Deb's HBOT for CRPS type II Diary

My Husband and I arrived Saturday (07Sep13) exhausted in Ontario after 8 hours travel. Weary, we checked into the hotel. We were both eager for a nap. For me, the many hours in airports and planes had my CRPS roaring. Both feet and my left shin were aglow bright red. The burning was excruciating, and I don't need to explain all the various pain sensations. I was at 9.9 on the pain scale. I was done for the day. I took my meds and settled in bed for the rest of the day/night.

Today, we met with Dr Underwood. He looked over my records and gave me a quick look over. He told us not to be too optimistic about my legs and feet since it has been so long since the onset of CRPS, but if the tissue is repairable the oxygen can help to accelerate healing. He explained the basics of the treatment is to help oxygen get into the smaller blood vessels that are difficult to reach. HBOT squeezes the oxygen much like the pressure in a hose. The more one squeezes the more water is pushed through the the hose. I continue to be optimistic even though being 'hosed' isn't a good thing. We were able to look at the HBOT units. The two person tank looks pretty small around. I am skeptical about getting two in there comfortably. It reminds me of when Darrell and I shared a pup tent many years ago. We were much younger and a whole lot slimmer. I think it is going to be more like squeezing two full size pumpkin pies into a tin can. Yeah.

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Pic is upside down.

Thank you so much for the update, and glad to see you're trying to keep a sense of humor after a night at, well I'll call it a level 10, but if you insist.. okay, 9.9 lol. I feel for you as I know travel can be tough for sure. I wish you all in the luck in the world Djhasty. I pray this works for you hon!

I look forward to your next update!

Good luck Deb, I have everything crossed for you This is going to be such an interesting thread, thanks so much.

Bram.

10Sep13 Pain levels are still running high after travel with overall ratings of 9 in am. 8 in midday and 8 in the evening. Today I got stuffed into a metal tank with a clear vinyl hood (for oxygen) stuck over my head. I looked a lot like a spacewoman. In my mind the tank could have been a rocket ship. I did take an Ativan for anxiety thinking I would sleep for the hour. I didn't sleep. Susan told me she plans to focus on my feet first, then my brain. Susan gave me an oxygen concentrator to use at night while we are here. It needs some parts to hook up the hoses.

I had considerable leg and hip pain at full depth in the tank. In addition to standard meds breakthrough medications were necessary. Other than the HBOT treatment I stayed in bed all day. There has been no improvement after this first treatment, but I really did not expect it this early. In the back of my mind was a silent hope that I would see some improvement, even if it was insignificant. I just wanted something to hold on to to carry me through the 40 treatments. There is a long way to go. I am feeling anxious about the treatments. HBOT is really expensive. It isn't covered by my insurance because it is considered off-label for CRPS/RSD. What if it doesn't work? Was HBOT the right choice to put all our money on when some other treatment may have worked better? And, if so, the money will be gone.

We decided to stay at the Comfort Suites in Ontario; they gave us a pretty good rate for staying the 6 weeks with them. We were able to move to a different larger accessible 2 bed room with a bigger coffee station with sink. This seems silly but with it being my home for 6 weeks the coffee area will act as my kitchen: a microwave, refrigerator, toaster, sink, extra cabinet and counter space, and a jar of peanut butter. The weather here is beautiful. Today's high was 90 degrees with a nice dry breeze. I received a fruit arrangement from my NPS lady friends. I've also received a few texts from the ladies. Their support means a lot to me.

11Sep13 86 degrees sunny and beautiful, but I felt bad this a.m. My pain level was at 7. My hip and leg ached. Felt like my left leg hip foot was being squeezed so tight that my bones were crumbling. I used the oxygen concentrator for the first time since leaving Nebraska. Today's movie choice was 'Lincoln,' but I missed most of it because I slept. I took pain anti-anxiety and antispasmodic meds before getting in the tank. I wore the oxygen bubble over my head again. Susan gave me a XL pair of men's 100 percent cotton pants to wear because I failed to wear my own. My sinuses started closing up later in the treatment so I couldn't breath through my nose; I was concerned about clearing my ears, but I had no problem at all. I spent 90 minutes in the tank. I felt better in the afternoon, but we couldn't tell if it was the tank plus oxygen or the meds that made a difference. My pain level at bedtime was at 7.

12Sep13 93 degrees today, sunny beautiful. Again, I felt horrible this morning with my pain at 9. I felt bad all over, but the pain was more pronounced in my left leg and hip. It was the deep bone crushing pain again. My appointment was at 1:00 p.m. I forgot to take the Ativan so i was worried about how anxious I would get. I was in the tank for 90 minutes. I wore the bubble head. Movie was ' Pilot.' Afterwards, I slept all afternoon. My pain was better in the afternoon down to a 7. I had trouble sleeping in the evening due to increased pain in the leg/hip to an 8.5. I am wondering if the HBOT has picked out a trouble spot for my condition. I see no improvement in the sores on my legs and arms. The number and ooziness continues. Susan would like to dive deeper but can't due to the baclofen pump. So she would like to keep me in longer tomorrow for as much as 2 hours. Better take my Ativan for sure.

Silly pic.

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Thanks so much for the update! I also enjoyed your picture!

I understand your concern about the treatments working, but perhaps it will take a few to get some kind of positive result, or at least that is what I am hoping for. I am hoping it will work for you as quickly as possible! I really don't know anything about it and I so appreciate your posts. Hang in there girl!

I know you're having a tough time of things Deb, both physically and emotionally, but you really have to try not to kick yourself about choosing to try this. Given your pain levels you had to try something, and HBOT does have some good evidence and testimonies. I think it was a good option to try. Yes it is off-lake for CRPS, and expensive, but so many new possible treatments are, and the recommended ones haven't been able to manage your symptoms. Given the scary nature of your symptoms, I totally understand your wish to try.

Anxiety and worry about whether this was the right thing to do will just add to your load of suffering. You've made the choice and you are getting everything you can out of it - we all have our fingers crossed that this makes a difference for you And, when you think about it, you could have spent the money on a few Chanel handbags and a handwoven Persian rug. Much less useful

I would think it would take the sores quite a while to show any difference. The skin there is damaged and slow to heal, and although increased oxygen will help, it's not going to be a quick thing, so I wouldn't worry that nothing has changed yet. I suspect that it takes all these separate treatments because your body has to kind of get used to the extra oxygen, and has to learn how to use it all over again.

I admire you so much. This is hard, painful, expensive and you are in a strange place. But you are persevering and you are giving all of us a really valuable record of your experience. I wish we had a diary like this for all treatments!

Keep at it girl, and give yourself a break. If you can find it amidst the pain, some cheerful optimism will help both you and your wonderful supportive husband. We're right behind you

Bram.

Do you know how deep in feet or ATA (atmosphere's) you are diving to?

I know the Medtronic pumps usually limit scuba diving to 33 ft because they say as pressure increases, pump flow decreases. Have you felt like your pump delivery has changed? I have talked to a few doctors who say Medtronic is being very safe with that depth and actually think you could dive to recreational limits in scuba but I never got a clarification on that.

I have a pump in me so that is why I put HBOT on hold until I learn more. I do know from other friends with severe CRPS that you must dive much deeper than the HBOT systems you see athletes using before UFC fights or NFL games. Those systems are usually 1.3 ATA max. My friends reported that they were treated in 2-3ATA and sometimes much deeper like 6 ATA. did they start you between 1.4-1.6 ATA?

I doubt you would feel different this early on because most of my friends did not feel a difference until after 20 dives and then some of them repeated 6 months later at 40 dives because they did not feel much different from the first 20 dives. They did feel better after the second set for some reason. none of them no why but are glad they tried a 2nd time.

I hope you get some relief from this and thanks for reporting to us about how you feel each day.

Mike

13Sep13 Wow. 93 degrees Sunny. Palms and mountains. Sigh. Another rough morning but I do feel a little better. Overall pain level this morning was at 7. Again it was my left leg, hip, and pelvis that hurt the most. No left eye pain, though my vision is still affected. Wondering why my work sheet asks how depressed I feel, but then turns around with the very next question asking, "How happy am I?" :0/ Today's movie was 'Mudd.' I couldn't really hear it, so it drug on for me. I was in the tank for 90 minutes. Plans for 120 minutes were kiboshed after about an hour when I was pulled out of the tank crying. I had to get out of there. Darrell thought I should try the treatment without the Ativan. I agreed. It didn't go so well. At about an hour the tank closed in and pain in my legs (about an 8 on the pain scale) became too much. Thus far Darrell has been in the HBOT tank with me ... just in case I flip my lid due to claustrophobia. He leaves next Saturday, so I need to learn to tackle the tank on my own. I was able to get the oxygen hood on by my self. No small feat because my hands are week. The rest is history. A dark chocolate Snickers cheered me up. I'll try again tomorrow.

14Sep13 98 degrees Sunny. This morning my pain level was at about a 7. I don't wear shoes because my feet are tortured in them. My feet swell, turn bright red, and burn like they are on fire. I am in a wheelchair. I don't need shoes. Today the parking lots were on fire too. I needed shoes. Today's movie was 'Flight of the Phoenix.' I didn't see it; I slept for the 90 minutes. Today's treatment went well except it was extremely hot. Well, 77 degrees. That is too hot when you are locked in a metal tank with a vinyl oxygen hood over your head. I was drenched in sweat. The rubber ring around my neck was soaked as were my clothes. Upon exiting my pain level was a 6. By time I got back to the hotel it was more like 6.5. I am hoping this is the first day of a long trend. I continue to have pain and weakness in my left arm and thumb. The pain in my thumb is similar to an electrical shock. Zzzzzzzip. I notice it most when I am sketching.

15Sep13 101! Damn it's HOT! Sunny. I felt much better this morning. My pain level was a 6. Six is the lowest number I've had in quite awhile. It felt good. Redness was still present in my left leg and both feet, but the color was even reduced from the hot red it usually is. I am starting to see some promise. I had 2 treatments today. I went for my first treatment at 9:00 am. Darrell still went in the tank with me. I took all my morning meds just before entering the tank. I did not take Ativan. The movie was the second half of 'Seabiscuit.' I read the book and saw the movie before. It is a good movie, but I napped. I was down at 33 feet for 90 minutes. My pain level upon leaving was 6.5. Still a good number. I returned to the clinic at 2:30 pm for my second treatment. This time I was on my own. Darrell was on standby just outside the tank. The movie was 'The Time Traveler's Wife.' Again I was down 2 atmospheres or 33 feet for 90 minutes. Clarification: 90 minutes total; 60 minutes at depth and 30 minutes going up and going down. I had no trouble getting the oxygen hood on by myself. Exiting the tank my pain level was at about 6. Feeling better for the first time in a long time, Darrell and I decided to head west to the beach and have dinner out. The pier at Hunnington Beach was nice. The temperature in the evening had cooled considerably from the 101 degrees that it was in afternoon. Darrell fixed my scooter (bad battery) a couple days ago, so I was able to use my wheels to stroll along the paved path to Sandy's. I was even able to put my feet in the sand. I couldn't feel it, but I did it. That was good for my psyche. We took our time and watched the sunset from the restaurant. About a quarter of the way home the pain hit. By the time I got back to the hotel my pain level was an 8. Occasional cramps continue in my chin, neck, right arm, back right side, stomach, and rib areas. These areas are not covered by the baclofen pump, which is installed at the lumbar area for severe spasticity in my legs and feet. I continue to have some cramps in my legs that can be severe at times. With the pump, Botox injections, and tizanidine their severity is reduced. I have the day off tomorrow. I need to get my pump filled. It must be filled every 2 weeks while being treated with HBOT. Last fill date was Wednesday August 28. Cutting it close.

It takes at a minimum 40 dives to start andreogenesis. My treatment plan has been extended to 50 dives with the possibility that I may need 60. I am up to 7 dives now. I have a long way to go. Andreogenesis is when the body forms the smallest capillaries in areas that need oxygen and repair, such as my legs and feet. HBOT also increases oxygen at the cellular level, helping to create or increase production of Glia cells in the brain. Glia are known as the glue of the nervous system. Glia hold neurons in place, supply nutrients and oxygen to neurons, insulate neurons and destroy pathogens.

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