The MRI reading & On the Road Again to Sac

I finally got to see the MRI doctor and he said that the tissue looked very strong and healthy. So I am not going to get any surgery any time soon. I am still staying in bed some (a good way to do the computer). The hole is pretty much gone, the skin has almost closed up and the nurse has discharged me. I am doing well, my stamina has increased quite a bit so that is good. So Ed & I took a trip North! (I have a 2nd cushion so I sat on it on the trip.) Ed and I drove up to Santa Clara to try to see a quilt show but got lost at the 85/101 and missed the connection and ended up wandering around in Mountain View (north of SJ) and only found the convention center at 5:00! So we just went to the hotel just N of the center. Then the next day decided that we wouldn't go as planned as it was taking us too long to get organized and I wanted to get to see my 93 yr old aunt in Fremont and then get to Sac. We had a good time, Fri night we met some friends at a local restaurant. Then on Sat aft, & Sun 10-4 I attended the CDR State Council meeting. It went well, I was elected Pres, effective Jan, 2012. We had dinner on Sat night at our favorite Mexican Restaurant Allegros. Ed was able to spend Sun with his son Lee. We spent Sun night dinner w/my sisters Priscilla and Margaret and Pris' hubby Ed. Margaret was recuperating from a knee operation she had in SF. She works as a nurse in SF and has had problems for years w/her knees. Anyway, Ed & Pris offered to have her stay with them at the beginning so it would be easier to recover. So he drove to SF and picked her up and she stayed with them for about 3 weeks. A good plan as the ranch is pretty isolated and a hard situation to deal with if you are trying to recover from knee surgery. Then on Mon, sister Pris took Ed to get some plastic stuff for his son's art. I met them at the Sunrise Mall and shopped for decent mature clothes! Ed got some polo shirts and a new sports jacket (all of his others are too big--he lost 50# after his heart operation). Then we all went to Chili's for dinner that night. Tues we piled our stuff and my sister Margaret's stuff into the van and headed for Merced where she had arranged for her hubby Jeff to pick her up to take her back to their "ranch " in Mariposa. When we got there she called him to see where he was and he was only just leaving the ranch--it is about 1.5 hours away!!! She was a little pissed about that! So after we had lunch, we left her under a tree in the shade (it was 88) but she only had to wait for about 1/2 hour. Ed & I headed straight WEST to hwy 152 so we could get to the 101. When we stopped in San Juan Bautista, our favorite stop over place, the temp was 64! Wow great, it was cool and foggy all the way home.

9/15 more on the sore

As of 9/12 my sore is almost closed at the opening, .2 CM X .3 cm w/.7 cm deep. I got an MRI and got the CD but could only see a few images but I can only see bone on one of them and the other one shows a big bulbous blob with a big depression or hole. no one will read my MRI for me and I can only get a few images from the disc they gave me. My doc said she couldn't read it. So I called and left a message that I wanted to go to her office and look at the images myself, because the MRI place has a website that the doc's office can hook into and view the images. Then I want to print off a few choice pictures to keep for me. The main problem with paraplegics is that at the ischial (or sit) bone which should be shaved down so it is not so sharp which injures the muscle. Unfortunately from the pressure of sitting on that muscle and subsequent infections makes the muscle weaker and the tensile strength less after each episode. I have had 3, this last one was not as infectious as before. So the area under the bone has weakened and probably lessened muscle structure. Flap surgery would fill the void that is there from a lack of muscle growth w/ a flap of muscle tissue from my butt. it has taken the previous sores about 3-5 years to show up again so i don't see a problem waiting for a few months! I am waiting until I get rid of the HMO I am enrolled in...it sucks. My problem is with Kaiser in 2000 and UCDavis MC, in 2005--why didn't they do this bone grinding and flap thing then? and save me a lot of grief and loss of living? Pisses me off Royally! Then the doc I saw on Tues said "oh they haven't done flaps for years! HUH? The other docs are recommending them and this one isn't? And my friend who is head of Rehab and a wound care nurse as well said of course, you should have one. THe plastic surgeon last year said, "Oh it looks like it's healing, so let's let it finish". Well less than a year later it came back and then he wants me to have a flap but won't do it here because there is no good aftercare here! Which I find out mens hypervaric oxygen treabment HBOT. While others say HBOT say BAH! I need an expert, so today I called Rancho Los Amigos in Downey to see about going there for a consultation but they have not called me back yet. I might also try to go to Santa Clara Medical Center in San Jose, my friend goes there and thinks they are very good. Choices. But first I am going to get rid of this HMO CCPN=first class idiots-money grubbing greedy bastards-and get back to Medicare as primary w/ some other supplemental plan. The doc's referral coordinator said she would help me pick the best one when I get the notice of what is being offered from PERS (Ed's retirement).

a letter to the doctor

DATE: July 5, 2011 TO: Dr. Mary Brown, Cuesta Medical Group FROM: Susan Chandler, 528-4695 or barnonhill@aol.com SUBJECT: Stage IV pressure sore history and Issues regarding surgery Via Fax 534-1346 & Jennifer 534-1347 I am writing to try to get this issue resolved. I have been thinking about this for quite a while and trying to figure out the history of my pressure sore. I became paralyzed in March, 1981. I used gel cushions and RoHo cushions and was as careful as most “young” paraplegics to protect my bottom. In March, 1982, I had surgery for bladder cancer and had a small sacral area pressure sore, and may have gotten the ischial pressure sore then—unfortunately, because of a lack of sensation in the area; it is hard to say how it got injured. In March, 1993 I had a pressure sore show up on my right ischial tuberosity but because I made a job move, I was busy moving. So when I arrived in Orange County I went to a Kaiser clinic and some nurses helped me by treating it with DuoDerm. With rest I was able to get it to close up. Life went on and in 1997-98 I had a union organizer job with SEIU which was pretty stressful and probably started the downhill slide toward my first “official” sore. I also got a new 17” wide wheelchair in the spring of 1998 which always takes several tries at getting it to fit correctly and I think this has something to do with my sores showing up when they do. In March, 2000 I had my first ER admission with a high temperature and a non healing sore. It was the first of 3 admissions. After a few days (I can’t remember), they sent me home with antibiotics and home health twice a day! They also scheduled a surgical visit which I drove myself to; I don’t even remember being given any instructions about this procedure. The surgeon debrided the sore and I drove myself home! I don’t think that he even bothered to culture it. About 2-3 weeks later I visited the 2nd ER visit and they admitted me for about 5 days and a nurse cultured it. Again they sent me home with CIPRO and home health twice a day. A few weeks later they admitted me for the third time with a 105 temp and finally kept me. It took them about 4 days to figure out what to use to treat my infections. I had Osteomylitis and MRSA and was hospitalized for 5 weeks. I was on IV antibiotics and at some time they added a wound vac. When they determined that the MRSA was contained, they sent me to a convalescent home to recover which took about 2.5 months. Then again in 2004-5 I was fighting the same sore. In Jan 2005 I went for a CAT scan and there was Osteomylitis again! So again a surgeon debrided it and they sent me home with IV antibiotics, self administered. It took until May to recover. I also got a new 17” wheelchair in the spring of 2005 with a drop in adjustable rigid seat pan. I also got an Aquila alternating air pressure cushion. In Jan 2008 I had another episode where the sore showed up but I managed to get it to heal superficially. I also decided to start the process to apply for a new wheelchair in February and got a proper wheelchair evaluation with measurements. It was at this time that the evaluator discovered that I was sitting on a seat pan that was only 14.5” wide!! Somehow the adjustable seat pan had managed to adjust itself to this narrow size. I was sitting on the Aquila cushion which helps explain why the sore could recover. I immediately switched to a wheelchair I had that had an 18” wide sling seat chair, thinking erroneously, that I would soon get the new chair! Unfortunately, my husband’s heart problems interrupted any of my health concerns and I was unable to pay attention to my needs and didn’t get a rigid seat insert, which would have helped stave the sore off for a bit. However in Nov, 2009, as you recall, the sore erupted again and because your office did not have an accessible exam table, you ordered home health care to come and assess the wound. They started working on it and I was in bed until about March 2010 when I decided that it was healed enough that I could start getting active again. But after a bit I had to have home health come again. For 2 months, every week the home health nurse came, I asked and asked her to culture the wound because she kept noting that it smelled foul, but she never cultured it! You had suggested I see Dr. Hayashi, a surgeon, unfortunately he was not available until August but Dr. Anderson was. So in June, when I saw him, he said it would be good to have an MRI or CAT scan. When he gave me the results, he said it was murky so I said it was probably an infection and he should culture it, so he did but he also prescribed Levaquin. And he recommended that I visit Chalekson. When I saw Chalekson, he said he thought the sore was healing and to let it close up. Then again I got a new wheelchair and spent several months trying to tweak it to make it fit right. Again in March, 2011 the sore started to show its ugly head. So, this time you got to see it because you now have an accessible exam table! I tried to treat it like I usually did with DuoDerm, but it was not working so I asked for home health to help again. They came at the end of March. I had scheduled an appointment with Chalekson for mid-April but cancelled it as the nurse had started a wound vac and thought that this would work to close the wound. And a trip to Chalekson’s office was a 45 minute trip to Templeton and he had said to stay off it, sort of a dilemma! Then about the middle of May the nurse said that the wound was not healing anymore and so I decided to see Dr Chalekson. When I visited him on June 21st he advised me that I should have “flap surgery” to take care of the tunnel that is present in my right buttock. He said that the area never really healed and that the tunnel went to the bone. He said that the wound was clean. My understanding is that epithelial cells have healed over into the area which does not allow regular cells to fill into the space. Anyway for whatever reason, the tunnel never ever closed up. In reviewing my history, I don’t recall anyone ever saying I should have flap surgery and that stage IV pressure sores never heal without a flap which is what Chalekson seems to imply. Dr. Chalekson said that I should have the surgery but he said that he didn’t think that the aftercare locally would be adequate and that I should look into going to Rancho Los Amigos in Downey, CA! My impression was that the only place that would be appropriate would be Rancho. We left it at that! I didn’t talk to the office staff until the next day to see what I should do. Then I got to thinking, what the???? Why do I have to do all this? Then I made some calls to people I know: Sue Dariz, RN, Wound Care Nurse, and Head of Rehabilitation at Sierra Vista Hospital. Sue gave me the names of care facilities that give great after care: SLO Rehab Therapy; Mission View; Cabrillo, etc. and some guidelines as to what to ask them re their experience/expertise in dealing with this type of surgery and patient. Jack Sparrow, a paraplegic, has gone to James Grisez a plastic surgeon from Arroyo Grande who performed flap surgery on him last year. Jack recovered at Mission View and said he was very happy with the care. I have also heard of another person who just got flap surgery by Grisez. Other places I know of are: the Goleta Wound Care Center at Cottage Hospital; Santa Clara Medical Center in San Jose; Stanford Medical Center, etc. I think that going to Downey, CA is an undue hardship on my family. As much as I would love to go and benefit from their expertise, it would be way too hard on my husband, new grandson, and daughter to visit me as well as me being isolated from them and my friends. Where would I rehab? How would I get there and back? Would I have to lie down in the back of my husband’s station wagon? He does not like driving in LA—no one does! Would CCPN pay for an ambulance? Seems like a pretty expensive proposition, in addition to the costs of the stay down in LA. Jennifer, the referral coordinator at Cuesta Medical Group, told me that you talked to the VP of CCPN to ask for a referral to Dr. Grisez and they adamantly refused. I talked to Dr. Grisez's office and his manager said that she has asked several times that they accept Dr. Grisez as a physician into the network and they tell her that they don’t need him! According to Blue Shield, I need a written verification of a denial of a 2nd opinion from CCPN in order for me to make an appeal to Blue Shield. Probably the first thing we should do is get a 2nd opinion from another in-plan plastic surgeon. I went on line and found that CCPN has one other listed: Gary Donath MD, 1531 Higuera Street, San Luis Obispo, Ca 93401, 805-544-6000, 805-544-5460. According To CCPN’s Website, the following care centers are in their plan: Compass Health Inc 1575 Bishop Street San Luis Obispo Ca 93401 805-545-7575 805-545-7584 Vineyard Hills Health Center 290 Heather Court Templeton Ca 93465 805-434-3035 805-434-3065 Danish Care Center 10805 El Camino Real Atascadero Ca 93422 805-466-9254 805-466-6007 Arroyo Grande Care Center 1212 Farroll Avenue Arroyo Grande Ca 93420 805-489-8137 805-481-1534 Bayside Care Center 1405 Teresa Drive Morro Bay Ca 93422 805-772-2237 805-772-2536 San Luis Transitional Care 1575 Bishop Street San Luis Obispo Ca 93401 805-545-7575 805-545-7584 Woodside Nursing Center 1425 Woodside Drive San Luis Obispo Ca 93401 805-543-0210 805-597 I would prefer Bayside as It I very close to my home in Los Osos but I don’t know about their expertise with paraplegics. So San Luis Transitional Care might be better. I don’t want to be too far from home. Anyway, I am requesting that: 1) You ask for a second in-plan opinion ASAP. As an Urgent Matter. 2) You order a CAT scan of the area; (I think that I should have another CAT scan on my sore to show the hole in my muscle tissue. There was never one taken that showed any healed tissue, ever); 3) Get in writing any denial of coverage from CCPN. 4) Try to get this ASAP as I am tired of all this lying around trying to get myself healed. I have been more than patient of this health care system. I have been totally compliant and staying in bed about 22/7! 5) Correspond with me via email as, I find it very limiting not being able to let you know what is happening, it always seems that something comes up on a Friday night! I promise I would only use it for medical things, nothing else. 6) I get this surgery ASAP! Thank you.

AQUILA alternating air pressure cushion

I use an AQUILA alternating air pressure cushion and it is really good. However I still got my original sore back again...it seems to be triggered by new chairs!??? I think I might have gotten this baby back in 1992! I had surgery for bladder cancer then. Anyway, it erupted in 2000, w/me getting really sick w/Osteomylitis, 3 visits to ER, a nurse vitising me 2x a day at home then finally 5 wks at Kaiser. It took them a week to diagnose Osteo + MRSA! Then I spent some weeks im isolation then more on a wound vac.Then 2.5 mo at a convalescent hospital. then several months just recuperating. It is a good idea to try to keep up strengthening exercises with therabands and maybe Zumba if you can catch it on cable or dish network. it is pretty catchy and you can do it in a reclining position! . Just move to the music, it really makes you want to move. then it came back in Fall of 2004 and erupted in 2005 with home self injected IVs for 6 weeks! They delivered frozen syringes once a week and hubby would put 3 in the fridge for the next day. Bad bowels and made my teeth really yellow. I had to get up 2x a day for bowel care, early am late pm. Ugh. took about 6 months to finish it off. THen got a new chair and the Aquila cushion. Come to find out in 2009 when got measued for anew chair that the idiots who fixed up the 2005 chair dropped the rigid seat pan into the frame of the chair giving me a 14.5" seat pan! Tells you how good the Aquila is. only after I changed into the 18" chair I had with a SLING seat--bad move== did the sore erupt once again! I laid in bed last year tryng to heal it again...but a stupid nurse wouldn't culture the wound, she just kept saying it sure smells bad---8 fu....king weeks wih no healing, so I told them to get lost. Finaly got to see a surgeon, he MRI'd it and said there was some fuzzy stuff and I said it might be infected,,,maybe you should culture it He did I got the antibiotics. But no new MRI so no one could see what was inside and the other surgeon said it looked like it was healing "OK" so I got it to heal over. then wihen I got the new chair, as usual, it takes many tries to get it right and it was too high off the ground; then the front wheels got smaller but they forget to check the angle of my knees and I was slanted downward and the fOR SOME STUPID REASON I STAYED UP DOING TAXES TIL 2 AM!!! dumb and then it broke thru again. BE SURE AND GE 100 GM OR MORE OF PROTEIN DEPENDING UPON YOUR WEIGHT. I now have a tempurpedic mattress with positioning and vibrating massinging, very good. hard to move on but I use a push up handle to help me move from the edge. I looked for Microcyn and found the co in Petaluma that sells it for $20 a bottle. www.puracyn.com 1 866-3183116. It is now called Puracyn Wound and Skin Care germ killing solution with stabilizing Preservatives. I took an old IV sringe and filled it and injected it into the hole in my butt and it seems to have helped with the smell and fevers. Who knows, I will see a surgeon on Tuesady.

A HISTORY OF MY DECUBITUS

A HISTORY OF MY DECUBITUS My problem has been long standing. First of all I can't FEEL!. I figure I must have had some sort of injury to the site (the right sit bone--the Ischim). My right side is a bit more paralyzed than the left. My original fall was in 1981 and I don't remember any problem before my bladder removal in 1992 when I had a sore on my tail bone but I don't remember anything being on my Ischim. I know I had various cushions including gel types and low profile rohos. I do remember one gel cushion going weird and it never relaxed at one point, so that my have been one cause of the sore? in any case, check out my blog: I remember when I moved to Anaheim in 1993 I was dealing with an Ischim sore, but being a Kaiser patient who had zero understanding of (or interest in helping?) spinal cord injured people--as far as I know, nor did I (even tho I had seen the pictures they had shown us in Rehab. They didn't really help me understand what the problem was so it healed superficially. It then it came back in 1998-99 after working for the Union which required long hours. And in March 2000, I was hospitalized at Kaiser after being admitted to the ER 3x and sent home twice to home health and high fevers until they finally diagnosed me with Osteomyelitis and MRSA and guaranteed me and then sent me to a nursing home, not able to get up for 2 months! What a nightmare, then after rehabbing I was OK. Then again in the fall of 2004 it started up again and in Jan 2005 I went to UC Davis and they debreeded it and sent me home w/IV antibiotics and 5 months in bed again but got up 2x a day. Then again at the beginning of 2008 I had a quick episode and I healed it over superficially. Then Nov 2009 it got bad again and I went to bed to home healthcare. By March I had willed it healed over and got up. Then a home health nurse had come and had refused to get it cultured she came for 8 weeks and kept saying "it smells bad" and "I said you should culture it" and she agreed but didn't do it!!! It healed over again and then in March 2011 I got a new chair and in the process of getting it adjusted--it was too tall, the foot rests were too long and my legs were not at 45 degree angles and I ended up staying up way too long--the sore erupted again! So I am now in bed again. Finally I have found a good home health nurse and she has set me up with a wound vac and I have been off it religiously about 21.5/7.

MORE ON THE SORE

I have been stuck in bed again as my sore has returned with a vengeance and I am trying to figure out when it occurred in the first place—way back in the past—perhaps only a few years after my injury. Who knows? The other problem I have been having is that because I am paralyzed and can’t feel, I am disassociated from my bottom half and tend not to remember things that I should. So from time to time that gets me into trouble! I recently got a new wheelchair and again, forgot the process and the supplier didn’t follow a protocol that he should have—like measuring my original chair so that he could duplicate it for the new chair! So it took about 2 months of changes to get the new one so it was like the old one! AARGH, one of those was that my knees were not at a 90 degree angle and this I think put pressure on my butt which made the sore break through again. So of course that means it wasn’t really healed right in the first place!! The Doctors in this area are not the most up to date on medical procedures for paralyzed people I guess, they only just got an accessible exam table!!! Anyway”Would a, Could a, Should a”. I feel pretty good about how it is going now. I have a competent, dedicated wound care nurse, who is communicating often with the doctor, and a wound vac that seems to be working. Who knows how long it will take for it to heal this time? I do have the tempurpedic bed which is very comfortable so that helps a lot. I have been pretty compliant only getting up to go to the toilet once a day& occasionally to have a meal with a friend or Maggie & Brett. They came today for Mother’s Day and Brett made brunch!

more on the sore!

I posted this note on my facebook page too. as well as my email list. Well my butt sore has come back! As the nurse said "once you have a stage 4 sore you always have one!" AARGH! So I have been off it for about 2 weeks now, only getting up in am to get on toilet, wash up, grab a few things and jump back in bed. Nurses come 2x a week or so but don't know what the Dr. wants to do will talk to nurse tomorrow...Luckily I have a temperpedic bed w/massager & adjustable...very comfortable but hard to move on. I highly recommend it. Bing is coming over this afternoon for a visit and that will be fun. He is about 14#s and is getting more active, still can't keep his head up but likes to look at the fan and his toys and likes to "talk" a lot. Ed and I enjoy him.

George Carlin's "The American Dream"

Toward the end of his life and career, Carlin really did get rather incisive and insightful, didn't he? Peace ..... REV CURT =)> http://www.youtube.com/watch?v=acLW1vFO-2Q MY SENTIMENTS EXACTLY!!!