new to SCI

11-16-2004, 04:24 PM

I am trying to educate myself regarding spinal cord injuries. My brother-in-law (he is 56 yrs. old. He was in a mountain bike race on 10/31/04 and he flipped over his handle bars. As a result he has a level C-4 injury. He is currently on a vent., has a surgical trach, and feeding tube. He is amazingly alert and is able to mouth words. He spent nearly two weeks in ICU before he was moved to a step down unit. Since that transition he has been battling fevers. All cultures come back negative. Are fevers a common in patients with SCI? My sister has some very difficult decisions to make concerning rehab. in the very near future. If he is dependent on the vent., any recommendations for rehabs in Virginia area?

I look forward to responses. Thank-you in advance for your support.

Rose

Lewis · 11-16-2004, 05:24 PM

I'm sorry to hear about your brother-in-law's unfortunate accident.

Personally, I would send him to the Shepherd Center in Atlanta, Georgia. They have an excellent track record with high quadriplegics and weaning many off the ventilator. I'm a C5 complete quadriplegic and spent two months at the Shepherd Center, after determining I was not receiving great care here in Boston.

The Shepherd Center will change your lives for the better. They are the largest and one of the best, if not the best, in the country.

-Lewis

LFC · 11-16-2004, 07:27 PM

Rose, I am very sorry about your brother-in-law's accident. I hope you find a very good SCI hospital. My son was injured (C2/3)and one of the first hospitals he was at was not very experienced with SCI and it soon became evident. The one thing the doctors at the hospital did was to "chase fevers". They put him on very powerful antibiotics because they were so afraid of infection. His lab work was normal, so they gave him every test I think known to man (including a colonoscopy). All came back negative. Unfortunately, in our state of shock it took us awhile to figure out that things were not right. We transferred him to a Model SCI center and what a difference that made. It was there we learned about the temperature regulation problems that cervical SCIs can have. I can't remember the name for it offhand, but I am sure one of the wonderful SCI nurses on this site will know the name. At the SCI center they would just put fans on him to help reduce his temps. They also had so much experience with vent weaning, which is important if that is a possibility. It is good you have found this site and are asking questions. Good luck to you, your brother-in-law and your family.

rickhemi · 11-17-2004, 05:55 AM

Rose,

Sorry to hear about your brother-in-law's accident. I will add him to my prayer list.

We're in Central Virginia and we have found UVA in Charlottesville to be a great SCI facility. My daughter is T4 incomplete, so she was never put on a vent, but they are the best facility that we have found for SCI patients. Perhaps this would be a good place to start, until you've made arrangements for somewhere out of state.

Take heart, I've been communicating with another parent who's child was a quad on a vent for 2 months, now he is walking and in college.

God's Grace to you and your family,

Rick

betheny · 11-17-2004, 10:20 AM

Welcome Rose. I'm sorry you had to find us but since you need us, I'm glad you did.

C4, from my limited experience, can go either way. I'd say he has a good chance at that level of being able to be weaned off the vent. I know 1 member here who is C4 and uses the vent only at night.

I don't know the rehab situation in Virginia, but please encourage your sister to seek the most experienced sci unit she can find. This can't be overstated, the rehab process is so important. He is very early in his injury; good rehab now could make a huge difference in his quality of life later.

The fevers may be due to improper body temp. regulation, in my opinion. (I'm no medical pro, they'll be checking in soon I'm sure.) The spinal cord controls so many things we are unaware of, such as body temp, blood pressure and as you know, breathing.

Below is the link to an article written by Dr. Young, the founder of this website and a well-known and respected doctor/researcher in the field of spinal cord injury. I've also added a quote from the article; I STRONGLY encourage you to print this, read it and pass it around to your family; especially your brother-in-law. It covers most of the basics for a new injury as well as staistics on recovery post-sci.

http://carecure.rutgers.edu/spinewir...I/AcuteSCI.htm

"Spinal cord injury disconnects the brain from the body. This leads not only to loss of sensation and motor control below the injury site but may be associated with abnormal activities of the spinal cord both above and below the injury site, resulting in spasticity, neuropathic pain, and autonomic dysreflexia. Many functions of our body that we take for granted, such as going to the bathroom, sexual function, blood pressure and heart rate, digestion, temperature control and sweating, and other autonomic functions may not only be lost but may be abnormally active. Finally, contrary to popular notions about spinal cord injury, recovery is the rule and not the exception in spinal cord injury." ...Dr. Wise Young.

My other advice is to watch his skin carefully, he should be turned every 2 hrs. A pressure sore can really set back the rehab progress.

Good luck and wish him the best, tell him we're here...Beth

Can't stop the spirits when they need you/This life is more than just a read thru.-
red Hot Chili Peppers

rosewilo · 11-19-2004, 01:12 PM

Thanks to those of you who gave responses. Meredith (my brother-in-law) has been found to have pneumonia, so they think this is where the fevers are coming from. My sister has narrowed her choices of rehabs down to four (VCU in Richmond, Kessler, Shepard in Atlanta, and Charlottsville). Basically it will depend if M. can be weaned from the vent. Keep praying for him.

A few questions: once he overcomes the pneumonia, is it beneficial to have a vaccine to protect against another chance of getting it again and should he have a flu vaccine?

Thanks to all.

Rose

Lewis · 11-20-2004, 07:41 PM

Quote:

Originally posted by rosewilo:

Basically it will depend if M. can be weaned from the vent. Keep praying for him.

A few questions: once he overcomes the pneumonia, is it beneficial to have a vaccine to protect against another chance of getting it again and should he have a flu vaccine?

Your decision about his rehabilitation hospital should not be contingent upon coming off the vent. This is one reason you need to get him to a specialty hospital (Shepard in Atlanta is my recommendation).

I'm not sure when he should get the shots, because he is a new injury, but individuals with a spinal cord injury are considered high risk and should get the shots - especially the flu shot. I'm sure the nurse will follow up with a better/more detailed explanation.

Stay strong.

-Lewis

SCI-Nurse · 11-20-2004, 08:09 PM

Once he has stablized and had no fevers for at least a week, both flu and Pneumovax should be considered as long as his white count is normal. Remember that Pneumovax protects only from pneumonia caused by pneumococcus bacteria. You can still get pneumonia from viruses and other bacteria. A good prevention program and pulmonary muscle strengthening is also needed.

Be sure that the center you choose specializes in SCI. Shephard is excellent. Kessler is probably a second choice with UVA a third choice in that area.

(KLD)

michaelm · 11-23-2004, 01:41 PM

rosewilo

I have been a c4 quad for the past 25 yrs now. I do all my rehabilitation and follow up at kessler and they are great. If I can help you out in anyway, just email me and i'll do what I can to help. No matter what anyone tells you. THERE IS HOPE!

11-16-2004, 04:24 PM	#1
Guest Posts: n/a	new to SCI I am trying to educate myself regarding spinal cord injuries. My brother-in-law (he is 56 yrs. old. He was in a mountain bike race on 10/31/04 and he flipped over his handle bars. As a result he has a level C-4 injury. He is currently on a vent., has a surgical trach, and feeding tube. He is amazingly alert and is able to mouth words. He spent nearly two weeks in ICU before he was moved to a step down unit. Since that transition he has been battling fevers. All cultures come back negative. Are fevers a common in patients with SCI? My sister has some very difficult decisions to make concerning rehab. in the very near future. If he is dependent on the vent., any recommendations for rehabs in Virginia area? I look forward to responses. Thank-you in advance for your support. Rose

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11-16-2004, 05:24 PM	#2
Lewis Senior Member Join Date: Mar 2003 Location: Boston, Ma Posts: 1,322	I'm sorry to hear about your brother-in-law's unfortunate accident. Personally, I would send him to the Shepherd Center in Atlanta, Georgia. They have an excellent track record with high quadriplegics and weaning many off the ventilator. I'm a C5 complete quadriplegic and spent two months at the Shepherd Center, after determining I was not receiving great care here in Boston. The Shepherd Center will change your lives for the better. They are the largest and one of the best, if not the best, in the country. -Lewis

11-16-2004, 07:27 PM	#3
LFC Senior Member Join Date: Jan 2004 Posts: 100	Rose, I am very sorry about your brother-in-law's accident. I hope you find a very good SCI hospital. My son was injured (C2/3)and one of the first hospitals he was at was not very experienced with SCI and it soon became evident. The one thing the doctors at the hospital did was to "chase fevers". They put him on very powerful antibiotics because they were so afraid of infection. His lab work was normal, so they gave him every test I think known to man (including a colonoscopy). All came back negative. Unfortunately, in our state of shock it took us awhile to figure out that things were not right. We transferred him to a Model SCI center and what a difference that made. It was there we learned about the temperature regulation problems that cervical SCIs can have. I can't remember the name for it offhand, but I am sure one of the wonderful SCI nurses on this site will know the name. At the SCI center they would just put fans on him to help reduce his temps. They also had so much experience with vent weaning, which is important if that is a possibility. It is good you have found this site and are asking questions. Good luck to you, your brother-in-law and your family.

11-17-2004, 05:55 AM	#4
rickhemi Senior Member Join Date: Nov 2004 Location: usa Posts: 1,453	Rose, Sorry to hear about your brother-in-law's accident. I will add him to my prayer list. We're in Central Virginia and we have found UVA in Charlottesville to be a great SCI facility. My daughter is T4 incomplete, so she was never put on a vent, but they are the best facility that we have found for SCI patients. Perhaps this would be a good place to start, until you've made arrangements for somewhere out of state. Take heart, I've been communicating with another parent who's child was a quad on a vent for 2 months, now he is walking and in college. God's Grace to you and your family, Rick

11-17-2004, 10:20 AM	#5
betheny Senior Member Join Date: Sep 2001 Location: Oklahoma,USA Posts: 18,337	Welcome Rose. I'm sorry you had to find us but since you need us, I'm glad you did. C4, from my limited experience, can go either way. I'd say he has a good chance at that level of being able to be weaned off the vent. I know 1 member here who is C4 and uses the vent only at night. I don't know the rehab situation in Virginia, but please encourage your sister to seek the most experienced sci unit she can find. This can't be overstated, the rehab process is so important. He is very early in his injury; good rehab now could make a huge difference in his quality of life later. The fevers may be due to improper body temp. regulation, in my opinion. (I'm no medical pro, they'll be checking in soon I'm sure.) The spinal cord controls so many things we are unaware of, such as body temp, blood pressure and as you know, breathing. Below is the link to an article written by Dr. Young, the founder of this website and a well-known and respected doctor/researcher in the field of spinal cord injury. I've also added a quote from the article; I STRONGLY encourage you to print this, read it and pass it around to your family; especially your brother-in-law. It covers most of the basics for a new injury as well as staistics on recovery post-sci. http://carecure.rutgers.edu/spinewir...I/AcuteSCI.htm "Spinal cord injury disconnects the brain from the body. This leads not only to loss of sensation and motor control below the injury site but may be associated with abnormal activities of the spinal cord both above and below the injury site, resulting in spasticity, neuropathic pain, and autonomic dysreflexia. Many functions of our body that we take for granted, such as going to the bathroom, sexual function, blood pressure and heart rate, digestion, temperature control and sweating, and other autonomic functions may not only be lost but may be abnormally active. Finally, contrary to popular notions about spinal cord injury, recovery is the rule and not the exception in spinal cord injury." ...Dr. Wise Young. My other advice is to watch his skin carefully, he should be turned every 2 hrs. A pressure sore can really set back the rehab progress. Good luck and wish him the best, tell him we're here...Beth Can't stop the spirits when they need you/This life is more than just a read thru.- red Hot Chili Peppers

11-19-2004, 01:12 PM	#6
rosewilo Junior Member Join Date: Nov 2004 Location: Avon, IN USA Posts: 13	Thanks to those of you who gave responses. Meredith (my brother-in-law) has been found to have pneumonia, so they think this is where the fevers are coming from. My sister has narrowed her choices of rehabs down to four (VCU in Richmond, Kessler, Shepard in Atlanta, and Charlottsville). Basically it will depend if M. can be weaned from the vent. Keep praying for him. A few questions: once he overcomes the pneumonia, is it beneficial to have a vaccine to protect against another chance of getting it again and should he have a flu vaccine? Thanks to all. Rose

11-20-2004, 08:09 PM	#8
SCI-Nurse Moderator Join Date: Jul 2001 Location: USA Posts: 41,512	Once he has stablized and had no fevers for at least a week, both flu and Pneumovax should be considered as long as his white count is normal. Remember that Pneumovax protects only from pneumonia caused by pneumococcus bacteria. You can still get pneumonia from viruses and other bacteria. A good prevention program and pulmonary muscle strengthening is also needed. Be sure that the center you choose specializes in SCI. Shephard is excellent. Kessler is probably a second choice with UVA a third choice in that area. (KLD)

11-23-2004, 01:41 PM	#9
michaelm Senior Member Join Date: Aug 2001 Location: montville nj usa Posts: 1,139	rosewilo I have been a c4 quad for the past 25 yrs now. I do all my rehabilitation and follow up at kessler and they are great. If I can help you out in anyway, just email me and i'll do what I can to help. No matter what anyone tells you. THERE IS HOPE!