Brain and spinal cord injury

[Wise Young]

I am replying to a topic from the Missourian on the Acute spinal cord injury experiences topic.

Missourian, I am so sorry to hear about your son. I have a 20 year old son and my heart grieves for you. Based on what you have described in your post, your son has had a mild brain injury and a thoracic (T4) spinal cord injury with loss of motor and sensory function.

Let me discuss the brain injury first. Brain injury is common with spinal cord injury. About 25% of people who have cervical spinal cord injury also had some brain injury that left them unconscious for a period of time, retrograde amnesia (inability to remember a period of time before the injury), memory loss (loss of memory), and memory deficits (difficulty remembering new things). The last is the most difficult to overcome and tends to be interfere with recovery of other brain functions. However, the fact that he says that he remembers you and remembers the fact that he was trying to contact you for some months before the injury suggests that he had only mild brain injury and is likely to recover mostly or even completely from the injury.

ASIA A means that he does not have any rectal/sphincter sensation or contraction. What you should try to find out is what his current sensory level is. For example, a T4 level is just at the nipple line. If you are poking a pin, he should be able to feel it above the nipples but he should not be able to feel it below. If you go to http://carecure.rutgers.edu/spinewir...alLevels.html, you will find a map of the dermatomes and where to test. This will give you an idea of how much sensations he has recovered. Most people with thoracic spinal cord injuries, even so-called "complete" injuries get back sensation down to their belly button (T10), often a year or more after injury.

You can determine what his motor level is asking him to lift his legs or hip flexors (L2), straighten his knee or knee extensors (L3), flex his ankles or ankle dorsiflexors (L4), move his big toe or long toe extensors (L5), or point his feet or ankle plantar flexors (S1). If he has any of these muscles, that means that he has recovered quite a lot. If he has sensation in the rectum/sphincter, this means that he is at least an ASIA B. If any of the leg muscles can move voluntarily, he is an ASIA C. Finally, if he can feel his bladder when it is full, this suggests that he has some deep sensation from as far down as S2-3. All these would be good signs.

He is still early after his injury. While most of the recovery occurs during the six months, recovery can continue extend for a year or longer. I have known some people get back function as late as 10 years after injury.

There are many therapies that are likely to be able to regenerate the spinal cord. I am anticipating that most of these therapies will go into clinical trial in the coming year or two. I think that the chances are high that one or more generative therapies will have been shown to be effective in the coming 4-5 years.

Please note that sometime head injury may mask the presence of function below the injury level. In my experience, people with combined brain and spinal cord injury often appear paradoxically to recover more function than those with just spinal cord injury. This may be because as the brain recovers from the injury, it may unmask some preserved spinal cord function.

At the present, it is critical that his other problems are taken care of. He is still early after spinal cord injury and he already has made several major complications. For example, he probably developed the decubitus because the hospital was not turning him as often as he needed to. In any case, the decubiti may take many months to heal and will keep him in bed. He already has had a UTI and every effort must be made to prevent this. He needs to be in an active rehabitation program as well.

The University of Washington in Seattle (Harborview) has a really good spinal cord rehabilitation center and I recommend them highly. You should try to get him there if you can. If there are any questions that you need answers for, please don't hesitate to ask.

Wise.

[bruce]

Wise,

I agree that Missourian's son needs to get to either Harborview or the University of Washington for rehab. If he had a good experience at Harborview and feels comfortable there, they will do a fine job.

I was an inpatient at Harborview and am outpatient at both facilities. I now see both Dr. Barry Goldstein and Dr. Lawrence Robinson at Harborview, but I go to physical therapy at the UW.

I want to clear up a misconception you may have. The UW Medical Center and Harborview are two separate facilities. It's confusing because while Harborview is owned and operated by King County (the greater Seattle-area), many of the doctors *are* from the University of Washington. In fact, Dr. Robinson is Chair of the UW's Department of Rehabilitation Medicine, which is based at Harborview. Harborview is also the Level One trauma center for the Northwest and Alaska, plus it serves as the hospital of last resort for the indigent of King County. Quite a bizarre combination, to say the least.

My experience with PT at Harborview was ok when I was an inpatient (2-1/2 months) .. my only complaint in hindsight is that they should have had me in the standing frame. But as an outpatient, they were not focused on my returning to walking. I was told as an inpatient that both hospitals were the same. However when frustrated with the outpatient PT I was getting at Harborview, I went to the UW, it was like NIGHT and DAY. They saw that I was going to walk again and started me on the rigorous path that has led to my current ability to walk functionally with crutches.

To his credit, when I was four months post, Dr. Goldstein (who is, IMHO, an *outstanding* rehab physician) told me I'd walk again if I worked my butt off. It was hard to work my butt off towards walking when I couldn't get PT appointments, and when I did, they had me work on transfers and wheelies. That was my PT experience at Harborview.

So to summarize, Harborview saved my life and the UW got me on my feet.

Thanks for the opportunity to get on my little soap box. I'm stepping off now [img]/forum/images/smilies/wink.gif[/img]

- Bruce

[Missourian]

Dr. Wise, I wanted to respond earlier to your comments, but didn't have the emotional strength. I've been dealing with tears and an unbearable amount of grief. My son's injuries have turned the table on me. I've spent most of my profession helping others, and here I was, opening myself up to vulnerability by exposing the heartache of my son's injuries. I was also somewhat angry, thinking I could handle this alone. I've been helping others for years; it wasn't fair that I was now the one in need of support and help from others. I printed your comments and continually read it over and over again each day. Again, thank you for taking the time to respond, helping me understand a little more about my son's brain injury. I've noticed my son constantly experiences memory deficits when we talk on the phone. He can't remember things we've said to each other or when I last called. He gets angry when we don't talk, and I'll tell him that it was just last night when we spoke, and then he calms down. On the other, he will get angry because he thinks I call too much. Sometimes, it's a no-win situation and although I'm very calm with him on the phone, I get hurt and confused with his anger. Could his anger be from his brain injuries? Or is it from his SCI injuries and inability to accept his new limitations?

Projectorguy? What's the difference between inpatient and outpatient? Could one not assume, since he was transferred to a sub acute Nursing Home that he is now considered an outpatient? How do find who his attending physician was at the time he was treated at Harborview? Will they release this information on the phone to me? All I have are transcription report notes that my son gave me. It was signed by Jyoti Sharma, MD Resident, and also David Yu, MD Attending Rehabilitation Medicine. He did go back to Harborview on Friday, they told him he would need the brace another two weeks. I'm not even sure if he can relay accurately to me if he will indeed go back to Harborview. I've got a signed release of information and I've had a difficult time reaching his Social Worker at the Nursing home so she can verify if he will return to Harborview. For goodness sake, I feel I have no more knowledge than what's written on his transcription sheet and have a hard time looking up medical terminology on the internet. In most cases, it will explain some parts of the equation but then takes off in another area that doesn't concern the injuries my son has. Shouldn't my son have some sort of care plan in place at the Nursing Home from the Harborview Hospital? If so, nobody has told me about it.
My parents think my son Chad should stay in Washington because they have the best disability laws in place. Am I doing the right thing by urging him to come home to Missouri? Resources here seem far and few between for SCI patients. Projectorguy, do you have contact phone numbers for Harborview and University of Washington? I was able to speak personally to a Jeanne Carbonetti who knew my son but she wasn't even sure if he was returning to Harborview. I just don't know what my next course of action should be and feel helpless in trying to guide my son. Any input/suggestions would be greatly appreciated. Again, thank you both for your time. I'll never be able to tell you in words how much I appreciate your kindness.

[betheny]

Missourrian-
I'm no expert at brain injuries, but have some life experience that I can share. They often get mean (not a medical term, sorry) with those they can rely on. My mother, after a serious stroke 20 yrs. ago, still sometimes is with me. My stepbrother got hit by a cab and severely concussed, and was awful to his mother but sweet to me. I believe they take out their anger on those they count on to not abandon them. Beth


You'd better get a big gun 'cause I'm not dead yet."
---The Bad Examples

[kate]

Missourian, I'm married to projectorguy, and I just wanted to let you know he's working on finding some phone numbers for you. In the meantime, it sounds as if Chad is back at Harborview. Is that right?

From reading all your posts, I get this picture: he was injured in a car accident while AWOL; you didn't know he was hurt until several weeks had passed; he had surgery and acute care at Harborview Medical Center in Seattle, then was moved to a nursing facility (where?) for care while he got healthy enough to do rehab. He now has a pressure sore that will keep him from being able to do rehab until it's healed. You can't be sure you're getting accurate information from him due to a mild TBI, and don't know who to contact at the nursing facility or the hospital for a better read on things. Is that all accurate?

In addition, there is the problem of where to do rehab . . . as Bruce said, they told us (me) very clearly that Harborview and the University of Washington were one and the same, in terms of equipment and approach to rehabilitation. This turned out to be completely false. Harborview's physical therapy was geared completely toward adapting to life in a wheelchair; at the UW-once they saw that he had a little muscle function-it was geared completely toward getting out of the wheelchair.

These hospitals do share staff, but they're in different parts of the city, and I have to say, they don't do a great job of sharing paperwork.

My question to you is: how can we help? We live near Harborview and know a lot of the staff there pretty well. Bruce was in the hospital just over two years ago, and we've kept in touch since then. As I said, he's pulling together his best contacts at both Harborview and the UW. I'd like to know if you want us to visit your son. We'd be glad to do that, of course. We're going away for a couple of weeks soon, so let us know. You're going to be okay.

Kate

[bruce]

Hi Missourian,

I will add a bit to what Kate wrote. Yes, when Chad left Harborview they should have prepared a care plan for him. From what you describe, he is now an outpatient. A thought: call Harborview's main number (206-731-3000) and ask for the "4 West Hospital Nursing Station". Then tell the person who answers (usually the charge nurse) who you are, about your son, then ask to speak with either Dr. Sharma or Dr. Yu. Ask to page them if they are not immediately available. If that doesn't work, leave a message and try again a little later .. be persistent, Harborview is kind of a crazy-busy place. Either of the doctors should be able to speak to the information you already have as well as talk about the treatment plan. Because of the pressure sore and the CTLSO, it may be appropriate for him to be in a skilled nursing facility. I do remember some paras who left for a while because they needed a bit of time before starting rehab. But I also saw some doing rehab in their CTLSOs. Since my injury was cervical, I had a collar (the dreaded Miami J), which wasn't nearly as restrictive, so I'm no expert on what is done for paras.

Harborview also would have had a social worker assigned to his case. I doubt the nursing station would give you that information over the phone, but they might. Also, if your son has given you a release of information at Harborview, you could get his chart. They will give you a number of pages free of charge, then start charging something like $.79 a page. From the phone book, the medical record release number is 206-731-3102. I can't remember if that is the number we used.

If it is the case that Chad needs more time in a skilled nursing facility, it sounds like Tacoma Rehab is not the place. In the other thread, Angela recommended Mt St Vincent in Seattle, but I can't find a listing in the Seattle phone book. I expect you've already contacted her about that anyway.

Regarding the UW, I am going to be there tomorrow (Tuesday) to see my physical therapist. The PT gym is next to the rehab floor. I will stop in at the nursing station and see what I can find out for you. I have heard very good things about their inpatient rehab.

Should you choose to move Chad to Missouri, there is Washington University in St Louis. They have an excellent reputation and if you could get him in there I think he would get good care. Dr. John McDonald, who works with Christopher Reeve, is based there as well. Moving him to a hospital that is close to home, but that doesn't have a lot of SCI experience would probably be a mistake. Both Harborview and the UW here have a lot of experience.

As Kate says, we are going on a vacation on Friday this week. We would be happy to visit Chad before then, if that's appropriate. Also, if you have trouble reaching anyone at Harborview, I'd be able to stop by there and snoop around on Thursday, as I have another engagement that day that is nearby.

I will post more tomorrow when I learn more. Meanwhile, hang in there, take a deep breath, and know that you're doing your best in a very difficult situation.

- Bruce

[Missourian]

Bethany, thank you so much for sharing your life experiences with brain injury. I probably shouldn't take things so personally, and will try to remain more compassionate with regards to his anger.
Kate and Bruce, I wish to thank you both for sharing with me, a wealth of information. Yes Kate, you are very perceptive with regards to piecing together much of my story line. I'm sure, during the different phases of my grieving process; I was out of order while typing my thoughts. [img]/forum/images/smilies/frown.gif[/img] Currently, Chad is still at Tacoma Rehab and Specialty. He went to Harborview on August 1st to see a "wound" specialist who scrapped the dead skin off his pressure sores. They decided as well, during this visit, to see how he was doing in his CTLSO. It was during this visit on Friday (August 1st) that they told Chad he would need to be wearing the CTLSO another two weeks. Initially, he had a scheduled appointment concerning his CTLSO on August 7th, but because of his pressure sores, and the appointment with the specialist, they combined both visits on Friday. He has returned to Tacoma Rehab Center (I don't know why they call this place Rehab, it's nothing more than a glorified Nursing Home).
I spoke with my son last night, and he truly hates the Nursing home he is currently residing in. He stated that Harborview (I don't know with whom he personally spoke with) told him to "hang in there" for a couple more weeks. Chad stated he would return to Harborview in a couple weeks for intense therapy. I don't know what is meant by "intense"? And he has said for the last few weeks that he would be returning to Harborview, that's why I needed contact numbers, to verify his return to Harborview.
I spoke with Angela on the phone yesterday, who is an absolute sweetheart. [img]/forum/images/smilies/smile.gif[/img] She gave me encouragement and a better perspective to my son's future. She asked me a very good question. "Has your son had an opportunity to meet other SCI patients"? The answer to that question was "no". She too offered to visit my son, it was at that point when I started crying...oh lordy, I need to invest in stock with Kleenex Corporation. Maybe we could all pitch in for that? [img]/forum/images/smilies/wink.gif[/img] I discussed this with my son last night. His response literally took my breath away. He said: "Mom, is she going to be my friend?" Sometimes, I wish I could reach out through the phone, touch his face, hug him, look deeply into his hazel eyes and tell him how special everyone on this site is. I was a bit bewildered by his question, because my 10-year-old son talks in this manner, and Chad is 21 years old. I guess I wasn't prepared for this type of question. I realize now, how fragile my son is, where as in the past, he was always the "joker" and not interested in serious conversation.
I have called the numbers you have given me. THANK YOU, THANK YOU, THANK YOU!!! I'm in the process of getting a power of attorney, I've made an appointment with JAG, I live near Fort Leonard Wood, so obviously, I'm waiting for my appointment date. I have a signed release of information for the Nursing Home only at this time. Once the POA is done, I can then fax it to Harborview and they will answer all my questions. Oh La La, the sun is starting to shine again for me! [img]/forum/images/smilies/tongue.gif[/img]
Bruce and Kate, I would be very honored if you had the time to visit my son. I believe that part of his recovery should incorporate an opportunity to meet individuals who have experienced (in various degrees) spinal cord injuries. I want to include a picture of my son on this site, but have failed to understand how to do this. Any tips because I browsed the section where it explains this, e-mailed a picture, but nothing has happened yet? [img]/forum/images/smilies/eek.gif[/img]
I know that you all are strangers to me, but I honestly feel connected to the words you type, the empathy, and encouragement you have all shown to my son and me. I will treasure your kindness forever. If you need further information regarding my son and where he is located, please e-mail me and I'll gladly respond. He just recently borrowed a powered wheel chair from a resident who had an extra one (How does someone get "extra" equipment, I priced those things, they are NOT CHEAP! ) and sometimes locating him in the Nursing Home is like keeping up with "Mario Andretti".
[img]/forum/images/smilies/biggrin.gif[/img]

[Wise Young]

Projectorguy, thanks for the info. It clarified some questions for me. I have visited Harborview and know that many of the people who work there also are at the University of Washington.

Missourian, yes, emotional deficits are frequently associated with brain injury and are often neglected or inadequately assessed. Emotional deficits can be in the form of depression and mood swings, as the brain struggles to reattain its balance. Combined with cognitive and memory deficits, emotional problems often interfere with recovery. The good news is that recovery is the rule and not the exception after brain injury. It takes time and patience.

Wise.

[betheny]

I gotta say it, just this once. Kate and Bruce, you guys are awesome. And Dr. Young is my hero. Beth


You'd better get a big gun 'cause I'm not dead yet."
---The Bad Examples

[SWEETIEheart]

I dont come to this board that often, but this subject jumped out at me so I wanted to read what Dr.Young had to say.

I'm 3 years post injury and I had what was diagnosed a "mild brain injury" with my spinal cord injury. This traumatic brain injury was because I had a contusion and skull fracture. During my time in the trauma unit they kept me highly sedated so no one new how servere my brain injury would be until I woke up. The area where my brain was affected was in the personality region. My parents were told I may not act the same as I used to but only when I awoke would they know.
Fortunely I'm still the same girl. There has been No residual effects found. I went back to college shortly after my rehab ended. I was tested cognitively with academics and all that before I returned. This was so the rehab could send documents of where I stood and what I may need if I showed signs of problems. Well, no troubles yet. I only need disablity services for wheelchair accomadations. I'm still strong academically (when I stay focused..lol I tend to not like some classes or get tired of them and I dont put forth as much effort as I should at times).

I'm a T6 para, not too far from the T4 standings your son has. As far as him telling you what he remembers, it sounds pretty realistic. The only thing I cant remember is my accident and the time I spent sedated. I remember a lot of what I did the day of my accident, but I dont remember the wreck itself.

[SWEETIEheart]

I meant to add, but I dont know how to go back and edit my post, to what Bethany said.
I was aggressive when my sedatives would start to wear down. I'd pull out my tubes. They would have to strap my wrists to the bed and give me more sedatives.
By the way I was kept sedated b/c I had a blood clot on the brain, so they wouldnt do my spinal fusion until that went down(which was 2-3 days later).

I am in a support group with TBI and/or SCI people. I also still talk to some I went to rehab with (one being a TBI). It seems, this is how the explain it, they get frustrated and angry b/c they have difficulty communicated their emotions out or what they're trying to say out. They know what they are trying to say in their head but they cant project that out. Other certain things can set them off at times also.
One parent described her sons "outbursts" at one meeting. The son is 23-27(cant remember, I just know he is around my age). He just seemed to go off one day out of the blue over nothing. He cursed his mom and continued to tell her how he hated her, how her husband hates her, how her parents hate her, and so on. It of course wasnt true, but that was his aggressive verbal behavior. Her reason for expressing her son's behavior to the group was "how should she handle it?" He has a brain injury and all but he needs to know what's inappropriate and what isnt...but would he comprehend during his moment of "rage"?

[Wise Young]

Sweetieheart,

Thank you so much for your posts. As you know, the most difficult problems with brain injury are not the motor and sensory deficits but the cognitive, expressive, memory, and emotional deficits. These occur even with mild brain injury. Most of these problems can and will resolve over time but it may take years.

Anger and aggressive behavior is a very common manifestation and outcome of brain injury. Taking care of outbursts and managing aggressive behavior without resorting to too much pharmacological sedation is a major challenge in the care of people with brain injuries. The quality of care of people with brain injuries vary across the board from very poor to very good.

Wise.