UPDATED:::::::Best Hospital for Brain Damage?

::::UPDATE:::::
My father was released from the hospital and was tranferred to a rehab this week. His prognosis is very good now that he's moving, responding to commands, and interacting with us. He actually kissed and hugged my mother yesterday.

I wanted to thank all of you for your help, referrals, advice, and more. This is a very tough time for us, but we're hopeful he's in good hands and will make a decent recovery!

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::OP::
Hi. My dad was involved in a motorcycle accident and we recently learned he has moderate to severe shearing (brain damage). Currently he's at Stony Brook, but we're looking to transfer him to the BEST hospital to care for the brain damage. Can you please share your thoughts?

LIJ?
Northshore?
Huntington?
Stony Brook?
Other?

TIA!

Message edited 8/13/2011 9:05:42 PM.

Re: Best Hospital for Brain Damage?

Are you willing to go to NYC? Seeing as Cornell and Columbia Presbyterian are two of some of the best hospitals in the country.

Re: Best Hospital for Brain Damage?

I work with people with TBI when they are ready to come into the community, usually from nursing home settings or rehabs.

From speaking with some of my survivors, on LI, best recs are Stony Brook and St. Charles rehab.

There's also a few places Upstate if you are willing to go that far.

It's tough everywhere though because quality of care can sometimes be lacking. My advice is to use your voice to get the care and follow up you need.



If you need help down the line, do not hesitate to FM me.


I really am not involved with people this early into their injury but do know the resources when he's ready to come home.


I also believe DaniRella will be a good resource from unfortunate first hand experience with her brother and maybe Blu-ize off the top of my head.

Re: Best Hospital for Brain Damage?

Posted by mzsocialworker1

I also believe DaniRella will be a good resource from unfortunate first hand experience with her brother and maybe Blu-ize off the top of my head.

Re: Best Hospital for Brain Damage?

You can't go wrong with a city hopsital. Columbia Presbyterian, Mount Sinai, Cornell, NYU are all top notch.

Back in April, DH had brain surgery to remove a pituitary tumor at NYU. His neurosurgeon was highly skilled and we can't say enough good things.

Re: Best Hospital for Brain Damage?

I would check out NYU neuro. They also have the Rusk Institute for Rehabilitation Medicine at NYU (adjacent to the hospital)which is dedicated to medical rehab (both inpatient and out patient) from everything from TBI, stroke, to orthopedics. Make sure your dad is evaluated by skilled neuropsychologists to determine the extent of the damage to the brain, not only in terms of what they see in scans but also in terms of how it affects the different areas of cognition/personality.

If I had to pick a hospital on Long Island, I'd look into North Shore/LIJ. I believe they have a growing and well-staffed facility that specializes in the brain.

I'm really sorry that your dad had an accident. Wishing both him and your family lots of strength during this difficult time.

ETA: It's the Cushing Neuroscience Institute at North Shore/LIJ.

Message edited 8/2/2011 8:57:17 PM.

Re: Best Hospital for Brain Damage?

Re: Best Hospital for Brain Damage?

I was also going to suggest contacting Danirella.

Re: Best Hospital for Brain Damage?

Thanks everyone!

I don't think my mom wants to travel to NYC. She lives in Middle Island (eastern Suffolk) and finds Stony Brook to be a far ride..... I was thinking Northshore/LIJ but know NOTHING about hospitals.....

As far as rehab goes, right now he's not "participating" in response to commands, so he's not eligible to go to rehab. We were told that if he does qualify, it would be St. Johnland. In the meantime, we're hoping a more specialized hospital can do their own therapies and take another look at his MRI to give us a better idea of the long term prognosis. If he's going to sit in a nursing home and just "veg", then it's not something we want for him as a family........ Tough times......

I'll definitely contact those two people too, thanks!

Re: Best Hospital for Brain Damage?

Ok, breathe.

Sounds like you are getting great advice here.

First. I'm so very sorry your dad is in this condition. Does he have any other medical issues? Can he breathe on his own? If it's just a feeding tube that's keeping him alive, not sure you can remove that without a court order.

Second: in the absence of of any other medical issues why does he not qualify for rehab? Do you have a social worker at Stonybrook working with you? Is there a pallative care professional working with you?

The rest:

Hospital based rehab (acute) is more intense than nursing home rehab (sub-acute). I was not impressed at all with St. Johnland-they could not handle the topugh case that was my brother. Something to note. If they don't think they can help him the facility will not take him since insurance needs to see progress and will cut it off if week after week there is none. I had to beg St. Johnland to take my brother and then they couldn't get through to him.

I highly recommend Rusk, St. Charles, Mt. Sinai, Jamaica (Brady Institute), Glen Cove, North Shore LIJ, Kessler in NJ.

Kessler is probably the best. My brother went to Jamaica. Danielle's brother went to Kessler. Kessler would not take my brother at the time. Jamaica although a crappy area had excellent therapists. They were looking for a new neuropyschologist at the time so that part stunk.

The one piece of advice I can give you and your mom is this. Go wherever he will get the best therapy and care. Location should not matter. Really. The difference a good rehab facility makes is amazing. It's a life and death decision. Why give up if there's hope? Get the brain scans done and have him evaluated. My brother went to Jamaica because he needed hospital based rehab because he was on dialysis. I've never heard of someone not qualifying for rehab. People who are in a coma qualify for rehab. I was told this by most of the acute rehab facilities.

If there's any hope, please run with it. I've seen miracles. The day we were going to make the decision to take my brother off the vent, he responded to his name. We cried by his bedside day after day, week after week..he woke up.

Look at Gabrielle Gifford. Amazing.

My brother will have deficits his whole life and will probably never live alone and be independent but that doesn't mean he can't enjoy his life to a certain extent. He just became a grandfather. It's his biggest joy.

Sorry so long.

Re: Best Hospital for Brain Damage?

Re: Best Hospital for Brain Damage?

If the legal documents are in place and you have made the decision then I wish you the best. This is one decision no one ever wants to make.

Since the accident was only a month ago I hope that time will allow him to start responding.

If the tests all show no voluntary brain activity then I know the choice is made and I personally would agree with you.

I still don't agree with them not qualifying him for rehab as I have seen people in comas in the acute rehab facility. The pneumonia is what's keeping him hospitalized.

I can't tell you how sorry I am that this happened. It's the worst nightmare. Please keep reaching out.

Re: Best Hospital for Brain Damage?

Thanks. We are giving it time for us to see if he will improve. We just don't know yet. Its only been a month. Wanted to transfer hospitals while he still needs to be hospitalized.