• Announcements

    • Joelf

      Upgraded Sclero Forums!   05/18/2017

      Welcome to the Upgraded and Redesigned Sclero Forums!!   Our Forums are even better and more up to date than before.   Happy Posting to all our Members!!
Judy Devlin

From finger ulcer to amputation

29 posts in this topic

I have had several digital ulcers over the many years of my SD, even before I was diagnosed. A hang-nail, paper cut or dry skin crack on a finger tip would often take months to heal. I got good at taking care of them with betadine, neosporin, bacitracin and even active manuka honey and occasionaly a prescription of antibiotics; warm water with epsom salts all worked for me in the past. However, my newest finger ulcer, which started as a hang-nail in October 2008 has been quite different.

 

In the beginning it progressed, got better, worsened, over and over again. Those of us who have them know they are more of a nuisance and we go with the flow. In January I showed my rheumatologist when it didn't look too bad, but I mentioned how my other fingers were painful and I wondered if it was sympathetic pain or maybe I was becoming allergic to latex from the bandaids. I asked for an antibiotic but we both got side tracked and I left without that prescription.

 

In the next couple of months the finger pain became unbearable, something I had never experienced with any other digital ulcer and I started making phone calls, but my doctor was off on the days I called and a very unhelpful receptionist would tell me to call my Primary Care doctor, which I didn't have, so I'd ask if I could leave a message etc., to no avail and I'd slam the phone down. Eventually I ended up driving myself to a local ER as the pain was horrendous. The ER doctor told me he couldn't do anything and referred me to a surgeon with the hope that the surgeon could at least clean it out. The surgeon said she couldn't help and did not know much about SD so contacted my rheumatologist and another surgeon at the Medical Center I usually go to.

 

The plastic/vascular surgeon did an ultra sound with a small portable one (very cool piece of equipment) and discovered I had an artery blockage. We have two arteries that go into each hand. My left hand read two arteries working fine, my right hand with the ulcer only registered one. Voila! No wonder the ulcer wasn't healing. He did xrays and discovered that as a result of my badly infected ulcer I now also had a bone infection and amputation is the only option.

 

They have to find the blockage to treat that before he'll operate or the amputation won't heal.

 

So some tips I learned in this process. Water is not good for digital ulcers unless it's sterile. Wound should be kept dry when its festering. The surgeon gave me something that I'm guessing only surgeons and those who tend to wounds know about. It may be available without a prescription but I'm not sure. Anyways if anyone has an ulcer try to get a silver-coated absorbent dressing. (If you PM me, I'll let you know the brand.) It's like a piece of felt that you can cut to size to cover your wound/ulcer. You just lay it on the wound and bandage. This dressing should be changed every 2 or 3 days. And don't get it wet. Only sterile water (Where does one get that??) should be used if you need to loosen it when you change your dressing.

 

So, don't assume an ulcer that doesn't heal is just a typical SD digital ulcer. Seek a vascular doctor about possible blockage, especially if experiencing severe 'prickly', moving sharp pains and a deep bone ache in the extremity. (I thought the bone ache was just arthritic stuff.) Also, the thing that is most surprising is 'warm water baths' are not our ulcer's friend.

 

The amputation will probably occur within the next couple of weeks. In the meantime I am being so so careful that I don't cut another finger.

 

I hope this helps others here with digital ulcers. I'd be interested in hearing from anyone who has had an amputation and how long it takes to heal, adjustment, etc.

Thanks,

Judy


There are over 1,000 patient and caregiver stories on the main Sclero.org site.

Warm regards,

 

Judy Devlin

ISN Archive Committee Chair

International Scleroderma Network

Share this post


Link to post
Share on other sites

Hi Judy, sorry to hear about your vascular problems, and the reminder to keep to keep ulcers dry.

 

Regarding the sterile water, I think it is possible to make your own. You need to prepare a sterilised bottle/jar and cap/lid - can use baby feeding bottle steriliser .

 

Boil normal or bottled water for 5 minutes. Then put boiled water into container.

 

lizzie

Share this post


Link to post
Share on other sites

Oh Judy, I am sorry to hear this. What a shame, but thank you a million times for posting the great information. That's one tough learning experience!

We have information on our digital ulcers page that includes a link to a
Wound Care Product List. I remember 30-odd years ago doctors were using silver sulfadiazine on wound dressings for bad burns.

Lizzie is right about making sterile water at home. You can also get a prescription from your doctor for sterile saline solution that your pharmacy can fill. And, by definition, distilled water is sterile, but since it comes such large jugs, it's hard to keep it absolutely sterile.

I know we have several Forum members who've had amputations so they can give you their experience and advice.

I can only contribute the story of a lady I met one time when we were both having difficulty getting a 'stick' done for an arterial blood gas test. She'd lost several fingers on both hands (due to scleroderma digital ulcers). I'd never seen a 'scleroderma hand' and asked if I might look at hers, explaining I was newly diagnosed. She was just great about it. What I'll never forget though, was her excitement about the delivery that week of a new 3-wheeled motorcycle with custom engineered hand controls! She was going to be able to take the grandkids riding around the ranch again. Now that's what I call a positive adjustment.

Best wishes and warm hugs,


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

Share this post


Link to post
Share on other sites

When I get my ranch I'll remember this story..LOL! Another friend after I told him of my upcoming amputation sent me a video of a guy with no arms playing a guitar with his toes. Both are hopeful images.

 

But nevertheless, it is quite traumatic for me right now.

 

I have been paying attention at the everyday things that we use our middle fingers for and it won't be a big loss:-)


There are over 1,000 patient and caregiver stories on the main Sclero.org site.

Warm regards,

 

Judy Devlin

ISN Archive Committee Chair

International Scleroderma Network

Share this post


Link to post
Share on other sites

Judy,

 

I am so sorry you have to get through this. I know it must be really hard on you. Thanks so much for the tips. I have not gotten any ulcers yet. I do have very very bad Raynaud's, and when I get cuts they really hurt and take a while to heal. A couple months ago my toe started to get an ulcer. It hurt really bad and was a small spot. We went on a vaction to Cayman Islands and it seemed to help it heal. The warm sand did wonders. I am hoping with the warmer weather I will have better results.

 

Many hugs,

Nina lynn

Share this post


Link to post
Share on other sites

Thanks for the hugs, Nina. Its amazing how painful our toes and fingers can radiate when they're affected with Raynaud's vasculitis and ulcers.

 

I've had Raynaud's since the early 70s so I know there has to be lots of vascular damage.

 

A tip for Raynaud's in the feet- wool or cashmere socks. Light weight in summer and heavy weight in winter. Although a warm climate is probably better.

 

I live in NH and it has been a very cold and dry winter which didn't help with healing. I couldn't keep enough lotion on my hands before they would dry out quickly. But my toes were fine with wool socks:-)


There are over 1,000 patient and caregiver stories on the main Sclero.org site.

Warm regards,

 

Judy Devlin

ISN Archive Committee Chair

International Scleroderma Network

Share this post


Link to post
Share on other sites

Wool socks - absolutely! I've been knitting little lacy numbers for the summer, very girly, according to my Handsome Hubby. :D


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

Share this post


Link to post
Share on other sites

Hi Jude,

sorry to hear about your amputation, I'm sending you lots of warm hugs and heartfelt wishes to get you though this difficult time ,

(((((jaxsx))))))


live life for today and not for tomorrow

 

Share this post


Link to post
Share on other sites

Hi Pam,

Thanks for your support.

Even though we all know the ups and downs of our disease, some have it much worse than others, we or I tend to minimize it not only for myself but for family and friends, thinking that the gruesome stuff of SD 'isn't going to happen to me."

 

But even after doing the 3 Voices of Scleroderma books and editing hundreds of personal stories for ISN, and being quite aware of what could happen I was not prepared for this.

 

One thing we can always count on with SD is there are lots of 'surprises'.


There are over 1,000 patient and caregiver stories on the main Sclero.org site.

Warm regards,

 

Judy Devlin

ISN Archive Committee Chair

International Scleroderma Network

Share this post


Link to post
Share on other sites

Judy,

 

The wool socks work sometimes for me. I also have worn sheepskin lined boots all winter. Sometimes the wool socks make my feet sweat and it makes them worse. Gloves don't work for me either. They just stay purple in the gloves. It has been a hard winter. the raynauds has effected my poor nose now! it makes my nose sore inside. I need nose gloves!! LOL I have tried meds for the raynauds but the meds make me sick, because I have really low blood pressure and they lower it. It is really frustrating. I am sorry you are going through this.

 

Much hugs,

Nina Lynn

Share this post


Link to post
Share on other sites

Wow, Judy. So sorry to hear about this latest development, but thanks for sharing your experience with us. I am so grateful for all you have done editing the personal stories and your work on the Voices of Scleroderma series. I do read the technical medical information but to me those personal stories (and those here in the forums as well) are the way I absorb the 'feel' of things.

 

Nina Lynn, the important thing to remember with both gloves and socks of any kind is they will insulate cold as well as warmth. If your feet or hands are cold to start with, the protection will keep them that way. You have to get your hands and feet dry and warm before putting on the socks and gloves.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

My heart goes out to you. To think of all of the suffering that you have had to go through with this is unreal. If someone would just do their jobs and take care of you when you were first afflicted. It just amazes me on how much fighting and pushing has to be done in order to get the type of care that a person needs. I so hope that this is the last time you have to go through this and I can't thank you enough for the heads up.

 

Warm hugs,

 

Peggy

Share this post


Link to post
Share on other sites

Hi Judy ,

 

I can't begin to imagine the pain you are dealing with. I will keep you in my thoughts daily.

 

Take care, Everyone.

Margaret

Share this post


Link to post
Share on other sites

Judy,

WOW - what an ordeal! Thanks for sharing the story. We learn so much from the experience of others. Sorry for everything that you're going through and will be going through. My heart goes out to you girl.

 

Big, big hugs,


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

I'm heading out for a duplex ultrasound this morning and another appointment with the surgeon. Hopefully they'll locate the blockage and I can get this latest fiasco behind me.

 

I lost my cable yesterday for 3 hours which prevented me from responding to those of you who posted. Yesterday was also my 3 year anniversary since my alcoholic husband deserted me. Yippee! and Good Riddance! LOL! Life goes on with or without scleroderma..

 

I want to thank everyone for your words of support. I still hope someone who has had an amputation would respond so I would have some idea of what the adjustment will be like.

 

Take care,

Judy


There are over 1,000 patient and caregiver stories on the main Sclero.org site.

Warm regards,

 

Judy Devlin

ISN Archive Committee Chair

International Scleroderma Network

Share this post


Link to post
Share on other sites

Hi Judy,

I am so very sorry you have gone through all this and so quickly! I can only imagine the pain and discomfort you are in. Please keep us posted on your visits today! I'll be thinking of you!

 

Hugs,

Lisa


Lisa Bulman

(Retired) ISN/SCTC List Coordinator

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Fundraiser

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Hi Judy,

 

As you know, I'm sending lots of good thoughts your way. I'm just so sorry you have to go through all this! You have done millions of wonderful things for the ISN -- produced the whole series of Voices of Scleroderma books and edited and prepared over 800 personal stories on the main site. It's a crying shame your doctors couldn't do one little thing for you, like getting your ulcer under control before amputation became the only option. But here's hoping that with good care and our support, your healing journey will be successful and you'll be in less pain.

 

Congrats on your three year Free-A-Versary!!!


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

Share this post


Link to post
Share on other sites

Thanks Shelley,

Just got back from seeing the surgeon and having the ultrasound, after driving in 16 degree temperature only to find my truck has no heat!! Must be the thermostat broke so now I have to fit that repair in somehow.

 

Anyway the duplex ultrasound only showed the artery has being very constricted, about a third of an opening but no blockage there so they are scheduling an MRA and angiogram in the neck artery as locating the blockage is key to having a successful amputation healing. Meanwhile the worry is whether the bone infection will spread, and the possible negative affects of the angiogram dye on my already compromised kidneys. Two surgeons discussed the options with me but most of it didn't register as I am also extremely hard of hearing. I don't know whether to laugh or cry! Plus because of my colon inertia, I am SO constipated! Ugh!!

 

I'm overwhelmed right now and need to tend to my bowels before I can think straight. (Funny how constipation affects one's brain...)


There are over 1,000 patient and caregiver stories on the main Sclero.org site.

Warm regards,

 

Judy Devlin

ISN Archive Committee Chair

International Scleroderma Network

Share this post


Link to post
Share on other sites

Dear Judy,

 

I am so sorry to hear what you are going through. Thank you for your considerable contributions and all your hard work, you are amazing! I also wanted to thank you for your story because it was something I didn't know until recently. Late fall, last year, I was doing yardwork and used my weedwacker for over an hour. The constant pressure on my middle finger from holding the weedwacker did something to cut off the circulation along my middle fingernail. Over time I thought it was a regular ulcer and treated it as such until I noticed it wasn't healing, it was dying off. It had dried to a very hard scab and wouldn't fall off. I left it alone, kept it covered and showed it to my rheumatologist who kind of shrugged it off as something that would eventually heal. I finally read something about arterial blockage. I now realize how important it is to differentiate fingers ulcers from necrotic ulcers. They both heal differently and should be treated differently. Long story short, the scab fell off and left an indentation and the fingernail bed has been pushed up but I did manage to save the finger. Eight years ago I lose the tip of the index finger on the same hand, so now I need to keep an eye on my right hand fingers. I will also ask about seeing a vascular doctor to have that duplex ultrasound done.

 

I hope everything goes smoothly for you. :)

 

Hugs, Razz


Live well, Laugh often, Love much

Share this post


Link to post
Share on other sites

Hi Razz,

Like you I have had repeated ulcers on the same fingers, especially my middle fingers with gangrene in both over 30 years ago before I was diagnosed and shortly after my Raynaud's started. I think, even though they might heal, there's a lot of damage still done. As tiny as the finger tips are and with how much we use (and take for granted) them it's really amazing that we don't have more problems.

 

But the blockage issue was a surprise, but it does make sense. The pain was different and affecting all my fingers. The irony right now is my ulcer finger isn't hurting much since they gave me that silver treated felt-like covering. I really suggest anyone with ulcers to try to get some. I've checked and it seems to be available on-line, though I've not seen it in any of the drug stores near me. One piece lasts a long time because you only cut a piece big enough to cover the wound.

 

I don't even want to think about yard work..:-(

 

Take care,

Judy


There are over 1,000 patient and caregiver stories on the main Sclero.org site.

Warm regards,

 

Judy Devlin

ISN Archive Committee Chair

International Scleroderma Network

Share this post


Link to post
Share on other sites

Oh Dear Judy...what you have endured!

 

You really are something!

 

I have not had the digital ulcers, though I had a great friend who did. Technology has advanced, as has the knowledge, provided one has the fortune of connecting with the right doctor(s)... since her experiences.

 

I will definitely keep you in my thoughts as you get everything lined up.

 

(BTW, I congratulate you on your "Three Year Anniversary"...I believe this calls for a party! I'll get the decorations together)!

 

Sending you lots of {{{{Soft Hugs}}}}, Judy.

 

Thanks so much for letting us know and if possible, please let us know how all goes?


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Hi Judy,

 

I feel your pain. Been through exactly what you going through. It turned out that the doctor would not even consider an amputation because of the lack of blood flow to the area, he said it "would never heal". Here's what they did, maybe it can help you. First they did bi-lateral thoracic sympathectomies, one at a time. To make a long story short, they go into the nerves along your spine that are responsible for vasoconstriction in the fingers and sever the nerves. It is supposed to stop the constriction of vessels. It worked on one hand but not the other. The side effect is I don't sweat from the waist up on one side, apparantly they also use this operation for excessive sweating, and so on the side it worked on, I don't sweat.

 

The finger that was "going bad" did indeed cause hand pain so severe I was screaming in the ER. They put me on increasing doses of a strong pain medication until I became tolerant, then went to stronger meds until finally I was on a patch for almost a year while my finger amputated itself with gangrene. Just the tip. Now I have this tiny sort of hooked finger left. But the memory of that pain is still there! I'm so sorry for you!

 

Ask your doctor about the sympathectomy, it's worth a try and may stop the necrosis from spreading. I wanted an amputation too, Just take it away! was how I felt, I didn't want a year long ordeal while my little black finger slowly died but they explained how it would never heal if they cut it off. Now, I'm glad they didn't. Unless I point it out, not too many people even notice. I wish you lots of love and luck in whatever you and your doctors decide. I too only have one artery in each wrist and have to baby my hands constantly.

Love and hugs,

Karen

Share this post


Link to post
Share on other sites

Hi Judy and Karen,

I have suffered through a similar experience to yours. I had a finger ulcer and no one seemed to know what to do about it. One medicine after another failed. I went a long time without proper pain medication. To make a long story short, someone finally sent me to a pain management doctor who eased my pain at once! I was put to sleep and given a ganglion block and prescribed some medicine that killed the pain, which I took every four hours. This block was supposed to force blood into my fingertips. Apparently it did. It involved putting a needle into my neck and doing something. It didn't hurt a bit because I was anesthetized.

All in all, the finger took about a year to heal. It got gangrene and self-amputated the tip. Several doctors wanted to amputate, fearing bone infection. But one plastic surgeon I really liked and trusted said NO. He said what Karen’s doctor said: It would never heal. Leave it alone.

I still remember the pain, too, Karen!

Anyway, shortly after that one healed, I started getting another one on the other hand! Fortunately, by this time, doctors had discovered that Viagra and Cialis work great to heal these and also to prevent them in the first place.

My doctor keeps up, than goodness, and she put me on Viagra. Although that ulcer started out like a bad one, after starting Viagra, it healed in about a week!!!! If you haven’t already started on Viagra or Cialis, please ask your doctors about it. The idea of those E.D. drugs is to force blood into the extremities and that includes fingers!

 

Good luck!

 

Mary in Texas

Share this post


Link to post
Share on other sites

Hi Karen,

Thank you for responding. I'm relieved to know someone who knows how bad the hand pain can be as I thought maybe I'm just being over dramatic or a big baby. But this pain is knee-dropping pain! Sorry you went through it too. I do have some heavy duty pain meds for back up, but since I've been using the silver treated absorbant pad, the pain has almost stopped... for now.

My surgeon has considered the sympathectomies but said they might cause other issues for me.

I think also, because of the bone infection, the finger has to be amputated as the only other possibility for that is a 2 to 6 week antibiotic drip which may or may not stop the infection and the time factor could just prolong this situation, so...

 

I've had gangrene in the tips of both middle fingertips years ago that didn't affect the bone, and they were just cleaned out and the tips self repaired and have been fairly normal looking since then.

 

The bone involvement makes this different. I'm worried about the bone infection spreading and so is the surgeon.

 

On a side note it's been really interesting watching how the surgeon and his team are planning their strategy, and how one will suggest doing 'this' and they pro or con the whys or why nots of each potential procedure. They seem to really enjoy the challenge part of it. Lots of it goes over my head with all the doctor jargon, (but I have a computer so I research as soon as I get home so I better understand. :blink: )

 

The other difficulty for me is not knowing what kind of 'blockage' that could be lurking, I feel like a ticking time bomb.

 

Take care,

Judy


There are over 1,000 patient and caregiver stories on the main Sclero.org site.

Warm regards,

 

Judy Devlin

ISN Archive Committee Chair

International Scleroderma Network

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now