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What To Expect With A C1 Injury?




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#1 Vogey

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Posted 14 May 2008 - 02:22 AM

Hello all,

My name is jake, a.k.a vogey and on last saturday my dad was in a bad car accident, he rolled his expedition 6 times and was ejected from the vehicle, the first person to find him was his brother, my uncle, he was following a mile or so behind him.

As of right now he is a c1 parapalegic (don't know if i spelled it right,) his c1 vert. is broken in half and i guess his skull is completly seperated from his neck, they have done numerous ct scans (3 a day) because his brain is bleeding, but not enough to put a tube in and drain it.

They did a MRI on his spinal cord and its not severed or cut or anything but it is bruised, but not that bad they said they have seen way worse, whitch is really surprising to them cause its the worst c1 fracture they have ever seen, a spinal cord looking good on a MRI and working are 2 differant things they told us, and that we just have to wait and see what happens.

He is initiating breathing on his own but its too shallow to let him breathe on his own, so he is on a ventalator.

I'm 24 years old the oldest of 2 boys, my dad is 44, we have been with him pretty much the entire time he's been in the hospital (the accident was 2.5 miles from home).

He has moved his left arm, mostly looks like twitches, did that right away, the doc's not sure if it was reflexes or him, most of us have felt him squeeze his left hand but again the doc's havn't seen it and not sure if its reflexes or not. Today when they where suctioning his lungs his left shoulder was moving, to me it looked like he didn't like the feeling, but again could have been reflexes.

We are all scared and don't know what to expect or anything, all we can do is tell him we love him and that he will be ok, and pray for him, and i guess i was just wondering what can we do to help him the best we can and what can we expect?

He is in HCMC - Hennipen County Medical Center, and has the best spinal cord doc in Minnesota we've been told, he is responsive, opens his eyes, looks at us blinks for us when we ask him questions. I brought in a portable dvd player today and his favorite movie (the count or monte crisco) and have it playing so he can watch it and listen to it, we have hope that he will get better and understand it will take time.

#2 Kev-O

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Posted 14 May 2008 - 02:42 AM

I am very sorry to hear about your situation. C-1 is about as bad as it gets. The only thing worse then that would be brain damage or death. The thing with SCI is the only thing you can really do is just wait an see. Everyone's body reacts different. There would be no way of telling how bad it could be. Has the Dr said anything about complete or incomplete? His injury could be very bad it just all depends. Christopher Reeves was a C-2 i think if not maybe a C-1 or C-3 an you have seen how he lived his life.

#3 Vogey

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Posted 14 May 2008 - 03:10 AM

The doctors did say it was worse then Chris Reeves just cause its higher, and as for incomplete or complete, we heard about that today for the first time, and clinicaly he's complete as he's not moving anything or responding to pain, but he's incomplete in the MRI.

Actually we did get a result today the nurse pricked his finger and he opened his eyes, he clearly felt it. so im sticking with incomplete.

#4 Quad65

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Posted 14 May 2008 - 01:31 PM

Sorry to hear about your dad, Vogey. I live in Minnesota, too. I'm just outside Zimmerman, between Elk River and Princeton, off 196.

HCMC is good. So is Abbott-Northwestern and the Kenny Institute. I'm a long time C5-C6 incomplete. Like the others have said, it's a crap-shoot. You never know until you give it some time. You took an important first step in reaching out here and seeking knowledge. Keep doing that and keep us posted.
The first signs may be encouraging.
-- Whatever doesn't kill you, makes you want to get even real bad.

#5 kewlcatkez

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Posted 14 May 2008 - 02:04 PM

The doctors did say it was worse then Chris Reeves just cause its higher, and as for incomplete or complete, we heard about that today for the first time, and clinicaly he's complete as he's not moving anything or responding to pain, but he's incomplete in the MRI.

Actually we did get a result today the nurse pricked his finger and he opened his eyes, he clearly felt it. so im sticking with incomplete.



Hello Vogey,

Sorry to hear about the accident which your dad had. I am not a dr, but I am a Qualified RN and until fate intervened and the chair called, I specialised in Cardiac Nursing. My experiences are based upon this.

I would say that the positive things which you have been told are that your dad's spinal cord is not severed, and that it appears to be in good shape on the MRI. This is encouraging even in a C1 injury, However this doesn't necessarily mean that he will make a full recovery. It may mean that he recovers significant function - especially considering he initiated breathing on his own. However, time is the only way of telling at this point. Also, after a spinal cord injury, there is a lot of 'swelling' and a situation called "spinal shock" occurs. This is a state whereby the reflexes and 'signals' below the point of injury are interrrupted sometimes totally lost for a period of time.

The total process can take around 12 months, although some drs and Scientists now believe that it can be much longer than that in incomplete injuries. However this is usually including the very intricate and comprehensive stages and is not based soley on function. Whether or not your Dad is complete or incomplete, well it may be too early to say if his injury is not a complete sever of the cord...Ultimately, after a period of time from days to months and occasionally up to 2 years, the inflammation subsides sufficiently enough for the true 'injury' level to be seen. Of course nothing is ever clear cut and everyone is different. Throughout this process Physio and rehabilitation therapy as well as Respiratory therapies and being with his family and friends also plays a big part. So at this stage it could be that the movement is purposeful, but if your dad is sedated as well as on the vent, it may be that it is the twitching of reflexes which are returning.

Just to pick up your next point about your dad being on a vent. In the initial stages, even if the diaphragm is not totally affected, and even in lower injuries, the person is often placed on a vent to allow their bodies to recover. Therefore as in your dad's case, whereby he is able to take breaths, it may have been best to sedate and 'take over' breathing mechanically - Ie, the diaphragm is totally paralyzed, the person may not be able to breathe on their own and often must be placed on ventilators; patients with weak or paralyzed expiratory ( breathing out) muscles (principally the abdominal and intercostal muscles) may have impaired ability to cough and clear secretions. The accumulation of retained secretions can lead to atelectasis and pneumonia.

As I mentioned above, the act of breathing involves more than the Diaphragm ( altho it is of course key). Breathing includes more than the Diaphragms movement. Therefore, the diaphragm can sometimes be moved by the other inspiratory muscles - Intercostal ( between the ribs) etc, and so Some people with very high injuries can breathe without a vent for moderate periods - eventually. ( the muscles have to strengthen). Chest physio, Chest percussion ( where the chest is tapped to loosedn secretions) etc are very useful not just to prevent infection, but to help strengthen/initiate a cough, which makes the muscles work!

Also, in terms of the Ventilator, there are special considerations in sci which are not just dependent upon whether your dad can take a breath on his own. The Diaphragm may be/ probably be paralysed to some (greater or lesser)extent. This can mean that the breaths taken are not as strong as someone who has a strong, non paralysed Diaphragm. However, Nursing and anaesthesia care is undertaken whilst looking for feedback on how the person is doing. Also Anaesthetists are very well adjusted to looking after the paralysed person since they induce paralysis all the time in the unconscious ( to stop them pulling tubes and injuring themselves for instance).

It will be essential to have a PT ( physiotherapist) for 'chest pt' this will be more of an issue in the early days whilst the Trach etc is in situ as the body will make more secretions to try and get rid of what is to it, a foreign body. Chest PT is also very useful in children and adults alike - also to assist with "coughing' up mucous. The RNs will also 'suction' the trach and or your Dad's mouth etc to assist in this.

Further still down the road and based upon the feedback the medics get from testing and MRIs and the possibility of "spinal shock" lessening, they will look into weaning, or perhaps protocolls to strengthen supportive muscles which can lead to periods off the vent for even the so called "vent dependent". Many Protocols exist for weaning people from a vent. They all differ a little, but they have one thing in common. They all are dependent upon the feedback from the person who is being weaned. You will also find that the Ventilator is set a little differently than it once was, so that the person can take a few breaths on their own, instead of being forced into them. There is nothing to worry about as if the person does not attempt to breath within a time frame, the vent will do so for them etc.

Initially the weaning takes place for a very short period of time. This is nothing to worry about, It is normal as the intercostal muscles of the chest etc will fatigue. Obviously, this is even more f an issue in a person with a SCI which affects their Diaphragm etc. Over a period of time, depending upon how quickly strength is built up etc, these periods will increase.

Sometimes Spontaneous Breathing trials are performed either after the above stage or independent of it. If it is the only method used it is usually because the person being ventilated is showing signs of being more than ready to wean, such as 'fighting' the vent and 'panicking' when they are artificially ventilated.

Although this will be a difficult step, it is important to remember that most forst attempts to wean fail due to the person's body being used to the vent and so the first attempt is usually seen as a test or trial run. Also, remember that spontaneous breathing is most successful when the person is positioned so that their chest is free to breathe, when they are upright as far as possible and when they are not tired from Therapy, being bathed or attempting to speak via a speaking valve etc.


I know that some of this is too far down the road yet, but wanted to answer as things came into my head. I hope that your dad continues to gain strength and function and that you are able to vent and talk to someone too. It is an unbearable time for all of you. Hang in there and please keep us informed of your Dad's progress,

Take care ( and sorry for the diatribe)

K

Edited by kewlcatkez, 14 May 2008 - 05:17 PM.

Ex Nurse (med retired)
Connective tissue disorder & associated paralysis.

#6 GettingTired2

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Posted 14 May 2008 - 04:11 PM

Hi Jake,
I'm really sorry about your Dad's accident.

My husband is a C2 Vent Dependent Quad, since 3/18/03. We also live in MN, in Two Harbors, about 20 minutes from Duluth.

There's going to be a lot of "wait & see", and our prayers are with you all.

PM me if you need to talk, or think I could answer any questions you may have.

Tammy

#7 Vogey

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Posted 14 May 2008 - 05:16 PM

we have good news today, he is really responding to the finger pinch test on both hands, and his breathing has imporovedup from 19 to 24 and breathing 13 breathes a min on his own, don't know how long they have had him breathing on his own as we have only been here for about 45 min, we got an apt a couple blocks from the hospitol now, in the next day or so they are gonna take out his chest tube, and next week they will probly put the breathing tube in his neck, he is running a fever, and is gettin pnemonia, but they said everyone in icu gets that and not to worry

#8 Kev-O

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Posted 14 May 2008 - 05:49 PM

we have good news today, he is really responding to the finger pinch test on both hands, and his breathing has imporovedup from 19 to 24 and breathing 13 breathes a min on his own, don't know how long they have had him breathing on his own as we have only been here for about 45 min, we got an apt a couple blocks from the hospitol now, in the next day or so they are gonna take out his chest tube, and next week they will probly put the breathing tube in his neck, he is running a fever, and is gettin pnemonia, but they said everyone in icu gets that and not to worry

So you dont get caught flat footed have you all been looking around for rehab centers. The thing with rehab is you never want to cheap out on it. Try an get him in the best rehab center you can. Shepard Center in Atlanta, Ga is a great place to go thats were i went. Theres also really good rehab centers in Denver, CO an some were in NJ. I'm not 100% sure on the names so i will let someone else tell you about them an there names. I do know that those 3 are some of the top in America.

#9 Stacia

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Posted 14 May 2008 - 06:52 PM

Hi Jake,

I'm glad you have a little good news. My husband is a C-2 quad on a vent. He was injured 9 years ago, and I had not met him then, so I can't tell you what happened right after the accident. I do know he was in a coma for three months and he remembers nothing of what went on during that time. The doctors called his injury an internal decapatation. I didn't meet Jon until a year after he was injured. He has not gotten any return of function, and he can only be off the vent for a few minutes at a time. He has no movement below his neck. He was in a little Volkswagon and was hit head on by a Suburban, so he was really smashed up. He had a lot of thoratic and face injuries and broken legs and pelvis. By the time I met him he was pretty much healed up. He had moved out of the nursing home, into his own home, hired and managed his staff, and was working on returning back to work at the school I worked at.

If you ask him, being on the vent is not the worst thing, but he would give anything to have the use of even one arm and hand. He uses Eye-Gaze computer system which allows him to type with his eyes. He uses a voice box for communication and operates an environmental control system all with his eyes. He is employed as a textbook editor, paints with a brush in his mouth, he maintains all household accounts, his medical and insurance accounts, orders his own supplies. He also has friends all over the internet that he communicates with. We are expecting our first child later in the year.

If you have any questions for Jon or me, please PM me here. We are thinking and praying for all of you. One thing to be very watchful of is skin breakdown. This is a dangerous time for pressure sores to start up, and they can be awful.

I hope you can keep in touch and let us know how things are going. All the best.

Staci

#10 Vogey

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Posted 16 May 2008 - 03:38 PM

we had a exciting day yesterday, he was coughing and gaging, witch we where told b4 that they where worried about cause he hadn't done this yet, and he moved his shoulders, witch he has done b4 usually when they suction out his lungs, but he also did it when they where feeding him, so thats new, his breathing looks way better this morning, nice even breaths 17 a min on his own and looks deeper then b4, even with all this "good news" it seems to me that the doctor's are pushing us to pull the plug on him, and it makes me want to beat them silly, they have a meeting on monday witch they want to reevaluate, and tell us are options, and how if we where to take him off life support now it would be easyer, then if we waited, i don't know what is wrong with them it hasn't even been a week yet and things are improving, i don't know what to do, they have my moms head all screwed up, something improves our hopes soar... then they crash and burn, my mom is a wreck she don't want him to suffer, i keep tellin her it takes time, months, years and she says she knows and that she don't want to loose him as much as me and ben, i don't think there should be a doubt or question in her mind wether or not to keep him going, i don't know what to do

#11 doublelibra

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Posted 19 May 2008 - 02:43 AM

Hi-

I'm a C 6-7, and I had a very rocky start post-injury with 3 pneumonias in a row, and was on the vent for over 3 mos. They were thinking I might not ever get off of it. It was VERY difficult, but I did it. There are many of us who have quality lives in spite of difficulties. I cannot even imagine why the doctor would even talk about removing life support. I can come up with some bad reasons such as cost of his care, but that's only money. It's inconsequential when talking about the life of a relatively young man with a family. I raised my two younger children as a single mom after my accident! I apologize if I'm speaking out of turn, but I would think of getting another doctor. Certainly at least one second opinion would be in order. Your family is in my prayers.

Sincerely,

Doublelibra

#12 Vogey

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Posted 19 May 2008 - 03:07 AM

we did have more imporvent over the weekend, we have all been wondering if his shoulder movment was volentarty or not (sorry im a horrible speller) and we asked him to move them and he did, he has been more awake then ever, watching tv and everything, we'll see what the doc's tell us tommarrow

#13 Vogey

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Posted 19 May 2008 - 04:58 PM

well, we just got done with the meeting with the doctors, i feel it was more positive then negative, we did find out something new though, i was under the impression that his spinal cord was compressed and bruised from the fracture and everything, its not the case his head is dislocated from his spine and his spinal cord/brain stem where stretched, and thats where the injury is coming from, what is the difference healing wise from compression and stretching?

#14 ryan08/06/88

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Posted 19 May 2008 - 05:04 PM

Sorry to her about this...

One thing though...I would be concerned that he was being fed so soon after a Spinal Cord Injury...

Sounds a bit crazy to me...

#15 Captain Pike

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Posted 19 May 2008 - 05:28 PM

I have been reading along about the progress of your husband. I am a C-5 quad and I was in really rough shape the first few weeks. I kept dying if they rolled me a certain way. Turned out, I needed a pacemaker.

Right now I'm alone at home, working on various projects, I noticed, the sun just came out here, and I might just go outside a little bit since it's warmed up.

MRI images of my spinal column show no physical damage. The cord is tough but needs to have blood supply steady. I think some of my cordless cord was compressed by broken vertebrae. I am a typical C-5 and have no restoration after three years. BUT I HAVE DONE A WHOLE BUNCH OF STUFF!! This is way better than being dead. I can have an impact on someone's life every day (positive or negative).

Your man is alive for a reason. Many people perish in less violent accidents than he suffered. He checking in here, and with him, make sure he knows you're there. Even though, I couldn't talk at first, I loved having people come talk to me.

You have a tough road ahead but it can be very worthwhile._P.

#16 Aloha

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Posted 20 May 2008 - 10:27 PM

Hi Vogey--

It sounds like your family is doing a great job holding it together in such an agonizing situation. My son was injured Oct 07--a gunshot wound to C3 while out in the woods. He was not in as good a shape as your dad sounds, and the doctors had some serious talks with us about discontinuing his care/pulling the plug. He was, and still is, on a vent. We had been talking to him all the time, even when he seemed to be sleeping, and occasionally got a "look" that seemed emotionally appropriate. This happend often enough that we were sure he was 'in there' , even tho the docs were unconvinced. (His friends and paramedics did rescue breathing for about 90 minutes) We held our ground based on gut instinct , even when they held a meeting with us and 15 "professionals" to let us know how slim his chances were. He ended up being in ICU for 3 months, then inpatient rehab for 2 months, and is now in a care home. Next step is home home. He hasn't gained a lot of function, C3 complete, on the vent, still can't talk or swallow because of scar tissue covering his esophagus, but he's mentally all there and really happy to be alive. He has a huge impact on people and the ability to really contribute to his community. Nothing is how we/he expected life to look at 21, but the part of life that counts, who he is and how he responds to his challenges, his ability to relate to friends and family, is ALL THERE. I read in these pages about so many others who likewise do their best with what they've got, and am greatly inspired. It sounds like your dad has a lot of positives, and never underestimate the power you as a family have to influence his outlook. Wishing you all the best.

#17 Vogey

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Posted 21 May 2008 - 03:52 PM

we did have a little scare yesterday, his temp soared over 107 and they had to hook him up to a machine that basically runs cold water through his veins (he is the first person to ever use this machine here) and it brought him down to 100.4 (thats where they have it set) but its affecting his blood pressure and they had to get him back on the medication to bring it up, they are keepin him sedated again


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