Been off lupus meds since early July due to a failed median neuroma surgery-from a mortons tumor of nerves in my right foot 4th toe. Have had this getting progressively worse for about six years or so.
Had alcohol and cortisone shots, rfa's, every nerve and pain med known to man, orthotics, boots, PT, you name it and nothing has worked to improve it. This was a last ditch remedy-and I didn't want any more surgeries on it-being off my lupus meds has been too difficult-with stubborn uveitis, pinkeye, horrid hot red rashes that won't go away, low grade fevers for weeks at a time, etc.
I had the amputation on Friday and am home and doing well. Can't wait to get back on my cellcept, plaquenil, meloxicam, etc. Yipppeeee!
I"m praying there's no phantom limb pain or if there is it is limited.
MUCH LOVE and HUGS, Julie
ps Lupus mainly attacks my nerves, blood and skin.
Sorry to hear you've had to lose your toe it still must be a right shock after all the other treatments you've used and my god you do go through the wars but otherwise we'd be lost without you on here but nice to know your spirits are up otherwise with how you've done your discussion.
Well i'm you dow get no phantom limb pain because that's surposed to be such a weird feeling.
I love you dearly Julie & i've not forgotten your pm mate...Terri ♥♥♥
JC that must have hurt terrible to think issues we may have to come to...it's terrible :)
John "JC" Colyer said:
My mother needed to have the nail of her big toe pulled after the birth of my brother due to it turning purple , that was 45 yrs ago, you are a strong person!
I can just about imagine JC...it's a struggle for we today but going years back it must have been really hard without the technology they have today.
John "JC" Colyer said:
She never complained, She struggled
Tez_20 said:
JC that must have hurt terrible to think issues we may have to come to...it's terrible :)
John "JC" Colyer said:
My mother needed to have the nail of her big toe pulled after the birth of my brother due to it turning purple , that was 45 yrs ago, you are a strong person!
That's quite understandable and having you with us JC is one large extra bonus knowing about it :)
John "JC" Colyer said:
That's why LWL makes me happy to see
Tez_20 said:
I can just about imagine JC...it's a struggle for we today but going years back it must have been really hard without the technology they have today.
John "JC" Colyer said:
She never complained, She struggled
Tez_20 said:
JC that must have hurt terrible to think issues we may have to come to...it's terrible :)
John "JC" Colyer said:
My mother needed to have the nail of her big toe pulled after the birth of my brother due to it turning purple , that was 45 yrs ago, you are a strong person!
Dear jujubeee - My thoughts and prayers are with you, Sweetie! You have such an awesome attitude; I experience nerve pain, as well, and it can be a bear ... You are a great inspiration to all of us. Hugs, Dee
jujubeee said:
It's all about management and solutions-we have to be on TOP of the lupus not the other way around, right?
I just know how you feel in one way wanting it gone because as i've stated before i have nerve damage and my middle finger on my right hand, i can't feel nothing with it but it pains me terrible and i told my Dermo i would'nt miss that finger one bit...i know saying these things don't help other's but the symptoms drive we mad and now the Dermo said i need to be treated by a chiropodist as the scleroderma is forming so much skin it needs constantly removing....NO THANKYOU they're like butchers. lol
jujubeee said:
Oh toenail removal can be awful. I remember my ex GP-a sweet ole time doc-used to have surgery day on Thursdays and it mainly consisted of pulling out toenails. I was lucky enough to be part of the Thursday schedule a few times for the toenail pulling party. He had popcorn, soda and plenty of local anesthesia with a movie screen big enough to focus on instead of your own feet which while you laughed and watched sci fi movies..the doc was pulling out your ingrown and damaged toenails.
They do hurt afterwards but most of the time pulling them out is a solution - less painful then having them ingrown or purple damaged or infected. He used to have us pick up our scripts for pain meds on the way out after movie/surgery day. He sure knew how to make light and fun out of a horrid procedure, lol.
This amputation was last resort. You with nerve pain know how bad it can be. When my new neurologist said my nerve tumor pain in my foot COULD be helped, I saw a light at the end of the tunnel after years of suffering. When I met my new Doogie Howser orthopedic surgeon and he said, oh yeah, if the median neurectomy doesn't work, then we can take the toe, sure, I jumped up and HUGGED HIM (squooshed him is more like it-he's a little guy).. He told me sports figures do this more than you think, because who's got time to deal with pain in your toes when you don't have to?? And I felt great HOPE!
Perfectly willing and ready to take the risk- I am thrilled it was an option, even without the movie, popcorn and soda!
Julie, you have such a wonderful and positive attitude. I'm so sad you have had to gothrough so much that the last resort was amputation. I wish you a speddy recovery, and that getting back onto you previous med cocktail helps you long term to live better and feel healthier. I don't know if I could have made the tough choice you did.
Please be good to yourself, rest, and indulge in whatever brings you joy that you can do now while healing up.
big hugs, hope they have you properly pickled and feeling no pain,
It’s wonderful to hear your positivity! That’s always half the battle. I think it was a brave choice. I will say a prayer for a speedy recovery. I’m glad you can get back on you med cocktail now. That alone should begin to make you feel better.
Hats off to you! I hope this finds you healing well from your surgery
and back onto your regular meds & feeling much better.
One bit of advice (i had to have my right index finger removed almost 3 years ago)–i don’t know if they have scripted you for some PT but even if they did not…keep your foot moving and stretching. Even rotating your ankle in circles, flexing all your toes etc. As you heal. This will help keep your scar tissue more manageable and help any nerves and/or tendons involved more pliable. That will help to minimize your healing pain and may cut down on residual phantom pain down the road.
Healing hugs…
but otherwise we'd be lost without you on here but nice to know your spirits are up otherwise with how you've done your discussion.
you dow get no phantom limb pain because that's surposed to be such a weird feeling.
Terri ♥♥♥
