Alaska Mike, thanks for your reply. Medtronic recommended 2 atmospheres or 33 feet. The Doctor and technician both wanted to go to 2.5 atmospheres in order to treat the CRPS better, but Medtronic recommended against it. We are doing 40 dives, well ... that was just today increased to 50 with a possibility of 60. We are supposed to get the pump filled every 2 weeks while in HBOT treatment.

Brilliant post Deb, thank you :)

I am so glad you are starting to see a little improvement already - it bodes well for the full plan. I also think its a good sign that you have been able to doze/sleep during some sessions in the tank! It must be daunting to consider all the rest of the upcoming treatments, but just take it one day at a time and enjoy every little positive experience you have. I think it (and you) are amazing.

Everything crossed for you here still. Keep up the good work :winky: - at the end you'll be able to write a paper on 'Films NOT to see while undergoing HBOT" lol :D

Bram.

Way to go Djhasty!! Whoo hoo! You're doing it!! I admire your will to keep forging ahead! This is no easy thing for you, and I’m so glad that it sounds like you have a loving spouse who is trying to make sure his gal’s okay before he has to leave. You’re doing SO GREAT! Go you!! :hug:


I am glad that it’s showing some promise and that you even got your toes in the sand. Good for you! I hate that the pain spiked afterwards, but perhaps good for you nonetheless.


I will have to go back and re-read. I don’t know why but I thought you traveled to Canada for this treatment, but palm trees sounds more like CA or FL? Hum…


Continue to get the rest you need. The body does a lot of healing while we sleep.


I know you must be nervous about being on your own soon, but you’ve got this! My mother when she was alive drilled into my head my entire life, you can do anything you set your mind to. I think there’s truth in that. I’ll be looking for your next post. Keep up the great work! My thoughts and prayers are with you!

I have not heard of anyone getting their pump refilled every 2weeks while diving HBOT. Do you mind me asking why they have you do that? Did you have to fight with insurance to do that?

Mike

The pump has to be filled to max to protect it at the lower depths. Both my husband and the HBOT treatment center contacted Medtronic, with the same response of refill every 2 weeks. It is also noted in my user guide. BTW There is an 8, 000 ft limit on the upper atmosphere too. There is not an issue when in a pressurized cabin (most commercial flights travel at 20,000-30,000 feet). I did have an issue when my daughter lived in the Colorado mountains (still does) above 8,000 and 10,000 ft. We worked it out. I stayed in her cabin at 8,7??. and drove into Telluride for visits.

Darrell is paying out of pocket for my treatments at this point. The HBOT treatments are off-label (not approved by the FDA). So, the pump refills every two weeks are also out of pocket. The cost is outrageous. Well, we will see .... I do believe my sores are starting to heal. They look better. I also feel better with my average pain level running 6.5 to 7. I did have one bad 9 day in there (still updating my diary), but the HBOT brought it right back down to a 7 the next day.

Is your pump a synchromed 2 infusion pump by Medtronic? What size reservoir?
Thanks for answering my questions and I really hope this works for you.

I had a feeling you were doing this out of pocket.
Mike

So pleased for you Deb! :p It'll be fantastic if your sores improve and hopefully heal, and the pain lessening must be a relief for your whole body. Todd bad day is bound to happen, it's the overall change that we like! I'm just glad you could afford to do this, makes you feel for the folk who just can't and so will never know if it could help them or not.... Try not to think about the cost too much - at the end, you can decide whether you would have done it if you had known the outcome - and if it has brought you significant pain relief and helped your sores, I suspect you wouldn't change a thing ;)

Bram.

16Sep13 off-day. Down day. 9 on the pain scale. Slept entire day. :0( with tears.

17Sep13 100 degrees and sunny. Still supper sore and grumpy after the day before being so torturous. In the morning I fell while getting in the car and landed with my left hip hitting the edge of the seat. I was in an awkward position getting off my scooter. A truck was hogging space so the space between cars was skinny. My right foot slipped. Two treatments today. First movie was 'Secretariat.' Good movie. Saw most of it but I woke up a few times so I know I slept through parts. Same treatment protocol: 2 atmospheres/33 feet; total time 90 minutes with 60 minutes at full depth. Pain level going in was a solid 9 but improved to an 8 after treatment. I kept an Ativan in my pocket. I didn't need it. Second treatment was same protocol. Will most likely remain so here on out. Movie was 'Life of Pi.' Excellent. Pain level dropped to a 7.

I met a young woman today, Caitlin, who had RSD when she was just 16. She is currently 22 and in remission. She is in college in the LA area. She is getting followup treatments at Rapid Recovery to keep her RSD at bay. She brought me hope that these treatments will work and be worth the cost.

Darrell and I saw a coyote this morning. It was very thin and tattered, one ear down the other piqued to hear. Its tongue was hanging out with lather dripping off. It swaggered as it crossed a field in town headed towards a nearby neighborhood. We were on a busy street with lots of busy cars with people headed to work. I am guessing the yote was desperately looking for food. There was an officer stopped in the middle of the road. Watching. We drove past. I want to know what happened. Good or bad.

18Sep13 92 degrees for the high but the morning was cool, breezy and beautiful. I am up to 18 hours after today's treatments. I was at about a 7 before getting in the tank for the first time. The color of my leg and foot was almost normal, and my walking was much improved (in my opinion). I am still using the scooter and a wheelchair because we don't want to push to hard too fast. The first movie was 'The Prince and Me,' (2004). I didn't even see the opening credits. Darrell and Susan had to holler a few times to wake me to pull my oxygen hood off as I was coming back up from the deep. My pain level was a 6. The pain did increase slightly when I was in route back for my second treatment. The second movie was 'The Prince and Me.' This time I watched most of it. Ugh. It's a teenybopper movie with poor acting and predictable script. This time I was in the middle white chamber (tank). I guess I graduated from the blue one. This tank was the same except for a few minor details. I located the emergency exit knob before being locked in. It had an extra port hole, which I liked a lot.

I had an awesome party ,,, in my head. In my dream I was following from house to house by foot. It was a block party. Each house had a different band: Breaking Benjamin, Foo Fighters, REM, Metallica, etc. !t rocked! I danced. I met the band members. I danced. I had a blast. I danced. Is it too early to celebrate? I am still dancing ... in my head.

By bedtime the pain and bright red and purple had returned.

Yes.my pump is a Medtronic Synchromed II Intrathecal Baclofen Therapy pump for the treatment of spasticity. I do not know the reservoir size but I believe it is standard. It is about the size of a hockey puck.

http://www.medtronic.com/patients/se...s-it/index.htm

Thank you Mike. I too hope it works. So far I am seeing some bits of relief. Whether or not I can attribute them to the hyperbaric chamber have yet to be seen. Weather is cooling here to the 80's. How about in your area? Are you seeing some relief? Hopping for pain free days ahead for you.

Thanks for the update Deb, sorry you had that awful day, but it sounds like things are going well overall. You are sounding a bit brighter on the whole, hope you know what I mean! :winky:

I know what you mean about the coyote. Stuff like that gets into my head too, and then I find myself thinking of it at odd times. You can't help every creature you see, but some just get to you. Maybe it too was just having a tough few days...:rolleyes: I wish you both luck with the next week.

Excellent on the party experience, sounds like a great way to spend a few hours! I'd say that dream was a positive overall, especially as REM were there lol. Fantastic band!

Take care, and keep up the good work.

Bram.