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Thread: Please help!!!

  1. #1
    Junior Member AkaMsPris's Avatar
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    Please help!!!

    Long story short:

    I am new to all of this...My grandmother was flown to a trauma hospital on 5-27-05.She fell approx. 5-6 ft from a deck that was under construction. She hit her face on the way down then landed on her neck...resulting in a c-5 fracture...she just have fluroscopy done on her neck and appears that the ligament in her cervical area has been injured...2 weeks ago they said that she was going to be brain dead...she isn't...she is complete with the program...they said she would be paralized (quad)...she isn't...we just do not know what to believe...they now want to fuse her neck from c-2 to c-5...is this the right choice ...are there any other options...also she is on a vent they say she will have hat for the rest of her life...is it possible they are wrong again??? thank you for any help understanding this....

  2. #2
    akamspris,

    I am so sorry to hear about your grandmother. It is unfortunate that you are being given all these dire prognoses.

    In my opinion, being old is not a reason to get appropriate care. In the 1970's, when I was a medical student, we were taught that it would not be worthwhile to engage in extraordinary interventions to treat people who are old. For example, no surgeon would consider doing a valve replacement or a heart transplant in a person who is over 60 years old. The reasoning was that they will die shortly anyway. This approach has now changed as people are not only living longer but doing so with good quality of life. A person who is 80 years old, for example, has a much greater likelihood of reaching 90 years old.

    Assuming that your grandmother was healthy and active before her accident, I think that they should treat her without considering her age. For example, if she has an unstable fracture, it should be stabilized aggressively. Likewise, if she is on a ventilator, they should plan to wean her as aggressively from the ventilator as they would a younger person.

    If her fracture is indeed at C5 and she has had an injury to C5 cord, they should be planning to wean her off the respirator as soon as possible. I am not sure that I understand why they would want to fuse her from C2 to C5 if her fracture is at C5. To treat C5 fracture, they would want to stabilize C4, C5, and C6. Are you sure that she only has a C5 fracture? If she only has a ligament injury, such aggressive stabilization is puzzling. Something is not right.

    Wise.

  3. #3
    Where is your grandmother? If she is in VA, and she is not already there, then she should get transferred to the Model System SCI Center there:

    Virginia

    VCU Model Spinal Cord Injury System
    Virginia Commonwealth University
    School of Medicine
    PO Box 980661
    Dept. of Physical Medicine and Rehabilitation
    Richmond, VA 23298-0661
    Contact: Michelle Meade, PhD
    voice: (804) 828-0955
    fax: (804) 828-5074
    e-mail: mameade@vcu.edu
    URL: http://www.sci.pmr.vcu.edu

    I would agree with Dr. Young. Just because she is older is not a reason for her to not be aggressively treated and given the best care, including acute comprehensive rehabilitation. We often see older people with SCI who were shunted off to a nursing home much too quickly just because someone wrote them off. Often with a good rehabilitation program we are able to get them home.

    It is also way too early to tell how much return she will get and if she will be ventilator dependent. You say she is not a quad...does she have movement in her legs or hands? What neurologic level (not fracture) are they saying she is?

    Most people with an injury below C3 or 4 can eventually be weaned from the ventilator. How old is she? What was her healthy like before this? Was she a smoker? This will all have impact on the ability to get her off the ventilator.

    I agree with Dr. Young that a second opinion about the surgery may be warranted. I usually recommend that consultation be obtained from both a neurosurgeon who specializes in spinal surgery as well as an orthopedic surgeon who specializes in spinal surgery. They each have somewhat different perspectives. She should also have a consultation ASAP from a physiatrist (medical specialist in rehabilitation).

    Right now, it will also be critical to be sure she does not get pressure ulcers. Someone from the family should be inspecting her skin with the nurses daily, and she should be on a special bed to help prevent pressure ulcers. Even with this, she needs to be religiously turned every 2 hours. A pressure ulcer would be a devastating set back for her at this stage.

    (KLD)

  4. #4
    Junior Member AkaMsPris's Avatar
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    1st please excuse my spelling and typing errors....

    WOW thank yo finally some one with a ray of hope ....yes we are in Virginia...as a matter of fact I live just 10 miles north of Fredricksburg...but that is just it I had no idea where to turn
    My grand mother was for the most part very healthy at 75 years old she walked everyday worked part time she has a weight problem but that is all...
    She is at Fairfax Hospital right now (she was folwn there from the accident sight at her house) on 5-27-05...Let me fisrt start by saying that she coded once in the helicopter they tried to intubate her 5 times prior to getting in the helicopter and comby tubed her 2 times WHY NOT CRIK her??? then when the finalldid get her to the hospital that night she coded 2 more times and we were told that she would be brain dead...that was at about 10:30 pm at about 3-4 am the dr came in and told us she opened her eyes but DO NOT get hopeful....ok
    The next day she started to answer questions with moving her head yes and no...
    She then on the following thurs coded again was a line for approx 3 min (we had made her a dnr)and she brought herself back....
    Since then I think she has made remarcable progress...she trying to talk..the first thing she told us was the life insurence man needs to be paid...the second thing was a car payment was due....all might i add were true...she is moving her upper body (when they said she would be a quad) moving her wrists...only no movement from the waist down...
    just a couple of days ago they pulled my mom aside and was asking her how far we wanted to go at best she will be on a vent and paralized in a nursing home...BUT SHE HAS MADE SO MUCH PROGRESS and she has told me "I had to fight to be here....watch the dr's)So of course we told them alllllll the wayThat is when they decided to do the fluroscopy and that is when they told my mom that the broken c-5 is not the problem...the ligiment is shredded...so the dr's want to fuse from c-2 to c-5...mom is worried they have been wrong soooo many time thus far what is the right decision....wait and let her heal but then the problem is the lungs i guess from cpr...one of her lungs collapsed and she has fluid building up and they already took out the chest tubes.... so that is why they want to fuse her now...
    ahhh we are a very optomistic family...BUT we do know the reality that she is going to have deficits...but it feels like no one wants to give us ANY hope to hold on to she has the will she has said herself she wants to be here...so it is now my mission to find some one who can give her the chance and not people that seem like they just want to right her off
    Thank you all for your time and help...I really need it now more than ever!!!!
    Nicole

  5. #5
    Junior Member AkaMsPris's Avatar
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    Also you mentioned VCU what about UVA..what is your opinion???

  6. #6
    It is a good alternative, but is not a Model SCI Systems Center.

    You can also call the National Spinal Cord Injury Association hotline (which is located in that area) to see if they can guide you, as well as the Christopher & Dana Reeve Paralysis Resource Center help line. Both can offer a lot of guidance in getting people with SCI into the appropriate programs for their needs.

    (KLD)

  7. #7
    Senior Member zillazangel's Avatar
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    Goodness sake!!! Not to be rude, and without all the information ... but those doctors sound like they are just writing your grandmother off because she's 75 years old. GET HER TRANSFERRED to the Model SCI Center that KLD described and do it NOW. Call them and they are VERY helpful in navigating the red tape FOR YOU to get her transferred to them. They want to help and they will help your family get her trasnferred and they understand that time is of the essence. Also call the hotline numbers - call NOW, stop reading this and call now (if you haven't already). The hospitals answer the phone 24 hours a day, call now, and call the hotlines now. Call them all and get her TRANSFERRED. And do not allow a fusion - do not allow her to consent to it unless she will die without it (which I doubt very much).

    She will make a remarkable recovery and you are a remarkable woman for finding this place and fighting for her!!!

    Ami in NC (my husband is a C4 quad)

  8. #8
    Nicole,

    I looked up some numbers for you. It would be helpful for you to begin by calling the following departments at Fairfax Hospital to ask questions and voice concerns:

    Patient Relations: 703-776-3663

    Dept of Trauma Services: 703-776-2274

    The case managers and social workers there are available to hear your concerns and help you find the answers you are looking for.

  9. #9
    Man,this so unbelievable! When I was flown to Fairfax, completely different story.Was given excellant care and they were prompt on all health issues. It just blows me away that an elderly person is treated so wrongly in this day and age. Please follow the advise that each of these folks have given you. I am also somewhat new to the SCI scene and this website has been a Godsend for getting answers no one else would give. Stay strong and keep us posted on her progress.

    Make it your ambition to lead by example,to work with your hands,so that your daily life may win the respect of outsiders,and so that you will not be dependent on anybody..Motley Fool

  10. #10
    Junior Member AkaMsPris's Avatar
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    Hello everyone I regret to inform you all that my grandmother has passed :-( It happened last Thrusday. We were already on the ball getting second opinions...I know it is not who you all recommended but my mom got to speak with Dr. Jane (Christopher Reeves Dr.) and he was going to look at her films along with some other people...however that came to a stop...We went in to the hospital on Thurs and my mom got there before me and warned me that she was not doing good... her heart had stopped 3 times that night and once in the morning...the Dr. explained to my mom that this happens with the type of injury she has...they could not get her to wake up so my mom told her that I was on my way to the hspital...so I got there and went in her room...she woke right up and smiled at me...then it just seemed like her body gave up and her heart rate was going up and down up to 80 down to 10 up to 65 down to 2 ...you could tell that she still wanted to fight but her body would not let her... my mom, me, and her husband were all at her side with her.
    Thank you all for your support and help...you all are wonderful people...you helped me so much in such little time I wish we could have kept her going so that we might have been able to help someone else but she is in a better place...So if nothing eles anyone who reads this who is new to this site.. ASK QUESTIONS the people on this forum will do anything to help you and support you...
    Just so you all know... my family asked everyone at the funeral and anyone that called...inlue of flowers or anything we asked that donations be made in her name to the VCU Model Spinal Cord Injury System...I also hope sometime in the fall to host a car show in my area to raise money for this cause i hope that it will work out and become an annual event!!!
    Thank you all again!!!!

    Nicole

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