this is my first post but I have been reading others as sometimes they help confirm how I feel.
In August 2023 I was hit by a drunk driver and still suffer with mild TBI issues with cognition, memory, fatigue, vistibular issues and pressure around my ears.
Everything is worse when tired or any little stress.
CT scan the time was clear and I had an mri in June which has only just come back showing a 16mm pineal cyst.
has anyone else had a cyst and TBI, were they linked or just a coincidence. Gazed eyes is an issue in both.
nhs have said in need an enhanced scan with contrast to check the cyst further but waiting list is 5 months plus 2-4 for the results.
im worried the cyst may not be linked and has maybe grown quickly so could be a risk, or if it’s not the reason for my issues then is it likely to increase due to the crash and TBI issues.
I was going to get better so I was late sorting issues with my solicitor which has only just started but hopefully they can arrange private treatments such as a dti scan.
just wondering if anyone else has dealt with both issues and what was done.
could anyone recommend a good private neurologist or surgeon who could give a second opinion and do the enhanced mri and possibly the dti?
12 months is already such a long time and everyday is just difficult.
I am seeing the head injuries unit for vistibular physio
thanks
Nick
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Hi Nick, pineal cysts are most commonly caused by hormone imbalances. TBI's can cause hormone imbalance.
The NICE guidelines now say that a hypopituitary test should be carried out after a head injury to check for hormone imbalances.
Go to you GP and ask for one, if they say no then ask them to check the NICE guidelines for head injury. This test was only added in 2023 so they may not know about it.
These cysts are usually 4-5 mm so yours is huge if they said it is 16mm. Ask your GP to expedite your referral.
Don't worry about the other head injury symptoms get this sorted out first.
Don't worry about your legal case because you have three years to start it and if there are any more medical issues these get added to the claim which will make your case stronger. DTI scans are not yet used in legal cases, plus they need to be done in the first 2-4 months after injury because your axons either heal or die after that so it will show nothing unusual plus your immune system clears up the mess.
Hope that helps,
Remember go to your GP and ask to confirm the size of the cyst, if it is 16mm ask to speed up the referral because it's bigger than average and can be sorted out quickly. Also ask for a hypopituitary test to see if you have a hormone imbalance that's causing the cyst issue. don't forget to remind the GP of the new NICE guidelines 2023 for head injury assessment.
Hi - thanks for the information. This is great help, I was banking on the DTI to confirm my issues but I guess I can put that to the back of my mind. I was kind of hoping the DTI would be clear and then I could be more confident if the cyst was removed then I would be back to normal or see huge improvement.
Sadly, my solicitor from the insurance ignored all my documents in the first few months I was sending from the head injuries unit so I ended up moving to a new one in February.
I recall getting my hormones checked and my bloods. But they come back as satisfactory although my neutrophils were 1.87 which is low and also low microcytosis which indicates iron deficiency. I didn’t see a copy of my hormones but I will request them as I uploaded my bloods to ChatGPT to see if the analysis matched what the doctor said which is how I know some were low.
I have an appointment with my GP at the end of the month to review everything.
Will a functional MRI be worthwhile? I know my issues but this would just help show something as it’s hard when I’m keep being told I will improve and to be patient but I’ve stagnated since February time. The first few months my vistibular and memory improved and my sensitivity to light and noise but it’s still bad, just not at the point where it makes me instantly feel sick, it just builds up during the day.
I was able to organise an mri with contrast on my insurance.
Below are the findings. I’m seeing the GP tomorrow so will see what the hormones showed. I think I may have had a delayed bleed after after the original CT scan which was done within a few hours of the crash. Through the night my head felt like it was going to explode and the next I was sick until 10pm. I then had a severe headache for 5 months.
A proteinaceous pineal cyst is demonstrated with maximal dimensions measuring 16.9 x 9.2 mm on the sagittal
FLAIR sequence. Some heterotopic calcification is noted on the rostral aspect of the cyst.
thanks for your earlier replies
From the report:
There is modest local mass-effect but no compression on the tectum or sylvian aqueduct. No hydrocephalus is shown.
No pathological enhancement is seen postcontrast.
The remaining intracranial appearances are unremarkable.
Good that you have got a suggestion for your GP to send you to a neurologist, hopefully that will be soon and they will know what to do with it. Be interesting to know what the hormones show, whether they have an impact or not.
Good that your insurance paid, your GP should have done this. Make sure the GP does the right thing and refers you as the report suggests. ask for it to be expedited so you can get in sooner.
Good for you for doing this and hopefully it will kickstart some treatment and rehab.
I think I had my hormones checked back in March. I need to ask as I can’t see them in the nhs app like the others but they were done at the head injury unit and the others were done at the GP so maybe just a system issue.
I’m booked to Professor Andrew McEvoy next week. I couldn’t wait for the nhs as I still don’t have a consultant and no one was free to review the report so I had it done privately.
I could be patient with the TBI issues but panicked thinking the cyst could be more critical so couldn’t wait.
Will hopefully have a plan next week but over the last 12’months possible Brian surgery wasn’t on my radar!
The cyst is more important, the mTBI issues can be sorted later, it takes a bit of time but they can be fixed or you can adjust your life to live with any elements that can't be resolved. I've done this and know it can be done. Rest and stay away from sensory triggers that cause overload such as sound, screens, LED lights and also vigorous exercise. Reduce as much stress as possible, try not to worry, be pragmatic and take one step at a time. Neuroplasticity works at any time and at any age so you'll be ok, sort the cyst first and go from there.
Thanks, it took me a while to finally accept and take the rest needed.
First 3 months I tried to work, although it was mainly work 30 mins sleep, work, sleep then work. Eventually just couldn’t do it and the mistakes became apparent.
I’ve only done very light cardio but even then, once my heart rate goes above 105 I start to trigger all the symptoms.
It’s hard as everything triggers the symptoms so just need to be careful and try to manage.
Focus is now on the cyst, I was very lucky and got a cancellation for Thursday to see a neurosurgeon so hopefully will finally know what is needed going forward. Although, potential brain surgery was never on my radar, I was just thinking the scan would indicate how serious the TBI was or if it was going to be classed as post concussion syndrome.
First neurosurgeon I saw said the cyst is not causing any issues. No CSF or hydrocephalus and the cyst has not changed since my CT scan August 2023.
I find it strange he said the mass effect at the rear would not be causing or contributing to any of my issues.
It kind of felt like they were only worried about anything life threatening and anything else isn’t worth the risk of surgery.
They just said I should really see a neuropsychologist for post concussion syndrome. Solicitor has organised a neurologist for January so I need to see why they can’t just organise a neuropsychologist as well.
The GP has also request an nhs neurosurgeon to give their opinion on the latest mri. This way it’s quicker than waiting for an appointment and I can at least get another opinion to the private consultant
2 week wait isn’t ideal but I can wait, hopefully as my issues are not getting worse then it’s still safe.
I’m still not sure what the full issue is with my head if it’s structural or functional. Combined speed of the crash was between 90 and 100mph and he just missed my door with the impact and hit the passenger side behind me.
I then had a sudden stop in the bush so I think the high impact, 180 spin and sudden stop have stretched or damaged the axons.
Was just thinking if I had every scan possible then at least I would know. It’s hard as sometimes my brain works and can think and then other times it’s just really simple and can’t do easy tasks.
I’ve saw online if symptoms are due to TBI maybe the cyst isn’t causing an issue, although it’s large and then maybe any surgery isn’t worth the risk if I still have issues afterwards.
I’ve taken a few screenshots of my AI I use, I find this useful as I can’t have the brain energy to search google, read, remember and then try to link things together.
It’s very useful but you just need to think of the correct question to ask. Usually takes me a few times.
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