Oh the Horror! The Putrid Horror!
June 19, 2007 7:07 PM   Subscribe

How to get the care you need when you just cant seem to find the way around the blockade?Hillsboro/Portland/Beaverton area of Oregon

So since I know everybody loves long drawn out TMI questions with lots of details here it goes…

My husband had his pilonidal cyst (http://www.pilonidal.org/whatitis.htm) done about 2 months ago, (the open wound that needed packing for 8 weeks kind), everything was going well. It finally healed up about 2 weeks ago! The horror was over! No more packing, fresh pink skin, fabulous. That was until it developed MRSA (antibiotic resistant staph) and blew open with CUPFULS of clots, puss, and fluid yesterday with almost no warning except he had been constipated and finally did his number. Now his wound is deeper than the day he had surgery, looks dead, smells horrid and is just pouring puss constantly, especially if he moves or laughs or takes a number 2.

We went to go see his surgeon today and they are not concerned. They said that it is draining and there is nothing else they are going to do. They won’t give him antibiotics, they won’t clean it, they just told me to start packing it again and it will finally close up, and to basically quit being such a drama queen. "If I cant do my job" I can send my husband in and his nurse will pack it every day, and that I should use this as a "bonding experience", I tried explaining that I am not concerned with the packing, that I had already been doing that for weeks, that I am concerned about the infection, the way the wound looks (THE SMELL) and the horrible hot red hard swelling that is starting to engulf his entire cheek area. They refuse to refer me.

So I called Tuality Wound Care in Hillsboro, they are a nurse run clinic, and were great on the phone HOWEVER they need a order to see him even though our insurance doesn’t require referrals. They told me what to say and to call his PCP for a referral. To make a long drawn out story a little shorter, the PCP is refusing to give a referral because the nurses at his clinic can do it if I am to squeamish and cant do my wifely duties (surprise, same clinic as his surgeon and I get the same story).

Urgent care and the emergency room when I call them say to come in but any orders or referrals they send directly back for his doctor to do.

I called the health nurse at work, I called our health insurance (and we supposedly have GREAT health insurance), the insurance says they will cover 2nd opinions and if we can get the order written they will cover the wound care specialist as well. However, I can’t find anybody that will take him now to give us that second opinion! In the weeks it takes to get a new patient exam this will all be over or his butt will be rotted off.

I don’t know what to do or who to call. We plan on switching out of that clinical group and finding new docs, but what do I do in the mean time? Do any of you know of good doctors or wound care places in this area that we can see right now without waiting for weeks for appointments or referrals?
posted by Jenny is Crafty to Health & Fitness (21 answers total) 1 user marked this as a favorite
have you considered taking him to the emergency room? it might open some doors. at the very least, you'll get a second doctor to take a look at it.
posted by thinkingwoman at 7:19 PM on June 19, 2007

Escalate. Tell the doctor that if he does not give you the fucking referral that you need, you will personally write the insurance company and ask that he be removed as a doctor on the insurance company's list of approved doctors.

I'd expect to get results pretty fast. When applying pressure to those who will not do your bidding, find a pressure point where they could suffer pain if you succeed. With professionals, it is always money or their license.
posted by Ironmouth at 7:20 PM on June 19, 2007

Response by poster: I called the emergency room to ask what they could do and they said I could come in, however any referrals would need to come from my husbands doctor, they would send all their notes to them. Urgent care basically said the same thing.

My health insurance says that it is not their responsibility to get physicians to write referrals. I talked to 5 1/2 people today escalating.
posted by Jenny is Crafty at 7:34 PM on June 19, 2007

Since your doctors seems so reluctant to take you seriously, what about setting up a three-way (conference) call between you, your PCP and/or surgeon, and your insurance (or the wound care clinic you want to go to)? The doc(s) will probably find it much less easy to justify the refusal to prescribe antibiotics or to issue a referrral when you're not the only one on the line -- you, they can push around; the insurance company, not so much.

In the meantime, though, try not to freak yourself out -- as very difficult and stressful as this surely is, his butt will not actually "rot off" in the next few weeks. (I know you know that it won't literally happen, but I've found it helps the emotional side of things in situations like this to avoid exaggerating the worst-case scenario, which can sort of make everything go to 11.)
posted by scody at 7:34 PM on June 19, 2007

If you're accurately describing this you need to get a multidisciplinary consult with an Infectious disease specialist as well as with a Plastics person. Or else you just need a really, really conscientious surgeon who will watch this like a hawk and supervise the treatment and management that the wound nurses are providing.

Don't threaten him with the Insurance Company - he'll think you're an idiot and won't care and it won't do shit. If you want his attention, you can drop words to the effect of calling the Board Of Medical Examiners, but that might be better for another day. If you threaten, you may get what you want, but you will most certainly be cut loose immediately and in a limbo period of weeks or longer.

In a case like this, I would think you have a PCP who referred you to the surgeon. For better or worse, it's us (the PCP's) who are the General Contractors. So you would be better off scheduling an appointment with your PCP and together, in his office, ask him if he is certain - certain - that your husband does not need the attention of a different surgeon, or someone in ID, or Plastics, or wound specialty, or all of the above.

Most of all, insist on a timetable, so that if x amount of improvement is not see in y number of days, he offers a contingency plan.

And despite what Scody said, there are definitely problems associated with MRSA not seen with other wounds.

Who is your health insurance with?
posted by docpops at 7:43 PM on June 19, 2007

Response by poster: The PCP and the Surgeon are with the same clinic. I have talked to both numerous times and am getting no where. They have both looked at it. I called the PCP again this afternoon and said, look, I am willing to accept that I might think this is alot worse than it is, however, I would like I referal to the wound management place so that I can be assured that we are doing everything that we can. He seemed almost put out that I would consider going outside of their clinic group, who doesnt have wound care specialists. If I "cant handle it" then just go to them and they will pack it. I tried explaining that packing was not the problem, I am A-OKAY with that...

We have CIGNA Open Access Plus.

His "exit" wound is about 1.5 inches deep, 1/3 inch wide and about 1 inch tall. Almost the same dimensions as the original incision that he had 8 weeks ago. It is grey and smelly.

A little more to this story for doctors who are reading. This started with a spider bite on his thigh about 4 weeks ago, they put him on the z-pac (they did not culture, just said it was hobo, and I thought that was bad, it was nothing compared to his newest fiasco), it cleared up after about a week. Then I got MRSA and I have cleared up (was put on sulfa-something), and now the infection has jumped back to him. The PCP and the surgeon both know all of this.

We have been sleeping seperately for weeks, disinfecting the house, scrubbing everything, washing hands till feel raw. Not sharing or reusing towels, sheets and cloths.

I found another wound management place in Portland that I will be calling in the morning, that hopefully will take us without the referral since insurance doesnt require it.
posted by Jenny is Crafty at 7:58 PM on June 19, 2007

Response by poster: I was just talking to a friend on the phone and they mentioned a "gateway" where physicans get rewarded for taking care of it on there own but on the flip-side financially penalized for referrals outside of their clinic. I am wondering if something like this is happening?
posted by Jenny is Crafty at 8:21 PM on June 19, 2007

docpops: Don't threaten him with the Insurance Company - he'll think you're an idiot and won't care and it won't do shit.

Speaking from experience, that's just not always the case. I had a doctor several years ago who refused to make a referral I needed (and which my insurance company required) and whose office manager wouldn't help (she also wouldn't make the appointment for a separate procedure I needed to have done). The situation, which I'd been battling on my own for more than a month, was resolved in less than 5 minutes with a call from my insurance company with me on the line. ("Oh, a referral? Oh, gee, of course, we'd be happy to! And we'll make that appointment too, pronto! What a silly misunderstanding! Goodness! We had no idea!") It may not always work, but sometimes it does.

And I do realize the risks involved in these sorts of wounds; I had a relative who dealt with this same problem several years ago. Of course such wounds require serious care, especially because of infection, etc., but I still maintain that it will actually hinder the OP in her quest to get her husband the proper care he clearly needs by panicking over the thought of extreme worse case scenarios. (Indeed, saying things like "his butt will rot off" to doctors or nurses will almost guarantee not being taken seriously by the very people who need to take this seriously.)
posted by scody at 8:28 PM on June 19, 2007

I was just talking to a friend on the phone and they mentioned a "gateway" where physicans get rewarded for taking care of it on there own but on the flip-side financially penalized for referrals outside of their clinic. I am wondering if something like this is happening?

Well, probably. Depending on the way the community shares resources and monies, this is sometimes the case. But it still seems unusually obstinate. For sure, on a parallel track, start the process of getting a new PCP. And when you do, write a letter to the clinic administrator, cc to your doc, expressing the anguish and frustration you felt over this episode.

How was the MRSA diagnosed - via a recent culture? If not, you need a new culture of the wound in the event that more than one organism are present.

Also, have both of you been given a 10-14 day course of intranasal mupirocin [Bactroban]? If not, then I do feel as though you are being given substandard care.
posted by docpops at 8:51 PM on June 19, 2007

Response by poster: They did not culture his leg when the original spider bite showed up, just told us what it was. When it showed up on me the doc in the urgent care in did culture and the results came back as MRSA. I got diagnosed at a clinic about 500 miles away from home when we were away on our 8th wedding anniversary. Through this whole thing with him they have not cultured, they just told us that he got what I had and that it came from the original spider bite. They said that a culture was unnecessary given the chain of evidence.

Sulfamethoxazole / tmp-ds 2x per day is what they put him on originally and the last of his prescription for his leg ended just about 2 days before his rear end erupted. That is the same thing that they put me on when I got cultured and came back positive for MRSA. He now looks like he has another something new growing on his leg, which I did not see until this evening.

They said that more antibiotic is not needed because the sulfa is still in his system. I was concerned that it was going to pass back to me, and they said that it was not going to pass back to me because I recently had completed a course of antibiotic as well and to just sleep separately and not share towels.

Oh, and Scody...I was more venting my frustration on here, I did not freak on the doctor with OMFG his butt is rotting...I explained it very adult like (even if I sound and feel like a complete whiney baby telling all of you about it) :) But thank you for the suggestion and I will continue to try to hold my composure and not freak, because you are right and I do want the level of care to not suffer.

I did make the mistake of bursting into tears with the doctor(s) last night and then today when I was describing what happened. I am not too good at all of this nursing stuff and was a bit traumatized. When I told them that I was not at all good with this, and I was not comfortable with taking him home they told me to take him home and take this time to bond with him.

They do not want to see him back until July 10th for a follow-up check.
posted by Jenny is Crafty at 9:14 PM on June 19, 2007


From what you have described, it would seem like there would be merit to repeating a wound culture to confirm it's still MRSA, and not additional bugs like pseudomonas, amongst others.

It's debatable that more antibiotics would help, but I would defer to an ID specialist, and certainly not your PCP or surgeon.

There are two superb ID persons here in Salem - I do not know of any in Portland, though there must be several. I would call Cigna and see who is in-network, and see if they would see your husband.

As far as moving the ball forward, it's hard to know how to break through the attitudes of your doctor. I know if I saw a message on my desk from a patient to the effect of "My brother-in-law the attorney suggested an ID consult with Dr. XYZ" it would get my attention.

Good luck.
posted by docpops at 9:38 PM on June 19, 2007

And you both need intranasal mupirocin for 14 days. Now.
posted by docpops at 9:42 PM on June 19, 2007

This may be helpful.
posted by hortense at 9:57 PM on June 19, 2007

What I'm suggesting is telling the doctor that you will escalate with the insurance company. Going to the insurance company by phone will not help. You need to put the pressure on the person who can do what you need with no cost to himself.

I would do it thusly: Write a letter tomorrow morning. A real letter. Fed Ex it to the doctor. Explain that you are "disappointed" in the service you have been provided. You have asked for a simple referral and have not received the help you expected from a member of the medical profession and that you are considering writing a letter to the insurance company detailing the situation and your disappointment with the service you have been provided by the doctor. If you are feeling particularly nasty, inform him that you are considering reporting the matter to the Oregon Board of Medical Examiners in Portland because you feel that he is preventing you from getting a second opinion. That is what he is doing.

A letter is a much bigger deal than an E-mail and a telephone call. It will often generate compliance where the other methods will work.

You have family who is ill and the doctor is getting in the way of you giving the people you love the treatment they need. This is morally wrong. Your doctor should be reported to these authorities if he refuses to give you the referral that will allow you to get a second opinion.

I am not your lawyer and this is not legal advice.
posted by Ironmouth at 10:10 PM on June 19, 2007

The clinic should have a formal complaint process. If not, it's likely there's at least someone within the clinic who is responsible for heading off problems before they turn into malpractice suits. Quit making phone calls; you need the to start developing an ominous paper trail. It subtly raises the stakes. It also gets your reasonable concern heard by a wider range of people and harder to dismiss as crackpot-y.

Enter a formal complaint with the org. Don't forget to state what you're seeking as resolution (the referral) and when you reasonably need it by. CC that written complaint to the clinic's medical director. Hopefully they'll respond promptly. But if they don't, then having evidence that you did your best to get this solved through "proper channels" will get you taken a lot more seriously if it does become necessary to escalate this to the medical board or insurer.

If possible, get the insurer to fax you a note confirming the approval. Attach it to the complaint. Prevents confusion about the basis for denying the referral.
posted by nakedcodemonkey at 10:39 PM on June 19, 2007

Wow, this sounds like a horrible situtation. Your "wifely duties"? What the fuck century are we in? And how is it okay for a doctor to say shit like that?

You've got a shit doctor. You must change doctors now. It sounds like you have an HMO or something (since you need referrals) so that might be easier said than done. But if it is at all possible, you should just go to a new GP now and pay for it out of pocket (office visits to GPs are usually less than $100). Get their opinion. If it jives with what your jerk doctor is saying, I guess you're okay and you can take your time finding a new PCP in your network. If it doesn't jive, well, I don't know.
posted by misanthropicsarah at 8:03 AM on June 20, 2007

It's EASY to change doctors. Call your insurance company, tell them you're looking for a new PCP, and ask for 3-4 names. Call those doctors and ask if they're taking new patients. As soon as you find one who is taking new patients, make an appointment. Call your insurance immediately and tell them you now have a new PCP. Call your old doctor and ask him/her to fax over your medical records to your new doctor immediately.
posted by croutonsupafreak at 10:17 AM on June 20, 2007

Response by poster: We finally found a wound clinic that will take him without the referral paperwork at OHSU (Oregon Health Sciences University). So we have made an appointment there for tomorrow. Our insurance doesnt require referrals, we had just been having a problem finding someplace to take him without one.

We are researching new PCPs and will be switching immediately. This clinical group we have been going to for 8 years no longer has our business.

I am keeping written record of everything and after it all is said and done, I will be filing a letter of complaint with the clinic, our health insurance and possibly the Oregon Medical Licencing office.
posted by Jenny is Crafty at 11:19 AM on June 20, 2007

Jenny, great news about tomorrow's appointment -- I hope it goes well and that they take good care of your husband! And good for you for making a plan to follow up regarding your dissatisfaction with your clinical group once your husband's back on the mend. Best of luck.
posted by scody at 11:57 AM on June 20, 2007

Any followup?
posted by frykitty at 11:10 AM on June 23, 2007

Response by poster: Hi Guys, I forgot to do a follow-up, I apologize.

Well, we finally got a referral to go through. They sent it through for the WRONG THING just to be ass-hatish. We found that out after taking the day off work to go to the wound clinic. They could not help us out at that appt but did give us some general advice and made a follow up appt. They were very nice to work with.

We got him a new primary care guy who finally was able to see him on Thursday and got him referred for the right thing. He also cultured him but is waiting to put him on antibiotics until the culture comes back. This guy we think we will really like. He is an internist with a professional interest in infection control and community outbreak, so who better for my husband to see! They have made a list of the things that they are going to be working on fixing over time.

We went back to the wound place, and now they have us packing his wound with this stuff that is made out of seaweed rope called Alginate and flushing it with saline. The alginate has calcium in it as well as keeps the wound bed moist which I guess is a good thing. If the culture comes back positive for MRSA they will start us squirting this stuff in there made out of silver, because I guess that is good for wounds.

His infection is getting a lot better just using the saline and alginate, so I think we are on the healing end of things.

Thanks everybody for all the support and private messages of encouragement.
posted by Jenny is Crafty at 12:10 PM on July 1, 2007

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