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Almost a month from my sister's injury

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  • Almost a month from my sister's injury

    Our sad journey started on 8 of August 2011. My sister (34 years old - US greencard owner) and her friend (US citizen) came from Miami to Romania to celebrate my weeding. Sadly, this happiness end up with a car accident. From this accident, my sister end up with a very high spinal cord injury -at C2 level. She needed breath help -her friend is a paramedic in US and she managed to keep my sister alive till the ambulance came to scene. After few hours on a regional hospital she was sent to the biggest neurological hospital in Bucharest. Here she had a Halo equipment to stabilize her spine but no surgery - the doctors looked like waiting for her death. After two days in ICU unit on Bucharest we managed to arange a medical evacuation to Athens/Greece to a specialized hospital. In Greece she has a surgery with good results : the doctors managed to stabilize her spine using some metal plates and screws. She stayed there from 10 to 24 Aug. On 24 we managed again to find money for her transport back to US. *After a few emotions with the upcomming hurricane, they landed fine on Miami airport and transport her to Jackson Memorial Hospital. The doctors from there confirmed the previous diagnostic (C2 spinal cord injury -ASIA A). In the following thuesday they will send her to the rehab center. Her condition didn't improved at all : she still need a ventilator to breath and she is unable to feel/move nothing below the injury.* We still hope that the spinal cord shock is still in place and she will show some improvements soon -are we wrong or is still a chance that she, at least, will be able to breath by her own? Please give us any advice or show us some stories like her Excuse my bad English - hope that you guys will understand me

  • #2
    Welcome Cielo. My sympathies regarding your sister. You're probably going to get the worst case scenario from the doctors treating her, but as everyone here will tell you, it's way too early to know. Every injury is different, as is every recovery. In my case I didn't get any return at all, but I was able to get a phrenic pacer about 6 months after my injury (C1/C2), so I can at least spend time off the vent. It's good that you found this forum, it's an excellent resource. Best wishes.

    Comment


    • #3
      Welcome to our forums. You do very well with your English...no need to apologize. Scraper has given you some excellent information. I assume that the rehab center she is at is the one at Jackson Memorial? Does she have health insurance? Has the Shepherd Center in Miami been considered as well?

      Does she live alone? Even if she does not get any return, it is possible for her to leave the rehab center and live at home, but on a ventilator she would need someone with her 24/7. Attendant care may or may not be available depending on her income and eligibility for Medicaid. She may also be a candidate for the diaphragmatic pacer mentioned above, and should be evaluated for this sometime soon. Please ask her to ask about this ASAP.

      Please come back and ask questions. We have a number of members who have similar injuries and can provide you with some answers.

      (KLD)
      The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

      Comment


      • #4
        My sympathies too. MRI pictures may give you an indication of how damaged her spinal cord is. again it is still early in the recovery timeframe window which is usually stabilizes within 6 months although many have had so form of return later on. i pray she does get recovery.

        Comment


        • #5
          Thanks a lot for your encouragements. Our best wishes for you, too.
          She does have a health insurance : they already payed her fees on Greece Hospital. Unfortunately, they didn't covered the transportations (100k+ US dollars). At that moment when we decided where to send her we knew only two rehab centers : Jackson Memorial and another one (closer to their home but not so big as Jackson). We hope she will get the right treatment at Jackson. In US she only have two close persons : her friend (June) - her guardian angel and her ex husband. They are doing their best to be near my sister but in a few months we have to find the money to get her back to Romania as she will need 24/7 and our family cannot afford to pay her care fees in US. We still have no clue how we can take care of her but we will find a way.

          Comment


          • #6
            Hi Cielo, I am so sorry to hear about your sisters accident, but very glad you found this site. Keep writing here with whatever questions you have as they occur, as there is always someone who can help with information. Your English is perfect, so there won't be any problem with anyone understanding you. Wishing you good luck.

            Comment


            • #7
              Cielo, my very best wishes to you, your sister, your family and helpers. I echo what others have said, your English is excellent and you will have no problem being understood here - it's a great forum for help, support, answers and ideas. Blessings to you each day.
              MS with cervical and thoracic cord lesions

              Comment


              • #8
                Cielo, I hope your sister does well in her recovery. She is in a great facility at Memorial Jackson. It is associated with the Miami Spinal Cord Center. It will be a difficult process, but it sounds like she has a lot of love and support. I am relatively new to this forum, but I have found it has a lot of information from wonderful people willing to share.
                Incomplete T-12/L-1

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                • #9
                  Dear Cielo
                  I was reading your post and it touched me deeply very heartfelt .
                  Your sister is blessed to have you all love her so much . As time goes on maybe the swelling will subside and she may regain some sensations etc... I am a SCI patient myself and truthfully believe that in time special thing's can happen . Over years i've noticed changes etc... She is in my prayers and thoughts .

                  I wish your sister comfort and you all support on your journeys to Romania

                  Sincerely ; GL

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                  • #10
                    I just received a very bad news from her doctors : they are considering her case hopeless and a waste of money and time so they want to discharge my sister as soon as possible.
                    SCI Nurse, you said something about Shepherd Center in Miami - do you have any contacts from them?

                    Thanks slot

                    Comment


                    • #11
                      It may be that nothing more can be done from the acute care standpoint, but she still needs a good rehabilitation program that will prepare her to live life out of an institution and get on with living while maintaining her health.

                      The Shepherd Center is in Atlanta, not Miami. In Miami there is a SCI rehabilitation program associated with the University of Miami at Jackson Memorial, but I would recommend the Shepherd Center over that one. Other possible centers in the USA that you may want to explore include the Rehabilitation Institute of Chicago (RIC), Craig Hospital (Englewood, Colorado), and the Kessler Institute in New Jersey.

                      (KLD)
                      The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

                      Comment


                      • #12
                        Hi Cielo,

                        I'm a C1-2 and just want to offer encouragement and prayers, and potentially useful information. SCI Nurse KLD is of course correct that your sister needs specialized SCI rehab (preferably at a center KLD mentioned). But I also want you to know that life as a C1-2, even with a vent and no function return, CAN still be good.

                        I was injured in 1997 and my family (and later me) couldn't find much info on life as a C1-2, or with high-level paralysis and a ventilator. So when I learned about my condition and we learned good ways to do things, I started my website to share such info. Our ways aren't the only good ways, but perhaps you'll find the info useful.

                        Here's my website:

                        http://www.lookmomnohands.net/

                        This page has topics regarding life with an SCI (especially high-level quadriplegia):

                        http://www.lookmomnohands.net/Life_with_an_SCI.htm

                        And I wrote this for SCI support groups:

                        http://www.lookmomnohands.net/My_Ful...ort_Groups.htm

                        God bless!

                        Bill Miller
                        Wheelchair users -- even high-level quads... WANNA BOWL?

                        I'm a C1-2 with a legit 255 high bowling game.

                        Comment


                        • #13
                          P.S. you mentioned hoping your sister could eventually breathe on her own.

                          That could depend on whether she gets a little back (I'm told C3 is the level at which breathing can come back). But she could also be a good candidate for a Diaphragm Pacing System (DPS). We discuss the DPS and related issues in detail here:

                          /forum/showthread.php?t=134394

                          God bless!

                          Bill Miller
                          Wheelchair users -- even high-level quads... WANNA BOWL?

                          I'm a C1-2 with a legit 255 high bowling game.

                          Comment


                          • #14
                            Hi guys,

                            Sorry for not keep you up to date lately but I don't have to much to say : she still in rehab, but not for too long. She had one issues with her left lung and because of this she was almost 2 weeks back in hospital but now things are looking much better.
                            Unfortunate, her friend didn't managed yet to find a place where she may stay after rehab, mostly because of her dependency of the vent...
                            Bill, before the lung problems, doctors discussed about that pacemaker but I don't have any news about how things are in this moment.

                            Thank you very, very much for your support and prayers.

                            Comment


                            • #15
                              I hope that you will be able to find a good place for your sister to stay after rehab, Cielo, that her lungs will continue to improve and that she will have ongoing progress in her rehabilitation.
                              MS with cervical and thoracic cord lesions

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