse and then just dismissed the mTBI with no mention or reference to post concussion syndrome.
Because I didn’t expect to be in the situation and was told I would get better in a few months I didn’t really pursue my solicitor. But after 4 months or so and when I realised my brain wouldn’t function for work needs I then started to organise the legal side and now I have private occ health starting next week and hopefully seeing a neurologist in January.
It’s just taking so long as at first I didn’t think I would need anything, then the defendant orginally went not guilty but then changed to guilty which helped to speed things up.
It must be so hard for those with no access in their area. At first I thought I was lucky as the vestibular physio did help a lot and I was seen in a few weeks due to a cancellation.
In that side though; they said they have done everything they can but I still have issues with dizziness and gazed eyes, more so when fatigued or reading etc but when I look online at YouTube. The intermediate and advanced vestibular exercises trigger my symptoms like the first ones the nhs gave me after the crash. So I know there is still lots
Of work to do and it’s a shame the nhs only gave me the basic exercises.
I know others have even greater difficulties, but even with mTBI or post concussion it’s ruined my life as I can’t work, everything is difficult so nothing is enjoyable and all I do is fight through each day hoping it’s one day closer to recovery.
And then now I feel like I have to fight with those who I thought would be helping.
I’ll keep everyone updated. Even if nothing changes for me, hopefully my concerns are noted by the occ health therapist and my complaint may benefit others in the future
I am unsure if this will give you any reassurance but my husband had a catastrophic fall in December last year and was only discharged from the Neuro rehab unit in August of this year following a long and intense therapy journey - the outcome of that was that we had two choices, enable 24 hour care (indoors with a light touch but outside significantly) or the alternative was residential care because he had lost all connection with executive function and was considered extremely high risk (stated in the discharge documents). He was kept back in the rehab unit an additional 6 weeks specifically because they wanted to work with him intensely to see if they could recover any insight into the injury and what deficit it had left my husband with, because this is key to him being able to make safe judgements on risk. However, it was deemed that the damage was so significant that my husband made no association with the deficit and believes he is unaffected by the fall - therefore remains highly at risk.
After two weeks of OT one hour visits from the community team they believe that he should be able to walk unaccompanied outside and they have already started the process of walking 100 yds behind him - this terrifies the life out of me because if the stimulation along the road is too high, that takes away his focus and at that point anything can happen. Equally, they are trying to get to a point whereby he can now stay at home unaccompanied for periods of time. Thankfully I work from home and this will never be the case, however, who, when we have it in black and white that he needs 24 hour supervision because he cannot measure risk (and he has the memory of a goldfish) will cover the cost of rebuilding my home if he decides, when I am out, to cook some lunch and leaves something on the stove that he forgets and causes a fire!!!!!!!!!! I have raised my concerns that they just aren't getting it, but they dispute the fact that he cannot achieve this - even with no executive function.
Community teams are there to support, I get that, but they are not specialists in their field. They deal with a wide number of various issues relating to their role and head injuries (mild or otherwise) are only one of those.
I would seek a referral to a neuropsychologist who should be able to test you through a full suite of neuro testing so that they can pin point where your challenges are. As most will tell you - every injury is different. Every brain is different. Every recovery is different. However, what is relatively the same is the range of testing which will be able to identify what your challenges are and that may give you some reassurance that it isn't something that isn't real.
Wow. You poor lamb. Might it help to put in writing to the superior in the office, when they follow yards behind etc, that you are putting in writing that this is happening, that you believe it is putting him at risk for the following reasons?
They know what That means - setting up evidence for a legal case which will affect their careers and go to the media should anything happen .
I’m sorry your husband has a challenging recovery journey and the difficulty this must have for you. From the stories I’ve read, lots of people say recovery continues and just to keep the hope so I’ll pray your journey gets easier.
The occ health has since replied and just said the assessment couldn’t be scored and was inconclusive. But it was a major failure and too difficult for me.
I’m hopefully seeing a neurologist next month via the solicitor so fingers crossed.
It’s just hard to struggle through and then just be dismissed. But hopefully they listen to your concerns and you and your husband get what you need!
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Help advice needed. 
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Stressful day ahead
Venting/advice Post Concussion Syndrome
