American Veterans with Brain Injuries

[Cheryl]

I’m asked about Hyperbaric Oxygen Therapy (HBOT) quite often and I’ve somewhat avoided posting anything on this forum about it, but with all the new interest and some recent correspondence I’ve had with one particular clinic, it’s time to post what I know (and don’t know) about HBOT. I have interjected with some of my personal opinions, but take those for what they are worth, and once again; keep in mind I am not a medical professional and everything I’m providing is only for information purposes. AND, as always, I’m providing this in my very typical way………with a VERY LONG post!

Although this type of therapy has been effective for some people who have suffered brain injury, please be sure to do your homework and understand it is just one possible option and keep in mind many of the clinics that provide this therapy have NO experience with brain injury. I’m not suggesting one way or another; but I do think everyone needs to be VERY careful when trying ANY new therapy……..especially when most the documentation (advertising) is being provided by those who offer the therapy. Not a bad thing, since they are the ones who have the experience, but they also seem to be the main ones who solicit it as a miracle cure for TBI and PTSD.

With every possible alternative therapy you must also know the warnings, and in the case of HBOT the research is still not conclusive. There have been cases of this therapy being used and there were short periods of positive results, yet some are followed by a quick decline. In some cases seizures in people who never had them before, or an increased incidence in people who previously had seizures. There is also some question as to the metabolic change and Glucose levels w/ HBOT, for me this is particularly interesting as my son has been border line diabetic since his injury and he never was before, I also know of numerous other TBI survivors who have had similar changes without HBOT. As far as using this therapy for those who have suffered TBI caused by blast (IED), there is still much research that needs to be done. I had a long conversation with a nationally known and respected Military PM&R Doctor about it usefulness and possible adverse side effects, and I was informed that it absolutely has positive results for wounds, but he would say nothing about its use for TBI.

I do know a couple people that have had good results. One lives rather close to us and he, and some of his family, feel it helped a lot. I had met him in DC about a year after his injury, prior to his HBOT therapy, and although I could tell he was TBI, he was very cognitive, walking, talking (full conversation) and driving. He is now back, on the bench, as a judge in family court. I know of a young boy (6yo) here in Florida who had suffered a brain injury in a drowning accident, his results were rather remarkable. I also know of a few others, but I also know some people who spent allot of money to have no results and some who now have adverse conditions that they didn’t have prior to the therapy.

Some of the problems that brain injuries cause are similar to the adverse side effects from HBOT, so that is a real area of concern as no one wants to compound those problems. They do know that repetitive exposure to blasts compounds the chance for additional permanent injury to the brain, and in some research this is thought to be caused by air pockets within the brain expanding and damaging the newly networked areas. There are some facilities that are currently running a few studies to decide HBOT effectiveness and/or adverse effects for TBI, particularly Blast TBI. Some of the problems in getting conclusive research have been rather difficult as most blast TBI survivors can not undergo intense imaging scans, and it seems to be the most effective way to actually “see” changes.

Here are some of the noted side effects;
Otic Barotrauma (pain in the ears or sinuses): Some patients may experience pain in their ears or sinuses. If they are not able to equalize their ears or sinuses, the pressurization will be slowed or halted and suitable remedies will be applied.
Serous Otitis: Fluid in the ears sometimes accumulates as a result of breathing high concentrations of oxygen. It may occasionally feel like having a “pillow over the ear.” This seemingly disappears after hyperbaric treatment ceases and often can be eased with decongestants.
Oxygen Toxicity: The risk of oxygen toxicity is minimized by never exposing patients to greater pressure or longer times than are known to be safe for the body and its organs.
Visual Changes (blurring, worsening of near-sightedness [myopia], temporary improvement in far-sightedness [presbyopia]): Some patients may experience a change or decrease in vision. This is said to usually be temporary and in the majority of patients, vision returns to its pre-treatment level within six weeks of the cessation of therapy. NOTE: With all the new findings about visual problems in those with blast injury TBI, this is of real concern and some recent research of HBOT suggests that some may have increased incidence of the progression of cataracts.
Cerebral Air Embolism and Pneumothorax: Whenever there is a rapid change in ambient pressure, there is the possibility of rupture of the lungs with escape of air into the arteries or into the chest cavity outside the lungs. It is important for patients to breathe normally during decompression and not hold their breath.
Seizures: Patients are warned that HBOT may trigger seizures and may result in their practitioner increasing their anti-seizure medication if they insist on using HBOT. The risk of seizures occurring is currently estimated as one in 5000, yet again, there is no full research data.

Some additional interesting reading can be found here;
http://www.ihausa.org/newsletters/newsletter/pdf/2004_May.pdf
http://www.ncbi.nlm.nih.gov/pubmed/10685584

Dr Harch seems to be the one doctor traveling across the country promoting HBOT heavily. I think his personality is a little over barring and that worries me, but others feel he is the next best thing to sliced bread. On his web site he shows videos of Curt Allen as a miraculous recovery, it’s an impressive video, but I’m personally a little leery because of the timing of the therapy in regards to him emerging from coma. http://www.harchhyperbarics.com/home.htm

The costs are expensive; when I called numerous facilities, I was told everything from $200.00- $1700.00 per session. I understand there are some studies going on so those may be worth checking out or calling the clinics your self; I have been told some clinics may treat Veterans pro bono, but when I called facilities I could get no specifics as to which one would.

Some of the key factors, when it comes to costs and effectiveness, seem to be the dosages and number of treatments; 40 seems to be the effective starting range, but some people have as many as 80 or more, so you can see how expensive it can be. Also with all the conflicts about what dosages and how many treatments actually work, some people feel they were cheated by not getting proper doses.

I have not heard of the VA or any insurance company (including Tricare) paying for this treatment for brain injury specifically, so it is all private pay unless it’s a study or pro bono. (If anyone has different info I would really appreciate it if you would post it) I have recent quotes from Juliette at Dr Harch’s clinic; they are as follows as provided to me in an email from Juliette;
“The total cost of treatment with 2 psychometric testings, and 3 SPECT scans with prices whittled down as much as possible for the veterans (or active duty) is $19,800. HBOT with intake evaluation and two reassessments is $9,000. Most people do want to see a picture of their brain and see where the damage is (SPECT).”

She also went on to tell me;
“Time in New Orleans is approx 5 weeks. Two HBO treatments per day, five days a week. Hotel rooms available on base for $20 per night.”
On the phone she explained that they have had some transportation provided by a non profit organization; her phone number is (504)309-4948 if you want to learn more.

Lobbyist Dr Bill Duncan comprised the following list of facilities and has been a force to be reckoned with on Capital Hill when it comes to promoting this therapy. This list is supposed to be of a few of the GOOD guys:

Northstar Hyperbarics, Tucson AZ
Dr Carol Henricks (Neurologist)
specializes in TBI and spinal cord injuries
(520)229-2122

Dr Gabriel Jolly
Whitaker Wellnes Institute, Newport Beach CA
Hyperbaric Department (949)851-1550

San Diego Center for Hyperbaric Medicine
Craig Dorner(Navy Seal)CHT (619)504-7580

Chico Hyperbarics, Chico CA
Kurt JohnsonMD (530)899-9361

Dr Vilines HBO Clinic
Little Rock AR 722205
(501)349-8030

HBOT Medicine, Inc of Florida
Dr Zant (850)243-8229

South Florida Center for H.O.P.E.
Hope Fine, Deerfield Beach, FL
(954)571-9392

Perlmutter Health Center, Naples FL
(239)649-7400

HBOT Med Center of Honolulu
Helen McCracken, Pres
(808)851-7030

HBOT of New Mexico
Dr Ken Stoller
Santa Fe (505/820-6234

Valley Health HBOT
Dr Feingold, Mahopac NY
(845)278-6363

HBOT of Raleigh NC
Dr Jay Stevens
(919)846-9882

HBOT of Charlotte, NC
Dr Neal Speight
Center for Wellness
(704)847-2022

Oklahoma Neurohealth
Dr Reina
(580)248-1004

I have been told that the better of this "GOOD" group are: Henricks, & Zant, - these are the most experienced and know TBI. The other ones are good, better than the average HBO doctor out there. During my email correspondence Juilette also provided me with these added comments;
“Nobody treats TBI like Dr Harch. If the patient has a siezure disorder, DO NOT send him to anyone else but DR Harch. An inexperienced hyperbaric physician can make that kind of patient worse. Brain injury with siezure disorders are very delicate. If a veteran has funding we prefer you send him to us. Dr Harch has already treated many for free, we can not afford another pro bono. We have asked clinics who are interested in participating in the national trail (N-BIRR) to all treat a few veterans who do not meet criteria PRO BONO. Many agreed at first, some have changed their minds.”

I’m attaching an old list I have of some other facilities that are or were treating Veterans, the list is rather old, but felt it is worth providing.

I’m still cautiously optimistic; yet for me the jury is still out and I’m waiting to see what comes from more research and personal experiences. PLEASE share, with all of us, if you have any information about this therapy.

HUGS…………….Cheryl

Here are current studies going on;
http://clinicaltrials.gov/ct2/results?term=TBI+HBOT

Additional Reading
http://www.ihausa.org/newsletters/newsletter/pdf/2004_May.pdf
http://www.ncbi.nlm.nih.gov/pubmed/10685584

Additional Literature Attached, you must be a logged as a member to download documents

01HBOT.pdf

02HarchScoreCard090201.pdf

03CongressionalLetterBIRR080911.pdf

04HarchFlyerHBOTStudy08.pdf

05HBOTTBI_PTSD.pdf

[lesliekamm]

You had asked that if we knew different of the VA or Tricare covering HBOT, I know that there are patients at the VA hospital in Tampa, Florida (the polytrauma unit) that are undergoing this treatment at no cost to themselves.

[Cheryl]

Thanks for the info lesliekamm! It seems some of the poly traumas are using (or authorizing) HBO therapy; however, I’m not too sure they are using it specifically for TBI. I believe most are using it for other physical injuries even though the veteran may in fact have a TBI also.

I know a lot of people who have done this type of therapy, so I'd really like to hear what their experiences have been. It would be very helpful to get the good (or bad), info directly from those who have tried it.

[lesliekamm]

I will try to remember to mention this site to the patients' families the next time I see them. I can't say for sure if they are using HBO therapy for any of the other issues as we all know that TBI brings on quite a few of them.

[Adam Burke]

First of all I'd like to thank you all for developing this forum for people like myself.

Oxygen Hyperbaric Chambers.

We'll I'd like to add to this topic. I went down to Ray Cralled clinic in Delray beach, fl and was given pro bono 40 treatments. A lot of you may have heard mine and my buddy Robert Brown story. Both of us suffered from TBI from mortar blast. I stuttered when I spoke, couldn't hardly read, suffered from severe vertigo, headaches contantly, just about everything you can imagine that comes along with PTSD and TBI. Robert had the same issues.

There are a lot of critics out there that will tell you varying stories about whether this works or not. Lets be real! Every TBI specialist I've ever been too gave me loads of medication and had different theories about what was wrong. None of them seemed to be able to help me.

A lot of these hyperbaric places are trying to treat our symptoms with just the oxygen,but please note that this therapy has to be combined with myofacial and other PT work combined.

I was skeptical like everyone else, but when Ray Cralle/team and the Red cross combined help me afford to go down there I thought I had nothing to loose. "Best things I've ever done".

I took the before and after photos using the brain spect scan and you can tell an enormous difference. I also feel so much better and have been sleeping like I haven't done in years. My vertigo is now gone, and I'm also able to actually read and write comprehensive letters like this one. "something I haven't done in over 6 years".

we had a team of 10 doctors working on us. Talk about specialized attention. If Cheryl or anyone of you out there want to talk more about this please email me at adamandmichele@yahoo.com I'd love to tell you more about how this treatment has helped me out.

PS. I was in the Army for 9 years as a Infantry Soldier. I spent 16 months straight in IRaq were I was exposed to 3 mortar attacks. ONe which put me in the hospital for a few months.

Good luck to all of you.

KInd Regards,

Adam burke

[Cheryl]

Welcome to the forum Adam, and thank you very much for your input.