One of the tests I had recently showed that I have carpel tunnel symdrome in both hands in addition to neuropathy so I was referred to a hand surgeon. I saw him today, husband with me. We both liked him alot and he said that the surgery he could do might help but he can't guarantee that because of the neuropathy. His scheduler will call me soon to get it sceduled for my right hand! I hope it helps my coordination! Our hands are sure important to our everyday lives! On our way home, we visited my step-daughter, who's here from the Florida Keys, her first trip back since she moved last August. She's staying at a cottage on a lake, with use of a boat, about a half hour drive from our house. Her boyfriend lives ner us and is staying with her so we goot to see him, too! I saw her for a little bit last week when she arrived and hope tp see her again before they leave.
Interesting visit with hand surgeon - SHARE Metastatic ...
Interesting visit with hand surgeon
Glad you had a nice visit with your daughter. Fingers crossed the Surgery will be beneficial.
Pam, based on my experience with carpal tunnel surgery and neuropathy, I would strongly urge you to try PT before surgery. I had the surgery last year. I am left with increased pain, burning, tingling and hand deformity and stiffness so bad that my left arm and hand are pretty useless. I went to pt post surgery and one pt told me she couldn't help me. The surgeon said he couldn't help. MY ONC referred me to pain management but I can't tolerate the med cymbalta. They referred me to another PT who is giving me stretching exercises and low level laser therapy to see if this will help. It is a nightmare. Save yourself this journey. My surgeon didn't even warn me that the procedure might not work because of the neuropathy. I know everyone is different, but know that the surgical result could be terrible!
Oh boy, I really feel for you! I used to have REALLY bad carpal for a long time but I was too afraid to get the surgery. I managed. I wore the annoying wrist things at night for as long as I could, and avoided as much as possible the gripping activities that made it worse. A long time (years) went by just putting up with it.
I ended up teaching fitness so gripping weights could be a challenge. Ironically though it ended up being yoga that helped me. I just slowly built up the time I could tolerate supporting my own weight with my hands (note that’s the very stretch of the wrist they tell you to avoid!) Ha! For me it has almost 100% healed it so I agree about trying PT first!!
PJBinMI
I work with clients who have had nerve damage for various reasons and I agree that I feel like Marootsi’s experience might not be an odd one out. The fact is that the nerves are already greatly compromised by the neuropathy (vs carpal tunnel where the nerve tingles, etc usually tend to be reversible with the right approach, whatever that might be). Personally I would be concerned about putting those nerves at potentially greater risk of damage via surgery, especially with his statement.
If you try PT first it’s very doubtful it will make it worse. And then if that fails you could decide whether or not to do the surgery?. The right exercises can sometimes have a surprisingly beneficial effect on the neuropathy, or at least control of feet (more my area). The trick is to find someone fabulous - well versed in working with nerve damaged hands. There are PT/OT’s who specialize in hands and forearms, or, if you can find a Functional Manual Therapist (not so many of them around but they’re PT’s with extra training in manual work. (They do great work but are often pricey)
So happy you had a lovely time with your daughter!
I tried to reply to you several times but couldn't! Decided to try again this morning, and Voila! here it is! I've had lots of PT, plus OT. Hands still tingly, palms always feel as though they have cream on them and fine motor coordination is off. This hand surgeon was recommended by the palliative care NP I am seeing, and she's always steered me in the right direction. Maybe I'm overly optimistic about this surgery, but I am hopeful that it will help some.
I wish you the best with your decision. Love, Marianne
Just one more thing, now they are sending me to a neurologist. Just another in a long list of doctors. Ugh!
I have a long list too! Humor helps me cope. I used to have just two docs pc and gynie, now i have enough to field a baseball team, LOL! Besides liver and kidney specialists the only other one I haven't seen is a psychiatrist! I hope the neurologist can help you! hang in there. Sending warm hugs, Pam
Are you on Letrazol? I was and I got that in both hands and then it went on the trigger thumb. My oncologist didn’t pick it up. It was my GP who said, “Hang on! I remember a side effect of Letrazol is that it can cause hand problems. ESP Trigger thumb/finger and Carpal tunnel. I was immediately singed to Anastrozole. A second cuss on to Letrazol. Same thing but different. Still have terrible hand problems, but much better and than before. And the trigger them has disappeared. I also had to have steroid injections int both joint at different times.
that’s crazy! I did not know that about Letrozole! I was lucky to not have issues with it
I was on letrozole for nearly 5 years and if I'd started to develope carpal tunnel, I'm really surprised my wise ol' onc didn't figure that out, or the second opinion BC onc, for that matter. Aging bodies sure start falling apart on us! It really struck me a few days ago how complicated that is! You would think that just having MBC would be my biggest worry, but it's really symptoms and side effects--poor balance, coordination problems with my hands, faatigue, poor short term memory! Gardening, going for walks, grocery shopping alone, playing with local grandddaughter--all things i used to take for granted, but are beyond my current abilities! I'm glad your hands are better than they were! I hope you can continue on a path of healing...................... hugs, Pam
One of the listed side effects of anastrozole is carpal tunnel. Probably all the AIs have that. I can feel it coming on when I type a lot. Then I try to find something to do that doesn't involve right hand. Not easy!
My typing has gotten so much worse, too! I often spend as much time correcting typpos as writing them in the first placce....... see <--- what I mean?!LOL
I took up making art a few years into my treatment. I’m having more fun than I’ve ever had in my whole life doing this. If I can’t use my hands, that will be the end of me. I already had to give up crocheting. And my eyes are also getting pretty bad. My feet are worse now too. So ….. off I go to the onc, today, for a look at what next as my last CA Marker blood test went up by 199, to 422. She thinks, with the higer markers, and my pain level rising, that Ibrance and Anastrozole is not working anymore. So I may be starting on a second line. After 5 years. Not bad going. But scared it may be xeloda! 😬😬😬
Hello Fellow Warriors! I have read and learned from all of you since I was diagnosed early in 2019. This is my first time commenting. I was on Letrizole for my first couple of years and then developed carpal tunnel. My onc switched me to fulvestrant and referred me to a surgeon for the carpal tunnel. I was too depressed at the time and did not follow through with that referral. I am very happy to report that the carpal tunnel went away without any intervention!! Woo Hoo…too bad the MBC won’t do the same! You are ALL in my thoughts, all of the time ❤️. Jill
I had never heard about the carpal tunnel connection to the meds I've been on for years. Onc never mentioned it. Maybe I would have had better results if it had been diagnosed earlier! It seems as tho the health care system has let me down! Grrrrrrr!
Greetings😇: Sister/warrior/Advocate. My cousin had both of his surgeries done a year ago. I am happy to say he said it fixed the challenges he was having. He didn't have the complication of neuropathy. I hope/pray the surgery works out well for you also😇🙏
Thank you!
Have you tried fulvestrant? I am currently on the brand name of Faslodex, with no side effects for the last 6 months. The AI's are brutal drugs. I encourage you to switch AI to something else before investing in surgery. After 8 month on anastrozole I could hardly move--pain in 8 joints--and after stopping it it took 6 months for all joint pains to resolve. Best to you!
I was on Faslodex for over 9 years and found it easy to be on, too. I'm a long time metster, 19 + years, and my hand coordination has taken a major hit, so learning that I have carpal tunnel as well as neuropathy means that surgery may help and I'm willing to try it. The procedure is fast, like about ten minutes. Unfortunately, my cancer changed from E + tp triple negative earlier this year. After some dosage lowering, Xeloda seems to be doing well at keeping the cancer under control. It's my first real chemotherapy and I feel very fortunate to have done as well as I have for so long.
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