nightmare

[waters3]

Hi all,

I wrote about a week ago about my son's sci and the horrible diagnosis I received from a neurologist regarding his unable to form words and not talk (mouth) and maybe not talking or eating again; she explained atrophy?. She was wrong about the atrophy but our second opinion from another neurologist is just as bad I think. They did a catscan and noticed a "change" since the first one they did when he was admitted to the hospital. It is an area in the front of the brain. They can't tell me why it was not on the first catscan or if it is causing the problems with his communication. They used the word "sheering?" and they "just don't know"!! Has anybody heard of such a thing. One explaination was that the trauma of the accident could not have been detected right at the beginning and now they can see it. Trying to deal with the sci alone was enough now this. He is alert and can have a conversation with nodding yes or no and understands everything we say to him; he just can't communicate with his mouth. I'm sick. His attending physician has been out for a week and will be back tomorrow. So I have not been able to get anybody to actually sit down and explain in detail what the F is going on. sorry. He has been in the hospital now for almost 3 mos. and it is starting to feel like he is in a nursing home. There is nobody on the floor that has his same type of injury all older people and it is starting to feel like I am in the twilight zone. I spend 2 nights and most of the days at the hospital and then 1 night at home. It is such a pity that we have to be there almost 24/7 because he cannot talk, move or anything and he is on a vent. I hear beeps from other rooms for sometimes 15 minutes before a nurse will respond. No way am I leaving my son there like that! Any info appreciated.

cindy

[Wise Young]

Cindy, what you describe does sound like a nightmare. Bearing in mind that what I or anybody says on this site should not substitute for good communication and interaction with your son's doctors and nurses, perhaps the following will help:

1. Tissue damage often does not show on an initial CT-scan but may show up later. This is particularly true of CT scans because it uses x-rays and primarily detect changes in calcification (increased calcium) or water content in the brain tissues. The appearance of changed signal intensity in parts of the brain weeks or even months after injury can happen and does not mean that he is suffering additional damage. I wonder why they did not do an MRI. Is this because of his ventilator and they are not equipped to do an MRI on a patients on a ventilator at this hospital?

2. When they used the word "shearing" they are referring to the possibility that the impact of your son's head resulted in movement of parts of the brain at different speeds. The result is that parts of the brain may be damaged by this mechanism. The brain has two kinds of tissues: gray matter which contains neurons and white matter which contains the nerve fibers or axons. Because these two parts of the brain have slightly different densities, they may have moved at different rates when the head was hit. Shearing may occur between the gray and white matter interface. However, all this would be very speculative.

3. Based on your description of his alertness and understanding of what you say, this means that his brain is intact, including the upper brainstem where the auditory/vestibular nerve or 8th nerve (for hearing) enters the brainstem. There are 12 cranial nerves. Your description suggests that the first 8 are intact. It is often hard to evaluate the lower cranial nerves (9, 10, 11, and 12th) in somebody who is on a ventilator. However, it can be done. You can do it:
• Cranial nerve 9 or glossopharyngeal nerve. This nerve supplies the muscles and taste sensation of the back 1/3 of the tongue, throat, and larynx. It also supplies the skin of his external ear. If he has a gag reflex (i.e. he gags when the back of this throat is touched), taste or touch sensation in the back of his tongue, or can feel you pinching his ear, this means that the nerve is probably intact.
• Cranial nerve 10 or vagus nerve. This nerve supplies the muscles of the pharynx and larynx, as well as many of the internal organs, including the heart. It also provides the sensation from the back of the ear and the ear opening. This nerve is hard to test because most of what it does is not obvious from the outside. But, if he can feel a Q-tip in his ear hole, it would suggest that part of the vagus nerve is intact. Furthermore, if the glossopharyngeal and the accessary nerves are intact, it is likely that the vagus is okay. Isolated damage of the vagus is rare.
• Cranial nerve 11 or accessory nerve. This nerve supplies the muscles of the layrnx and pharynx, as well as the muscles of the trapezius and sternocleidomastoid. The trapezius and sternocleidomastoid muscles are easiest to test. The trapezius muscle is the triangular muscle between the neck and the shoulder (the one that most people massage). The sternocleidomastoid is the muscle that rotates the head from side to side. This muscle goes the angle of the jaw to clavicle. Your son should be able turn his head. If he can move both of these muscles, it suggests that his accessory nerve is okay.
• Cranial nerve 12 or hypoglossal muscle. This nerve supplies three of the four muscles of the tongue. If your son can stick out his tongue or move it from side to side, this means that it is intact.

4. Some atrophy of the jaw muscle is to be expected after a break of the jaw but you should get a copy of the operative report and understand what was done, as well as the neurologist's report. You should look particularly for the possibility that the facial nerve (cranial nerve 7) was damaged in any way. But, if your son can open and shut his eyelids, smile or grimace with his facial muscles, it means that it is intact. If it is not, it would be good to find out why not.

5. His spinal cord injury. According to your description, he had a C4-6 contusion. While a C4-6 injury may affect his breathing since the nerves that go to the diaphragm comes out of the spinal roots for C3 and C4, he should be able to get off the respirator. This is particularly true if he was breathing on his own for a month after the injury. If he had pneumonia, he may have needed to go on the respirator but one of your highest priority should be to wean him off the respirator as soon as possible. It will make a huge difference to his quality of life if he is able to be off the respirator. If the doctors and nurses are reluctant to do this, you need to push for it. Does he have any function (sensory or motor) below his shoulder? Since he can understand you and can nod his head, can ask him to try to move his shoulder (C4), his biceps (C5), extend his wrist (C6), straighten his elbow or triceps (C7), wrist flexion (C7), fingers (C8/T1). Can he feel you rubbing his chest above the nipples (T4), above the belly button (T10), and legs (L1-L5). Does he know when he is getting rectal stimulation during a rectal/bowel procedure? If the answer to the last is yes, this means that he is an incomplete spinal cord injury. Even if he does not, he may still recover some function. It may take many months, however.

I hope that this helps. Please ask more questions and I will try to answer them as best as I can.

Wise.

[This message was edited by Wise Young on 06-23-03 at 07:09 AM.]

[waters3]

Yes this helps so much. I will print this out and test some things on my own. I'll keep you posted.

[Wise Young]

You are welcome. I changed a few little things in the post below because I wrote it pretty quickly off the top of my head and I realized that my description of the neurological examination of the cranial nerve functions was not clear in all places.

I just want to comment that you should try to distinguish between injury to the brainstem and injury to the cranial nerves after they leave the brainstem. Your son may have damaged the cranial nerves rather than the brainstem. Sometimes, it is not possible to tell the difference on a neurological examination alone and it would help to do some neurophysiological tests.

If he has not had an MRI, he should get one. Now, this can be quite an undertaking for somebody who is on a ventilator. Because no ferrous metal can be placed in an MRI, they need a special ventilator tubes, etc. that is specially designed to be used in an MRI. Perhaps this can be done after your son has been weaned off the ventilator.

Wise.

[waters3]

Hi,

I told you I would keep you posted and I will. They did do an MRI and another catscan yesterday, but I have not seen the neurologist yet. I did the things your wrote about. #7 - he can smile, grimage wrinkle up his nose, open and shut his eyelids, #9 - he does gag when I put a tongue depressor in the back of his mouth and he gags when he tries to cough but can't. He can feel me pinch both his ears. #10 - he can feel a q-tip in both ear holes when moved around. #11 - I took the pillow out from under his head and he could move his head to the right but kinda stiff to the left. But he has been in bed for 3 months. #12 - He can stick his tongue out but not like you and me. It doesn't really come out far and the movement from side to side is slow and seems laborous. Speech therapy is working on it. I hope I can let you know more after I talk with the neurologist.

I wrote down some notes about his sci 4,5,6 that I observed last night but I left them at home. I;ll write what I found out later. thanks

[waters3]

On another note the nightmare is continuing. This is what I found out today.

This hospital is not capable of caring for somebody with SCI. We are looking for a rehab facility that will help Anthony and to no avail. The social worker here is trying to advocate for Anthony but she is not getting anywhere. We received a list of 8 facilities from the Brain and Spinal Cord Injury Program (BSCIP) here in Florida that are up to their standards; but no one will take a patient who is on a vent (they are trying to wean him off now). Anthony is only 20 years old; he can and will get stronger! I am afraid he will fall through the cracks and not get any rehab. They either respond with a straight we do not take vent patients or they are afraid that his progress is too slow and then what would they do with him when funding ran out! One place did say they would take him but this hospital has to send them a letter stating that if his progress is too slow and he plateaus that the hospital will take him back! This seems not only outrageous, but illegal to me. Are there any agencies out there that can help us? I am afraid my son is not going to get any rehab and he is a good candidate. He does have some controlled movement below the site of injury. I am so scared that if he doesn't get any help they will say he has to go into a nursing home. I can't believe people in his situation are eliminated like this and that their lives are over. We are capable and want so much to have him come home after rehab and have contacted the BSCIP that does help with some things after he is home and we maybe can hire some part-time private help. We can travel anywhere in the United States if needed. Please do not hesitate to call us at (813) 909-8899 or e-mail us if you can help or know somebody that can.

For those of you not familiar our son (Anthony) was in a car accident on March 28, 2003 and has SCI to C4,5,6. We live in Tampa, FL. He has been in the hospital (St. Joseph's) now for 3 months and it has been a slow road.

Thank you,
Cindy Waters (mom)

[Wise Young]

Cindy,

You may need to consider a rehab center outside of Florida. You should call my office (732-445-2061) to talk to Patricia Morton concerning places for ventilator-dependent quads. If they can't get him off the respirator, Anthony needs to go to a place that has experience weaning people off the respirator or can initiate phrenic nerve pacing.

What you describe is good news concerning his neurological status. Your examination suggests that his cranial nerves 7, 8, 9, and 10 are intact... it is hard to tell whether 11 has been partially affected on the left. The 12th nerve, however, appears to be intact. You should ask the neurologist to confirm.

Wise.

[Wise Young]

You may want to check out the rehabilitation center in Detroit where they are doing a clinical trial using theophylline to help wean ventilator-dependent quads. Unfortunately, it is a VA facility but they might be able to work with your current center or whatever center Anthony goes to. Wise.

[SCI-Nurse]

Wise, are you sure it is Detroit? There is no SCI Center at the VA in Detroit...not even an outpatient clinic.

I would try to get him to Shephard Center in Atlanta, GA. They have an excellent vent program. His insurance needs to get him to a program that will meet his needs, even if out of the state. You may want to check out some of the information that is available in this free book:

http://www.josephromanolaw.com/english/book.html

You can also call the office of the attorney who wrote this book for some advice in getting your insurance to comply with policy requirements. He has helped a lot of people:

http://www.josephromanolaw.com/english/index.html

(KLD)

[Wise Young]

KLD, I was referring to the Detroit VA where Harry Goshgarian is starting a clinical trial on theophylline for ventilator-dependent quads. See Topic in the Clinical Trial Forum (http://carecure.org/forum/showthread.php?t=39745). I too did not realize that they have a spinal cord injury center there but the trial is apparently being held there.

Yes, I agree about Shepard. The other places that have substantial experience with ventilator-dependent patients are Kessler and Craig. I think that the University of Florida at Gainesville also has experience.

Wise.

[SCI-Nurse]

According to this the study is at Wayne State University Hospital, not at the Detroit VA. It would NOT be acceptable in the VA system for a study like this to be done outside of a designated SCI center.

(KLD)

[waters3]

Hi,

Well I spoke with the neurologist and he explained that there is injury to the left side of the brain and it is injury to brain tissue not a specific nerve? I asked how much damage and he explained it is not a matter of how big the damage is but that there is damage. He does not know if this is what is causing Anthony not being able to form words anymore. He said it is just going to take time. Of course this is not good enough for me. Everything seems to be ok except for the non communicative state. I do have a friend that was in a very bad car accident with alot of brain damage and her mother was told that she was going to be a vegetable for the rest of her life. She was in a coma and all, she had to learn how to talk, eat, walk all over again. But she did and now leads a normal life. I am hoping if somebody that had as bad an injury as she did and came out of it, Anthony can do the same. Of course he is no where near what happened to her.

As for the c4,5,6 He does have movement of both shoulders, right bicep good, can bring right up from bicep and move down with shoulder, left bicep has muscle although is very weak, cannot move his writs or fingers, can feel rubbing above nipples, not above belly button, can feel when he has a bowel movement and when they put a suppository in. Another question, I keep being told that the muscles will never come back. Why then do I hear about regaining function. Like all of a sudden someone is able to move a finger or recover the use of a diaphram or can move legs?

About his ventilator issue. They say Anthony can only use his diaphram to breath. He did not need the ventilator for the first 3 weeks in the hospital and then one day he had a hard time and he has been on it ever since. He did have respiratory problems, fluid, a little collapsing etc., but that is all cleared up now. I keep asking the pulmonary dr. on how long is he going to be on CPAP and what his plans are on weaning but he gets irritated that I keep trying to push him to be more aggressive. He actually told me "I wish you would stop trying to get me to hurry on this; like I told you before I don't think Anthony will every be off the vent the most I am trying for is maybe off all day and on at night"! Any suggestions. I did learn of a vent users group today that I am going to visit later. Almost everyone familiar with someone with sci, caregivers and people with SCI have stated that c4,5,6 should be able to get weaned. But not his doctor here. On another note he did have an injury to the front of his throat and they had to do surgery right at the spot of where the trach is inserted. He now has what they call a fistula below the trach tube that is rather large and flem and stuff can actually come out of it. I have asked his attending dr. about it and the ent looked at it but they did not think they should do anything. Ever heard of such a thing? Sorry for so many questions, but . . .

[kate]

W3, I don't know the answers to a lot of your questions, but I do know this--

If your son can feel that suppository, his spinal cord injury is by definition incomplete.

Three months post is FAR too soon for any doctor, nurse, PT, to know for certain what will happen to your son's muscles. There are lots of people out there-and my husband is one of them--who kept getting motor return back long after that first little window.

That's what I know. What I think is that you're on the right track as far as being concerned first and foremost about his ability to breathe on his own. Sounds like the doctors are in over their heads. Just keep telling yourself they mean well and don't let your frustration take over. We're pulling for you both.

[KLD]

Where is your son? I would personally be looking into changing physicians or even hospitals to try to get him to a center than has a more aggressive approach including the vent weaning and management of his brain injury.

[waters3]

Hi everybody,

I have some tentative good news finally. I have been writing about no facility for Anthony because of the vent. Earlier this month Jackson Memorial in Miami said that they would accept him on 2 conditions: 1) that a letter stating that the hospital where is at now will take him back; and 2) pressure wounds have to be stage II.

Well today the hospital reversed its decision to not supply us with the letter! But Anthony does have bad pressure sores. He is on Medicaid and has unlimited days until his 21st bday on September 22. After that it is 45 days. So he has to about the beginning of November for coverage. The question now is how long could it possibly take for the wounds to heal to adequacy to sit in a wheelchair? Now everyday that passes is a day removed for rehab coverage. I feel the hospital should pay for everyday he misses of rehab. He did not come here with them. Also does anybody have any experiences with the rehab facility at Jackson Memorial in Miami. I know it is close to the research they do at the University of Miami but I have not heard much on the rehab. Scared but hopeful.

Cindy, tampa fl
mom to Anthony C4,5,6
inury 3/28/03
still in hospital

[SCI-Nurse]

I have never heard of a Medicaid limit on inpatient hospitalization for someone who is acutely ill. Are you sure this is accurate? It does not occur in my state. He will need at least 6-8 weeks of inpatient rehab, once he is off the vent and the pressure ulcers are healed. I would again refer you to the Joseph
Romano book below and to his office.

What is being done for his pressure ulcers now? This is the first you have mentioned them. Pressure ulcers that are deep may require surgery to close, and are unlikely to heal on their own without this. What type of bed is he on? Where are the ulcers? Is he completely off them all of the time? What treatment is being used?

There have been successful malpractice suits over acquired pressure ulcers in hospitals, but they are not easy cases to win. If you are thinking of pursuing this, please see an attorney ASAP. The hospital will not admit it made an error by paying for any of this care (their attorney would advise against this).

I only know of Jackson Memorial's reputation as a trauma center, but they certainly have more SCI experience than where you are now. Talk with them about possibly moving him to their acute unit prior to starting rehab.

(KLD)

[TD]

Hi, waters3 (Cindy?) http://sci.rutgers.edu/forum/images/smilies/smile.gif

I have been following your saga and wanted to let you know that there is hope for your son's breathing problem. I was vent-dependent for a couple of weeks after my accident (a high speed head-on without seatbelts and now live with SCI and brain damage) but learned to breath using just my diaphram. I was weaned from the ventilator in about three days once I realized I needed to concentrate on using my diaphram to breath. It is not an easy thing to do. Luckily I once sang and used some of those techniques to help wean me off. Let your son know that there are several members here who can relate to what he is going through and we are all pulling for him.

"And so it begins."

[waters3]

Well,

Finally after some discussion from a family friend who used to be a trauma dr. for over 30 years in Chicago and some research on the internet I think we have a explanation for Anthony's not able to communicate. It sounds exactly like Expressive Aphasia. This on top of everything else is a nightmare. The only thing we are confused about is why he was able to communicate by mouthing words like normal and everything to us for the first 4 weeks in the hospital. And we were told his catscan and mri did not show any brain damage. It seems as though it happened right after a plug in his traech and then his jaws were wired shut for 5 weeks. He never was normal after that. Are there any forums out there that might be able to help us with this now; want to talk about progress, recovery and therapy, etc. The neurologist just explained it to us as brain damage to the left side of the brain did not indicate how much, said it didn't matter how large the damage was that damage was damage. and doesn't know if this is what is causing his non-communicative state.

Cindy Waters
mom to anthony
c4,5,6 injury 3/28/03

[Wise Young]

water3, I think that your son will get better from this. It will take time and speech therapy. The first order of business should be to get him off the respirator so that he can speak using his own breath. The longer he stays on the respirator, the more difficult it will be for him to get off. This is because the diaphragm gets weak when the respirator is breathing for him. He needs to be weaned and as soon as possible.

Once he is off the respirator, there are a number of approaches to try get around and reverse the aphasia. He will need to start making sounds and exercise his vocal cords. You can try to get him to hum and sing along; the brain areas that mediate singing are outside of Broca's area (the part of the brain that mediates talking). He will need a lot of speech therapy to relearn how to vocalize.

In general, it is important to set goals that are achievable and then reset them to higher levels as he recovers. This prevents frustration and the positive feedback from meeting goals gives motivation to work on recovering the function.

Miami has much experience with acute care and they have a very good physical therapy department. They also have a good biofeedback program.

Wise.

[waters3]

Anthony is not fully dependent on the ventilator. He is on CPAP for 10 to 12 hours a day. I was told this was basically breathing on his own? At night they put him on a rate of 8. He mostly has great days and maybe in between a not so good day. We are hopeful that when he gets stronger and pressure sores healed and his nutrition adjusted properly; they say he is low on protein and are tring to find out why. Is CPAP breathing on his own?

[SCI-Nurse]

No CPAP is not the same as breathing on his own. People with SCI do much better weaning from the ventilator by being off completely (no vent, no CPAP) for multiple short periods of time during the day, then gradually lengthening each of these periods. This builds strength in the respirtory muscles gradually, which CPAP does not.

I suspect his protein is low because he has large draining pressure ulcers and has not been able to keep up with his body's demand for protein which is increased by acute injury, stress, and trying to heal. Instead of trying to find the cause, the treatment at this time should be to super-supplement his nutrition, and perhaps consider a short course (6-8 weeks) of an anabolic steroid. The safest one to use for this purpose is Oxandralone. Because it helps to build muscle mass, it has been helpful in many people with SCI during vent weaning. It also has been studied extensively as a helpful drug to increase the speed of pressure ulcer healing.

(KLD)

(KLD)

[marmalady]

HI, Cindy,

Sorry I haven't posted sooner, but we've been in the throes of moving and I've been off the boards for a while.

My son is a C4-5 with a brain injury, also; his TBI affects mainly his short term memory. He was also on a vent for about 3 months post his accident, and then weaned successfully while at Kessler Rehab. The docs in the acute care hospital told us there was a 75% chance he'd be on the vent forever - so another reason never to believe what they say - they just don't know - no one does.

Also, like your son, my son's initial CAT scans and MRIs were normal; then, 3 months post, he had a horrid seizure, was transferred to an acute care hospital from rehab, and when he 'awoke' from all the meds, he had no short term memory at all; couldn't remember the accident, or that he was paralyzed. We'd tell him what happened, then five minutes later he'd ask the same question.

Recovery from a TBI is a long process, and when combined with SCI, it can take even longer. I'd recommend an eval by a neuropsychologist, who specializes in cognitive rehabilitation, as well as the speech therapy mentioned before.

Here are a couple of TBI websites I've found helpful:

www.neuroskills.com (http://www.neuroskills.com)

www.tbiguide.com (http://www.tbiguide.com)

There are links to TBI boards and chat rooms, and a download of an excellent publication about TBI recovery.

Hope this helps; feel free to email me if you like, or have any questions. Dealing with the double whammy of SCI and TBI is at times totally overwhelming. Jackie

_____________
Tough times don't last - tough people do.

Thank you Marmalady for the reply and information on brain injury. Just an update on some things. The injury is on the left side of his brain. It seems that the only thing it is affecting is his unability to form words with his mouth. Everything else is functioning. He can read, spell, understand everything we say and knows what to say but can't. Just in the last week we have seen progress though. His swallowing has improved greatly. Speech Therapy conducted a blue dye test yesterday and he swallows on command now and easily, until they deflated the cuff on his trach. Then the fluid they gave him did not go down correctly. They said they are going to just keep on excersising his tongue, swallowing muscles, etc. I have read up on Expressive Aphasia and Apraxia. It does not seem to be Expressive Aphasia in regards to that he can understand what we say, can read, spell, etc. but more toward Apraxia. Has anyone out there had similar experiences or know anyone who has? or can shed some more light on the situation. If this is the wrong forum to ask are there any forums on this subject that we can talk to people like this one? Also we were told that Anthony could go to Jackson Memorial for rehab since no other facility in Florida would accept him for rehab while he is on the ventilator. Unfortunately he has acquired such bad pressure sores he cannot. We are now trying to get him into the spinal unit at Jackson memorial at least. This will give him great benefits as where he is now is not experienced enough for SCI patients. Does anyone know of any physician at Jackson Memorial spinal unit that we might be able to contact to explain our situation so that his doctor can help us with this transfer. Thanks to everyone.

Cindy Waters
Mom to Anthony c4,5,6
still in hospital, tampa, fl

[SCI-Nurse]

These are the people I know there:

Kathleen Klerk, PT
Assistant Chief, Spinal Cord Injury and Neurotrauma Rehab Units
Jackson Memorial Hospital
Miami, Florida

Marca L. Sipski, MD
Project Director, South Florida Spinal Cord Injury Model System
Medical Director, Rehabilitation
Jackson Memorial Hospital
Associate Professor
Department of Neurological Surgery
University of Miami School of Medicine
Miami, Florida

(KLD)