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Judy Devlin

From finger ulcer to amputation

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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

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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)

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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.

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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

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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

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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

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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)

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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

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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

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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

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Hi Mary,

 

Thanks for the input. These shared experiences are comforting on many levels.

 

Anyways, I did mention the viagra treatment to my rheumatologist with not much feedback. Another new treatment that there has been some good results for finger ulcer healing is with a shot of Botox in the fingertips. My surgeon's been trying to get approval to try that for me also.

 

As I've snickered before, with these 'new' treatments we'll be able to go to the grave lookin' good.. :lol:

 

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

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Judy,

 

I don't have any experience in this area really, I just wanted to say the way that you are staying positive and focused on your treatment is very inspiring.

 

B x


Diagnosed diffuse systemic scleroderma December 2005 (on my 30th birthday, as if turning 30 wasn't enough?!)

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I use Revatio now, it's similar to viagara and it's working. I still get Raynaud's attacks but they are shorter duration and not quite as bad. No horrible infections this winter, just one little one that I dealt with using bandaids and neosporin and one finger that keeps threatening to ulcerate, but hasn't. So maybe the Revatio might help?

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Hello, I am very new to the forum but not so much to the disease. My mom was diagnosed around 2000, not really sure of the exact date. She has suffered tremendously with finger ulcers. One thing that has helped her has been nitroglycerin cream.

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