Treatment for severe TBI -- any hope?

[Anonymous]

My friend's DD suffered a severe brain injury in an accident a month ago and is still in a coma. Her doctors told the parents there's little hope their daughter will ever recover because both sides of her brain are damaged. The parents are devastated to say the least. The hospital seems to want them to give up on their DD.
I am wondering if anyone has experience with severe TBI who can offer any hope. Their DD is an athletic high school senior.
My research says that if the patient is in a coma more than two months, there's little chance they will recover. So a month is too soon to give up, no?
I know the brain is elastic, so I'm wondering if there are alternative therapies that can help?
I can't believe there's nothing further to be done -- accupuncture, hyperbaric oxygen therapy? Anything?
They are a wonderful family, and this has broken them. Any help or hope most appreciated.

[Anonymous]

I had a student who was severely injured. He was hospitalized, in a coma, with a tracheotomy. We were told to prepare the students for the fact that he was going to die. A few months later, he regained consciousness, and we were told that he would return, but would use a wheelchair and be nonverbal. A few months after that, he finally came home. At that point he was able to walk, and could use a speech generating device at lightning speech. Over the next few years he continued to gain skills, including spoken language.

[Anonymous]

I am so sorry. My child suffered a severe brain injury and although she survived she is severely disabled. Whatever happens with your friend's daughter the family has a long road ahead of them and really all you can do is be there for them. In my experience, I didn't want people offering me treatment advice, or platitudes, etc. Don't ask how you can help, just do stuff: drop off meals at the hospital, do their laundry, clean their house (or hire people to go do that, organizing it all yourself so they don't have to). They probably are paralyzed but life goes on and someone needs to tend to it.

Doctors - and neurologists in particular - are some of the most negative people out there. They can't predict the future for any individual, so there is always hope, but it's also important to be realistic. When we were still in the acute phase we swung between those extremes, some days feeling hopeful our daughter would recover and other days just lost in a black hole of desperation and grief. There is no way out, no way to know what the future holds, no way to fix it - you just have to get through it, one day, minute, second at a time. Just be there for them.

[Anonymous]

Kennedy Krieger Institute and Johns Hopkins.

Get her there now.

[Anonymous]

13:53s second paragraph hits the nail on the head. It's very easy for people to get hopes and expectations up, and especially in the early weeks and months, being realistic is important.

Your DDs friend has youth and health on her side. The coma may or may not be medically induced, and that can give some clues to outcome. Also, the nature of the injury is a factor. A single hit to one area of the head is more likely to have a better outcome than a diffuse type of injury (like a coup/ counter coup) injury, when a lot of tissue gets sheared, kind of like jello. It sounds as though she has the latter, and that may be why the doctors are not being super hopeful. It's hard to pinpoint what deficits will remain when it's a large area of brain damaged. Also, it's harder for a brain with a large amount of damage to rewire itself.

Even elderly people who have strokes can and so learn to talk and do self care again. A young brain is even more likely to rewire itself, which is the good news.

I have a friend who was hit by a drunk driver probably 10 years ago. He was in a medically induced coma for about a month. He had months and months in a rehab hospital. These days, he's back doing triathlons. Now, it's not 100% in the capacity he used to, and he has many of the after effects of a TBI- headaches, emotional lability, etc. BUT he is still able to live a pretty normal life. It didn't look like that would ever happen, had one seen him immediately post injury.

[Anonymous]

Anonymous wrote:I am so sorry. My child suffered a severe brain injury and although she survived she is severely disabled. Whatever happens with your friend's daughter the family has a long road ahead of them and really all you can do is be there for them. In my experience, I didn't want people offering me treatment advice, or platitudes, etc. Don't ask how you can help, just do stuff: drop off meals at the hospital, do their laundry, clean their house (or hire people to go do that, organizing it all yourself so they don't have to). They probably are paralyzed but life goes on and someone needs to tend to it.

Doctors - and neurologists in particular - are some of the most negative people out there. They can't predict the future for any individual, so there is always hope, but it's also important to be realistic. When we were still in the acute phase we swung between those extremes, some days feeling hopeful our daughter would recover and other days just lost in a black hole of desperation and grief. There is no way out, no way to know what the future holds, no way to fix it - you just have to get through it, one day, minute, second at a time. Just be there for them.

I worked for many years as a social worker in programs for TBI. Everything this poster says is my experience. There are excellent rehab programs in this area - my favorite is National Rehab. But, most important is to go where insurance will pay the bills. I'm sorry for your friend. It's a very difficult thing.

[Anonymous]

Anonymous wrote:Kennedy Krieger Institute and Johns Hopkins.

Get her there now.

They are on the West Coast. Does KK or JH have any unique treatments other places won't? Can you fly someone in a coma across the country? I really don't know. Wish they were here so I could help them.

[Anonymous]

Anonymous wrote:I had a student who was severely injured. He was hospitalized, in a coma, with a tracheotomy. We were told to prepare the students for the fact that he was going to die. A few months later, he regained consciousness, and we were told that he would return, but would use a wheelchair and be nonverbal. A few months after that, he finally came home. At that point he was able to walk, and could use a speech generating device at lightning speech. Over the next few years he continued to gain skills, including spoken language.

Thank you for posting this. Her parents are so down right now, in so much despair. They've been told their daughter will never recover because her injuries are so extensive. How can the doctors know that if the brain is so elastic and recovery is so unpredictable? She's still on a respirator, so can't breathe on her own -- is that so unusual only four weeks after the accident? She's started to open her eyes but they're not sure if she's coming out of the coma. It's a roller coaster. I wish I could be there to lighten their burden somehow. I want to give them hope, and your post has given me just a little.

[Anonymous]

Anonymous wrote:13:53s second paragraph hits the nail on the head. It's very easy for people to get hopes and expectations up, and especially in the early weeks and months, being realistic is important.

Your DDs friend has youth and health on her side. The coma may or may not be medically induced, and that can give some clues to outcome. Also, the nature of the injury is a factor. A single hit to one area of the head is more likely to have a better outcome than a diffuse type of injury (like a coup/ counter coup) injury, when a lot of tissue gets sheared, kind of like jello. It sounds as though she has the latter, and that may be why the doctors are not being super hopeful. It's hard to pinpoint what deficits will remain when it's a large area of brain damaged. Also, it's harder for a brain with a large amount of damage to rewire itself.

Even elderly people who have strokes can and so learn to talk and do self care again. A young brain is even more likely to rewire itself, which is the good news.

I have a friend who was hit by a drunk driver probably 10 years ago. He was in a medically induced coma for about a month. He had months and months in a rehab hospital. These days, he's back doing triathlons. Now, it's not 100% in the capacity he used to, and he has many of the after effects of a TBI- headaches, emotional lability, etc. BUT he is still able to live a pretty normal life. It didn't look like that would ever happen, had one seen him immediately post injury.

Thank you PP for posting this hopeful story about your friend. My friend's DD is not in a medically induced coma -- does that make a difference? She does have a diffuse injury -- but can't her young brain overcome that in time? Shouldn't they give it a year or so? I've been reading that the brain keeps recovering for years. I am trying to offer something to keep their heads above water -- I feel as though they've been told their daughter won't recover, and that's that, short of a miracle. Your friend's story sounds like a miracle to me.

[Anonymous]

OP, there are just too many variables about TBI for anyone on DCUM to give you any specifics about likelihood of recovery.

Unless you're a medical doctor, then I doubt any reading you've been doing is a reliably better indicator about outcomes.

Please follow the lead of the parents, who may not be telling you everything. Sometimes when the situation is bad, the last thing a parent needs is someone who really doesn't have any medical background or experience pressing the family to try crazy unproven treatments -- trips to mexico, herbal supplements, acupuncture and hyperbaric treatments.

I know you mean well, but pressing treatments on a family in distress can cause more pain.

If the family is expressing doubt about the diagnosis or outcome they're being given, encourage and support them to find another doctor to provide a second opinion, preferably one with lots of experience in the kind of injury suffered.

But, sorry, acupuncture for major TBI is a ridiculously unhelpful suggestion.

[Anonymous]

OP again. Thanks for replying, 20:28. I'm so desperate to do something, rescue them from their despair. The mom told me her daughter's injury was overwhelmingly severe. I guess that means there is no hope short of some kind of miracle. I really wish I could ease their pain. Aside from sending food and cards, i don't think There's anything anyone can do, unfortunately. It's just so, so, so sad. I didn't suggest accupuncture, but I would if it could help.

[Anonymous]

Anonymous wrote:OP again. Thanks for replying, 20:28. I'm so desperate to do something, rescue them from their despair. The mom told me her daughter's injury was overwhelmingly severe. I guess that means there is no hope short of some kind of miracle. I really wish I could ease their pain. Aside from sending food and cards, i don't think There's anything anyone can do, unfortunately. It's just so, so, so sad. I didn't suggest accupuncture, but I would if it could help.

I don't mean to be unsympathetic. We would all like to change the outcome. But, if you are staying in touch, writing cards, bringing food, etc., you are helping even if you can't change the outcome.

[Anonymous]

My father was in a coma, Glasgow coma score of 4. The doctor told my mother that there was no hope he would ever recover (his heart stopped twice during the injury that caused his coma). The road was long, painful and horrible.

I can say, I just got off the phone with him and we were arguing about politics. He has made almost a full recovery.

That being said, while he was in the coma, we did not want to hear stories of my friends uncle cousin knew a guy who came out of a coma. It didn't help our situation. Just be there for the family, help by bringing food, running errands - and for God sakes- do not suggest medical treatments.

[Anonymous]

Thanks, 20:29. I have asked about treatments, but I shall do so no more. So glad to hear your dad recovered. I will pray and send food. Terrible, horrible anguish they are suffering, waiting.