chronic wound treatment centers/docs

[Dexter Rutecki]

My father was diagnosed with an abdominal cancer (stage IV) a number of years ago--after two brutal debulking procedures and I don't know how many rounds of chemo he is, relatively speaking, in good shape (or as good shape as someone living with cancer can be). I never found out how much time they had actually given him when he was diagnosed, but he's probably 5+ years beyond even an optimistic assessment at this point.

Current issue is that following the second procedure, maybe two years ago, the incision in his abdomen never healed. I assume it is significantly worse now than when he left the hospital--he's literally walking around with a hole in his abdomen that requires constant attention (won't go into the messy details). His primary hospital is among the best cancer care centers in the world, I think, and he has seen a wound guy at another top NYC hospital. No one has a solution, so far. They can't do anything surgically due to his maintenance chemo program, apparently.

Anyone here have any experience with some brilliant wound care guy who might be able suggest something no one has thought of? Or some innovative center (that actually works--please, no holistic medicine bullshit)? I'm grateful he's in the probably sub 1% of people who survive like this, but I also have trouble believing there is really nothing to be done (they have been weighing some hyperbaric treatment thing, but he is not optimistic that it will really help).

edit: little extra info below (thanks to OG for asking some questions he responded to) just in case it makes a difference

No radiation ever, no cancer in the wound, on something called Ionsurf. Never smoked, healthy heart/lungs.

Wound has communicated with an adjacent fistula and he has some mesh exposed that his body has apparently rejected.

[Buster Highmen]

Yes: my dad had chronic ulcers (from taking so many bloodthinners) and had collapsed a bunch of times due to blood loss.
After his 5th attempt to get the ulcers fixed, I got him lined up to go to the Mayo Clinic in Jacksonville, FL. They lived in Naples.

There they used a technique involving a balloon which inflates and stretches the stomach out so they could see all the ulcers and fix them with laser cauterization.

I'd imagine other, possibly closer, Mayo Clinics can use the same approach.

[Flyoverland Captive]

My wife has been a WOCN (Wound Ostomy Continence Nurse) for 25 years; all she does is heal wounds, many like the one you describe. There's a device called a VAC that may be helpful in this situation.

Check with your hospital; I'd see a different WOCN than the wound guy you saw. My wife has worked with lots of them, and they run from clueless to awesome. Keep looking for awesome.

PM me if you want more details.

Edit: Here's info on the VAC.https://www.hopkinsmedicine.org/heal...ure-of-a-wound

[old goat]

PM sent

[mcski]

Wound care experts were pretty hard to find in my experience w my dad skin ulceration. We got hooked up w a wound VAC but I basically had to learn and teach everything about it to anyone and everyone on shift at the hospital and rehab center. It's gross, but it was amazing how well it worked on his wound. Not sure if it's applicable here, but I'd give it a big thumbs up in our situation. Dressing change protocols have come a long way in the last few years as well. Like someone said above, some are awesome at would care, some aren't. Good luck.

[neufox47]

Has he been to Mass General? You’re right next to one of the perennial “best hospitals in the world”.

[Dexter Rutecki]

Thanks to all--especially OG for his really thoughtful, extensive PM.

VAC thing is interesting and I don't know if they have considered trying this with him yet. I would assume these places that bill themselves as wound care centers would have that--will check on their sites (I looked before and they listed a lot of treatments, but I don't recall that one).

Buster, just not sure about the balloon/cauterizing thing as his wound is all too apparent (directly through to the inside of his intestine, it seems) so no need to inflate anything to see it, and I don't think cauterizing could help close it.

FC, I might PM you later. Thanks.

One place at NYU lists the following:


Vascular assessment and revascularization
Infection control measures
Proper wound dressing to promote healing
Surgical debridement to accelerate healing
Edema control
Skin grafting, utilizing bioengineered skin that delivers growth factors to the wound
Compression therapy
Pressure relief using customized offloading devices
Hyperbaric oxygen therapy (HBOT)
Pain management
Nutritional counseling
Patient education and support groups

Would the 'customized offloading devices' be the VAC thing? (Sounds like something you'd find on a cargo truck.)

[Dexter Rutecki]

Has he been to Mass General? You’re right next to one of the perennial “best hospitals in the world”.

He and I are in NYC, but if there were a particular reason for him to see someone at Mass Gen we could do it (if there was some particular doc who can figure these things out). He's at Columbia (his docs are there, fortunately he hasn't been in the hospital for a while). He's also at least gotten a consultation from someone at Cornell's wound care place.

[neufox47]

Ahh, I thought you were in Boston or NH.

[detrusor]

Wound vacs can be great. Hyperbaric chambers really do work as well.

Intermountain health has a pretty great set up here in SLC....I bet if you reached out they could put you in touch with a regional center near you.




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[old goat]

Wound vacs can be great. Hyperbaric chambers really do work as well.

Intermountain health has a pretty great set up here in SLC....I bet if you reached out they could put you in touch with a regional center near you.




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I glanced at Columbia's hernia clinic roster--they have several docs that specialize in complex abdominal reconstruction.
Sounds like there's exposed bowel or at least a fistula coming through the wound. I know people use VAC in that situation but I've had bad experiences.

[Dexter Rutecki]

Well, I know that his surgeon who did the two debulkings is actually widely known in the surgical oncologist community for that very procedure--supposedly one of the top dogs, which is why my father went with him. Apparently coming off the chemo to do the surgical repair isn't advisable since they just don't know how quickly the cancer might reappear (the surgery could be successful but he might die from cancer), and surgery while on the chemo is also not possible. We'll see what some other wound care people say, but at this point (and based on the PM's I think you agree) it doesn't seem that there's any obvious solution beyond living with this, which in a lot of ways is a pretty tough way to live (I also just found out that due to allergies he can no longer use the thing he used to use to cover and seal the wound and he's been packing it with gauze or something).

I'll post some kind of update after he sees some of these guys just in case anyone is curious as to what, if anything, they decide to do.

[Flyoverland Captive]

I asked my wife when she got home, and while she doesn’t know any WOCNs out east, she did emphasize that if he’s seeing a wound specialist, be certain they are WOCN certified. If not, keep looking.

[old goat]

I asked my wife when she got home, and while she doesn’t know any WOCNs out east, she did emphasize that if he’s seeing a wound specialist, be certain they are WOCN certified. If not, keep looking.

Particularly important in this case given that there's a fistula.

[PNWbrit]

Best wishes to you and you Dad Dex..

Sounds like an awful situation.

[SumJongGuy]

Wound vacs can be great. Hyperbaric chambers really do work as well.

Intermountain health has a pretty great set up here in SLC....I bet if you reached out they could put you in touch with a regional center near you.




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I have a friend going through this, going on 2nd year of it. Also just had his femeral artery bypassed, foot wound issues from diabetes. It's a tough situation to be in. Best to OP's father to manage the ordeal and vibes for success..

[Dexter Rutecki]

I asked my wife when she got home, and while she doesn’t know any WOCNs out east, she did emphasize that if he’s seeing a wound specialist, be certain they are WOCN certified. If not, keep looking.

Thanks for the advice. I checked through people listed at two of the centers and didn't see WOCN anywhere, but navigating those sites sort of sucks regardless so I assume there may just be incomplete info. I will check once he gets in to a place (hopefully next week).

Best wishes to you and you Dad Dex..

Sounds like an awful situation.

Thanks for the wishes. In a way it's not that bad--he's alive and relatively speaking pretty damn healthy. But on the other hand living with a fucking hole into your GI tract that you have to do all this crazy shit to in order to avoid...shit...is not even close to a good way to live. So I hesitate to speak for him and say things aren't that bad.

I have also felt a little bit like telling people about this in the past (his initial diagnosis, believe, was eight years ago) thinking it might give them hope, but I also feel that doing that could be unfair/misleading. It wouldn't surprise me if he is in some sub 1% group of people who have had this diagnosis and gone on for this long. We're all just hoping the 'luck' continues and maybe we can do something about the fucking wound.

Thanks again to everyone.