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Gangrene on her toes


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#1 Pats Kid

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Posted 25 July 2008 - 09:39 AM

Hi all. I'm new here. My Mother has Scleroderma, and is suffering with extremely painful, necrotic toes. They have given her everything for the pain, short of anything that needs to be installed, but nothing really works. Her vascular surgeon wants to amputate, but won't do it until she has a heart bypass, and her kidney function is too poor to perform that kind of surgery.

Basically, she is sitting at home, in constant pain. A typical "light" pain day is at about a 4-5 on a scale of 1-10. I am so afraid that she is just going to give up.

She has a general practitioner, a vascular surgeon, a nephrologist, a cardiac surgeon. None of them seem to know anything about scleroderma, so rather than try to learn about it, they just keep giving her different drugs for blood flow, high blood pressure, etc. It's getting frightening. For instance, she takes Lasix, and her general practitioner was having her take potassium. She took it off her drug list after a hospitalization, so my sister asked at one of the appointments whether she should take it. This doctor got offended and rude and said she didn't need it. As per routine, they did blood work at the visit. Later that evening one of the other physicians from the clinic called and ordered her to go to the ER and get an IV potassium drip. She ended up taking mega doses of oral potassium, because she refused to go to the hospital, and had to get it retested first thing in the morning.

I have searched for Doctors in the South Eastern Nebraska/South Western Iowa who know something about Scleroderma and have had no luck. I am hoping someone here may know of a Doctor who specializes in Scleroderma, who would be near that area.

Up until a little over a year ago, she was completely independent, driving, working full time, living a life. She had an ingrown nail trimmed and everything fell apart.

#2 truman

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Posted 25 July 2008 - 10:27 AM

Pat's Kid:

I completely understand. I lost the big toe through amputation in two surgeries; Nov. 07 and Jan. 08. What should have taken 6-8 weeks healing is, in July still going on. I am finally beginning to heal through our Hospital Wound Care Center as an out patient. There has been astounding results through their efforts. Is there a wound care center in your area. If so, get your mother there. It may be too late if gangrene has set in, but they may be able to stave off further damage.
Tru

It is what it is...........

#3 KarenL

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Posted 25 July 2008 - 10:41 AM

Hi Pat's Kid,

I'm so sorry to hear that your mom is going through such a painful time with no help. I lost a finger to gangrene and know first-hand how horribly painful it is. It took me months to find the right doctor who finally gave me a pain patch that I was on for 8 months. They also did a thoracic sympathectomy which severed the nerves that cause the pain in the fingers. I don't know if there is a similar operation for toes, but the doctor who finally helped me was a digital surgeon. I don't live near you, but hopefully someone on this list will know of a doctor. Good luck I hope you get some answers soon.
Karen

#4 janey

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Posted 25 July 2008 - 10:49 AM

Pat's Dear Kid,
Welcome to the ISN forum! I'm so sorry to read about the problems your mother is having with scleroderma (SSc). It does seem to have come on pretty fast. I noticed that you didn't mention a rheumatologist. That is really the specialist that would know something about SSc. I did a search for a scleroderma specialist in your area, but with no luck. However, here are a couple of links to rheumatologists in Iowa and Nebraska.

Rheumatologists in Nebraska.

Rheumatologists in Iowa.

Please get her in to see one as soon as possible. SSc is a disease that sometimes is treated by just treating the symptoms; however, some doctors will put patients on immunosuppressants in order to slow the progress of the disease. I am not a doctor so I'm only speaking from personal experience and self-education. Due to her continuous pain and all the problems you mentioned, she really needs to see a rheumatologist.

Tru's advice on the Wound Care Center was very encouraging! That too might be something your mother looks into. She's lucky to have you working on her behalf. We have all learned that you need an advocate or need to be your own advocate in your health care, especially in a disease such as SSc.

Please keep up informed on how your mother is doing. There are a lot of great people here that will provide lots of support and hugs.

Big Hugs to both you and your mother,
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#5 Pats Kid

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Posted 25 July 2008 - 11:45 AM

She also sees one of the doctors on that list. I forgot about him, because he has not been much help at all. Evidently he saw the Scleroderma progressing, but didn't know what to do I guess, so he treated her for arthritis instead. He mentioned that he knew it was progressing the last time she was in to see him.

If she could just have the amputation, she would feel so much better. She keeps saying that this is not "quality of life" and I have to agree. Her doctors plan is to leave her in this pain until her kidney function is up enough to perform the bypass surgery. No one has a time frame.

She's got lot's of different pain meds and patches but she can't process them like other people. Sometimes they will knock her out for 2 days. When she comes back, she in the same amount of pain that she started with.

I hate to be a negative Nelly, but this is what she is up against.

#6 Pats Kid

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Posted 25 July 2008 - 11:51 AM

I will share all your information with her and check on a wound care center.

#7 truman

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Posted 25 July 2008 - 12:54 PM

Pat's kid:

The pain can be beyond belief, I know this first hand and wished they would cut my toe off. Be careful of what you wish for, I know, but the pain was beyond tolerance and I don't regret that decision.

See if you can get this tended to first. Your Mom has to be in the right frame of mind and condition to accept the other surgeries, and I can't see that happening until this is remedied.

Keep us posted.
Tru

It is what it is...........

#8 janey

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Posted 25 July 2008 - 03:00 PM

Sweetheart,
I think it's time to try another doctor on the list. When I doctor says that the disease is progressing and does nothing - it's time to say "Adios!" Please give another rheumatologist a try. When you call, ask the person that answers, if the doctor treats scleroderma patients. If she can't answer, then call someone else. The people up front know a lot more than we think and are usually a great resource especially if they have worked with a doctor for a while.

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)

#9 Sweet

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Posted 26 July 2008 - 05:36 AM

Hello Pat's kid,

Welcome to the sclero forums. I'm so very sorry about your mom. This must be so heart breaking for you. You've received great advice and I certainly agree she needs a different doctor!!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#10 JohnLCanuck

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Posted 27 July 2008 - 05:54 PM

Hi Pat's Kid ~


I've had 3 amputations because of bad circulation & gangerene. I have to admit that the pain from healing after the "bad" stuff was removed was much less than with that horrible black tissue that is just hanging there. It can't be fixed when it is that bad. And, when the dead tissue is removed the remaining seems to heal . . . at least it did for me.

There is no quality of life sitting in that awful pain. Find a surgeon & a Wound Clinic.


I wish the best for your mom . . . but sometimes you have to be assertive with the medical people.

Good luck

John L

#11 bookworm

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Posted 30 July 2008 - 09:21 PM

Hi, Pat's Kid,
I agree with everything everyone has said, but I'd like to add one thing. The first thing I would do if I was in that kind of pain is find a pain management clinic or center. Make sure the doctor's there are anesthesiologists and not just someone who decided to call himself a pain managewment specialist because he feels like it!
I lost part of my left inndex finger to gangrene and, you are all right about the pain. It's beyond belief and you have no quality of life at all! I suffered with it for several months before someone sent me to a wonderful pain clinic. I had been given all sorts of heavy-duty pain killers, but nothing had even dulled the pain until I saw my pain doctor.
Also, if you go to a wound care center, make sure the doctors there know about scleroderma and know what they are doing. I just think it's so amazing how many doctors will just blinder along, trying this and trying that, when they have no clue what to do. Meanwhile the patient suffers and suffers.
Your mom seems to have several serious issues happening all at once, but I'd say that if anyone can get her on the right pain meds that might help her, it will be a pain management specialist.
Good luck. Your mother is lucky to have you. Tell her to hang in there. There is life after gangrene!

Mary inTexas

#12 AmyTx

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Posted 21 August 2008 - 09:13 PM

i suffered with a necrotic thumb for a year and its very painful my rheumatologist just wanted it to fall of.. but I spoke with an orthopedic surgeon and he amputated the next day...that was august of 07 then in jan my left big toe got a sore on it and again had it amputated in june of 08.. the pain of having it amputated is far less/. the nerve pain once the digit is removed only lasts for about 2 days...i wish your mom well I have been there good luck