Treatment thoughts from Rachel

Our week in West Virginia is over. Four flights, 2 layovers, 9 hours in the car, fourteen microacupuncture treatments, 280 needles, 2 vision scans, three days and nights of hanging in a hotel room and eating frozen dinners, three nights in the loving home of family before and after treatment, six nights away from our two bigger kids, a week of alone time with our baby, seven days together to talk, pray, discuss, process, pray, cry, think, and pray more.

We don't know if it the treatment had any effect. Dr. Otte thinks it did. Another doctor didn't. Only time will tell. If there was any effect on Rod's eyes, we know now that one week of treatment can only do a little bit of good. Baby steps. In 2-3 weeks and again in 3 months Dr. Otte (from W.V.) suggested having more scans done to track the changes. Since Rod's vision hasn't changed much, if at all, in the last 2 1/2 years it will be hard to tell ifthe treatments are slowing the degeneration. But in any case, we will likely go back to small town West Virginia to continue treatments. If there is any chance that these Micro - acupuncture treatments can help, in any way, then we're in. For the benefit of Rod, maybe our children, and grandchildren, and all the other families out there touched by RP and other degenerative eye diseases, we have to give this a shot.

I trust God. I know He is good. And from Him comes only good things. I realize that the path to His good is not always the easiest nor our first choice, but in the end it will be good. I believe this. And for the times when I lose hope or faith, I know that I have friends and family who will "stand in that gap" for me until I'm ready. Rod and I are so thankful to all our friends and family who were sending up prayers for us all week, for the two dear families who watched our big kids while we were gone, for my uncle who donated his airline miles, and for my cousins in Dayton who opened their home to us before and after the treatments. Without the love and support of all these people, Rod and I would be lost. Thank you!

Microacupuncture Treatment - Day 4 - February 25, 2010

On the fourth and last day of treatment Rod had three treatment sessions. They went well, just as all the others. We learned of some nutritional practices to begin or continue, as the case may be, that are known to be beneficial to eye health as well as general health.

Practices such as vary your diet as much as possible (don't eat the same few meals over and over), load up on minerals (root vegetables are one great source), buy fresh produce from an assortment of farmers in order to get a variety of minerals in each farmers' food, other great foods for eye health are salmon, sardines, and kale. So I have a big job ahead of me to be more mindful of what I'm cooking to get the maximum potential from what we eat.

Rod will also continue taking vitamins manufactured for Dr. Otte's microacupuncture practice which contain all the best vitamins and minerals for eye health.

Day 3 - cont.

After receiving the scan this morning, Rod and I had a lot to process. Fortunately, between the 3rd and 4th treatment today, we had some great conversation with Dr. Otte as well as with the 18 year old boy receiving treatment and his mom. We had an opportunity to ask more questions about Dr. Otte's medical practice, questions related to treatment, and more explanation of the scans.

Like I said in the earlier post from today, it was hard to tell if there really has been improvement in Rod's vision scans from Monday-Wednesday. Without hesitation Dr. Otte willingly compared his initial scan to the scan we had done in Austin last Friday. He showed us how they were very similar and where, exactly, the improvement has been in Rod's eyes (although it still seems pretty subjective to me). What I left that conversation with was a better gut feeling about the validity of Microacupuncture and Dr. Otte. Also, upon our request, he emailed all his eye tests for Rod to Rod's opthamologist in Austin. We wanted her opinion on the scans (though Rod only jus met her for the first time last week). We wanted both doctors to weigh in on each other's work - just out of curiosity. The doctor in Austin couldn't tell much improvement between the two scans taken here. However, Dr. Otte didn't say there was much improvement, just that there was some improvement. The doctor in Austin also said it is more difficult to compare scans from two different machines.

Taking all of this into account, Rod has decided to forgo another scan from Dr. Otte in the morning and just have three treatments regardless. Then, because of the weather, we will return to Dayton tomorrow night, instead of Friday morning before heading home Friday afternoon. Then in 2-3 weeks (Dr. Otte suggests waiting a period of time before seeing the eye doctor to allow the eyes time to "flush it all out". Which I guess means the results of  the microacupuncture continue to settle for a while. In any case, Rod will see the opthamologist in Austin and have her do an "after" scan, with the same machine, to compare to the "before" scan she took. That should give us a better idea of the effects of the microacupuncture for Rod.

We are not ruling out the possibility of returning again in the future, unless Dr. Otte tells us it is not worth the trouble.

Microacupuncture - Day 3 - Feb 24th, 2010

Before any treatments today, Dr. Otte performed a vision field and acuity test. We don't really know how to read the scans, but as a layperson the vision area looked differently shaped but did not look to reflect an increase in the vision field. Dr. Otte did not pressure us in to deciding to continue treatments or to stop. He did think that Rod's acuity was better.

After much thought, Rod has decided to do one more day of four treatments and then have another scan done in the morning. If there is no change by then, we will stop treatments.

So, pray...pray now. Tell anyone and everyone you know to pray. God is working in us this week and whatever the outcome, I know He has a plan. I know what I want to happen but I am working hard to give it all to Him. Please pray the same.

Microacupuncture - Day 2 - Feb. 23, 2010

Rod had 5 treatments today. By the end of the day his hands and feet were a little sore. He says it feels like having splinters and itch a little when the doctor takes the needles out, but other than that, there is little pain or discomfort. What a trooper!

Four or five more sessions tomorrow including another visual field test to see how Rod is responding to the treatment. Dr. Otte has not requested any payment from us yet. He said that we don't pay until we know that the treatment is working.

Just as a note to others who are considering this treatment...the motel (Days Inn) we are staying in is right across the parking lot from the Microacupuncture center. And the motel gives a considerable discount to Microacupuncture patients. It is a decent motel with continental breakfast and a pool.

Microacupuncture Day 1 - Feb. 22nd, 2010

Arrived in West Virginia and Rod had first treatment at 1pm. Treatment takes 20 minutes. Needles go in hands (3 or 4 in each hand) and feet (5 or 6 in each foot). The treatment increases blood flow to the eyes. Rod is also taking Micro acupuncture dietary supplements manufactured for Dr. Otte's clinic. The bottle reads Vision Support with Lutein and other Synergistic nutrients and herbs.

Two other people were in the clinic with Rod - which was encouraging. An 18 year old boy from Florida is here with his mom for 2 weeks of treatment. He has RP, like Rod. This is his first visit. We look forward to talking more with them tomorrow.

Also, an older lady with Macular Degeneration who has been coming to Dr. Otte since March.

Dr. Otte confirmed that the Foundation for Fighting Blindness is coming to his clinic next week to interview him.

February 2010 - West Virginia

God has had His hand in this journey without a doubt. There is no logical reason we should have come across that one brief mention of Microacupuncture on some random person's blog, hidden away deep in the depths of a discussion board...but we did.

From that point, things just kept falling in place to make this trip to West Virginia possible: My uncle's generous gift of airline miles to Rod required us to fly in to Dayton, Ohio (4 1/2 hours from the treatment center in W.V.). But that was perfect because I have cousins who live in Dayton, whom I hadn't seen in nearly 10 years but had been reconnected with on Facebook in the last six months. The timing of our trip made it possible for us to spend two nights with my cousins before driving to West Virginia for a week of treatments. Then, while staying with my cousins, we attended their church service which happened to have a guest speaker who focused on the power of prayer in healing. Rod was prayed over in church and we know there are prayers going up all over the place for him. Thanks to our friends and family for your continued support.

January 2010

A year has passed since our visit with Dr. Lewis. We opted not to return for the annual visit because it seemed pointless. Since there is nothing we can do to treat his eye disease we didn't really want the news that it had worsened. Ignorance can be bliss at times.

However, one night Rod and I (Rachel) spent a couple hours searching the Internet for RP support groups and reading blogs on various websites including the Foundation for Fighting Blindness. It was on one of these blogs that I saw one person's brief reference to a Microacupuncture treatment for degenerative eye diseases such as Macular Degeneration and RP. With excitement about the possibility of hope, we both scoured the internet looking for more information on this microacupuncture. We didn't find a lot, but what we did find was very encouraging. We picked the brains of anyone and everyone to find out if anyone knew anything about this hopeful treatment. So many responded to our inquiries and for that we are very thankful.

Weighing the facts and opinions that we had gathered, we decided to go for it. There were no guarantees that this unconventional treatment was going to work but we had to try. We chose to fly to the clinic in West Virginia to see Dr. Per Otte, the founder of Microacupuncture, because he claimed he had a 98% success rate and could give Rod 15-30% of his vision back. And if there were no improvements, then he wouldn't charge us for the treatments. Sounded like a fair agreement. So arrangements were made for the last week of February.

January 2009

After visiting eye doctors in Austin, including the his regular eye doctor, Dr. Quintanilla, and Dr. Levitan at the Austin Retina Associates, Rod was referred to Dr. Lewis at Baylor Medical Center in Houston. In January 2009, we visited Dr. Lewis. He ran all his own tests and came to the same conclusion...Retinitis Pigmentosa. He wasn't able to offer any treatments and just the hope that sooner than later there would be a scientific breakthrough to treat or cure RP and other degenerative eye diseases.

Sadness and worry over what the future holds for Rod and our family was all we could think of. Life would continue as normal except for the fact that we now knew with more certainty that our lives would eventually be very different. There is no norm to the rate at which vision is lost with RP. Blindness could happen in a year...in 20...or never, there was no way to know.

Rod's Eye Story

In August 2007, Rod first learned that there was a medical reason to explain his poor night vision and why he was tripping over and bumping in to so many things...Retinitis Pigmentosa.

Retinitis Pigmentosa (RP) is a degenerative eye disease that can eventually lead to blindness. The first vision to go is usually night vision, followed by peripheral vision, and finally central vision. This is a genetic disease that is hereditary but there are also many incidences documented where it appears to be random. There are 10 kinds of RP.

Since we have not been able to find any other cases of RP in Rod's family our best guess, without genetic testing, is that his is not hereditary. At some point we hope to have genetic testing to find out for sure. In any case, we will monitor our kids vision from early on just to stay on top of it.

Rod was born with this disease but it wasn't until age 37 that he found out he had it. Thinking back, he remembers having tunnel vision while playing high school football but didn't give it much thought. Rod's vision loss was already pretty significant by 2007 but hasn't seemed to worsen much, if at all, in 2 1/2 years, according to the vision field scans he has had taken over the course of that time. You'd think Rod would have noticed a long time ago that he couldn't see well but we think he must have just gotten so use to it being that way he didn't know any different.

Thankfully, Rod can still work and drive (though it is best to limit it when possible) so not much in life has changed up to this point except that heis are more aware of his limitations.