Inspired Spinal Cord Injury Support Forum

kasiewood
New Member

Posts: 2
Reputation: 0 Likes
Date Joined: October 2019

Member is: Offline
Send PM

Advice and help please Oct 23, 2019 11:04:02 GMT -8

Quote

Post by kasiewood on Oct 23, 2019 11:04:02 GMT -8

Hello -

This is my first post to the board. On October 3rd, 2019, my dad walked himself to bed - he woke up at 4 am on October 4th unable to move anything below his neck. He had a spinal cord surgery 15 hours later with bone spurs, a bulging disk and compression on his C3 and C4. He remained in the hospital until the 16th, when he was transferred to a specialized spinal cord rehabilitation hospital floor within our state. He is still unable to move anything - but he can FEEL EVERYTHING!! They are wanting to discharge him. The doctor is saying his injury is incomplete. Does anyone have any experience with this??? Thank you!!!!

vintage
Advanced Member

Posts: 2,576

Post Likes Received: 1,757
Date Joined: November 2016
Injury: T9 incomplete
Date Injured: March 15, 2014

Member is: Offline
Send PM

Advice and help please Oct 23, 2019 16:11:13 GMT -8

Quote

Post by vintage on Oct 23, 2019 16:11:13 GMT -8

How horrible, kasiewood. I’m sorry for you and for your dad. Discharging him 20 days later, completely paralyzed, sounds ridiculous to me. What state are you in, please? What did they “rehabilitate”? Did they give him any equipment? Future doctor appointments?

aliyash
New Member

Posts: 32
Post Likes Received: 28
Date Joined: February 2018

Member is: Offline
Send PM

Advice and help please Oct 23, 2019 16:43:21 GMT -8 via Inspired Mobile

Quote

Post by aliyash on Oct 23, 2019 16:43:21 GMT -8

What state are you in? If you are able I would contact Craig Hospital in Denver. They have a nurse help line, numbers for contacting SCI nurses, and information on their website. My husband is and incomplete quadriplegic. In the beginning he had no movement then gradually movement in his thumb and foot about 2 months later. Since then he has the ability to move his left leg and foot, both arms, and grip with his left hand. He is still making strides even 11 years post injury. He can also feel everywhere, however oddly enough, does not feel pain below his nipples. Keep us updated!!

kasiewood
New Member

Posts: 2
Reputation: 0 Likes
Date Joined: October 2019

Member is: Offline
Send PM

Advice and help please Oct 24, 2019 4:06:33 GMT -8

Quote

Post by kasiewood on Oct 24, 2019 4:06:33 GMT -8

Hi! Thank you both for your responses. vintage, they have provided family education and ordered him a sip and puff wheelchair and taught him how to navigate that. They will transfer him to a skilled nursing facility out of the inpatient rehab hospital that he is in currently. I just feel like they are giving up on him. We are in Mississippi. He is at our award winning rehab hospital but this is ridiculous to me.
aliyash, That is hopeful about your husband. It's strange but my dad can feel sensations and pressure like with the pin prick test - but he has no feeling below his nipples either. I just want him to move something! At least his hands. This is heartbreaking.

roosterillusion
New Member

Posts: 24

Post Likes Received: 11
Date Joined: September 2017

Member is: Offline
Send PM

Advice and help please Oct 24, 2019 8:03:59 GMT -8

Quote

Post by roosterillusion on Oct 24, 2019 8:03:59 GMT -8

So sorry this has happened, kasiewood .

Did he have physical and occupational therapy at this rehab hospital? Same questions as vintage - any future outpatient PT or OT appointments? Follow-up care with a specialist? Do you live in an area where these things are accessible?

Unfortunately, with a spinal cord injury there are a lot of unanswered questions and confusion. Continue to push, ask for a patient advocate or social worker and explain your concerns (if you haven't done so already). Is your insurance provider covering these things? You might want to reach out to them and ask about what your options are. Keep us posted.

My Dad has a spinal cord injury (happened just 5 years ago) that was also very sudden. Feel free to PM me any time. Hang in there.

aliyash
New Member

Posts: 32
Post Likes Received: 28
Date Joined: February 2018

Member is: Offline
Send PM

Advice and help please Oct 24, 2019 11:40:53 GMT -8 via Inspired Mobile

Quote

Post by aliyash on Oct 24, 2019 11:40:53 GMT -8

Oct 24, 2019 4:06:33 GMT -8 kasiewood said:

Hi! Thank you both for your responses. vintage, they have provided family education and ordered him a sip and puff wheelchair and taught him how to navigate that. They will transfer him to a skilled nursing facility out of the inpatient rehab hospital that he is in currently. I just feel like they are giving up on him. We are in Mississippi. He is at our award winning rehab hospital but this is ridiculous to me.
aliyash, That is hopeful about your husband. It's strange but my dad can feel sensations and pressure like with the pin prick test - but he has no feeling below his nipples either. I just want him to move something! At least his hands. This is heartbreaking.

Do not give up hope! It took my husband 11 years to be able to hold a catheter without a tenodesis brace. Now he cath a without it, paints, uses a grabber, among so much more! Try to find someone to rehab him at home if possible. Also, there are still so many exercises he can do to keep his muscles from atrophy as much and to build strength. My husband had a bracket screwed into the wall and attached a workout band to this. At first he would attach wrist cuffs and back his power chair up. This puts resistance on the muscles even though the chair is doing most of the work. This allowed him to keep his arms strong. Keeping active and staying moving everyday is what I attribute to him gaining back movement. We got married in August, he was able to stand with the assistance of a standing frame. He was also able to stand with assistance from a friend so we could “dance” upright for the first time. It’s so imperative that you strive for small achievements. I have so many ideas for adaptable items you can put around the house to make him feel more independent. They don’t have to be expensive either. Just every day items used in different ways. Feel free to reach out via message if you need any support or just need to bend an ear.

roosterillusion likes this

vintage Advanced Member Posts: 2,576 Post Likes Received: 1,757 Date Joined: November 2016 Injury: T9 incomplete Date Injured: March 15, 2014 Member is: Offline Send PM	Advice and help please Oct 24, 2019 12:05:50 GMT -8 Quote Select Post Deselect Post Link to Post Back to Top Post by vintage on Oct 24, 2019 12:05:50 GMT -8 kasiewood, we do have several forum members who can move very little. mikeq electricguy alflyhigh taanshi79 They should see your post in the near future.

Site Map	Site Policies	Helpful Links
Home	Terms of Service	Forum Features
About Us	Privacy Policy	Site Discussion
Account	Rules	Server Status
New Posts	Report Abuse	Mobile App

Advice and help please

Post by kasiewood on Oct 23, 2019 11:04:02 GMT -8

Post by vintage on Oct 23, 2019 16:11:13 GMT -8

Post by aliyash on Oct 23, 2019 16:43:21 GMT -8

Post by kasiewood on Oct 24, 2019 4:06:33 GMT -8

Post by roosterillusion on Oct 24, 2019 8:03:59 GMT -8

Post by aliyash on Oct 24, 2019 11:40:53 GMT -8

Post by vintage on Oct 24, 2019 12:05:50 GMT -8

Like Us On Facebook

Help Support The Forum