HYPERBARIC OXYGEN TREATMENT - END OF WEEK FOUR

So today ends my fourth week of HBO Therapy. Actually Monday since we missed one day due to a holiday. After today that will be roughly 27 or so hours of HBOT, actually therapy at treatment depth (not counting the time it takes to descend and ascend).

Which brings me to a question someone asked me last week that I wasn't able to get to. 

What exactly does the dive entail? What is it like? How do you prepare? 

On the website for the Hyperbaric Oxygen Clinic of Sacramento website it explains this well;

The treatment process may be modified for different types of chambers, either the monoplace or the multi-place chamber. In the monoplace chamber, one person at a time is treated, whereas in the multiplace chamber where more than one patient is treated at the same time, with an attendant present in the chamber.  (I am being treated in a monoplace chamber)

Only 100% cotton gown, which is supplied, is permitted in the chamber. 

(This varies by clinic. At all clinics what you wear needs to be 100% cotton only but in some you can bring your own cotton clothing. For instance, I wear shorts and a tank top usually. )

No cosmetics, perfumes, deodorants, hair preparations, wigs or jewelry are worn during the treatments. Patients are advised not to take carbonated drinks or alcohol for at least four hours prior to each treatment, and that they should give up smoking and tobacco products, as these interfere with the body's ability to transport oxygen. 

Once inside the chamber, the patient will be experience the changing pressure which is the same as that felt in an airplane when ascending or landing. Prior to the treatment, the patient is instructed in techniques of equalizing the ear/sinus pressure by yawning, swallowing, or attempting to blow through the nose while holding it shut. During the treatment the individual will be breathing 100% oxygen, dispersing oxygen into the blood plasma and delivering up to 15 times as much oxygen to tissues as would breathing room air. The treatment length is 60 - 90 minutes, depending the diagnosis and the physician's determination of treatment. The acrylic walls allow for the trained technicians to closely monitor the patient, as well as providing comfortable viewing out of the chamber. From inside the chamber the patient can always communicate with the attending technician via intercom, as well as watch TV, listen to music, or just take a nap.

Yesterday, after my session, Jason Bingham came by Dr Spiegel's clinic for a tour. many of you have been to Jason's RSD BLOGSPOT where he shares all sorts of articles on RSD. He got to see the many chambers available there. 

So what is my latest update?

I have had a pretty good week. My full body CRPS seems to be in a serious state of flux. Many of the areas where it once was, it has retreated from and it seems to be concentrating more in the four extremities. It is too soon to really go beyond this description but we will see how everything feels by around mid-week next week. It does appear to be headed for a significant change right now though, the biggest so far. 

I have also noted a fairly significant change in the frequency and length of the muscle spasms in my arms and legs. I have had, despite some of the best meds, these spasms for many years, especially at night. Most of you probably have as well. Spasms in the muscles and blood vessels are one of the FOUR MAIN SYMPTOMS OF CRPS. It wasn't anything I hadn't learned to deal with but it could be painful at times and it was always annoying and kept me up or woke me up at night. But these past three nights my muscles spasms have pretty much stopped! I was also able to cut back on the medication I take for them without noticing an increase at all!

As I mentioned before, I would be thrilled to go into remission from this treatment but I would be almost as happy to get 50% remission, especially if I was able to cut my medications significantly in the process.  How sick are all of you of dealing with the side effects of the medications? More and more I have been looking to natural remedies where possible to help.

Speaking of which, some of you have asked about vitamins and I thought I had spoken of some here but I will again briefly. 

During the HBOT it is recommended that you take vitamin E and some form of B. Many clinics administer vitamin B injections; some before the treatment and some after. These will help replenish the body and speed healing during treatment. It is also recommended that pain patients as a general rule now seriously look at a few other vitamins/supplements such as; Vitamin D, magnesium, and Fish Oil. Many pain patients are found to be deficient especially in vitamin D.  Another one to look at that helps promote a more restful and healing sleep is melatonin; the fast-acting chewable or sublingual version rather than the caplet or pill.

ok, I am off to my session. Tomorrow I am going to visit the Orlando CRPS group for their first meeting!

Then collapse and sleep most of the weekend :)

peace, Keith 

BLURRINESS IS AN ISSUE - VARIED DEPTH DIVES ANYONE?

SORRY NO POST YESTERDAY - short post today.

My eyes, which are the original site, have been very painful the last few days and I have been experiencing blurriness in both eyes so typing isn't too easy. So this will be short too. Bear with me though ok? 

I am not quitting, I will continue and come out the other side. 

I have a question for those of you who have been through this before. It is one I have heard from a number of you about but I need more info on.

It is about varying the depth of the dives for CRPS patients after the third to fourth week of HBOT. 

Some patients have stated that once they hit the wall, once their pain actually started to get much worse before it improved which usually occurred around the third to fourth week of HBOT, that at their clinic they changed the treatment protocol at that point; especially full body CRPS patients. 

That instead of continuing the deeper dives that they had been doing they switched for a short time to shallower dives, to go after the sympathetic system if I understand it correctly. That the body is switching back to the central nerves instead of the sympathetic nerves, the signals are trying to re-route themselves to be sent along the correct pathways.

What ends up happening is what was affected last will go away first, and the first part of your body affected by CRPS will go away last. If I understand all of this correctly. 

I see it in my minds eye as a gallon jug of pain slowly draining away. The stuff on the bottom of the jug was put there first and will be the last to go. 

With full body, or systemic, CRPS it is made even more difficult because the disease is so entrenched, the bad pain pathways are so deeply embedded.

So, if you have been through the varied dives, especially if your clinic has done this on a regular basis, and/or yo have information you can share with me that I can share with everyone here, please email it to me at keeth@mac.com 

Ok, sorry so short but my eyes and hands and feet are a little rough today folks.

Thanks for understanding,

Keith 

ALL IN ALL IT'S JUST ANOTHER BRICK IN THE WALL

All alone, or in two's,
The ones who really love you
Walk up and down outside the wall.
Some hand in hand
And some gathered together in bands.
The bleeding hearts and artists 
Make their stand.

And when they've given you their all
Some stagger and fall, after all it's not easy
Banging your heart against some mad bugger's wall.

from PINK FLOYD'S "The Wall" album, "Outside the Wall (Waters)"

Ahhhh, the WALL. That ubiquitous wall. That smothering wall. 

The wall is not unique to HBOT. CRPS patients, and other chronic pain patients, have often run into a wall when they have gone through treatments and/or started medications. 

Today was treatment day NUMBER 13.  

My pain is definitely down from Monday. On Monday and Tuesday walking was a very painful experience. Typing was very tough. Even sleeping didn't come easy. But Tuesday was a touch better and today, Wednesday, was even better. I am not quite yet where I was last Friday but it feels to me like I am starting to roll downhill; in a good way not in a Sisyphus way. As i mentioned at the beginning of the week or over the weekend maybe I had expected this to be a week of big changes. I am excited to see what next week brings! 

My friends and loved ones are all walking up and down outside the wall, saying their prayers for me, and hopefully I am sharing some good information with everyone along my journey. 

Someone wrote to me asking me "Does HBOT work for peripheral nerve injury?" 

Yes, it is one of the things they are finding they have very good results with treating. Here is a link to some information on it; PERIPHERAL NERVE INJURY AND HBOT. (scroll all the way to the bottom).

BTW, we have added some new articles to the RSDHope website that have an impact on anyone on Medicare. Check out the WHAT'S NEW section for them, at the top of the AMERICAN RSDHOPE website

Tomorrow I should be even better than today so I expect to be able to contribute longer blogs again, back to where I was the first two weeks. Thanks for bearing with me this week guys. I promise to pick things up!

Peace, Keith 

AS THE VALVE OPENS ...

Imagine waking up in the morning and feeling like there are giant flames shooting off of your feet, or like your legs are being crushed, or to see your hands curled up in a ball because of the crippling pain. Imagine recoiling in horror at the mere thought of your loved one hugging you, for fear of it causing you unimaginable pain.

Imagine not wanting to place your feet in shoes, your body in clothes, your feet on the very ground you walk on because you know that doing so will send ripples of pain throughout your body.

Now imagine knowing you will have to face these thoughts, these pains, every hour of every day, of every week, for possibly years to come. 

That is what living with CRPS (Complex Regional Pain Syndrome), what used to be called RSD, is like. 

So you can understand why patients suffering from this disease are willing to try just about anything, are so desperate for relief, are simply so worn out from fighting this disease, that any time someone offers them the slightest hope of relief, especially when they promise a cure or remission, they jump at the chance. 

It is also why we have to be extra-vigilant. We have to make sure that we do our due-diligence when it comes to researching these treatments and methods. We need to find as much information, talk to as many people as we can, exchange information with other patients who have been through it, find studies regarding the method, etc. before we jump on the bandwagon. 

Don't be afraid to ask questions; of your Doctor, of your friends, of your fellow patients, of your parents/loved ones. Remember, when it comes to health-care you are the customer, make sure those treating you remember that. They are providing you with a service and should not only be courteous and kind but also be willing to answer all of your questions without making you feel like you are imposing and keeping them from a much more important client/date.

All too often patients feel rushed by their physician and so they don't ask the questions they want to. Bring someone with you, as a portable memory since most of us with CRPS have a problem with short-term memory. Take notes and go in to the Drs office with written notes and questions. I always try to bring a written summary with me to the Drs office; how I have been doing since I saw him last, how I am doing now, major issues, and any refills of medications I need. It saves him a lot of time, which he appreciates, and this way I don't forget anything. Plus, I make a copy before I leave which I keep in my records so I can track it myself. 

We were talking about HBOT on RSDHope Teens; a listserv for Teens with RSD/CRPS that is sponsored by American RSDHope.  Sometimes there are questions that need a more in-depth answer or information that we have on the website that I will share. 

If you are a teen or just entering college, this is an amazing group of young people. They are very smart, well-versed on RSD/CRPS, and not afraid to challenge their Drs with information they find. They also are one of the most supportive groups on the internet. I am constantly impressed by them and their questions. We formed this group back in 1997 I believe, shortly after we opened the RSDHope website. Some of the original teens have gone on to become educators and therapists; some have gone on to get graduate degrees; and some come and help out the current teens when they can with their support and answers. 

We were talking on the teen list about HBOT. we were discussing a few specific cases and were talking about costs, length of treatments, length of dives (in minutes), how often you dive, 

Some of what we discussed, my answer to the questions, I thought I would answer here. 

- Some patients actually benefit from taking a few days or a week off from the HBO, then coming back to it. Maybe they are physically or mentally exhausted and need to recoup. Whatever the reason, they seem to improve oftentimes. Most of the time they do not recommend it though. They suggest you continue straight through your course of therapy; unless you develop problems with something like your ears, or another medical issue unrelated to HBOT such as a dental problem. 

- HBOT can often have a delayed result as well. In the beginning of your treatment you often don't know if it is helping. This is especially true with CRPS because the pain is so overwhelming; going from an "8" to a "7" or even a "6" is often hard to distinguish.  

Doctors like to use these 0 to 10 pain scales and maybe they work well for other diseases and pain syndromes but for CRPS they simply are insufficient. I always say it's like getting slapped in the face 1000 times a day. When you have it reduced to only 700 times a day how much do you really notice? Sure, your pain is reduced by 30%, which is a lot, but you are still getting slapped in the face 700 times a day and it hurts like you-know-what!

So if your HBO Therapy reduced your pain 30% the first week or two, you might not notice it too much, BUT, if you suddenly stopped, say for the weekend, or longer, you would definitely feel it and think that in fact, your pain had actually increased. This I think is where the rubber hits the road. This is where some patients decide that they can't or won't go through more HBOT and they quit, or decide, "I can do this, I can give it two more weeks (or whatever is left) because the reward, the pay-off is worth it!"

The same positive result can happen, only on a much larger scale, after you are done with the treatment. In some cases you may not feel the entire positive effects of the treatment for weeks after you finish because the body is continually building on its' success, on those new blood vessels, still clearing out the toxins in the body, still re-aligning those pain signals. It is a delayed reaction sometimes. After all, it took a long time for the CRPS to set in, it won't disappear overnight. It isn't a light-switch that Drs can just flip up or down, unfortunately. 

And this brings us to another important point we discussed. 

HBOT Doctors recommend that you don't undertake any other form of treatment at the same time as your HBO therapy. You should of course continue your normal medication, physical therapy, etc. 

But if you begin two treatments at the same time how will you know which one is working? It would be near impossible. Plus,  if you do the HBOT and spend $5,000 or $6,000 on HBOT, it might save you from spending $45,000+ on an implant, for just one example. And you wouldn't have to worry about the surgery. 

Someone asked if it would be ok to start the HBOT, then take a week off to do low-dose ketamine, then go back to the HBOT? Same principle applies. You wouldn't know which helped you. Plus, most of the top Drs who do the ketamine infusion wouldn't want you doing the HBOT on either side. Both procedures are exhausting and both require a lot of rest to help the body heal. 

Try one at a time and see how that works. Remember, your body is already weakened. Don't further weaken it by trying to do too much or nothing will work and you will make yourself worse. 

On another topic, although related, in April of 2006, on the Discovery Channel they did a program on HBOT and RSD on a young girl. There is a link you can go to, to watch the video; DISCOVERY CHANNEL RSD VIDEO

Lastly, I wanted to share the link for the July CRPS Newsletter for RSDHope. I don't think I had that here before. It is also in the WHAT'S NEW SECTION.   

Tomorrow I head back to the chamber for the beginning of my third week! I am looking forward to it. I am expecting it to be a week of big changes. This weekend I noticed less of a dramatic shift in pain/more pain than last weekend, which is a good sign I think. The CRPS pain in my extremities is still fairly significant but I definitely feel better when I am in the chamber and in the afternoon after leaving the chamber, especially this past week. Diving was much easier and I think I am getting more out of each session. I also slept last night from about 10:30 until almost 6:30 this morning with only a few breaks in between! That is huge for me!

Have a good Monday morning everyone!

Peace, Keith