Diagnosing mild TBI

[CTea]

I am looking for answers/diagnosis for my son that was injured in a fall in 2010. He suffered a basilar skull fracture and had a concussion but no internal bleeding. We felt so very fortunate, but in the last 2 years he has suffered depression and began to drink excessively at times and has had 2 seizures. His vision has begun to deteriorate to the extent of needing glasses and he doesn't seem to want to socialize or really to do anything but stay at home and watch TV or look at his phone. He doesn't seem to have any physical limitations so most doctors and even family think it is just depression but unrelated. I have had MRIs after the seizure last year but the neurologist said their is nothing presenting on the MRI that shows a traumatic Brain Injury. I have read extensively about mild TBI and the biggest hurdle seems to be diagnosing it since. I hate to see him suffer, he says he started to feel like life isn't worth living since after the accident...He has gone to psychologists but won't really open up and share. I am trying to get him to a neuropsychologist for further neurocognitive testing as well. I am located in Florida. Is anyone familiar with functional MRI's that allow diagnosis with both cognitive tests in conjunction with MRI to help diagnos? Or any other diagnostic tools that may help? Thank you in advance!!

[RogerCMerriman]

To the best of my knowledge, it can be quite hard to physically prove a Brain injury after the event.

I most certainly did have bleeds and so on, but a MRI is unlikely to find much.

I had cognitive assessments 6 weeks or going once a day to have a day of doing tests and what not. That might be more fruitful though to what end?

One of the doctor bods did talk about be interesting to run a Function MRI but that would be her curiosity than a medical need.

[CTea in reply to RogerCMerriman]

Thank you

[pinkvision]

as you are in the US check out alternative diagnosis, for vision check out 'Mind eye institute' or Padula institute. For cognition try 'Cognitive FX'. I you can get to Canada, try St Joseph's hospital, London, Ontario. There are two paradigms for TBI diagnosis, the standard medical one where if it's not seen on a scan they regard it as psychological and depression related. There is also the functional route that address sensory, perceptual and cognitive as separate issues. The hospital in Ontario takes the best of both worlds for an integrated approach. Separate private providers in the States can also address the issues. A really good starting point is the Mindeye institute in Chicago, with Dr Deborah Zelinski for vision and Dr Donalee Markus for the cognitive. They also have the associative vestibular training providers. Read the book 'The Ghost in My Brain' by Clark Elliott. He is a scientist that had a mild TBI, he got nowhere in the health system but found the Mindeye institute and they solved the TBI issues and he got his life back.

Good luck.

[CTea in reply to pinkvision]

Thank you so very much, I will begin to reach out to them today!

[Leaf100]

Hi CTea,I see you are in the US.

Have a look fir The Brain Injury Association of America, you will find information and more importantly a local branch in your area, who will know how to direct you to a local brain injury literate doctor near you, and will have other resources you will find useful.

It often really helps

Newly injured people to talk to others with the same issues because often people are not really aware what is going on for them - yes they notice changes but not what they mean. Also, having someone (not family) say oh yes and you x, y , and a as well can help the penny drop... and some can get stuck in just drifting along.

It is common for people with so called mild traumatic brain injury to not have anything show on an MRI, though the injury effects can seem far from mild.

Anyway, check our the website for The Brain Injury Association of America.

This is a good place for contact with people who have a bi of some sort and their families, I think ost tend to be in the UK and have access to a support system called Headway... I am I Canada and we have a Brain Injury Society set up here.

You will also run into the term "functional neurological disorder' or FND which I will give you a heads up about. How it came about was in the days after WWI when many soldiers had, for example, concussions that resulted in say severe tremors - they were labelled as shell shocked and then another label convergence disorder- which basically linked psychological issues with bi issues. For example you can shake badly due to fear or you can shake badly due to neurological damage. My guess is insurance co panies like this intertwining because they have to pay less for psychological issues. The way this was explained to me - by one of the co founders of a non profit set up for FND, was the new term was to divorce bi and other injuries that result in observable functional issues from the psychological category of official medical diagnosis and into a different category because peoplare often not getting the correct treatment. From the small amount of time I have spent here it seems I the UK anyway the label functional is applied and it seems to be down to psychological and then another label like Post Concussion Syndrome may be applied , which seems to acknowledge the physical cause. For me, living in Canada, the Post Concussion Syndrome label is what I was handed earlier on, and the ot ws changed to Functional Movement Disorder, Functional Cognitive Disorder, Functional Neurological Disorder... I have no idea how these labe

S are apples on the US. Just do be aware some doctors will overlook the physical side and try to treat this as a psychological issue when it really is not - sure, such massive changes can result in depression and anxiety but they are a symptom of living with the bi, not the cause of the bi symptoms.

I feel this is something you need to be aware of.

Your local brain injury association will know the names of the special

costs in your area who can be helpful and that is a very good thing - many do recover (often with residual effects they learn to live with) and for others it is a life long struggle - his best chance is getti g to literate doctors early as the most healing happens in the first 2 or 3 years.

Sorry, yes, this may be a very long haul, so pace yourself.

Also, being angry easily and extremely sensitive especially in the beginning is also very common. It will seem very personal but it is not, the brain is inflamed and it is a symptom. Though, having said this it depends in where the injury is and the person's interests before, each case is a little different with soegeneral tendencies. So be patient with yourself and him, this is jot like a broken leg where there is an xray, a cast, and a clear program of physio. You will likely become more aware of different symptoms as time goes by and he starts trying different things.

Take good care, he is very lucky to have you in his corner.

Leaf

[CTea in reply to Leaf100]

Thank you leaf, I appreciate the information! I have heard of FND through my research and will look further into the Brain Injury of America as I had started there a few years ago but my husband kept telling me he didn’t think our son had a TBI…I will circle back around to look for doctor in our area!

[Leaf100 in reply to CTea]

Given your son cracked his skull and got a concussion it would not be unusual for him to have post concussive issues. Not everyone has physical issues. The lack of being able to do things,visual issues, and self medicating with alcohol, are not unusual either. Yes, he may be depressed - but it that may be a symptom - not the main issue. A bi literate doc will know the difference. You may want to find an experienced neuro psychiatrist or neuro psychologist, both know about brain health and psychology. (Neurologists, in my experience, tend only to recognize traumatic bi.)

[CTea]

Thank you for all your responses and I want to tell you all how sorry I am that you are suffering daily with this so misunderstood and debilitating injury…with the newest advances in technology and more recent investigations and understanding of this injury, my hope and prayers are in finding better ways to help the brain recover and take away the stigma that seems to come with the side effects such as depression and being lazy and lacking drive or motivation etc…I will continue to research and if I find any help for my son I will share!

[Painting-girl]

Hello CTea, so sorry to hear your story. Leaf has made a lot of excellent points here I see.

I will add, that FMRI still tend to be used mainly in research settings. Plus if your son is saying that life isn't worth living, he is badly depressed, and should be treated for that sooner rather than later, whether it was directly caused by the BI or by living with the effects of the BI. As a group, we are vulnerable to repeated depression and anxiety.

Neuropsychiatrists are the best people for choosing drugs, and are very careful at taking medical histories - you will find they are then quite happy to diagnose a brain injury based on the medical history. Though I doubt anyone would suggest that he didn't have a brain injury after a skull fracture. Concussion is a (so called!) mild traumatic brain injury.

Your son probably needs drugs and talking therapy, to get him through this present time, and a neuropsychologist is also a good call, as they can coach him in coping strategies - but that will probably come easier for him to work on with some meds in the background as well. Depression and TBI cause a disturbance in the white matter, and interestingly enough, long enough treatment with an SSRI or SNRI, will resolve the disturbance - so think of these as a physical rather than mental intervention. Our brains are more susceptible to drugs though, so the mantra is 'start low and go slow' - which is why a neuropsychiatrist specialising in brain injury is a must.

The best book I've read for describing what neuropsychologists understand about brain injury and coping with it, is actually by Jody Mardula and Frances Vaughan called Mindfulness and Stroke, living with brain injury - I think all families of the brain injured should read it - for the easy to understand commentary in the second half of the book by Frances Vaughan the neuropsychologist who co wrote it with Jody Mardula ( a lecturer in mindfulness at Bangor University at the time she had her stroke) so that might be useful to get hold of? It's made me realise that much more is known about the effects of brain injury than I thought.

The other people in the States that we hear of over here, are Leddy and his team at Buffalo university - they've done a fair bit of research with concussed athletes and my physio used the Buffalo treadmill protocol for my rehab. medicine.buffalo.edu/facult...

I'm afraid that drinking and brain injury are a really bad combination, but it does seem likely that this, and lacking motivation in general, is a manifestation of his current depression. Has he been able to work since his injury? How old is he? (As a mother also it must be very hard for you).

I think the Brain Injury Association of America that Leaf mentioned, also have local groups, like Headway here - and I've certainly found a great deal of support and validation from hearing the stories of others people with brain injury here online - so am guessing these options might help him if he will engage. Their contact number seems to be at the end of each web page

biausa.org/brain-injury/abo...

Hope you can get the right sort of support for him 🌸

[Astley10]

His symptoms sound so much like a tbi,could he have had a bleed on the brain but it cleared by itself. His symptoms sounds so much like my own ,I fractured my skull and had a subdural haematoma which needed a crainionatamy mabe His bleed resolved by itself because all your sons symptoms sound like mine and I'm years down the line and still suffer with all those problems