Pinetree

Fingertip amputation

23 posts in this topic

Hi,

I am new here. Have been diagnosed with scleroderma for six years and lately my rheumatologist said there is a lupus overlap. I have fairly severe Raynaud's in my hands and feet, and sometimes even in my tongue! About two months ago my right index finger turned blue and failed to get back to normal. After a week or ten days of this I went to my general practitioner who said it was normal in my condition and as there was no infection he could not do anything about it. A few days later a black dot appeared in the tip of my finger and it became increasingly painful. The skin then broke and I ended up with a couple of dark spots plus a couple of pus filled pockets. Went back to general practitioner and he gave me antibiotics and nifedipine. No good. The finger got progressively more sore until the pain was unbearable. Back to general practitioner, and I got sent to the emergency department where they sliced my fingertip open and cleaned the pus. The pain got worse and worse, I was sent to plastics and back to the emergency department, and my finger all the time got harder and blacker. Finally, a plastics surgeon saw me and said the fingertip was necrotic for lack of blood supply and it needed removing. I spent last week having an Ilosprost infusion as a day case at hospital and this Thursday the surgeon is operating to remove all the necrotic tissue in my finger ( the whole of my fingertip, going up about half way under the nail).

 

Sorry for the long post, I just wanted to know if anyone here has had a similar experience as I am petrified about the upcoming surgery and the possible pain of convalescence.

 

Thanks in advance!

 

Pinetree

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Hi Pinetree,

 

Welcome to these forums!

 

I'm very sorry to hear that you're facing amputation of your fingertip and I'm thankful that I've not had to experience that very unpleasant result of Raynaud's.

 

I've included a link to our medical page on Gangrene and Amputation which includes personal stories of patients who have experienced this. I hope that you will find these helpful and informative.

 

Please do post again and let us know how your operation goes on Thursday.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hello Pinetree,

 

Very sorry to hear that you have got to the amputation stage without even realising that is a possibility for people like us.

 

I remember before I was diagnosed with Scleroderma, my general practitioner noticed a blue finger which I dismissed as 'just my Raynaud's'.   She didn't dismiss it, put me onto nifedipine and said if it didn't resolve itself pretty quickly I was off to a Vascular Specialist.

 

Fortunately for me it did respond to medication, and it has made me realise how important an observant general practitioner can be.   I was there that winter's day for something entirely different but obviously her eyes were everywhere else at the same time.

 

Now you know, you can be watchful and do your best to avoid the same thing happening again.

 

Best wishes for a minimum amount of pain on Thursday and fingers crossed for a quick recovery.

 

Judyt

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Hi,

 

Thanks so much for your kind replies. I will let you know how it goes on Thursday.

 

Pinetree

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Hello Pinetree

 

I despair! Something can be done and should have been earlier!

 

I am so very sorry and your fear is totally understandable, pain is on most people's top 10 things to fear. You need referral to pain management having said that you should have a pre assessment prior to surgery and that's when to raise your concerns and do not be fobbed off, get the specifics. I recently has two pre assessments and pain control was my main concern. You have to ask what is going to be done for you, I suspect something intravenous and with all the anti sickness drugs around there is no need to be sick either, whether from the pain medication or anesthetic. Things like domperidone and metaclopromide work by speeding up gastric emptying whereas something like ondansetron (used for sickness in cancer patients and my favourite) blocks chemicals to the brain. There's also buccastem and cyclizine so plenty to choose from. Apart from being unpleasant, the act of vomiting is rather violent and makes anything painful more so after it's been operated on.

 

I don't know whether your care is ultimately under a scleroderma expert, we recommend them because they are exactly that, expert in caring for all aspects of this disease and coordinate your care. A general practitioner stating that nothing can be done can always be nudged in the direction of your expert.

 

Please let us know how you get on and take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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So I had the amputation yesterday. Everything went well and I was very impressed by the professionality and compassion of the whole team. I was given the option of general or local anaesthetic and went for local, given that my body has already been subjected to a huge amount of different drugs in the past few weeks. I could feel the pulling and scraping but had no discomfort at all, and I was glad not to have to deal with the aftermath of a general on top of everything else. Came back home in the evening with my finger still numb and managed a full night sleep! The pain has hit this morning, and I have a dull pain even with pain killers. Not surprising really. It is a lot more manageable than the isquemic pain I had before. They are doing all the follow up, such as changing dressings and taking out stitches, at the hospital in order to keep a close eye on it and making sure the wound is healing properly.

Thanks all for your good wishes and support.

Pinetree

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Hi Pinetree,

 

Welcome to Sclero Forums. I'm very very sorry you had to have a fingertip amputation, this week. I am impressed with how well you seem to be managing it. I'm sure only a few of us would have had the nerve to opt for just local anaesthetic for that operation.

 

I'm sending all sorts of good thoughts your way for a proper and careful recovery.

 

:emoticons-group-hug:


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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Hi Pinetree,

 

I'm glad to hear that your operation went well with no complications and I'm hoping that you'll have an equally trouble free recovery.

 

I'm joining Shelley in sending you a large :emoticons-group-hug: from all of us (I'm the red one!)

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hello Pinetree

 

Now it's over I really hope it heals well. We now know that scleroderma does not cause slow healing but of course we do know that lack of blood flow can cause issues with healing.

 

Keep the finger clean and keep the whole hand warm, in fact keep yourself warm because when the body gets cold it takes blood from the extremities to keep the heart and brain warm. No point warming the hands if you are cold! You are no doubt an expert but we have a number of videos about Raynaud's.

 

As you seem to be coping so well may I ask if you have considered adding any photos of said finger to our photo gallery? Totally up to you, no pressure.

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Amanda,

Yes, my main concern now is that it actually heals and I can move on. I go this Thursday for a change of dressings and a wound inspection and I am feeling rather nervous about it, not least because it will be the first time I see exactly what is left. For the time being, I am staying put at home and keeping nice and warm in this really cold weather we are having. I was only going to take one week off work, but I have now decided to wait until the stitches are out, Thursday week from now.

I do have some photos of the finger right before the amputation and I am perfectly happy to upload them. How do I do that? I could then post some more as the finger heals if that would be helpful. I would have certainly liked to have been able to get more first hand information on it but much as I looked in internet could not really find detailed stories of actual patients.

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Hi Pinetree,

 

It would be great if you could upload some photos into our Photo Gallery, especially if you can update as the finger heals. I'm sure our members would find that really helpful.

 

I've included a link giving instructions on How to upload photos into the Gallery. Please do let me know if you would like any further help and once uploaded you can add a post to this thread with a link to your photos; again, if you need any help linking your post to them, let me know and I'll do it for you.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hello Pinetree

 

Fab for wanting to upload your photos. Holiday snaps are just so last year!

 

A week off work? You might need longer for sure. Are you office based, can you work from home? I know that you can argue that going back to work sooner would also be beneficial so just have a good think about it. It's no small thing what you've had done.

 

Of course the time will come (I insist) when it all heals up and this raw rather unpleasant phase is a memory. Mid December I had my big toenails removed, somewhat of a lesser procedure than yours, but I wondered if they'd ever heal. Of course I had pre and post op infections and am still having to bandage part of the right toe but the left has actually healed! Hooray!

 

We with scleroderma may be slow but we get there!

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Pinetree, I have come to this conversation a little late in the day but thought I would share my recent experience with you in case it helps in any way.

 

I also suffer from severe Raynaud's for which I am treated with 3 monthly iloprost infusions as oral meds don't help in my case. Anyway, I still get digital ulcers in the winter months but do all the usual stuff recommended to look after my fingers. 12 months one of my ulcers got infected and I had some oral antibiotics which did not improve things, but my general practitioner prescribed another weeks treatment. After a few days the pain was so indescribable that I got an emergency appointment with my hospital consultant the next day. She immediately admitted me for I.V pain medication, iloprost and I.V. antibiotics. I was assessed by the plastic surgeons twice and fortunately they acted cautiously. After 6 days days of treatment things had improved dramatically, still painful but nothing compared to previously.

 

At the end of last November I could just tell that my finger ulcer was starting with an infection again, so wasted no time in going to the general practitioner and more or less told them that I needed antibiotics. (Oh how scleroderma has improved my confidence and assertiveness). Also I had another iloprost infusion over 3 days and so avoided the awful prospect of that terrible pain again and the potential of losing my fingertip. I will follow this plan of action every time now if I feel there there is any risk to my fingers. I know iloprost is not for everyone but it improves my quality of life immeasurably. I am also firmly in Amanda's camp, where there is no need to suffer unnecessarily, so if you need pain relief then make sure you get it.

 

I hope you continue to make a speedy recovery.

 

Take care,
Helen

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Hi,

Helen, I wish my general practitioner had acted when I went to complain about a blue finger. At that stage I had no pain ánd probably an iloprost infusion would have saved my finger. I will not be making the mistake of accepting a flippant dismissal from any doctor in the future!

Things took a turn for the worse last Thursday. I went for a wound inspection and a change of dressing, but as soon as the nurse removed the dressing it was clear she did not like what she saw. There was pus under the skin and necrotic tissue around the stitches. I was immediately admitted for IV antibiotic and had a second operation on Friday. The surgeon said it was not deep, so he had removed about two more millimetres. He only used one stitch to keep the edges together and left the wound to heal by secondary intention. I am back home now, on another course of oral antibiotics and feeling back to square one. I go back to hospital tomorrow for a wound inspection, but cannot feel very positive about it. We'll see.

Pinetree

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Hi Pinetree,

 

I am sorry to hear that you've had problems with the healing of your finger; it must be very painful and demoralising, when you'd hoped that all had gone well. I'm sure Amanda will sympathise, as she has healing problems with ulcers and has developed cellulitis on a number of occasions.

 

I do hope that it will heal up satisfactorily now, without any further dramas!

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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