Jump to content


Congrats to Margaret, Platinum Member with 1,000 posts and 10 Years of Forums Membership!


Photo

Ulcer and Calcinosis


  • Please log in to reply
25 replies to this topic

#1 Annie20

Annie20

    Senior Bronze Member

  • Members
  • PipPipPip
  • 85 posts
  • Location:Suamico, WI., U.S.A.

Posted 07 June 2011 - 08:36 PM

Hi Everyone,

I have an ulcer on my right hand, index finger on knuckle which has lead to a calcinosis, (same finger), which has become abscessed on pad, it's becoming bigger. I went to see my internist today which I had scheduled to see her a couple months ago. She prescribed an antibiotic hoping the calcinosis will shrink and go away. I need to call this Friday. She said if the antibiotics do not work, the calcinosis will need to be cut.

She said if it's done in the office, even having it froze, it will hurt like the dickens! Not sure what hurts more the ulcer or the calcinosis! :wacko: Well..... even if I slightly bump the calcinosis, or touch it, it hurts!!!!!! And then she suggested that I could have it surgically opened and be under anesthesia.

I hate to pay a lot more money if I have it surgically opened having to pay for the surgeon and anesthesiologist, but then I do not want to be in so much pain that I cannot tolerate it. My husband Mike said it would be covered under insurance, but not sure how much. My husband and internist were very understanding with how much pain I'm already in and they both said it was up to me.

My question is, should I endure the excruciating pain, save money, have it done in a doctor's office or should I have it surgically opened and be under so I don't feel any pain?

I even told Mike that I will be willing to pay him $500 in cash and not be in such unbearable pain to help pay for the surgeon and anesthesiologist.

I'm hoping the antibiotics will do the job, then I won't need to worry about this.


Annie :emoticon-insomnia:
Diffuse Systemic Sclerosis, (Scleroderma). Lung, skin and gastrointestinal involvement.

#2 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,276 posts
  • Location:Minnesota

Posted 07 June 2011 - 09:27 PM

Hi Annie,

I'm sorry you have an infected ulcer and calcinosis.

Are you sure you would have to pay more to have it surgically removed? Many insurance plans would very likely cover it completely (especially Medicare and most Medicare gap policies). Read your insurance policy and if necessary call them to clarify your coverage so you know exactly what the trade-off is, because it may be that you would owe nothing or much less than you think. Then again if you have rotten coverage, it could be way out of the ballpark, so you'd want to make sure your $500 offer would cover it.

Obviously, it sounds like your choice is to avoid as much pain as possible. That's a reasonable option and it's rather doubtful anyone would thus be able to convince you to go through the merciless infliction of unnecessary pain.

Here's a hug for you, along with hopes it will clear up on its own.

: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.

#3 Joelf

Joelf

    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,616 posts
  • Location:West Sussex

Posted 08 June 2011 - 02:21 AM

Hi Annie,

I am so sorry to hear that your ulcer and calcinosis are still giving you such a lot of pain.

We have a different system in the UK, but the same dilemma would occur if I wanted to have something done privately, as opposed to under the NHS (National Health Service).

I don't have any more advice to offer, but I do hope that the anti-biotics clear it up and you start to feel better very soon. :emoticons-group-hug:

Jo Frowde
ISN Assistant Webmaster

SD World Webmaster
ISN Sclero Forums Manager
ISN News Manager

ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)


#4 red

red

    Senior Bronze Member

  • Members
  • PipPipPip
  • 96 posts
  • Location:Upstate New York State

Posted 08 June 2011 - 05:09 AM

Hi Annie, sorry you're suffering so, I'll hope too, that the antibiotics will do the job and you won't have to decide which route to go surgically.

I do understand your dilemma, it's very difficult that some insurance company plans are arbitrary as to what and how much they cover. I agree with Shelley, a call to your insurance carrier, to get an exact $ amount as to your cost, is in order. Then you can make a more informed decision. Although if I were in your shoes, I'd opt for the less pain method, even if that meant I needed to give up some things and be extra frugal for awhile to pay for it.

It was great chatting with you last week, am looking forward to this Friday so we can connect again! :emoticons-group-hug:

Red

#5 uknlv18

uknlv18

    Silver Member

  • Members
  • PipPipPipPip
  • 155 posts

Posted 08 June 2011 - 06:42 AM

Hi Annie

I too am sorry to hear you are still in so much pain, fingers, eyes, and toes crossed that the antibiotics work and things start getting better.

Are there no other types of local anesthetic that they could use in place of the full anesthetic and surgery? I had my carpal tunnel surgery done years ago and was given a twighlight (not sure on spelling) sleep and it didn't cost that much as you are never under completly. They then injected me with lots of numbing stuff in my wrist, and because of the twighlight sleep, I only felt a slight pinch from the first needle. I had this done as well when I had my wisdom teeth out. Im not sure if it is an option for you, but it did make my procedures easy and pain free. Of course until all the numb juice wears off!

Sending you some soft hugs, and hoping things go much better for you.

:emoticon-hug:

Cheers
Jean

#6 Annie20

Annie20

    Senior Bronze Member

  • Topic Starter
  • Members
  • PipPipPip
  • 85 posts
  • Location:Suamico, WI., U.S.A.

Posted 09 June 2011 - 07:10 PM

Thank you very much Shelley, Jo, Jean and Red for your responses. :thank-you-2:

Mike will be looking into how much our insurance will cover, but he said it doesn't matter what the coverage would be. He does not want me to be in any unnecessary pain. The $500 I mentioned was just a ball park figure. My guess without insurance would be around $1,500 - 2,000, surgeon and anesthesiologist. My husband said, do not worry about the money, I will take care of you. Well, he has proven that to me in the 30 years I've known him. :happy1-by-lisa-volz: I do have a gem of a husband, that's for sure.

Take care and :emoticon-hug: ,


Annie
Diffuse Systemic Sclerosis, (Scleroderma). Lung, skin and gastrointestinal involvement.

#7 CraigR

CraigR

    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 438 posts
  • Location:Escondido (near San Diego), Ca

Posted 09 June 2011 - 09:51 PM

I've had surgery for calcinoses on the fingers.
I can't imagine thst they would even consider doing it without anesthesia. That would be monstrous.

Mine were done by a family practice physician (not even a surgeon or rheumatologist). He anesthetized the finger with lidocaine injection, then cut it out with an instrument with a tiny scissors-like jaw. Nothing more than an extended regular doctor visit. Most dental work is much more complicated, and doesn't require a separate anesthesiologist! Why an anesthesiologist? The doctor can't give a couple of lidocaine injections, like dentists (and many non-anesthesiologist doctors) do all the time?

In my case, the surgery did not completely eradicate the calcinoses, but removed most of it. Most importantly, it removed all of the pain.

I'm astonished that these doctors make such a big, expensive deal out of something that is simpler than filling a cavity, or suturing a small wound.

Just my 2 cents. Good luck,

Craig

#8 Annie20

Annie20

    Senior Bronze Member

  • Topic Starter
  • Members
  • PipPipPip
  • 85 posts
  • Location:Suamico, WI., U.S.A.

Posted 10 June 2011 - 08:44 AM

Hi Craig,

Thank you for replying.

I chose not to have the procedure done in the doctor's office. The internist said it would be numb, but I still would be in extreme pain. My pain tolerance is very low. If I bump or press on the calcinosis, it hurts tremendously. (It has become bigger.) I do not want to subject myself to anymore pain than is necessary.

I'm under my husband's insurance which will cover some of the cost of surgeon & anesthesiologist. Thank goodness!

I'm happy you're not in any pain. You must have a high tolerance for pain. Take care :)

Annie
Diffuse Systemic Sclerosis, (Scleroderma). Lung, skin and gastrointestinal involvement.

#9 CraigR

CraigR

    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 438 posts
  • Location:Escondido (near San Diego), Ca

Posted 10 June 2011 - 08:53 AM

I don't understand why you would feel pain. With the finger anesthetized with lidocaine, there is no pain during the procedure.

Craig

#10 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,276 posts
  • Location:Minnesota

Posted 10 June 2011 - 03:16 PM

Hi Annie,

Craig mentioned that with the finger anesthetized, there is no pain during the procedure. I have to agree with this, as I've had all sorts of work done in office with no pain whatsoever at the time. Afterwards, well, that is a different story entirely when the meds wear off.

But, and here is a big BUT, there is absolutely no pain at all involved in getting an MRI, either. I merrily have them with no worries at all, in fact, nearly falling asleep. But I know people who totally freak out over them and need to be sedated -- even though, mind you, they aren't even being physically hurt at all. And I think this is where you're coming from; you don't want to be awake while they do whatever they do, and you don't want to endure even the slightest pain, even if it is accurately couched in terms like "pressure" or "this is just a pinch."

Since anxious people are rightfully sedated for MRI's, which inflict no physical pain at all, there are certainly grounds to choose to be out when you know you may not be up to enduring the psychological effects of even remotely possible pain (or the sight of blood) during the procedure. I say, if it is an option for you, medically and financially, then hold your head high and insist upon it. It doesn't make you a "baby" in any way, it just means you are drawing the line where it feels comfortable and safe, for you.

: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.

#11 CraigR

CraigR

    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 438 posts
  • Location:Escondido (near San Diego), Ca

Posted 11 June 2011 - 01:23 AM

One other thought might be an anti-anxiety drug, if the idea of the surgery bothers you even when anesthetized.

I mention this because I have had several bronchioscopies, where they put tubes down your nose while conscious. When it was first described, my attitude was "I don't think so!", but with the anti-anxiety drug, it didn't bother me at all. Even though awake, I was too dopey to be bothered.

Craig

#12 debonair susie

debonair susie

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,638 posts
  • Location:(United States)

Posted 11 June 2011 - 11:15 AM

Hi Annie,

Please know that I must agree with Craig, especially since he has first-hand knowledge about these procedures, so he's not talking out of school.

I DO appreciate how you must feel ie: Low pain tolerance, likely fear of the "unknown" and basing your decision on the fear the lady doctor (apparently) instilled in you :o during your visit with her.

My husband doesn't do very well, when it comes to some procedures. Therefore, he is given a medication that relaxes him to the point they could do whatever they wanted and it would be fine with him!

Please rest assured that you aren't the FIRST person to feel this way and I'm POSITIVE you won't be the LAST, either.

So, my friend, know that :emoticons-i-care: and hope that all of this will ease your mind.
Special Hugs,

Susie Kraft
ISN Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)

#13 Annie20

Annie20

    Senior Bronze Member

  • Topic Starter
  • Members
  • PipPipPip
  • 85 posts
  • Location:Suamico, WI., U.S.A.

Posted 11 June 2011 - 08:50 PM

Hi Craig, Shelley & Susie,

Thank you very much for your reassurance. It means so much!!!

On Monday, I will be having a consult with the hand surgeon. He may just as well advise me to have it done in the doctor's office. However, I need to know that I would be in no pain whatsoever.

When it comes to non-invasive procedures such as m.r.i.'s, cat scans, x-rays,seeing blood, etc....I have no anxiety. But when it comes to blood draws which I have a great fear of because I've had such horrible experiences and pain related, then I begin to feel worried and beside myself-not a good thing. Craig, I was not aware there was such a med for anti-anxiety. I may need to check into it. Thank you! The internist said it would be numb, but I would still feel pain, I'm happy she was forthcoming, not sure why it wouldn't be totaly anesthetized with the lidocaine. hmmmmm?

Will update you all after talking to the hand surgeon on Monday. :thank-you: means a lot.

Annie
Diffuse Systemic Sclerosis, (Scleroderma). Lung, skin and gastrointestinal involvement.

#14 enjoytheride

enjoytheride

    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 367 posts

Posted 12 June 2011 - 12:14 AM

I had one removed from the fold under a knuckle. It was done in the hand surgeon's office with a local. The surgeon said it was tricky due to a nerve that ran right next to the spot but it was totally pain free. I wasn't even aware of when the doctor finished til he showed me the thing. I even sneaked a peek (very briefly) while he was working.
I have also had another one taken out with a general anesthesia and I can honestly say it was not worth the bother.
Both ways had some pain when the meds wore off but even that was not as bad as I was expecting.
Whatever you choose to do, I wish you every success.

#15 Annie20

Annie20

    Senior Bronze Member

  • Topic Starter
  • Members
  • PipPipPip
  • 85 posts
  • Location:Suamico, WI., U.S.A.

Posted 12 June 2011 - 01:16 PM

Hi Enjoytheride,

Thank you for the reassurance, means so much!

It'll be interesting to see what route the hand surgeon will take.

Craig, I forgot to mention in my last post, I love your profile pic of your puppies, they are so cute!!!! What breed are they and what are their names. I have a 10 yr. old female Yellow Lab, named Sunny.

Take care :VeryHappy:

Annie
Diffuse Systemic Sclerosis, (Scleroderma). Lung, skin and gastrointestinal involvement.

#16 CraigR

CraigR

    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 438 posts
  • Location:Escondido (near San Diego), Ca

Posted 13 June 2011 - 09:18 AM

Hi Annie,

About the doggies: They are my doxie Sadie, with her best friend Jasmine, a small spaniel mix.

Craig

#17 Annie20

Annie20

    Senior Bronze Member

  • Topic Starter
  • Members
  • PipPipPip
  • 85 posts
  • Location:Suamico, WI., U.S.A.

Posted 13 June 2011 - 06:17 PM

Hi Craig,

I love the names you chose for your doggies.

This is quite interesting.....talked to my hand surgeon and he recommended botox! I was shocked! I thought botox was only used for cosmetic such as wrinkles. He did explain the main purpose--to increase blood circulation in both hands, especially the right hand where the ulcer & calcinosis is, (index finger). In the office he did an ultrasound of both hands, could not hear a few of the arteries in right hand and did not hear one artery in left hand. He felt surgery is out of the question because the calcinosis will return. It never occurred to me it would. His quote, "it's your best alternative."

First step is to have a vascular study which is scheduled this Thursday in the a.m. (takes 2 hours.) I'm hoping I'll be elgible to have the botox done. The surgeon will meet my husband & myself beginning of July to discuss the results of study. Please keep your fingers crossed.

I am delighted that the surgeon is taking a course of action and will be able to help me. I do not want to lose my finger.

Wondering if anyone on this forum did botox?

Thank you all for your advice, support and encouragement. :emoticons-thankyou:

Annie
Diffuse Systemic Sclerosis, (Scleroderma). Lung, skin and gastrointestinal involvement.

#18 MaryFanPhilly

MaryFanPhilly

    Silver Member

  • Members
  • PipPipPipPip
  • 120 posts
  • Location:Central California

Posted 20 June 2011 - 12:16 PM

Hi Annie,

You poor thing, I understand how you feel. I had the mother of all calcinoses on my finger. When the rheumatologist saw the xray, she actually gasped and grabbed the table. The pain was as you describe and believe me, the terror of having that finger bumped or injured far outweighed any temporary pain I might feel. In fact I had no fear at all of pain knowing that daily pain would be gone.

I strongly, and I mean STRONGLY suggest you see a hand surgeon, and one who is familiar with this very rare and strange manifestation. Board certified only.

Personally if you've been living with this pain day in and day out, you're understandably agitated about more pain. From someone who has been there, you can do this. Message me if you need support.

Have it done with now but it is true, it may return. But the consequences of it getting much larger are even worse. Please take action early.

Be well,

Mary
Diffuse sclero; diabetes; hypertension; GERD with Barrett's

#19 Catty

Catty

    Senior Bronze Member

  • Members
  • PipPipPip
  • 43 posts

Posted 21 June 2011 - 05:17 PM

Hi Annie

I have had about 15 operations for calcium deposits and that is the only thing that has ever helped me with them. More than likely hon you had the calcium deposit first that caused the ulcer.

Doctors give us antibiotics for everything it seems. Antibiotics are for infection and that is all the antibiotic will help you with. They will not heal the ulcer or make the calcium go away. It is important that you take it to ward off infection, you're in enough pain, you sure don't need an infection also.

If you have surgery trust me when I say that you don't want to feel anything,an ulcer is horrid pain. If you get that calcium cut out then in time the ulcer will heal but the calcium being there will keep the ulcer from healing. So if I were you I would go the route that will be as painless as possible for you. I wish you all the best hon....Hugs

#20 Annie20

Annie20

    Senior Bronze Member

  • Topic Starter
  • Members
  • PipPipPip
  • 85 posts
  • Location:Suamico, WI., U.S.A.

Posted 21 June 2011 - 07:53 PM

Hi Mary and Catty,

Thank you both for your replies and your experiences with ulcers and calcinosis. :thank-you-2:

Mary - I am currently seeing a board certified plastic and hand surgeon. You would not believe this, but he suggested botox on both hands to improve blood circulation. Initially I honestly thought he was joking. He first recommended a vascular study which took a little more than an hour. This test, (study) will determine if I'd be elgible for botox. My husband and I will be discussing the results with him on July 5. On July 7, we'll be seeing my rheumatologist. (yearly visit). Husband is somewhat concerned about the botox so he would like to see what her (rheumatologist) thoughts are. It'll be interesting to see if they're on the same page.

Catty - My internist had prescribed antibiotics, dosage was 3 times per day. It cleared the infection. In fact, great news, the calcinosis on my finger is developing new skin. When the calcinosis developed 3 months ago, it was a bump for the longest time which increased in size, then after taking antibiotics it turned into a scab, eventually it dried up and the scab fell off by itself.

I will post after talking to my hand surgeon to see what direction I go towards.

Take care and hugs to both :emoticon-hug:

Annie
Diffuse Systemic Sclerosis, (Scleroderma). Lung, skin and gastrointestinal involvement.