Painful blood vessels or nerve endings grow in calluses and make trimming difficult and increasing the pain.
The neurovascular structures (NVS) can be seen or unseen and if get hit causing shooting pain and bleeding.
CARING FOR NVS
Dr. Edel O’Toole, MD, PhD, “NVS…”
In 2019, PC Project surveyed PCers through an IRB approved addendum questionnaire to the official IPCRR (International Pachyonychia Congenita Research Registry). The data from this survey was studied and published in the following article:
XL Tan, BR Thomas, L Steele, J Schwartz, CD Hansen, EA O’Toole. Genotype-phenotype correlations of neurovascular structures on the feet in patients with pachyonychia Congenita: A cross-sectional study. J Am Acad Dermatol.2022-02-050.
Lay abstract from author, Xiang Li Tan: We conducted a questionnaire study on neurovascular structures on the feet in pachyonychia congenita (PC). Neurovascular structures are nerve and vessel bundles often found in plantar calluses (hard, thickened area of the skin at the bottom of the feet). Neurovascular structures are sometimes found as small black blood spots that are very painful, worsening the plantar pain. These may also bleed when paring the calluses. Our aim was to find out whether any PC-subtypes or mutations are associated with the presence and characteristics of neurovascular structures. We also studied how they affect patients’ quality of life. Through surveying nearly 300 patients, we found that some PC-subtypes have different likelihood of getting neurovascular structures and are affected differently by them. A better understanding of the effects of neurovascular structures on patients and the new findings on their links with specific genes will help ongoing development of treatment for PC.
PATIENT TIPS & COMMENTS FOR NVS
K6a patient “We have a question about a specific symptom. As you know, one of the symptoms of PC is extra sensitive skin that leads to callus, especially on the feet. Even if this is manage by cutting away the callus on a regular basis we will get small blood vessels (and nerves) that grows into the callus. Cutting in to these blood vessels/nerves will cause bleeding and extreme pain. The result is that we can’t cut away the callus that we need to especially around cracks. This is how it will look after a regular trim of the callus.
Do you have any advice?”
Dr. Edel O’Toole: I have heard patients say that they pare down as far as the bleeding point and then stop. I have also seen patients try and pull out the nerve vessel bundle with they say relief, but looks very painful. In the UK we have lignocaine in a plaster (Versatis) and sometimes if a patient has one isolated extremely painful spot, sticking a little bit on the affected area helps. I have heard of people using silver nitrate and that usually does not hurt. It stops bleeding, sometimes helps pain and could kill cells superficially (eg blood vessels and nerves).
Dr. Phil Gard: Similarly I’ve heard a few PCers say that they make a point of paring down the sites as close as possible, reported it as grim to begin with but a lot better with regular use.
Dr. C. David Hansen: We seem to encounter these commonly but have no specific suggestions for management. This will be a major consideration in a future study. I also wonder if a vascular laser may be helpful in destroying the vessels. I would suggest their dermatologist inquire about laser treatment of vascular lesions.
PC-K6a: I personally use either a ped egg or a rough pumice stone to whittle down the calluses. Since the blood vessels developed in my calluses, I have mostly given up razor blades/scalpels for trimming. Tools such as the ped egg make it easier for me to “feel” and control the depth while filing down, rather than make my calluses bleed with an accidental slice of the blade. Most of the calluses on my feet look like the ones the patient included in the pictures, with occasional bloody spots that one can’t always spot while trimming – until the spot is hit.
However, my heel calluses have become quite covered with blood vessels in the past years. The calluses don’t cover the bloody spots. They simply grow out together. So unless I want an extra thick mess of callus and blood vessels, I trim.
To stop the stinging/burning, I sometimes apply Americaine, a hemorrhoidal ointment. The active ingredient is 20% Benzocaine. The ointment is gentle and gets down into the bloody spots to numb the pain for a bit.
PC-K6a: I also have severe problems with blood vessels and nerves coming through the calluses. It’s so painful! I unfortunately have found nothing to help that except cutting around that or enduring the pain. It would be awesome if you could also tell me what others said concerning this question. Thanks!!
PC-K6a: I cut these blood vessels every now and then (actually it happens more and more often as I grow older): in all cases except one I found that removing the callouses around the blood vessel and the part above it until you get really close to it (but without hitting it) leads to a general improvement, that is the blood vessel seems to pull back. Of course the statement is based merely on my observation and I have no idea whether the cause-effect relationship that I observe is valid… In my experience I get better results (in terms of quality of life and blood vessels) with less deep trimming performed more often (every two weeks).
K16 patient: “At the moment, I can cut my skin quite low as I had an operation to remove all the callous in January. For a while after having this done, the skin is not so ‘wet’ underneath and also not so sensitive, and the blood vessels do not start to grow back into the callous for ages if you can keep the skin low. I have had a podiatrist take the skin too low before now and I have then had problems walking (because it becomes far too sensitive). I think it needs to be explained to them that getting the skin as low as possible is not always the best thing for PCers — it makes the pain worse, not better. I guess because they have been taught to remove as much callous as possible from all patients, then they feel this is what is best for everyone. I tell them to stop when I feel it is low enough — sometimes they protest but hey….they are my feet! I find the best thing for me is to trim them once a fortnight. Any longer than that and the pain can get worse, or more frequently than that and they can get too sensitive. A podiatrist once told me that it is better to rest your feet for a day after they have been trimmed to give them a chance to ‘heal.’ I find it really helps to do that if possible, and there is much less pain.”
PC-K6a: I wish I had an answer, but unfortunately do not. I suffer from the blood vessels/exposed nerve endings all the time. Yes, they are extremely painful. My podiatrist uses silver nitrate after trimming to try to stop the re-growth and exposure. I also just started using a hemp salve which does help. And I always use the good old stand-bys of Vaseline, Neosporin and Bactroban.
PC-K6b: This is a problem that I myself have, as well as my sisters and sons who have PC. What I do, which has been quite active, is after debridement of the lesions, use silver nitrate on them. This stops the bleeding and makes that much less sensitive, and tends to make them less prominent in the future. I would not necessarily recommend cutting them out, because you run the risk of developing scar tissue which can be painful. Would definitely try the silver nitrate first, as it has been quite helpful.
For those of you who have neurovascular bundles in your calluses, how do you know they’re there? Can you visibly see them? Or do you see them when you trim? Or both?
K16 patient “I can sometimes feel them but only bleed when cut by podiatrist , but I know where every little one is because there is a funny feeling”
K6a patient “If I use a razor blade and cut too deep I first will encounter a nerve. Sharp excruciating pain. If I went deeper I will hit nerve and blood. When I use sand paper I sometimes get a slight feeling like a small electrical shock, closest I can compare it to is the feeling you get when you lick a 9 volt battery, warning me I am getting close. Other times when sanding I hit the nerve directly and that is extremely painful. I have never seen them unless I hit blood. The other way I know they are there is when the callouses split into multiple plates. These can catch on socks and get pulled back. Resulting in pain. Each of those plates are extremely sensitive to any pressure.”
K16 patient “I only see mine when I trim the callouses. I have certain spots that always bleed and always hurt. They seem to be the closest to the surface in those areas. Also, I get shooting pains from the bottom of my feet all the way to my abdomen.”
K6b patient “I don’t see them until after I have trimmed over them. There is a sharp pain and a small drop of blood will form. The next time I go to cut there may still be a small black spec where I bleed before. I’m careful when I trim over it a second time because it may hurt.”
K16 patient “I find them by mistake, usually trim a little too much..”.
K16 patient “Hideous pain, shooting pain, often for 48 hours until it settles. Usually know where they are before I trim as they hurt but the odd new one catches me out.”
K6a patient “The pain when I catch neurovasculars with scalpel is excruciating – like an electric shock straight into the brain. It’s instant but quickly over. They will bleed a little too.”
K6a patient “Yep, they are purple or white dots when you trim too close. I see those and know to stop, that I’ve gone too deep and any further I will regret!”
K17 patient “I have not had them in a while. If I keep them trimmed very close and lotion or cream on my feet before bed, they do go away. At least for me, but it is a constant battle. I’m retired now and not on my feet for 12 or 16 hours so the problem is essentially gone as long as I trim them close to normal skin. Yes, it does hurt but not trimming them hurts far worse and prevents me from doing things.”
K16 patient “I see the blood vessel end and feel extreme pain when I have to trip the callous in the area. If I cut to low they bleed.”
K16 patient “I have them on one side of my heel and on the other foot on the center of the ball of my foot. I usually see them as a black little dots when I start trimming, and then a shock of pain and a slow and steady streaming source of blood when I inevitably knick them because they’re so shallow.”
K6a patient “Oh man, i have accidentally cut my callous too short and cut into a nerve bundle with a sharp edge razor blade Not fun. You can see them sometimes through the callous.”
K16 patient “Mine look like the photo on the left when I trim very, very, close like I like to. Hurts a bit initially but gives me more good days. Seems like blood vessels ( if that’s what they are) retract after months/ years of extremely closely trimming callouses.”
K16 patient “I hope mine recede soon. I don’t even have to trim too closely for them to get caught and start bleeding. At times it feels like they actually extend if I cut down too low.”
K16 patient “Painful when cut for sure maybe nerve ending as well embedded in the callus.”
K16 patient “It’s sad our PCfamily is familiar with this.. personally I think they are nerve endings (capillaries). Because they hurt when you cut through them, if they’re ‘healed’ they are very itchy!”
K6a patient “I have these under the calluses on both of my heels. I can’t even trim the calluses too low because they bleed. Trimming too low is the worst for me..so painful.”
K6a patient “The tips if caught whilst de-briding send what feels like an electric shock right into the brain, excruciating! I’ve learned not to shave too close. Treatment with silver nitrate sticks (can be purchased on Amazon) definitely seems to “kill” the nerve ending making much less painful when removing callous.”
K6a patient “Whatever they are they really 😢 HURT”
How do you manage or care for the neurovascular structures? Please include any medication or treatments you find helpful.
K16 patient “Keep them clean so they don’t become infected.”
K6a patient “I soften them with Neosporin. Then, I peel off large chunks of callus as opposed to trimming them. It is too painful to trim due to the nerve vessels in the calluses.”
K6a patient “silver nitrate, cold sprays”
K16 patient “There is usually a gooey blister inside the nail of the callous around the blood vessel/nerve things. I trim as much as I can around them. The nerves seem to “retrieve” after a few days of being “aired”, after which I am able to cut more. When the blister dries out, the nerve/pain usually goes away completely. Or if I don’t know there is a nerve in the callous or the nail, I just cut and scream.”
K17 patient “I carefully trim, usually, I just sand the callous however I occasionally have to trim with a knife and this can be painful and it will bleed as well so I have to treat with antibiotic ointment and bandage”
K6a patient “Silver ointment. Antibiotics”
K6c patient “They are always there, under the callus. I notice them more if I do not shave back the calluses. Example: if I wait too long to shave my feet – it will be very easy to nick the nerve and cause bleeding. They seem to “push back” if I shave at least once a week.”
K6a patient “Just manage to live with them. There is no way to get rid of them.”
K6a patient “I haven’t done anything to treat them. I always thought I created them by cutting too deep when paring my calluses. So, I just try to use a light hand when I have them.”
K16 patient “I usually do a bit of zinc oxide/ diaper rash cream. I also just stop trimming/shaving the callous when I’ve reach a neurovascular structures and it starts bleeding.”
K16 patient “No treatments. I just try to watch how closely I shave the calluses. If I cut too deep, I can draw blood, usually only a tiny amount.”
K16 patient “I cut them away like they are a normal callus.”
K16 patient “Callous removal is limited in the area I have these.”
K16 patient “Shaving my feet they bleed, sometimes I am able to pull them out, but that is painful. I haven’t found much to help with them.”
K6a patient “Cover with tissue until bleeding stops”
K6b patient “Keep calluses trimmed close to skin level, seems to help”
K16 patient “I just cut them carefully to not blood. When I was young, it was more frequently. Now a days I don’t have it too much.”
K16 patient “They seem to go away themselves easily but can bleed if I cut to deep or too often. They don’t cause any more pain than usual. I prefer to treat my own feet as a professional could easily cut too deep and catch a nerve.”
K6a patient “I just soak in warm water and use a single edge blade to trim.”
K16 patient “Nothing-try not to shave them to the point of bleeding”
K16 patient “regular maintenance of callouses”
K6b patient “Try to trim as usual”
K6a patient “Trim the callous and use ice pack to ease the pain”
K6b patient “Not really possible, I stop cutting away calluses when I hit a blood vessel”
K16 patient “When treating my feet I try to avoid it, or cut it quickly.”
K6a patient “Ellgy, Corns & Warts Solution A few drop of this onto the Callus itself over time seems to help dry out the blood vessels. This then helps to trim it down and keep it under control. The following, (Both solution 1 & solution2) must be mixed in equal parts and then rubbed into the dry skin or affected areas. This has seem to really help keep the feet clean/about 50% less itchy sensation and seems to also reduce the speed it grows. An uncle of mine who is also affected, claims that almost all his dry skin has gone or atleast reduced significantly. SOLUTION 1 Salicylic Acid 20% Urea Cream 20% Aqueous Cream 60% SOLUTION 2 Salicylic Acid 20% Betrogen Cream 10% Aqueous Cream 70% Actual physical care of course is trimming all the dry skin with the ‘Drimmel’ (super good), before a shower, and feet must be first washed well with ‘Bactoscrub Anticeptic Solution” at least twice a day.”
K6a patient “I treat them the same as any other callous, simply cutting down with a scalpel approx. once weekly.”
K16 patient “I just allow them to heal and am cautious when trimming the callus”
K16 patient “Vaseline with socks”
K6a patient “try to sleep 8 hours to help healing the blood spots, any king of healing cream, but in general only time will help.”
K17 patient “Use of Lidocaine plasters and Flaminal Forte”
K6a patient “I use a cream called Vioform Hydrocortisone then I add cotton balls and then covering them with a Band-Aid to keep some of the pressure off.”
K6a patient “I have not found anything that improves the neurovascular structures, I just have to be extra careful to trim/sand around them, so as to avoid severe pain and/or bleeding.”
K16 patient “Leave Callous Thicker”
K6a patient “My chiropodist trims my callus using a scalpel and then uses silver nitrate to cauterise the blood vessel.”
K6c patient “I always try to work around them. Over the last decade, I have been intensely working to dry out my feet. This has helped some issues but caused other problems. I think that this drying effort has been the most helpful in the area involving my neurovascular structures, which is why I continue to do it despite the other problems caused.”
K16 patient “Nothing. Only an issue if I cut through them. And I have very few. So I just cut around them and they seem to sort themselves.”
K16 patient “Don’t treat. Just apply tea tree oil and use plaster to protect for few days”
K16 patient “When “grooming” feet, I will use a topical number and attempt to create a surface that doesn’t snag on socks or protrude beyond walking area. Basically suffer until it heals”
K17 patient “Use razors to shave the callus or clip with nail clippers. Sometimes I will use a high powered grinding tool”
K16 patient “Need to carefully shave calluses. Too close causes increased bleeding and pain. Sometimes I coat the bleeding calluses with Super glue. Seems to seal them and lessen the pain”
K16 patient “I have to numb that area before I cut my feet and if they get any sort of trauma that day, it will be excruciating pain that night.”
K16 patient “When they appear, I wear extra padding and socks to provide as much cushion as possible, stop all trimming for a while, and stay off my feet as much as possible.”
K17 patient “Just live with it”
K16 patient “They are so very painful. I began getting them in my early teens and they diminished after I became older after my 40’s. Usually what I would do is have a glass or two of wine to dull the pain and cut them all at the same time.”
K6a patient “Prescription Lidocaine ointment and trying NOT to cut into them! I often need an opioid strength pain reliever when I’ve accidentally upset on of these, the pain is as if you hit the nerve of your tooth during a root canal.”
K6b patient “I use ped egg 1x per week. When I have time I soak my feet in Johnsons foot soap or epsom salts. When the core pain gets bad my brother who is a podiatrist will shave the cores and put medicine on the core to kill the pain.”
K6a patient “Use glue to coat callouses and prevent snagging when using shoes or socks, on sheets or blankets when I sleep.”
K6b patient “My neurvascular structures are well below the surfaces of my calluses. They come into play only if I trim calluses too close. Only on a couple of calluses. They were much worse when I was a child and young adult.”
K6a patient “I have to cut them down until it starts to bleed. I use a scalpel and footfile. You has to settle because it hurts a lot. Daktacort cream with miconazole. nitr. + hydrocortisone relieves itching. The older I get, the more neurovascalar I get. I find it harder to take care of my feet myself but the podiatrists doesn’t do what I ask for so I have to remove the neurovascalar myself anyway. It’s incredibly painful to get them down until it starts to bleed and then the pain releases. I fix my feet twice a month, small fixes a little now and then.”
K16 patient “I take daily OTC pain relievers (1000mg Acetomenophin; 200mg Ibuprofen; 325mg Aspirin)”
K6b patient “I warn the podiatrist when he is getting close to the structure (he doesn’t always listen and then he spends a while trying to stop the bleeding). I wear large padded plasters over the worst areas of my heels if I am going to be walking far”
K16 patient “Avoid trimming that cuts through neurovascular spots”
K6b patient “When I have them, the only struggle is the bleeding and pain when I remove the skin”
K16 patient “Tea tree oil and cover with tape”
K16 patient “Take some painkillers. Treat it symptomatically.”
K6a patient “I try to trim them most of the time or I’ll use a soothing creme. If the pain doesn’t go away I’ll take pills (Brufen).”
K6a patient “Trim them with clippers, and the areas around them. Not trim too often, avoid except when absolutely necessary.”
K16 patient “Burt’s Bees Hand Salve”
K16 patient “I either try to cut around them (which is nearly impossible because sometimes they are invisible) or I just leave them. It seems that after a while of not trimming them they go away a bit. However, when trimming, I always use a scalpel in the areas most affected (in my case both of my big toes) to work more precisely. That takes a lot of time though. In areas where I do have them but not as severe as on my toe, I.e. on the callous below the big toe on the ball of the foot and also on the heel I use a trimmer that is not as precise (razor blade in a holding device).”
K16 patient “Just shaving Calluses to make blood out. If the blood stay there it makes infection and makes more problems.”
K6c patient “I’ve never really known of any way to treat them, so I just endure. I have, in the past several years, stopped using razor blades on my feet and now use the grinding tool called Amoporé (I think), which has helped reduce the severity of damage done to them when paring down the calluses. Even with the grinding tool the neurovascular structures get affected, but I guess I have more control as to the depth of reduction than I do with a razor blade. They are still quite painful and very apparent, but I don’t feel that I’ve actually “cut to the root of a nerve”! Before my sister and I found out about PC and got diagnosed, we used to think they were just tiny blood vessels. Once we found out they were neurovascular structures, we understood why the pain of those tiny spots would absolutely take our breath away and send us to the moon!!!!”
K16 patient “I try to be as careful as possible when paring the callus on my feet so to not cut into the neurovascular structures.”