I'm looking for o

Lisa7610
Lisa7610 Member Posts: 11
edited March 2018 in Kidney Cancer #1

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  • Wehavenotimeatall
    Wehavenotimeatall Member Posts: 488 Member
    edited February 2018 #2
    Hi lisa

    sorry to hear you are still struggling but well done on the NED ... long may it continue

    you have had a bad time

    sorry I’m am a newbie and have not heard of this before

    is there no surgery options you can explore

    i had muscle problems after two c sections  and five months after my LPN I still have spine issues.. surgeon not convinced it is related but I was great before

    did you ever have a c section 

    what size was your tumour

    is your non functioning kidney it causing problems to your good one

    Annie

     

  • donna_lee
    donna_lee Member Posts: 1,045 Member
    #3
    More than the double whammy!

    Welllll, the great news is the cancer hasn't recurred.  I think I had the same type of surgery for a full removal of R. kidney and part of my liver during the original surgery; but the muscles didn't separate.

    My daughter had 2 large babies, both by C-section, and the abs herniated.  She's a teacher and about all she can actively do is walk, a lot.  Every day, plus participates in walking relays, does, 5K's, etc.

    It's probably late to do repairs effectively.  But have you seen any kind of plastic surgeon?  What about wearing a back/abdominal brace that will allow you to get up and walk.  Even your PC Doc could help you with that issue and perhaps write it as an Rx item.  Inactivity can affect your entire body, muscles, digestion, the other kidney, etc.

    I understand part of the issue with the back and muscle pain.  The surgeons separated 2 of my ribs to access other organs that had to be removed and that sometimes causes muscle spasms along the spine.

    Keep us posted on what you can find and how you are holding up.

    Hugs to you.  Remember you are a Survivor, and we don't give up.

    donna_lee

  • Lisa7610
    Lisa7610 Member Posts: 11
    #4
    Wehavenotimeatall said:

    Hi lisa

    sorry to hear you are still struggling but well done on the NED ... long may it continue

    you have had a bad time

    sorry I’m am a newbie and have not heard of this before

    is there no surgery options you can explore

    i had muscle problems after two c sections  and five months after my LPN I still have spine issues.. surgeon not convinced it is related but I was great before

    did you ever have a c section 

    what size was your tumour

    is your non functioning kidney it causing problems to your good one

    Annie

     

    Size was between the size of

    Size was between the size of an orange and a grapefruit. I've never had a C-section. I don't know that the dead kidney is causing problems but my living kidney has increased in size to try to compensate, which is a good thing. My GFR has been down in the 40s and is recently at an all time high, since the surgery, in the lower 60s! I've been busy over the years exploring pain management, physical therapy, back surgeons, nutrition, supplements, having return cancer scares, and trying to deal with all the health issues that this sedentary life has caused .  .  .  I did explore possible mesh to hold it all in but thats only cosmetic when you consider that there still won't be muscle connection. One good sneeze could cause even more problems than I already have, so I passed. Now that the muscle pain has graduated from not only my back but also into my hips and more rescently into my upper thighs, I'm researching more and more. I stumbled on doctors talking about possible solutions on the internet so I've decided to come back here to see if I can find anyone else who may have found the right doctors yet. There were a few people here in 2010 who were having the same problem so I'm hoping to find more now. The doctors I've been to don't understand squat about what's going on with me so I know I have find the doctors who will. I don't expect to find them in my small town anymore.  

  • Wehavenotimeatall
    Wehavenotimeatall Member Posts: 488 Member
    #5
    Lisa7610 said:

    Size was between the size of

    Size was between the size of an orange and a grapefruit. I've never had a C-section. I don't know that the dead kidney is causing problems but my living kidney has increased in size to try to compensate, which is a good thing. My GFR has been down in the 40s and is recently at an all time high, since the surgery, in the lower 60s! I've been busy over the years exploring pain management, physical therapy, back surgeons, nutrition, supplements, having return cancer scares, and trying to deal with all the health issues that this sedentary life has caused .  .  .  I did explore possible mesh to hold it all in but thats only cosmetic when you consider that there still won't be muscle connection. One good sneeze could cause even more problems than I already have, so I passed. Now that the muscle pain has graduated from not only my back but also into my hips and more rescently into my upper thighs, I'm researching more and more. I stumbled on doctors talking about possible solutions on the internet so I've decided to come back here to see if I can find anyone else who may have found the right doctors yet. There were a few people here in 2010 who were having the same problem so I'm hoping to find more now. The doctors I've been to don't understand squat about what's going on with me so I know I have find the doctors who will. I don't expect to find them in my small town anymore.  

    My thoughs

    are with you

    so horrible to be in daily pain

    Especially when no one is helping you

    i understand 

    i hope someone here can suggest something 

    Annie

  • CRashster
    CRashster Member Posts: 241 Member
    #6
    Belly Bump

    My surgery was almost two years ago, been NED ever since. However, I do now have a large belly bump. Not quite grapefruit, but large enough to notice. The docs told me, straight up, that they would not fix it because of current lawsuits concerning hernia mesh. It does keep me from being as active as I would like. But, it does make a cool sound when I squish it back in. Great party trick! Gross out your friends! Sorry that you're having a rough time.

  • Wehavenotimeatall
    Wehavenotimeatall Member Posts: 488 Member
    #7
    Ahhhhhhh

    Saw a physiotherapist today

    thinks my issues are nothing to do with surgery

    all to do with my brain wiring recovering from the trauma of the surgery etc

    back to square one

    Ahhhhhh

    Annie

  • Lisa7610
    Lisa7610 Member Posts: 11
    #8
    CRashster said:

    Belly Bump

    My surgery was almost two years ago, been NED ever since. However, I do now have a large belly bump. Not quite grapefruit, but large enough to notice. The docs told me, straight up, that they would not fix it because of current lawsuits concerning hernia mesh. It does keep me from being as active as I would like. But, it does make a cool sound when I squish it back in. Great party trick! Gross out your friends! Sorry that you're having a rough time.

    Those are your organs you are

    Those are your organs you are squishing lol Depending on the exact location, could be intestines or liver etc. Mine is so large that I look very noticeably pregnant on my right side. I had a routine X-ray and, not knowing my situation, the radiologist wrote that he suspected I had pneumonia. I had to go to a lung specialist who confirmed that the shadows in my lung X-ray were my organs protruding out of my body and high enough to shadow my lungs. If/when it’s time for you to have regular colonoscopies, make sure you bring your hernia to the attention of the gastroenterologist because if your intestines are protruding outside of their normal location, or just not in the location they are supposed to be—which I suspect that is the case with most any hernia, it’s possible for damage to be done to your intestines during the colonoscopy—because of the hernia. Lucky me, I can’t do them. Not sure how true this is—maybe she was just trying to give me peace of mind, but my Oncologist assures me that the old Cologuard test is just as effective at detecting intestinal cancer as a colonoscopy is. Be careful you don’t hurt yourself entertaining your friends lol.

  • Lisa7610
    Lisa7610 Member Posts: 11
    #9
    donna_lee said:

    More than the double whammy!

    Welllll, the great news is the cancer hasn't recurred.  I think I had the same type of surgery for a full removal of R. kidney and part of my liver during the original surgery; but the muscles didn't separate.

    My daughter had 2 large babies, both by C-section, and the abs herniated.  She's a teacher and about all she can actively do is walk, a lot.  Every day, plus participates in walking relays, does, 5K's, etc.

    It's probably late to do repairs effectively.  But have you seen any kind of plastic surgeon?  What about wearing a back/abdominal brace that will allow you to get up and walk.  Even your PC Doc could help you with that issue and perhaps write it as an Rx item.  Inactivity can affect your entire body, muscles, digestion, the other kidney, etc.

    I understand part of the issue with the back and muscle pain.  The surgeons separated 2 of my ribs to access other organs that had to be removed and that sometimes causes muscle spasms along the spine.

    Keep us posted on what you can find and how you are holding up.

    Hugs to you.  Remember you are a Survivor, and we don't give up.

    donna_lee

    I wrote you a nice long reply

    I wrote you a nice long reply the other day but somehow I lost it. So frustrating! Anyway, the plastic surgeons in my little town won’t even see me. I’m just starting my quest for the right surgeon and the only one I’ve called so far in a larger town doesn’t want to see me either. Abdominal braces are only helping a tiny bit and that’s only cosmetically. Back braces only help to keep me in a straighter position but they can’t replace the need for the abdominal muscles. I opted against mesh because that’s only a cosmetic fix . . . Abdominal muscles are still needed for core strength. I can get up but I can’t be up for long . . . “Walks” are completely out of the question . . . I have to either be leaning on something (and only for about 3 to 5 minutes at a time) or making it very short distances from one spot to the next (like 20 or 30 steps from car into a store where I can quickly leaning on a cart). I can’t “shop” either . . . I have to have a list and try to get out as fast as possible. I've often been stuck inside the store and unable to get out without strangers helping me. So embarrassing.  The pain used to only be in my lower back. Over the years it seems to have worn those muscles out and I automatically became more dependent on my hip muscles. Now those seem to be wearing out and my upper thigh muscles are starting to bother me, in addition to the lower back and hip pain. I’m sure that eventually those will wear out too. I don’t think there are any more alternative muscles left.

    yikes! Separated ribs?? That’s gotta hurt! Thank you for your thoughts. Its nice to finally sort of talk with people who can grasp that this is a real problem. Most people, seems to be those who haven't experienced some kind of abdominal issue, just assume it can easily be overcome and that I'm either lazy or not just not applying myself which couldn't be farther from the truth; I'm in complete misery being unable to resume my extremely active lifestyle! 

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