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.