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Nail Surgery, with Raynaud's and Erythromelalgia.

skylark15 profile image
15 Replies

Hi, community.

The sun is shining and the birds are singing, or in the case of the starlings, squabbling over the bird feeders. They are just like a bunch of unruly teenagers!

I've been troubled by what is essentially an ingrowing toenail on my right big toe, for several years. The podiatrist has put me forward for surgery, ie removal of the whole nail.

However, I'm rather unsure about it because of the Raynaud's; the cycles of total microvascular shutdown and ice cold, feet, followed by them warming up and suddenly tipping over into an EM flare, with pain, heat, redness and swelling. I'm afraid this seesaw of conditions, which can cycle several times a day, will prevent healing.

My question is: Has anyone else with Raynaud's and EM had this particular operation? How long did it take to heal afterwards? Looking forward to hearing from anyone with experience of this procedure, Thank you.

xx

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15 Replies
Deby177 profile image
Deby177

I've had thumb nail removed but was before Raynaud's got to bad but it healed well was painful but certainly prevented any more infections so long term good results. Hope it works out main thing is after care and guidance and support 🙏

skylark15 profile image
skylark15 in reply to Deby177

Dear Deby,

Thank you for your reassuring reply. I'm glad your thumbnail operation was a success.

I will be a very dutiful patient and accept all the after-care and support that's offered, as well as learn how to look after the wound after the operation.

Best wishes,

Tx

grannyannie profile image
grannyannie in reply to skylark15

So sorry, I actually meant to reply to Deby177.

grannyannie profile image
grannyannie in reply to Deby177

May I ask what the problem was with your thumb nail. I have a very peculiar looking thumb nail, it almost looks l like it has gone mouldy at the side. I have had it since we were in the first lockdown. I have tried various remedies with no success, magnesium sulphate paste manuka honey, tree oil even an anti fungal. No one in the medical profession has actually seen it, I have also had a few antibiotics for other things which haven't helped either.Best wishes

Grannie Annie

Deby177 profile image
Deby177 in reply to grannyannie

I had bad infection in thumb nail, had it removed, to grow back but same thing happened again so had nail bed removed now have no nail at all, ally other nails have infection treating now with fungal, even bought wax type cream to strengthen and nourish nails called hoff cream Raynaud's has lot to answer for think it's down to such bad circulation kills the nails

Treatment
grannyannie profile image
grannyannie in reply to Deby177

Thank you for your reply Deby177, obviously no easy answer, if there even is one. The weather doesn't help.Keep as well as you can, Grannie Annie

Midgebite21 profile image
Midgebite21

Hi, I’m a podiatrist (band 6 nail surgery specialist in the NHS for many years) I also have scleroderma and raynauds. I’m sure your podiatrist will have taken into consideration your medical history and health conditions before considering this course of treatment option. I personally have preformed nail surgery (NS) on many Raynauds sufferers with no adverse affects. As long as you follow all post operative advice regards footwear, redressing and keeping area clean and dry there shouldn’t be any issues. You maybe more at risk from complications from a reinfecting untreated ingrown toenail with regards possible cellulitis and sepsis infections. Healing times maybe reduced by having a partial removal as the wound area is smaller but obviously your podiatrist will know if total or partial is more suitable for your personal case. We carry out NS routinely on patients with many complex comorbidities such as diabetes, MS, rheumatoid arthritis and lupus etc. If they were in any doubt they would not be suggesting surgery as a viable treatment option and would suggest a more long term conservation line of treatment.

skylark15 profile image
skylark15 in reply to Midgebite21

Dear Midgebite21,

Thank you so much for your reply. This is most encouraging

😊.

When this saga began, about 5 years ago, the (involuted) toe nail began to carve out an extremely painful fissure, which then proved a conduit for a fungal nail infection. That eventually cleared up, with successive, lengthy courses of antibiotics. Careful packing & wound care by the NHS podiatrists helped the fissure to heal.

I asked time & again for nail avulsion but to no avail; the answer was always: " No, it's too risky. Your toe may not heal and you'd risk having to have an amputation". Apparently, they had had a catastrophic experience with a diabetic, whose history was either not recorded properly or deficient... I could understand but it's been immensely frustrating.

Finally, last week, a podiatrist i hadn't seen before said she couldn't understand why the procedure hadn't been done but would I like to have the sorry remains (my words!) of the nail removed? Er, yes please!

During this time, my erythromelagia has spread above my ankles and has got progressively worse, which complicates the picture, from my point of view at least.

I am very keen to have the surgery but rather apprehensive about having my toe bound in a dressing which won't stretch with my own poor tissues and skin during an EM flare, hence my question on here. I got very good at dressing the fissure as it healed but this might be more challenging.

Thank you again, Midgebite, for your extremely helpful and reassuring reply.

Best wishes,

Tx

Midgebite21 profile image
Midgebite21

Your more than welcome and I hope it goes well for you and you get some kind of resolution to what sounds like a long drawn out situation. All trusts have different protocols so I can’t comment on dressing regimes used in your trust but from personal experience in my old department the initial post operative dressing was not applied tightly (unless compression was needed due to continuous post op bleeding, which is very rare) and that dressing was changed 1-2 days after procedure by the departmental footcare assistant. After that we supplied simple sterile dressing for application at home by the patient with review of healing in about 2 weeks post op, sooner if issues occurred.

skylark15 profile image
skylark15 in reply to Midgebite21

Hi, Midgebite (your name sounds as if it's from bitter experience!).

Thank you for your good wishes. I've asked for a call from the senior podiatrist, to discuss the erythromelalgia but from what the one whom I saw last week said, there should be no risk from the lupus or the Raynaud's.

The dressings protocol sounds very similar to the one you worked with, and the initial 'bulky' dressing will be changed after 2 days, Then I'll be responsible for re-dressing the toe.

Best wishes,

T x

skylark15 profile image
skylark15 in reply to Midgebite21

Hi, Midgebite.

This is just to say that the nail removal went ahead and went well. The wound took about 12 weeks to heal completely, with salt water bathing and dressings daily (which I got off to a fine art!) and there have been no subsequent issues. The erythromelalgia flared several times, which caused swelling and pain but it was bearable and nowhere near as bad as having the nail carving its way into my poor toe. I'm so glad I had it done. Thank you for your encouragement and sound advice.

Tess

Midgebite21 profile image
Midgebite21

Please let me know how it goes xxx

skylark15 profile image
skylark15 in reply to Midgebite21

Dear Midgebite21,

Well, this is Day 3 following total nail aversion on my right big toe. The procedure was very much as I'd been prepared for and once all the preliminaries were finished the actual surgery took very little time. The involuted edge of the nail had sneakily carved a channel up the side, hidden from view. Removing that was the greatest challenge, I understand. Anyway, it was redressed the next day, with a much less bulky dressing and I'm salt-bathing it every day. I'm expecting the copious serous discharge that's already started and will keep an eye open for signs of infection.

My EM & Raynaud's have been behaving quite well, so fingers crossed. Thanks again for your words of encouragement.

Tess x

Midgebite21 profile image
Midgebite21 in reply to skylark15

Hi, that’s great news. The discharge initially can be quite a worry for some as they think the wound is infected but it is actually the effect of the phenol applied to stop nail re growth. As long as it doesn’t become red, inflamed/swollen and painful it’s fine. It is a very quick procedure. Wishing you a speedy and uneventful healing journey.

honeybug profile image
honeybug

Hi skylark15 🌿🌸🦋

I have a suggestion/alternative to try. I performed this on a child I fostered.

Soak foot in warm water 15 minutes dry off and gently place a thin twisted roll of qtip/swab cotton gently pushed under the nail ingrown side. Do this twice daily and see if it brings the nail out of ingrown position.

It worked for my foster boy. He would intentionally injure his toes for attention. He didn’t like the cure but it worked for him.

What can it hurt to try to prevent surgery and possible flares as I too have cyclical Raynauds and IEM.

Best wishes for success.

Love and prayers.

EJ 🤗♥️🥰🙏🕊🌿🌸🦋

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