Tbi

[FortForever]

Has anyone been through this themselves or with a family member?

M 24 year old son is recovering now from an accident 8 weeks ago. I don't know if he will ever get to do Disney again. We planned to cross that bridge with his neuro doctor eventually. We won't do anything without the doctor's blessing, was just wondering about how it went for others.

I am doubting he will be allowed on rollercoasters due to his skull being held together with titanium plates. It seems a bit dangerous to me. As far as all the other rides, have you been able to do them after TBI? Tower of Terror is out of the question forever as I know it increases brain pressure.

My son can't walk yet so will be awhile before our next vacation. Even then, he is expected to tire easily so will likely be in a wheelchair.

I'm not trying to rush back to Disney right after this worst time in our lives. I just feel like hearing that others were able to so I can feel there is a chance of going back to our old lives.

It's been such a hard couple of months and I want something happy to talk about or look forward to.

 

[bookwormde]

I will PM you due to confidentiality reasons for the person I know

 

[SueM in MN]

Sorry to hear about his injury and hope he has a 'close to before' recovery.
I work in a hospital that treats patients with TBI, so I have not been through it, but have some insight. I also know someone quite well whose son has had repeated concussions and has some residual issues.

Even though I am sure the time seems an eternity to you, 8 weeks is actually pretty early in recovery and there is lots of room for progress.
I think you are right in your assessment that the doctors are extremely likely to say no more roller coasters for him.
Besides the risk of injury, some people have residual issues with vertigo, dizziness or sensation with change of position. These could make the sensations of a roller coaster not be so pleasant. Some people without brain injuries or motion sickness have a headache, kind of an uneasy or sick feeling after roller coasters. So, even if he gets the OK from his doctors to try some things, you will still have to play it by ear and see how things go.

I tried doing some Internet searches for roller coaster and brain injury for you, but most of the results were along the lines of 'recovery from a brain injury is like a roller coaster.'
I did find this for you with some links to studies looking at whether roller coasters can cause brain injuries.
http://coasterbuzz.com/Forums/Topic/roller-coasters-and-brain-injuryfact-or-fiction

Besides roller coaster, and especially those with inversions, you want to be thinking of non-roller coaster attractions that really move/bounce you around a lot. Things like Star Tours, Mission Space (even the green side) and the Forbidden Journey at Islands of Adventure.
If you haven't been on them yourself, you can get some idea from YouTube videos, but they are often dark, so it would be difficult to get an idea of just how turbulent a ride is so you can discuss with the doctor. Rock N Roller coaster is reported by most people to be the smoothest ride, but has an inversion.
And, if you haven't ridden yourself, it's hard to get an idea by asking others - people who like roller coasters tend to think it was no big deal.

 

[mdvlprof]

First - hugs, lots of hugs. Second - take care of yourself.

DS has locked-in-syndrome resulting from brain injury. So, yes, there are folks who have been through it.

Disney is very do-able. Some rides may not be suitable. Fortunately for us, DS never was much of a roller-coaster fan.

 

[FortForever]

Thank you for your answers and, Sue, for taking time to search for some.

We are 11 weeks out now and still searching for our new normal.

 

[WheeledTraveler]

I haven't dealt specifically with TBI, but I've spent time in a rehab hospital and dealt with some major neurosurgeries. 11 weeks is a long time, but expect to continue to search for quite a bit longer for your new normal. I'd say it took me well over 6 months to hit my new normal post-surgeries. Even that wasn't a long-term normal, it was a temporary normal. From what I know about TBI (several friends and acquaintances have had TBIs), your son could have improvement for the next several years. Yes, at some point something will plateau out for a while, but it may not be more than a temporary normal. Don't let that keep you from making plans and doing things. Even if you can't do all the big rides, with TBI there are plenty of things he could do at WDW and, unless his doctors say otherwise, I don't see why you couldn't start planning a trip for 6 or 9 months from now. There may be some rides that he can't do then, that he can even further down the road. I have part of my neck fused and have problems with intercranial pressure (among other things). I wouldn't do any of the big thrill rides, but at this point (2 years post fusion surgery and with the pressure mainly controlled by meds), I'd feel safe doing Star Tours, Teacups, and some of the other rides that can be a bit jerky or dizzy-making. I probably would have been safe to do Soarin' the first time I was in FL post-surgery and that was only about 3 months out. (I was near WDW for a conference, but the closest I came to actual WDW was a single evening at DTD, where I did do Characters in Flight with no issues.) I'm a wheelchair user for other reasons and that in and of itself isn't a limiting factor for rides. Obviously things will depend on how your son is effected longer-term from his TBI, but I think you could be pleasantly surprised with how much he can do when you do make it back. I certainly would not rule WDW out forever.

 

[SoonerSarah]

My youngest daughter is a TBI and Stroke survivor. She was 20 months old when she had her accident, she is more than 2 years post injury. Every brain injury is different, every recovery is different, there is no set path that anyone can say he will fall on. Some will say that what you don't have back at 1 year post injury is what your new normal SIL be, but I know so many that have had vastly different outcomes. One older man stopped progressing after 6 months and then at 3 years he starting making huge improvements. Kenley's improvements are small at this point, but she is still making them.

At 8 weeks post injury she was just coming home from the hospital. There was a vast change from that time to 6 mnths post injury and from 6 months to 1 year and from one year until now. The first 6 months was pretty rough. . A lot of it depends on the injury and if the brain is considered stable, and what his struggles are and how it effects him, but there are TBI survivors who are able to ride rides again. Perhaps ot now, but maybe someday.

Do you have any support groups? If you are on FB, I know of several. You can send me a message here, or you can send me a message at Praying for Kenley Martin on FB.