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#17050 - 10/07/07 08:48 PM Questions about major surgery, have you had any?
Anonymous
Unregistered


It's been years since my diagnosis of deteriorated hip joints from accutane use. The constant 24 hour pain and lack of mobility/ability to do anything productive is torture. I have been to countless specialists only to have all of them tell me I need both of my hips replaced, sooner or later. Unfortunately they all have been telling me to wait until I am older because artificial hips only last 10 to 15 years. What sense does it make for me to wait that long being able to do nothing all that time? I need to be mobile and productive now before I am too old. I finally found an excellent orthopedic surgeon willing to operate on me, or did I?? After months of him making me try the newest NSAID's, which did nothing more for the pain then ibuprofen does, he agreed to move forward with the surgery. His very next sentence started with BUT!, I'm extremely worried about infection with my type of skin condition. I instantly told him I haven't had an infection in over 25 years to which he replied that I had also never had surgery of any kind either. I now must prove to him that people with Ichthyosis, especially EHK can have major surgery and don't automatically come down with an infection. I understand his concerns, an infection in a newly replaced hip joint could be life threatening. I told him I would poll my extensive support group of thousands of Ichthyosis sufferers(you guys) and see what I could come up with, naturally I will be having my dermatologist giving his input also. I'd like to know how many of you have had surgery, what type, major or minor, how you and your doctor prepared for it from the infection aspect, and if there were any complications that arose from it, infections or otherwise. Anything and everything you did I'd like to know. I need to bombard him with all the info I can get. I understand that my type of Ichthyosis is prone to infections, but I don't believe they are caused by our Ichthyosis but rather from opportunistic bacteria that already exists in our enviornment getting into our many open cracks, blisters and scrapes. I know a hospital is probably the most likely place for this to happen, but it is a chance everyone takes and it isn't exclusive to Ichthyosis. Feel free to post your experiences or email them directly to me through the board if you don't want others to know your experience, any and all will remain in strict confidence I assure you. I look forward to hearing from you. Thanks.
Keith.

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#17051 - 10/07/07 11:59 PM Re: Questions about major surgery, have you had any?
Evan's Mommy Offline
Member

Registered: 08/11/05
Posts: 165
Loc: Portland, ME 04106
Hi Keith,
I am so sorry to hear about your pain and medical problems. My best advice would be to turn to FIRST, someone on the medical board may be willing to speak to the doctor on your behalf - sometimes docs feel better when they talk to other docs. Obviously, surgery is nothing to take lighty, but it sounds like you've done your homework and I completely agree that no one should live with that kind of pain. Of course, all surgery comes with the risk of potential infection - ask your doc to keep you on reverse precautions. Do not let any health team member touch you without gloves. Inquire about Dakins Solution/rinse (mild bleach water solution used for wound care). Depending on your insurance, you could arrange for home care so you can get out of the hospital more quickly and get away from the bad hospital bugs. Best Wishes.
Kimberly

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#17052 - 10/08/07 02:22 AM Re: Questions about major surgery, have you had any?
dslacker Offline
Member

Registered: 08/26/00
Posts: 61
Loc: Copenhagen - Denmark - Europe
I havent got any major surgery (Discounting a broken leg from a skiing accident when I was about 12 - but it didnt involve cutting but rather a cast for 6 weeks - The cast pretty much infected the whole leg due to the skin not getting any air, but it was only surface infections...).
However I would very much like to hear what results you get of this survey, since chances are that I might also have surgery some time in the future - As we get older the statistics of such an experience increases :-)

------------------
The Danish Slacker
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dslacker@trustme.dk
"Have you got the will to be weird"
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_________________________
The Danish Slacker
-------------------------
dslacker@trustme.dk
"Have you got the will to be weird"
----------------------

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#17053 - 10/09/07 05:25 AM Re: Questions about major surgery, have you had any?
Hearsay Offline


Member

Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
Keith, I suggest you check the mom board. There are a number of people who have had C-sections there. Also, email Kacy. I know she's had multiple surgeries on her hands.

I can't offer anything from personal experience, though.
_________________________
Jennifer
Ichthyosis-en-Confetti Type 2
Husband, Nathan - 10, Elliot - 7, Oliver - 4, all affected.
I also have an unaffected daughter, age 8.


email: jennifer at confettiskin dot com
facebook - find me on "ichthyosis mommy spot" or "friends of ichthyosis"

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#17054 - 10/09/07 05:41 AM Re: Questions about major surgery, have you had any?
pauline5 Offline
Member

Registered: 01/06/02
Posts: 913
Loc: Melbourne, Australia
Oh Yes, Hearsay, Kacy would be a perfect person to ask about her experiences...

Hey Keith, how's it going? obviously not good!! (:

I have had two surgeries...
First one was when i was 5 years old, I had my ears pinned back...they were like dumbo ears when i was born...that was plastic surgery, and of course they would have worried about infection...All i can remember about that one, was being bandaged up for quite a few months before they unwrapped it...

I will ring mum about that one.

Second cutting surgery, was when i had a lumpectomy in my right breast...It was just day surgery, but after a few days home...it did get very infected...one of the stitches came out leaving an open hole, and the infection was terrible...I will never forget my local doctor squeezing it to get the green pus out...BUT OF COURSE WITH ANTIBIOTICS IT SOON WENT AWAY, WITH NO PROBLEMS...

Best of Luck Keith
Love Pauline

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#17055 - 10/10/07 08:00 PM Re: Questions about major surgery, have you had any?
Promiseland_dup1 Offline
Member

Registered: 02/13/03
Posts: 536
Keith,

Great to hear from you again. But sorry to hear about the medical problems. I am sorry I cannot offer much input on infection and surgery. I had one surgery as a child with no skin ramification, and my severe IV is in good enough condition in the hot and humid weather now that it would probably present no additional risk if I were to have surgery.
Hope everything works out for you.
_________________________
Don't ever lose hope when
there is a promised land, and "sweat" dreams

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#17056 - 10/11/07 02:04 PM Re: Questions about major surgery, have you had any?
kacy825 Offline
Member

Registered: 01/12/06
Posts: 89
Loc: Ellicott City, Maryland, USA
I can say I have NEVER had an infection from any of my surgeries. And I have had many, 3 c-sections, my gall bladder removed, ear drum reconstruction, and numerous hand surgeries because of contractures and banding. I have had an infection from staples being left in too long, and then being dug out. I just had my 15th hand surgery 2 weeks ago and they placed a large synthetic skin graft which seems to be taking well. I do however, reject my own skin as a skin graft. I will be sharing that with the doctors at conference. Keith an email is on the way.
_________________________
Kacy - 41
Happily married mom of 3 sons.(unaffected)
EHK-KRT1 palmorplantor, spontaneous mutation
Younger brother also affected.

" I have EHK, it doesn't have me!"

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#17057 - 10/11/07 07:59 PM Re: Questions about major surgery, have you had any?
Promiseland_dup1 Offline
Member

Registered: 02/13/03
Posts: 536
Keith,

What is the casual relationship between the drug, accutane, and the problems with your hip joints?
_________________________
Don't ever lose hope when
there is a promised land, and "sweat" dreams

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#17058 - 10/12/07 03:21 AM Re: Questions about major surgery, have you had any?
Anonymous
Unregistered


There is no "casual relationship". Calcification of the joints and deterioration of cartilage among other skeletal side effects and liver damage are not chance happenings when taking Accutane. When I first started taking accutane back in the early 1980's they were well aware of certain skeletal side effects, particularly in the knees, wrists, spine and neck. Unfortunately my skeletal damage was occurring where they weren't accustomed to finding it, so it went undetected.

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#17059 - 10/12/07 04:47 AM Re: Questions about major surgery, have you had any?
PsychGal Offline

Member

Registered: 04/10/07
Posts: 70
Loc: By a large mountain
I'm pretty sure that Promiseland meant "causal" not casual relationship in his post.

Also, I've had several surgeries and as long as I took Keflex or some other antibiotic for several days prior, there was no infection and healing went smoothly. Good luck with it all!

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