11 WEEKS AFTER PARTIAL KIDNEY REMOVAL AND STILL IN PAIN ,CANT BEND,WEAR JEANS ETC

FormerMember
FormerMember
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Hi everyone, first post ever on a forum site so please bear with me.

I am/was a single "healthy"(or so I thought) male of 55 years never smoked not overweight good diet ,moderate social drinker etc.

I was diagnosed with RCC back in Jan/feb with a 4cm Cancer tumour in my left Kidney.

This was found due to a scan which I had for a Liver cavernous Hemangioma . That's another topic in its self which does not belong here I guess.

It was one thing being told of the liver problem but to be hit several weeks later with the news I have cancer was a double whammy.

I underwent a partial Nephrectomy on the 16th March ,a date I will never forget. It was done with the Da Vinci Robot. The surgeon was fantastic however the after care in a "top" London Hospital was appalling to say the least. My family found the money to pay for this operation due to the fact the tumour was growing and we could not seem to get a date soon on the NHS. I wont name the Hospital on this public forum but im sure the treatment in an NHS from what I have experienced would have been far better.

I would like to ask those of you that have had major surgery ,is it normal for the patient after the surgery to be told to climb from the operating bed/trolly on to the hospital bed with drains,tubes,catheter attached? That was what I was told to do straight after the operation back in my room.

The next day the catheter stopped working because a nurse decided to strap one to my leg rather than leave the bottle on the floor. and it seemed to cause a vacuum , The kidney drain came out and had to be replaced, Blood seemed to flow back up the Morphine tube! The drain bag was put in bed with me at one point and seemed to have collapsed like a punctured football. How can anything drain into a bag like that? This was my first visit in Hospital and I could go on an on about my stay. It just seemed to lack professionalism . Day staff ok but the nights were quite frightening to say the least. Quite what would have happened in an emergency I don't know. Someone was ment to come in and show me how to get in and out of bed and what gentle exercises I needed to do ,a physio  I guess? But never saw one.! No one seemed to be in charge.Dreadful place.

I am 11 weeks post operation and as per my heading , I am still in loads of pain in my stomach area.I cannot lean forward to put a left sock on without it feeling like someone is putting a knife through my belly lower region. My chest is tight and there is a burning sensation most of the time. The areas where the incisions all six of them are sore and swollen.My stomach is still bloated even with 10 lbs weight loss. I can only just drive as it was too painful to press the clutch down. I cant even open my garage door,its up and over and too heavy. My ribs at the ends hurt. Constant aching . I can walk and stand but sitting down and getting up again really hurts. Its like something is tearing in my stomach or something has been stitched to something that needs to move freely. Anything which squashes the stomach towards the thighs caused a lot of pain.

After several visits to the

The GP suggested they might have left an instrument in side me!  So I was x rayed and told I was very constipated and that was causing the problems. That was about 6 weeks ago now.

Another x ray and its not really showing anything. I think I am waiting for a CT scan,the GP has written to the surgeon but still not heard anything.

I cant wear trousers or jeans if I have to sit down without undoing them because its agony on the places where the incisions were. It seems to be worse where the drain was which is interesting.

Its trakky bottoms for most of the time which is so not me.

Now the operation is over and im still alive ,friends seem to have all dispersed, with the theory and attitude "well you don't have cancer anymore its been taken away" All over ...move on ! If only they knew half of it. And if I had a £ for every time someone said "im there for you if you need me" what a load of old tosh! Talk is cheap ,very little action when you really do need help. Please tell me im not the only one who thinks this or experienced this?

So I am at my wits end ,I am unable to work anything other than some computer work but after a while its to uncomfortable to sit at a desk because the stomach is squashed .

Tasks like bending down to pick up a towel or even standing at the wash hand basin leaning forward to wash my face is painful. This should not be the case after 11 weeks post surgery. I followed the instructions of the surgeon after the operation ,two short walks per day ,keep moving around.

I feel so much is wrong inside me and I cannot get any one in the medical profession to give me an answer as to what the problem is . I keep asking ,getting appointments ,being prodded and examined but still no answers. I cannot continue to live like this . Im even told i need counciling ! I just need to feel normal again or at least feel like im improving day to day. I feel like a Frankenstein experiment..I am at the end of my tether feeling so rotten all the time day and night.

No one has any answers.

I have read on here some peoples experience with this operation of virtually being house bound still after about a year and I can fully understand and sympathise

I really think as  patients we should be made more aware of how serious and complicated and the possible outcomes of this operation and not to expect a fast recovery all the time. Its far from straight forward and fraught with possible further problems.

We have all heard people say they know someone who "was playing football after a few weeks of having it done" nothing to it , "you can live easily with one kidney" All I can say is they haven't experienced anything like this.

I really would love to hear if anyone else has experienced similar to me and what was the result ?

Thank you for reading.

  • FormerMember
    FormerMember in reply to FormerMember

    It would be helpful to change the phpbb or whatever software McMillan use for these fora to enable posters' quoting: often, replies are all over the place and a single discussion can become truncated, unintentionally multi-threaded or distorted. Any chance of improving the situation would be a step forward.

    Mr Firman, thank you for your contributions to an important topic.

  • FormerMember
    FormerMember in reply to FormerMember

    Hello,

    I Do not think their person in charge knows too much about that. 

    Many places rushed to provide a forum but there are so many programs available. Hospitals especially hire IT companys to set them up with these sites. 

    It is still interesting to see how many people suffer with chronic pain after these surgerys, but the doctors never discuss the high rate of nerve damage associated with any Nephorectomy type surgery. I am also on the American Cancer Society's website. So many desperate people are reaching out for answers, while doctors cover it up and refuse to admit the truth. 

    These type of surgerys have a high risk of nerve damage. 

      There is no fix for this type of damage, and they refuse to take responcibility for after care or even suggestions beyond inreasonable suggestions.

    I am a survivor. 

    Sincerly ,

    S.

  • FormerMember
    FormerMember in reply to FormerMember

    Hello from admin.

    I'm sorry that you're finding the site hard to use - and thanks for providing some feedback about the issues.

    We don't have a quote button on the community - but you can tag members in to a conversation by adding an @ symbol before their name. This should also send them an email notification

    You could also copy and paste the text that you're replying to :

    It would be helpful to change the phpbb or whatever software McMillan use for these fora to enable posters' quoting: often, replies are all over the place and a single discussion can become truncated, unintentionally multi-threaded or distorted.

    We're doing some work to improve the site on Wednesday morning.
    Usability on the community is an ongoing project and we're working to improve it - all feedback is welcome and you can contact us at community@macmillan.org.uk

    Kind regards,
    M.

  • FormerMember
    FormerMember in reply to FormerMember

    Hello Michael

    Please accept my apologies, it wasn't meant as criticism, merely a loose request for possible inclusion of quotes at some point. Quoting directly simplifies exchanges from one particular person to the next within a single thread -obviously I am unsure what flavour of phpbb or equivalent you use. Copy n paste can be a royal pain on Android tablets (pardon pun) sometimes, especially with fingers like tree trunks.

    Warm regards,


  • FormerMember
    FormerMember in reply to FormerMember

    Forza,

    I went to many different doctors concerning my condition.

    How do you think I felt when I was told that" There isnt any fix for your condition?". 

    Like it or not, its the truth.

    I am not going to coddle people and fill them with LIES .

    Do you suggest I tell them the pain is in their HEAD? 

    Part of dealing with chronic pain is reaching the reality that the nerve damage is permanent and it wont be getting fixed.

    I already went that route.

    If I am wrong, point me in the direction of a known doctor that can fix my Chronic pain issues.

    After learning the truth, I then had to decide the next step in my life.

    I had to give up a job I LOVED and worked very hard at to achieve. 

    Sadly it also required me to use my body.

    I am disabled/ retied because of my condition.

    I learned how to deal with the pain as best as I can and yes, I use an Opiod medication.

    I tryed all the other known methods, they didnt work.

    If you read ANY of my replys, you will also see I agree, everyone is DIFFERENT as to pain management.

    What works for one, may not work for another.

    I refuse to lie and tell others that have had this surgery that their pain will go away 100%. Mabe it will be different depending on the nerve damage. 

    It is best to stop going to those doctors that are NOT working with a patient as far as pain management that works. 

    Especially the ones bent on physical Therapy or say the pain is in their heads.

    I heard that, I lived it.

    Unless you are a sufferer, I do not see where your comment means anything.

    Living Chronic pain is nothing I would wish on anyone, even those that claim they understand. 

    I survive on day at a time, I do things according to what my pain levels let me. Its not easy.

    I look forward to everyday, but live in the reality that pain can ruin my plans for that day. 

    Its just realiry, and I deal with it the best I can.

    Thankyou, 

    [edited]

  • FormerMember
    FormerMember

    Hi !! You are having a very difficult time. I had the same surgery myself. An assisted robot performed my surgery. With all the symptoms that follow this type of surgery I think is pretty normal. I studied about this procedure on internet so I could understand better. I didn't have a drain tube. But had one when I had breast cancer surgery. That was awful. It took awhile for me too recover from that. As you know they blow the body up with gas too be able to get to the kidney they are performing surgery on. You really aren't supposed to be driving a stick shift or doing anything to lift for at least six months. Could be longer for some. I hope you are feeling better soon. I also had too get on the bed when I was transported too my room and got on the bed in my room. Also had too walk around the hospital the next day. That was great for me. I needed that as I knew when I went home I would need too walk a lot. My neighbors needed my help so was able to drive them too they're Dr appointments. Hope to hear how you are doing.

  • FormerMember
    FormerMember

    Well I texted you about your surgery. But when I came back too the site it isn't here. Not happy about this.

  • FormerMember
    FormerMember in reply to FormerMember

    Hi  

    Is it the message that is above ?

    As there is sometimes a slight delay in messages appearing.

    G n' J

  • FormerMember
    FormerMember in reply to FormerMember

    Hi, 

    I had a partia l Nephorectomy 12 Years ago and suffer with chronic pain. Mine was done manually and due to scar tissue and nerve damage, I deal with extreme pain not limited to numbness and complete loss of feeling below the insision site to just above the knee. A large bulge on my left flank indicating loss of muscle receiving any imput( atrophy).

    This doesnt happen to everyone, but the risk is VERY HIGH.

    No one explained this risk to me before my procedure.

    I had a stimulator inserted to try and help with the pain, but was ineffective. I know rely on Fentinal patches to help with the stabbing, plucking, cramping, dead feeling in my side. I have a burning sensation above the insistion site as well as deep tissue and deep pain issues. 

    I pray you fair much better than myself and a few others.

    I wouldnt wish this upon my worse enemy.

    Sincerly, 
    MrUsername

  • FormerMember
    FormerMember in reply to FormerMember

    Hello fellow sufferers 

    I'm 3.5 weeks post op open partial nephorectomy and I'm glad the pain I'm feeling that I am not alone! My stomach feels like I have a brick in it the pain is horrible not to mention the nerve damage on all my side round to stomach I can't bear even a t shirt against my skin, the only way to describe it is my stomach has flu! I go back to see the consultant in 10 days until then I will carry on suffering! 

    Just want to say thank you to all for this forum it's a great help.

    Andi 

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