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Fingertip amputation


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#1 Pinetree

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Posted 25 January 2015 - 06:05 AM

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 GP and he gave me antibiotics and nifedipine. No good. The finger got progressively more sore until the pain was unbearable. Back to GP, 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



#2 Joelf

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Posted 25 January 2015 - 10:35 AM

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,


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#3 judyt

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Posted 25 January 2015 - 11:06 AM

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 GP 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 GP 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



#4 Pinetree

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Posted 25 January 2015 - 11:39 AM

Hi,

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

Pinetree

#5 Amanda Thorpe

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Posted 27 January 2015 - 03:12 PM

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 GP 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.


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#6 Pinetree

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Posted 30 January 2015 - 04:38 AM

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



#7 Shelley Ensz

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Posted 30 January 2015 - 06:28 AM

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
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Hotline and Donations: 1-800-564-7099

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

#8 Joelf

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Posted 30 January 2015 - 07:53 AM

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,


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#9 Amanda Thorpe

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Posted 31 January 2015 - 01:52 PM

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
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#10 Pinetree

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Posted 02 February 2015 - 02:07 AM

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.



#11 Joelf

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Posted 02 February 2015 - 09:55 AM

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
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#12 Amanda Thorpe

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Posted 03 February 2015 - 03:26 AM

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
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#13 rubydoo

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Posted 07 February 2015 - 03:08 AM

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 GP 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 GP 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



#14 Pinetree

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Posted 08 February 2015 - 02:01 AM

Hi,

Helen, I wish my GP 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



#15 Joelf

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Posted 08 February 2015 - 11:01 AM

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,


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#16 judyt

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Posted 08 February 2015 - 10:35 PM

Hi Pinetree,

 

So sorry your finger has had a hiccup in its healing.   Those of us who get ulcers are well aware how difficult they are to heal and how frustrating it can be.

 

Just one little reminder while you are on high doses of antibiotics is to keep up with probiotics at the same time to avoid the distressing diarrhoea that can ensue.  The last thing we need is more complications.

 

Best wishes for your recovery

Judyt



#17 Amanda Thorpe

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Posted 09 February 2015 - 05:24 AM

Isn't it amazing just how painful infection is?If you have any doubt let me assure you that it can cause pain like you've never known.

 

I have had cellulitis in my right hand, left thigh, right shin and right toe. For my hand I had 10 days in hospital with IV antibiotics (sudden, high temperature with erratic behaviour) took me to hospital not the pain, this wasn't because it didn't hurt but because I was used to grinning and bearing pain from scleroderma! Mind you whilst in hospital I longed for them to relieve me of my hand, see my blog The Nurse and the Cannula for more details. It was excruciating and I longed for them to operate but they didn't. For my left thigh I had IV antibiotics at home, no pain thankfully and the reason for IV instead of oral antibiotics was because the infection was too close to my femoral artery. For my right shin I had IV antibiotics because it was right on the bone and I ended up in hospital for 5 days because of dehydration and AKI. For the right toe 4 weeks of oral antibiotics and it's only because the pain quickly improved that I settled for tablets!

 

When my foot ulcers were infected they became more painful as well as more fragrant and gooey! 

 

Take care.


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#18 Amanda Thorpe

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Posted 09 February 2015 - 05:57 AM

Hello Pinetree

 

Have a read of my blog You like me, you really like me! because when first ill it is usual, unfortunately, to have our symptoms under appreciated by a doctor somewhere along our journey. We so want to trust our doctor, believe them competent if not expert in scleroderma and if we like each other...oh such joy! Alas this often fails or is never present to start with, we all long for it because who wants to grapple with personality and ego when already really in or in pain? Not me and add to that struggling to survive a relentless disease...really not me!

 

Not only do we have to be knowledgeable about our disease so we can educate doctors as necessary but sometimes we encounter attitudes and egos along the way but when we do we really can't afford to let it affect our treatment. In other words we have to, as Sweet so succinctly puts it, be our own advocates or try as best we can.

 

Take care.


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#19 rubydoo

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Posted 10 February 2015 - 12:35 PM

Hi Pinetree,

So sorry to hear you have had to endure another operation, you're having quite a rough time. Really hope things improve although this may be a slow process. Patience is an absolute necessity for us in the scleroderma club.

 

Amanda I so know what you mean about wanting your medical team to be wonderful. I used to feel this weird need to almost be able to brag to family and friends "oh yes darling. My consultant is absolutely blooming marvellous".

 

Just read your blog the nurse and the cannula - hilarious. It sounds like patience and restraint were required at the time.

 

 

Take care folks
Helen



#20 Shelley Ensz

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Posted 17 February 2015 - 03:50 PM

Hi Pinetree,

 

Is your finger healing properly, this time around?  I really hope that your healing journey goes smoother this time around.

 

Did you know that stress can reduce wound healing?  We had a marvelous article, which I think is expired now, about how even a single argument among married couples can slow down the healing of a wound by several days.

 

I say it is marvelous because it gives all of us a huge incentive to reduce all sources of unnecessary stress in our lives and to increase our emotional resilience. I suspect what happens is that we all have only so much energy to work with each day, and every bit of stress gobbles up some of our energy.  It takes tremendous energy for our bodies to heal, thus, stress (or doing too much of anything), depletes the energy that we need for healing.  Of course, my theory could be entirely full of it!  But it can't hurt, and might help, to maximize relaxation in your life right now.  It's a great time to tune out the negative, put on lovely music, relax with a (decaf) tea, and take a luxurious nap.

 

A cheerful tune for your healing journey could be, "Don't worry, be happy!"  We're all eager to hear how things are progressing, and hopeful that they are now going in the right direction.  Keep us posted, okay?

 

: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.