Hope lost?

[med100]

Harberrat, yes, there is hope for your brother.. always hope. Yes, RWJ is very good, and so is Kessler. My friend did very well under the care at RWJ and Kessler. The issues he had revolved around some complications and a local community hospital mistakes, system. It is great you are here, getting educated about SCI and keeping up hope. It is a long road. I am so sorry about losing your mom and dad too. There are a lot of great adaptive equipment he may benefit from. If he is going home, and qualifies for Medicaid, check out the Medicaid waiver program to allow for more homecare options, and possible assistance with making home accessible. I will send you a PM. One day at a time!

[SCI-Nurse]

To determine the extent of spinal cord damage, a special examination called an ASIA exam must be done. It should have been done immediately after the injury, and several times since, and should be done again when he goes to Kessler. He could continue his vent weaning at Kessler...I would ask to have him moved sooner rather than later if possible.

Once you get his ASIA exam results, you can post them here and we can help you understand them. You can look at this informative article by Dr. Young about this meanwhile:

http:///index.php?page=viewarticle&a...nalLevels.html

(KLD)

[new dimension]

Hope???

Never ever ever give up hope.......anything is possible!!!
Peace be with you.....!!

[PN]

Every injury is different. It sounds like your brother is in a good hospital. From what I have seen and heard, Kessler is excellent. I spent four months on a ventilator. My doctor told me that I would spend the rest of my life on a ventilator. Very depressing. He wanted to implant a phrenic nerve pacer, I said no. Sometimes you have to fight like a bastard.

Good luck.

[rdf]

Is there any possibility that the spinal cord can be bruised? How can the doctors tell the extent of the damage?

Yes, it can be bruised. The problem is, even if his spinal cord isn't cut or torn or have bone chips in it from vertebra, etc, bruising alone can cause spinal cord damage. I was in rehab with a kid who bruised his cord. He didn't have any surgeries, he needed no H-rods or decompression or stabilization. Post-injury, his spine and his spinal cord looked as it did pre-injury.

If I'm incorrect, someone please correct me about bruising and damage.

I wish you and your family the best. Sounds like he's headed for a first rate rehab, and you never know what lies in store for us in the future - always keep hope alive, for hope is a good thing for us all.

Take care of yourself, also, because often a tragedy like this is harder on the family members than on the person with the sci. And please keep asking any questions you might have.


PN, I'm glad you won that fight.

[harberrat]

Thankyou all again for all of the info. I am taking notes and bringing them with me on Monday. We are having a meeting with the surgeon,social worker,family and possibly someone from the Kessler institute to discuss what can be done now and keep everyone on the same page. I love being informed so thanks again for all of your knowledge. I have alot of confidence in the doctors but still wish they were not so adamant about there being essentially no hope. Anyone know why? It kind of surprised me at first, thought they would be a little more hopeful. They are very sensitive and understanding but really looking for a glimmer atleast!

[rdf]

Thankyou all again for all of the info. I am taking notes and bringing them with me on Monday. We are having a meeting with the surgeon,social worker,family and possibly someone from the Kessler institute to discuss what can be done now and keep everyone on the same page. I love being informed so thanks again for all of your knowledge. I have alot of confidence in the doctors but still wish they were not so adamant about there being essentially no hope. Anyone know why? It kind of surprised me at first, thought they would be a little more hopeful. They are very sensitive and understanding but really looking for a glimmer atleast!

I think Wise might have posted once they learn that behavior in medical school. To not give false hope to their patients. To me, there is no such thing as false hope, all hope is positive, no matter the odds of one achieving that for which they hope. Good luck in the meeting.

[PN]

I have alot of confidence in the doctors but still wish they were not so adamant about there being essentially no hope. Anyone know why? It kind of surprised me at first, thought they would be a little more hopeful. They are very sensitive and understanding but really looking for a glimmer atleast!

I believe they need to come up with a plan to wean your brother off the respirator. This could take weeks or in my case months.

[harberrat]

RDF thanks for the encouragement. I will not give up hope and will continue to encourage him. I am thankful that I have found you guys and will continue to write. Hoping to have some good news to post soon. I agree, any hope is better than none. When someone of great knowledge that you are looking to for some small possibility of improvement says NO hope it really knocks the wind out of you. Especially when you are trying to encourage someone you love to not give up hope. It makes you feel as if you are doing something wrong. Anyway, much thanks

[teena]

harberrat, did you find my PM's?

[harberrat]

I believe they will be discussing that this Monday. If not, it has been officially put on the menu! Thanks

[med100]

It would be great if his doctors did not push the negative "no hope" aspect. A lot of this is hospital protecting itself. If he gets worse, they warned you. If he gets better, than it is a miracle... Either way, many of us posting here to you today are then considered "miracles." Keep the faith.. keep writing... We care...

[jody]

welcome also linda T, I hope you and yours are doing well with the new sci.

[jody]

Yes, it can be bruised. The problem is, even if his spinal cord isn't cut or torn or have bone chips in it from vertebra, etc, bruising alone can cause spinal cord damage. I was in rehab with a kid who bruised his cord. He didn't have any surgeries, he needed no H-rods or decompression or stabilization. Post-injury, his spine and his spinal cord looked as it did pre-injury.

If I'm incorrect, someone please correct me about bruising and damage.

I wish you and your family the best. Sounds like he's headed for a first rate rehab, and you never know what lies in store for us in the future - always keep hope alive, for hope is a good thing for us all.

Take care of yourself, also, because often a tragedy like this is harder on the family members than on the person with the sci. And please keep asking any questions you might have.


PN, I'm glad you won that fight.

my cord was bruised from swelling. I did not get surgery, but will in the near future due to discs bulging. I was snapped like a whip. you can see mine on MRI, and fluid builds up just below the lumbar injury. lots of stenosis now, as well as repaired cord from birth defect. the swelling lasted almost a year.

[harberrat]

Teena,
Yes I did. I am a little new to forums and it is taking me a little bit to find things and move through the forum. I just replied. Took me a bit to figure out what a PM was,ha! ha! sorry.