Re: HBO long after injury - predicting recovery

February 22, 2007

Hi, Thank you both for writing me back so quickly. To Margarete, I hope

that your son's outcome is so much greater and I read a lot about people who

get better. Thanks so much for your compassion. You made me cry as I

remember when it was only about a year that this happened to Mike and I was

visiting

nursing homes and there was a older couple who just put their son in a

nursing home after 10 years as they couldn't care for him anymore, and I

thought

to myself, how sad that is, but that will never happen to Mike. He's going

to get better and come home soon, because the nursing home will help him. How

naive I was. But you still have hope and your son probably isn't as bad

as my son. Yes the brain injury was quite severe. Dr. Markley, I think

you realize how bad Mike is. And I guess you are right and you explain it

really good and you are right, his body is so bad, so I wish I had let him go

when he got sick instead of always fighting to keep him alive, but a lot of

that I think is him. He has been taken very good care of, but he has this

will, I could write a book on the things he has lived through in the past 10

years, you just wouldn't believe. But the doctors and aides always say how

well

he is cared for, which I guess really scares me because I know how quickly

that can change in just a few days if he is not taken care of. And I have

tried to make the best arrangements I can but who knows how it will work out if

something happens to me, which worries me a lot. But I have been thinking

about the future a lot lately and how to get Mike to somewhere where it would

be easier for the successor guardian to care for him because I live so far

out in the country. It is just so hard trying to find a house that would

accommodate him like this one, but that is something I have been trying to

decide

so thanks for your insight. So I have been told Mike doesn't feel pain,

but it seems you think as I do that he does feel pain. They told me to

stop exercising him at all a couple of years ago as they thought his bones

could

break. I do have a massage therapist come and give him massages. I did

get him a spec scan when he was suppose to go to PA for hyperbaric and was

told he was a good candidate but like I said it didn't happen at the time.

That was 10 years ago. But if you think it would be beneficial I could call

that doctor and see about getting the scan, but what would be the difference

then if his body will never heal, and he got recovery in the brain, would he

suffer more and feel more pain? You know I have told him to not stay around

for me if he wanted to go to Heaven to go, but he hasn't. I just don't

understand why he has to suffer like this. Let me know what you think about

the spec, and any other thoughts when you get a chance, and Margaritte I wish

you all the best and keep up with the progress of your son. Take Care, Carole

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February 22, 2007

Hi, Thank you both for writing me back so quickly.

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February 22, 2007

Bless you, Carole, for all you've been through. My personal belief is that

there is a special place in Heaven for caregivers like you who work so hard in

return for so little recognition.

As for whether hyperbaric would be right for your son, there is no easy answer

to that question.

When we have families come in with loved ones in similar circumstances, I always

ask them what they want to accomplish first. In a severely neurologically

damaged patient - particularly one with a broad, diffuse neurological injury

like the one I suspect your son suffered - complete recovery just isn't

realistic. Even if his brain could be nearly completely recovered, the damage

to his body caused by years of immobility would be difficult to reverse.

Please know that I am one of the most optimistic clinicians I know, and I have

seen some incredibly dramatic results again and again. But HBOT is simply

oxygen, and oxygen alone won't resolve all the complex degenerative processes

your son is probably experiencing. For example, the pain caused in a patient

with severely contracted limbs by trying to move them.

If your goal is to help Mike to recover to the point where he no longer needs

you to be his caregiver - and based only on your description of the situation -

I have never seen that much recovery in a similar patient. Even if it was

possible, you would probably be looking at hundreds of hours of HBOT at 100% O2,

with daily treatments, followed by literally thousands of hours of physical,

cognitive and speech therapies. And even then, there will be parts of what was

Mike which are unlikely to ever recover.

When families come to me with similar questions and requests for treatment, I

always ask them to first get a SPECT scan at the nearby hospital, and have it

sent to Dr. Uszler (www.drspectscan.com) in California. The scan

itself is usually covered by your health insurance. Dr. Uszler's evaluation

and report has always given us the most accurate assessment and useful " roadmap "

of what to do next to help the patient. If there is recoverable brain and if

hyperbaric will help, Dr. Uszler will tell us, and can usually suggest best

protocols to use. But if there is not, he also has always been honest and

direct about what he sees. Again and Again, I have found his detailed reports

to be perhaps the most useful - and honest - tools we have to predict potential

recovery.

Asking for a SPECT scan evaluation first is one of the important ways we use to

protect the families from wasting money or hope, and protect the patient from

the unnecessary rigors of transport.

Think about a SPECT scan, Carole, and talk with Dr. Uszler (310-264-0080).

Also, take care of yourself. I have a son as well, and would probably be doing

exactly as you are in similar circumstances. But don't forget that if you get

too tired or sick, you may be unable to care for either yourself or your son.

Try to (1) Find resources for respite. (2) Make sure you have a realistic plan

in place in case you should become suddenly unable to care for Mike, and (3)

make sure someone whom you trust knows what that plan is.

I am sorry for all you've been through, Carole, and will keep both you and Mike

in my prayers.

With kindest regards

ellen Markley

Hyperbaric Medicine Center, Honolulu

Re: [ ] HBO long after initial injury

Hi Dr. Markley, Thanks for the information from you and Tom. I have talked

to you before on here and wish that I had a doctor like you close to me.

If you remember Mike was injured when he was 20, strangled, loss oxygen for as

long as 12 minutes, least 9 minutes, (it was on a tape). A lot has

happened since then, and I finally was able to get him some hyperbaric treaments

in

Wash Dc. in a portable chamber which I believe made a small difference in

his skin and he smiled more then he ever had before. But the trip from VA to

DC, (I had moved from NJ where I almost got him hyperbaric in PA and had all

arrangements to take him to Pa, when the hospital that had agreed to let him

stay there backed out and decided he couldn't. (I think because he was

still on medicaid then but isn't any more). But anyway the trip from VA to DC

got impossible for me. The traffic took so long it would take us 5 6 hours to

get home maybe 65 miles away. Mike would be exhausted. Mike has never

spoken, never eaten, I made them take a foley out in the beginning which much

critsicm to try a texas catherer and he has used one ever since, so I was

right about that. I feel he has always still been in there, but was given up

on too soon by the medical profession. I have probably said this before on

here. I even tried the hyperbaric chamber to the home that made his ears

bleed and the technician wanted to put him right back in and you guys told me

not to put him back in and I didn't and his eardrum was red but luckily it

didn't break.

I took him to a specialist in Richmond Virginia, recently suppose to be the

best, but he told me there was no hope for Mike and told me he didn't think

very well of me keeping him alive. He wanted me to examine what I have done

keeping him in such good health. He told his primary doctor here there was

no purpose for any hyperbaric treatments and his md here was open to the idea

until this doctor told him that. I think I have told you he became so

contacted while in the hospital rehabilitation center and nursing home I have

never

been able to undo that. His feet are so bad I have been told they

probably will have to get them cut off, and one doctor wanted to do it already,

although there are no breakouts, looks like it might happen one day, keep his

skin very moist with emu oil. I thought I was helping him, and I know I did

getting him out of the nursing home. It was so pitiful. My 20 year old son

was, well if you ever saw the movie where the girl boxer bite her tongue as

she didn't want to live, well Mike never spoke but he kept biting his tongue

and having to get it stitched back up. But He has never done that in the 9

years he has been home.

He had older people rip the G Tube out of him, an aide told me he was

showered last with cold water because he couldn't yell that it was so cold

because

they would run out of hot water. They took all the pictures off the walls

that I would put up for him. I would look at other nursing homes but they

all look like they do the same thing. And people who have worked there tell

me they are all alike. MIke doesn't belong in a place like that. That is

why this is just breaking my heart now. I see him day after day, holding

on, and nothing really changes for him. It kills me to see him like this. He

is 30 now. I know no doctor thought he would live this long.

I have thought about buying a chamber for the home and have talked to you

about it. But after looking a lot more, it seems some doctors don't think it

will work for him, I am concerned about using it right and giving him the

right amount, have no idea how to use it. No one seems to want to take

responsibility for that. I have been promised prescriptions but never get them,

one

doctor on here said he could get me one but I would have to send the money

to him, which as guardian of him I couldn't spend his money like that because

it is considered risky and he wasn't an actual medical doctor so that was a

problem, although he was very nice and did call me and seemed very

informative. Then there was concerns about the electric and how much my house

could

handle, how his ears would be, and I guess what I want to know is before I

spend any more money on something that won't work out, Is there anyone that

would

allow Mike to stay somewhere while he got treatments as in Washington he

would maybe get one every other week, and a medical doctor that could manage

him, and see if hyperbaric would help him and would he need a deep chamber or a

portable chamber because of his ears, or was it just the operator of the deep

chamber that came to my house that made his ears bleed. I mean if he could

stay where your facility was and I could fly him on an ambulance plane and

you thought it would be more worth it then to spend the money on a chamber, is

there a way I could do that, or do you know anyone, as it seems its just

outpatient clinics that I know and all are too far because of the traffic on 95.

I know I am beginning to give up and I don't want to but it seems like it

has been a long hard road and boy was I hope ful for years. But how do I not

give up when I just am completely worn out, luckily I have someone I hired

helping me, as I just can't do it on my own anymore. But Speaking for

, as I am suppose to do I wish someone would step up, like they did when

they

starved that girl, but the x wouldn't allow any help, but here wants

help and I just can't seem to get it. I once tried to take him to Florida

too, but couldn't find anywhere to keep him. I don't know do you know the

doctor there. They didn't seem to understand the condition of when I

talked to the people there, saying he could stay at a hotel but how do I bring

supplies for that long, then they gave me a nursing home name who I called

and they told me they thought it would be a waste of my time, as they have had

other patients stay there like and nothing happened and the chances

of getting sick was very likely from germs in the nursing home.

Am I just being unrealistic I just don't believe when you see all these

doctors on TV step up and help people, and was on the news when it first

happened, I have written every one possible on the web, even the doctor who

found that vegetative people may know what is going on by telling them to image

where they are, why no one has ever said this kid has held on these years,

lets try something. No its just wait keep him as comfortable as he can until

he dies. I guess if that is what I have to do, I have to do it some how.

I really don't know what to do. Should I just get the chamber at home and

chance it, or hope that someday someone can say yes I can take him in and try

to help him, and I will be the doctor, you won't have to worry if you are

doing it right, or a doctor could talk me through it if I could ever get a

presecription to buy one. Well I am in such a mood I probably sound pathetic but

I

am feeling so hopeless right now. Let me know if you have any ideas when

you have the time as reading this long email. sorry Carole

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February 23, 2007

At our facility we have given HBOT to a young woman who had a severe TBI 13

years ago and was left with multiple deficits. She continues to surprise

everyone involved with her care as she continues to make progress. She was

cortically blind, she now points to things across a field and in the sky. Her

gait was hemiparetic, her strength has steadily improved. Her communication is

improving so she now can have simple conversations. That is only the experience

of one person, hope that that helps.

Dr. Carol Henricks,

Neurologist

Northstar Hyperbaric