I acquired a brain injury 9 years ago and recently had an MRI because I wanted to find solutions to ongoing difficulties and whether there was anything seriously wrong that I should be aware of. I had never had an MRI of my brain before and was never offered one. It was my own decision to have an MRI.
A bit of background:
- 14 years old at the time of the injury (23 years old now).
- acquired an epidural haemotoma and parenchymal haematomas in the right frontal area/depressed skull fracture.
- surgery was performed to remove the epidural haematoma and to reconstruct the skull .
The scan report is as follows:
"There is evidence of high signal seen within the right frontal lobe peripherally which extends up to the skull base region up to the orbital plate. This is associated with some encephalomalacia changes and is likely to be a reflection of previous head injury.
There is normal signal seen in the occipital pole and within the temporal lobes.
There is no evidence of any intracranial collection.
Normal cranio-cervical junction.
Normal flow voids are seen within the circle of Willis and the venous sinuses.
Comment: Evidence of previous head injury affecting the right frontal lobe with encephalomalacia and gliotic change. There is a defect within the calvarium which could either be post-surgical or as a result of the head injury."
Is there anyone qualified enough to explain the meaning of this report? Moreover, could the abnormality of the brain be a reflection of other conditions/diseases, for example a degenerative condition since I have felt that I'm losing some of my abilities?
Also, is one scan ever enough to make an accurate diagnosis of the health of brain? My practitioner told me only that the report states theres scarring of the brain tissue but nothing progressive. So does that mean that my problems aren't likely to worsen? This has not been my experience.
I am not qualified to explain your report, but I am also a survivor of a TBI and want to offer you some support.
Firstly, trust what your doctor is saying. If there is scarring on the brain and no degenerative condition shown, then that's a good thing. Your symptoms, and experience of losing abilities are also valid and real. First of all, I would journal what's going on. Keep track every day of your symptoms, your pain levels, your cognitive and physical issues. After a Month or so, review and note the issues that happen most regularly. Show this to your doctor. IT's very helpful to have a picture of what's going on via journalling.
I would recommend that you see a neuropsychologist - if you haven't yet. They can assess your level of cognitive disability due to the injury. They can also explain to you why you are losing abilities. Perhaps you didn't receive proper help at the time of injury? I'm just speculating. You needn't rely on a CAT scan or MRI for your answers. You need to see a specialist in TBI and with a combination of therapies, you may see improvement or at least keep your symptoms and issues in check. See a neuropsychologist. That will be key for you. Talk to your family doctor. You need to insist on this and request to see this specialist. They are mavericks at finding out cognitive issues and how to cope and deal with them.
That's my suggestion. Don't let one imaging test frustrate you. Sometimes damage is too small to show up on such imaging tests. We still have a long way to go in the diagnostic imaging area. Seek out the right help, therapy and always keep a journal or record of your day.
I hope this helps a little! I wish you all the best,
Its difficult for me to trust doctors and furthermore I believe they're prone to many mistakes. At the time of my injury they somehow managed to not record the full extent it and it was only within the last few years through investigation of my medical records fot the purpose of litigation that I discovered this. As a consequence, I was never given any rehabilitation and it is only now (9 years later) that I'm embarking on rehabilitation for my problems. I'm also not happy with the fact that I have had to insist to my family doctor for an MRI. Such a scan should be granted to any brain injury survivor suffering long term problems, if not to aid treatment then for nothing more than to document the full extent of the injury, eliminate any other possibilities for problems and for assurance. The bottom line is, family doctors especially aren't understanding, considerate and patient enough to a brain injured patients and unless you have outward signs of disability, they'll assume you're more or less 'normal' just like everyone else.
I'm holding back my judgement on neuropsychologists but they're probably the only people who can attempt to grasp the problems of brain injured. I will be seeing one as part of my rehab. I'am sceptical though of seeing anyone with the word 'psychologist' in their title as it tends to suggest to me the treatment will involve new ways of thinking and I have my own experience of psychological treatment and in my opinion it doesn't help someone with organic damage. In the same way, don't type to the screen when the computer is turned off, the information won't be processed. I have seen one as part of litigation and I was subject to a series of tests to assess cognition which in my opinion don't test for the subtle things that the frontal lobes are known for and certainly don't assess personality, psychosocial or emotional problems. Have you been seen by a neuropsychologist and if so what treatment if any do they offer? What I don't want is to be given a series of tests only to be told they basically can't do anything or worse be given cognitive behavioural therapy that I know isn't effective in the long-term.
A good idea to keep a journal, but that involves planning, strategy, organisation, initiative and arousal, the very functions that have been severly effected by my injury. I will give it a go though, since i'm commited to this rehab.
May I ask you what type of injury did you sustain and how old were you? My was a right-frontal injury and I have textbook symptoms as well as migraines, cripling fatigue, short-term memory and the list goes on. The only physical limitation is weakness, lack of sensation and grasping difficulties in my left arm.
My injury was sustained as a result of a car accident 5 years ago. My husband and I were hit by a drunk driver. He's disabled, and I have a brain injury. My injury is around the mid lower brain, and the brain stem area. It's a diffuse injury so it's widespread. It is a microscopic injury - damage to the brain does not always show up on an imaging scan. Mine was not picked up on an MRI or a CT scan, but through a neuropsychological test, they were able to see exactly where my issues are from a cognitive level. I also have disabling fatigue - a syndrome called "Hypersomnia". Some people call it "Somnolence" too. I have to take stimulants to stay awake during the day. I have had several sleep studies done. This disorder is a common occurrence post brain injury, so if you haven't had one done yet, I would make arrangement through your doctor to have a sleep study - namely a "Multiple Sleep Latency Test". I'll be honest, the test ***** because you have to try sleeping there all night, and then they keep you there for almost a full day to check your daytime fatigue levels. This is a good way to rule out narcolepsy and also to make a diagnosis of hypersomnia.
When you see a Neuropsychologist, you will be put through quite a bit of testing. It will be tough, but just do what you can. They should be flexible and you should be allowed to take a rest or a nap when you need to. And you don't have to do it all in one day. That's one good thing anyways. Try to maintain your open mind about this. I have actually had 2 of them done (all proving brain injury) and I meet with my Neuropsychologist on a fairly regular basis.
Don't let the "psychologist" part of the name screw you up. They are purely looking at the function of the brain and how certain areas of it are working. They are not going to test emotions or try to do behavior therapy in that way. What my doctor does is actually teach me a bit about my own anatomy. What went wrong, how the brain functions and why I have the issues I do. She helps me put it all together and make sense of the actual injury and results. I think this is important. A first step in working through a brain injury is to start trying to learn (and I know we have limited ability in that area).
Also, she can make referrals and act as a guide to help me in the direction of various therapies that will help. I am getting a whole range of different therapies to help me through the brain injury. I don't know if I will get "better" and whether the injury will one day lessen or go away completely. No one can predict that unfortunately. Brain injuries are horrible in that way. I know I don't need to tell you... But I am trying to learn new strategies to cope with the limitations that I have. I didn't even know some of the therapies that existed until I got the right Occupational Therapist. 4 years into it. Now I have an OTA visit my home 2x a week. She stays for 3 hours and basically helps me in being functional. SHe helps with organization, goal setting, and is basically there to help me be as functional as I can. I also am doing a program called FastForWord - a program designed to help people with Central Auditory Processing Disorders -- which is another issue I have from my TBI. This program also helps out with memory, attention, following directions and all that basic stuff. It's a tangible program that does help. It's very "child like" - but it will get you using those areas of your brain that you have trouble with. So don't let the graphics and the sounds sway you if you ever take the program.
My OTA also helps me with things like re-learning how to tolerate social settings, such as the mall or grocery store. I don't know about you, but I have overstimulation issues that make shopping for my family very hard. Not to mention family get togethers etc. She will come with me and basically teach me to be calm and focused. I still have a long way to go. I still can't go to the mall without feeling overwhelmed. but I'm working on it. There are some things that will improve, and other things that won't.
My opinion - from my own experience - is that you need a combination of therapies to combat a brain injury. There's no one course of action. As I'm sure you know - it takes a lot of trial and error, and a whole lot of frustration. I am so sorry that you have been so long without help. It makes me sad that you have been left that way until now.
I don't know exactly what therapies you have had, but I would highly recommend the following - which are tangible ways to work with a brain injury and some of the more physical issues:
1. Through your lawyer - or case worker - find yourself a good OT. They will help you in your home, in social settings, help you with any learning and education you need, if you can or want to try going back to work, they can help with all of those things. You need to find one that has good experience with brain injury. We went through about 5 different OTs before we were set up with the right one. Now I am getting WAY more help.
2. Physiotherapy - for issues such as grasp, nerve damage, weakness and sensation issues. Forgive me if you've already gone for this, but I would recommend that you try it out for a few months at least. I have several physical therapists - including Acupuncture, Osteopathy (weird, but it truly helps), Massage and then of course Physio. Combined they do a good job at helping minimize pain, and keep some of those joints moving in whatever capacity is possible.
3. Sleep Doctor - To get some sleep studies done. You may have the same thing I do. If so, you will be given mild stimulants to help you stay awake during the day. This will be a very positive impact in your life. It's not perfect, but it made a huge difference to me. I know how frustrating it is to feel tired in a way that you just cannot explain. It's almost like you've been drugged (am I right?) This type of doctor can help you regain a little more energy in your day. I hope you would consider this.
4. Neuropsychologist - for the above mentioned reasons.
5. Neurologist - if you haven't seen one already. They work with nerves and the brain. They can test you for any possible seizures, (I have myoclonus - which are small random jerks that happen throughout the body), they can work with your migraines, and any other physical nerve (sounds like you need a nerve conduction study at least to test the nerve signal to your hands from your brain), they can work with all of that.
My injury happened back in 2004. I was 26 years old. I am now 31. It has taken me a long time - just like you - to have the help that I needed. I agree with you fully, brain injury survivors need to be treated much better than we are! We should be cared for and given all the tests we need to figure it out. Aside from the fact that it's hard for us to coordinate things and maintain a normal schedule (like, what's that?!!) We have a whole host of issues to contend with. From the Physical issues of sleep, weakness, balance, numbness and pain, to Cognitive issues like retention, attention, organization, memory, etc.... the list goes on (as you say)!! I am sorry for you that it's taken you 9 years - that you've been suffering this way for so long! It angers me that you've been left that way - that ANY brain injured person should have to struggle in the way that you have.
I hope that this novel of a reply has helped you out even a little. I'd love to hear back and give you whatever encouragement you need. One thing I should mention is that I live in Canada. I don't know where you live and what your health system is like. That, I'm sure will impact what services you get...
Please let me know if I've missed anything. Take care.
I forgot to mention something about my journal. To make things easy so that I don't have to think about things too much, I made myself a list of things to answer instead of trying to come up with something new every day. Here is a sample from my daily log:
Shoulder pain = (rate 1-10)
Low back pain =
Cervical (neck) pain =
Headache? (yes/no) =
Eye pain? (yes/no) =
Any other pain?
Bright, blinking light eye irritation?
(yes/no & when/where)
shortness of breath?
Hard time waking up?
20 mins. Exercise?
Time to bed=
Did I sleep well? Explain:
Cognitive issues (list and try to explain anything you can remember if necessary)-
Medications taken =
Using any assistive devices (cane, braces, jaw splint)?
Make smoothie & vitamins? =
Energy level overall:
Short Comment on Today:
So that's generally what I fill out each day - or whenever I remember to do so. I don't know if you are computer savvy or what your skill levels are. I have a PDA that I use to keep track of my appointments and I can sync it to my laptop at home so I always know what's going on. I created an "Event" called "Jen's Daily Log" and in the "notes" section, I copied and pasted the above information. Then I set the event to repeat every day. These instructions may be hard for you to understand, having a brain injury. Because I've done this so often, I am used to it, but I can break it down into easier steps for you if I know what types of calendars or computers you use. Another idea is to just print out a sheet with the questions and photocopy 20-30 copies and make a binder. That way you would always have the original file on your computer to print and make copies from, but you could have something tangible to work with, if you are not keen on using the calendar method.
Just thoughts! Are you using the trackers available on this site? They also make a great spot to keep track of what's going on. I was really impressed when I stumbled across this site.
Anyways, I just wanted to share that idea with you. I just sympathize with your situation. It sounds very similar to my own, and I haven't had the chance to speak with many people who have survived a brain injury.
May I also ask how you got your brain injury? I'd like to hear your story,
OMG! I just found this site and read your replys to Anthony. I feel like crying! There are people out there who understand what I've been through and am still going through. i hope I can find this site again so I can see it you're still around! Fellow TBI sufferer Erica
I'm sorry to hear about your terrible accident, as someone that has been subjected to such terrible set of circumstances, I can understand (even though I don't get many emotions and empathy is difficult thanks to my right-frontal injury). We're at the mercy of other people's actions and have to live with the consequences through thick and thin and are expected to integrate into society and pretend that we're normal and even the mention of brain injury makes people turn away from you, even doctors want to believe that problems are really are bad as they are. Only people with brain injury can understand (or try to) and unfortunately we cannot be self-reliant people so we're relying on the doctors to give us the help and to be honest the help is an utter disgrace. The reality of the situation that I probably already felt was the case hit home today when I had a consultation for rehab, the doctor said they can't help with damage to the frontal lobe and it that they'll probably only able to when they can solve climate change which makes it probably not in my lifetime. So I can look forward to more mental health treatment and not treatment of the real problem...happydays.
Can I ask what's the difference with being disabled and having a brain injury? What injury did your husband sustain? I never thought of myself as being disabled as I can still do things like wash, put clothes on, etc. But my cognitive difficulties makes things much harder and slower and I need consideration to my needs which means I could also be classed as disabled.
My injury happened in 2000 when I was 14 and I'm now 23. The injury was the result of the reckless behaviour of another school pupil and the negligence of the school. The pupil threw a shot-putt on the school field and I happened to be in the way, it just had to land on my head. I had an extradural haematoma and bleeding in the brain tissue, my skull was also fractured and pieced back together using titanium cranio-fix buttons. I remember it was the most horrible feeling to wake up and lie in that bed, I was never to be the same. The damage was to my frontal lobes which were still undergoing development at the time of my injury, so I didn't mature into a person with a full adult's brain so those adult functions aren't all there.
I also have sleep disturbances, for the first couples years after the injury I would require alot of sleep. Then I had a period were I couldn't sleep much around 17 years old and I had emotional problems. These days I find it difficult to switch off at night unless I've had a very strenuous day's activities, it may take up to 1-2 hours to fall asleep even though I feel fatigued, whereas a normal person should take no more than 20 mins. I also find it very difficult to wake up the mornings and can easily sleep until mid-day, I feel like i'm almost comatose and have low energy and arousal. I often feel day-time fatigue accompanied by headaches but don't feel the need to sleep even though it might help reduce symptoms because of my trouble 'switching off' . But I do find it difficult to wake so maybe I could have it.
Do Nueropsychologist's test for emotional defecits such as those involving humour, I don't see what an IQ test will do for that and Its hard for those tests to pick up on the subtle functions of the frontal lobes. Like I said, they're lightyears away from understanding the frontal lobes, as man's unique possesion, it'll be the last to fully understood and treatable.
I can understand your problems in public environments, they're very stimulating and leave me also fatigued, confused and helpless. I don't tend to like crowded places like shopping centres and making decisions on what to buy, eat is also very difficult as the answer just doesn't pop out, everything looks the same and everything has good qualties that I just can't weight against each other. Decisions don't come easy and take alot of unwanted effort.
I did mention occupational therapist to my consultant but he talked more about vocational therapy and I'm wondering what's the difference. I feel I need some therapy to help me try to find work as I've never had a job and don't think I can maintain one and all its expections.
Physiotherapy, well I did mention my problems of weakness in grasping and manipulating objects to my consultant but he did one of those very crude self-evaluations they do and felt that it wasn't such an important issue, so I don't think i'm getting any help there.
I'm from uk and under the scourge of public healthcare. Because it's public, you can't complain and have to take what they give you even if you feel you should given better help. What's more is they can't wait to discharge at any moment they feel they can. That is why I wouldn't mind paying privately for proper treatment, but for now i'm stuck where I am.
Sometimes I wish I was in a wheelchair but could still do all the things that make someone a human. In this world, its not easy to live with frontal damage and not being a complete person. And like you, I've never searched for help and have never spoken to anyone with a brain injury, you couldn't tell tell if the guy next to you on the bus had an injury because i'm the same. I've always tried to live with it, but realise that you just can't do that when these problems don't go away and thats why i'm trying to better understand my injury and try to become more like a normal person again.
Thanks, I have a PDA recommended to me by a psychologist it was mainly used to to help me plan my activities and I did use it, but found it such a big effort to use and wasn't motivated to carry on. I usually don't forget an activity, but the idea of scheduling my day seemed a bit obsessive and most of the time I couldn't stick to the plan because things take longer than I exptected or I would avoid doing the work. It's also bulky to carry around along with all other accessories. If you're sticking to the plan and getting some positive feedback then its motivating, otherwise it's a burden.
I would probably feel more motivated seeing others using it and getting results. I should use that list of things and take more careful note of my symptoms that I normally don't take notice of because i'm so used to them. For instance, my consultant asked me the duration of my headaches and I just had to guess because I don't track the time of these things.
I am so sorry - I wanted to get back to you earlier but it's been a hectic couple days. I don't have time to reply just now, but don't think I've forgot about you!! =) I also want to send you a couple of websites to review - just for education and some more insight into the things you're asking about.
Sorry again for the delay. Stay well and I will be in touch shortly.
Its ok, I understand how little energy and time you're left with.
I want to share this article, written by someone who suffered brain injury and his experiences are so similar to mine. When I showed this to some people I know, they were shocked at just how sad and difficult living with an injury can be.
Thanks for your understanding! I'm so very sorry to hear about what happened to you at your school. You've been suffering for far too long! May I ask if your family has been helpful to you at all? Where are you getting support?
Wow, that article you shared really sums it up. It's very important to find these resources. They tell the author's story, but they tell ours as well. I am glad to hear that you shared this with some of the people in your life. It is important to bring people on to "your side", and help them to understand things as much as you can.
I would also like to share an article with you. This one speaks about the low energy one lives with after an injury, illness or disability. (will get into the whole disability thing in a moment!)
This is from a website called "You don't look sick.com". It's a pretty interesting website, authored by a woman who lives with Lupus. Her condition may be different than ours, but she makes it well known that the symptoms apply to many conditions and many people. I found I could really relate to her "spoon theory" (you'll understand once you read it) as a way to explain how we must now conserve our energy. Have a read when you have a moment. I hope you find it a useful resource.
Anyhow, I am glad to have some energy to finally get back to some of your questions! This week was horrible.... horrible in the sense that I'd have had a better time chewing off my own hand.... (ha ha) I'm sure you know what that's like!
So, in your message above you wanted to know more about what a neuropsychologist would test for. First off, it's NOT an IQ test at all. If someone compared it to that, they are awfully misguided. A neuropsychologist tests for the following:
1. Concentration ability
2. Word finding ability (language skills, retention ability)
3. Attention and Organization difficulties
4. Memory and learning problems
5. Any physical brain-related problems that are sensory (smell, taste, hearing, vision & Touch)
6. fine motor skills
There are a zillion more details that they assess. But those are some of the main ones. They also take into account, any temperature problems, sleeping problems, nerve pain and numbness, any depression, anxiety, overstimulation issues that you have too. There is a lot - which is why the test is terribly long and difficult. But, I would recommend it highly.
....I have to continue in the post below (too many words in this message!)
If you find a good neuropsychologist, they will most likely meet with you on an ongoing basis, and help you put the "big picture" together. What I mean is, after a TBI, many changes can happen in the body. For me, I have many chemical changes going on that affect the insulin in my body. The weird thing is, I have always been healthy and fit. Now, my insulin is screwing me up! Why? After talking with my Neuropsychologist, she and I discussed how the brain can send faulty signals to the body after a TBI, causing all sorts of hormonal and chemical problems. I don't know if you have any (I don't want to assume one way or the other) but if you notice anything, include it if you choose to see an neuropsychologist.
I would recommend that if you choose to see one, make sure you make a nice detailed list of what you are living with. Type it out and bring it with you. That way you won't forget or lose track of what you need to say. Tell them all about what happened to you and list the issues you have. Write down EVERYTHING. Even things you think may not be related. IT's surprising what you will learn.
If you have any questions or concerns, please keep asking me questions! I can even pass questions along to my own neuropsychologist if it would help you! I feel a deep need to make sure you are also taken care of in this! No one should be alone and left floundering with a TBI! So, ask away!
You also asked about what happened to my hubby and asked about what disability is. Steve, my husband, lost the use of a limb (they considered amputation, but were hoping to save it... which they didn't unfortunately so now he lives with a "dead" limb). Because of 7 invasive surgeries, he has been left with a nerve disease called Reflex Sympathetic Dystrophy. It's too much to explain it all here, but if you google it, you will get an idea. He also is left with uncontrollable tremors throughout the left side of his body. (called Clonus). He was considered "Disabled" because he has severe physical limitations. (you know, he gets the "handi pass" as we jokingly call it) But you are right to question the definition and designation of disability. It SHOULD apply to anyone living with a TBI. Simply put, it is a disability. The designation for Steve was brought about after he had assessments done to determine that his life was over 55 percent compromised. Here in Canada it's all insurance and doctor's that make the official determination. Steve was designated "Catastrophic" by our insurance company, which means he gets more coverage, etc....
It's so convoluted! I wish it were more realistic. I am glad that Steve is being taken care of in this way. He needs it! However, people in our situation do too! In some areas we need help more! So, when I speak of "disability" I am only speaking of the insurance definition. Personally, we are living with disability. Steve agrees with us too. It has been a source of frustration to him that I've been put through so many tests, and should be deemed disabled too.
Mind you, I have to say that all in all, we do have an excellent health team, insurer and lawyer team. I feel fortunate to be working with the people that I am. So, I am not trying to blast them at all. It's just some of the "red tape" and rules that don't make sense and make things difficult for people like us.
I don't know what insurance is like in the UK, but I am very interested to know! I understand you mentioned that healthcare is public in the UK. It is here in Canada too. We don't have to pay for services, and because of that, sometimes the services fall short. However, I am grateful for this system personally. My sister married a man in the US, and the healthcare there is horrid. If you have a lot of money or pay a lot for coverage, then no problem - you will get awesome service. But, for most people, it's just too expensive to afford. The diagnostic tests for brain injury alone would cost a small fortune. The only thing I have learned in dealing with public healthcare, is that sometimes I have to politely make demands in order to get a doctor's attention... sometimes I have to argue a little (but not be rude - I just won't be a door-mat). Or, I have to do a little research online or through books and when I visit my doctor I bring whatever I have written down with me. That's the key to getting good help in this type of system.
Because doctors are so overloaded in a public system, we need to come prepared as much as possible. I'm not saying that we should do their job or anything. But, just come with as much knowledge and written down information as you can. It does help. I do this, and I have received very excellent service for the most part.
It's not a perfect system. Far from it. But, I am glad I don't have to pay for my appointments and therapy. For my rehab I spend about $30,000 per year - at least. It's nuts. Imagine having to pay that for each year you are sick! And at private practice prices! Yikes! I'm just saying... (playing devil's advocate a little) And I can't hold down a job right now either... so, it would be very scary.
With all that said, there are great private practices around (at least in Canada) that you can pay to get really awesome service and help. I have not used this option yet, but I hear that you get tons of attention and great services. In the future, I may try this for getting more things looked at, but for now, Im staying in the public realm until I can afford such! =S
I say all of that knowing it's different for everyone. This is only my experience. You may benefit greatly from the attention and care from a private practice! I would almost recommend you do that if you can because you've had such a difficult 9 years! That's too long to be suffering the way you have been!@
Well, I am going to go for now! I hope I have helped you in some way! I look forward to hearing your response when you can! Please take care of yourself and start some journalling, okay? =)
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