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Things your Surgeon may not tell you

starfari's picture
starfari
Posts: 17
Joined: Mar 2012

Depression can hit hard after a few days
you will be asked to pass gas or have a bowel movement regardless of how much it hurts
lying on your side (either one) may be a thing of the past for a long time
sleep will elude you
random pain will make appearances
you may feel as if they put something in and not taken it out
you may feel intense pressure where the kidney was removed
eating large meals can cause discomfort
while you are bloated from the compressed air pumped in you during surgery you may sound like a hollow drum inside
you may bulge and bunch where muscles were cut for up to a year
the incision sight may itch and pinch at any given time
you may loose feeling around the surgical sight
your body can take weeks to wake from the anesthesia
nerve pain can strike months after the surgery
Phantom kidney pain may visit you
just as you begin to feel a bit like your self new maladies may appear
your ribs may hurt after a few weeks or months
bending down to pick something up causes stress and pain
coughing and sneezing can be very uncomfortable
sex (woman) may be pain full from internal swelling
Perscription pain relief may not be forthcoming from your surgeon
abdominal binders can help relieve discomfort
information on pain and surgery is relatively non existent (studies are limited)
finding others going through the same experiences can make all the difference; every one reacts to surgery differently. We all come from our own perspective and cultural beliefs. These are my experiences I own every one of these symptoms and I share them with many and for every one that I feel there are others that have had an entirely different result. I have spent countless hours trying to get a hold on what happened to my body and only here on this site did I get answers and support. My Surgeon was a very good one he was careful experienced and well recommended. He did what he could to save my kidney but was not able to. I had a Robotic transitioned in to an open nephrectomy so I have the big slice and 5 smaller incisions around my middle so I think I may have more extreme pain due to getting so many incisions so please do not take this blog as a scare tactic..it is simply a FYI. Good luck to all of you who read this My hope is that You will have a speedy and easy recovery but if not know that you are not alone..people care and share.

icemantoo's picture
icemantoo
Posts: 1627
Joined: Jan 2010

My surgeon wrote on my discharge summary that I was discharged without pain. So much for the surgeon not being forthright and honest about the pain.

Icemantoo

sunlover_56's picture
sunlover_56
Posts: 110
Joined: Apr 2012

I am VERY new... Just had my surgery (left kidney and mass removed) 6 days ago. I am home now and hurting, swollen and scared, but reading all your posts have really helped. I will continue to keep logging in to read more. Thank you

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Tell us more about yourself, your diagnosis, any details you know about the tumour, operation etc - if you care to (there's no necessity to do so) and maybe we can give you some well focused advice that might help. You're through the tough part already and it will all get easier from now (aside from the eternal problem of waiting for more information).

How did you manage to post, today, among the messages of 22nd March - I'm just guessing it was that old black magic of iceman in his tux!? - can't fight that kind of magnetism. But, you'll be more visible if you post at the end of the thread. Ask all the questions you want and you'll get help from the great crowd here.

stckdg
Posts: 1
Joined: Apr 2012

G'day all. I recently have entered into a serious relationship with a man who had his right Kidney, removed due to cancer, in August 2011. For the most part he is doing brilliant. The couple of growth on his lungs (migratory Kidney cancer off shouts)are actually shrinking with the medication he is trialling. All good news as far as the surgery and his prognosis of many more years ahead of him.

My questions, being new to all of this, are in regards to diet and ... hmmm, how do I ask this? R has reflux and gas after nearly everything he puts in his mouth. He is still bloated from the surgery, and I am not sure what or how to help him with this next step.

R is working out regularly, plays squash, weights, water skis ... and lives a very physically active life.

Where do I find information on how to get 'things' calmed down in there?

Thank you before hand. I have been on so many sites looking for help without getting any.
Stckdg

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

stckdg, Oz isn't short of experts in nutrition and dietetics is it? If R is so physically active then the problem would seem to be either medical or dietetic. He shouldn't still be bloated at this stage. What do his doctors say about it? If he's fine on that front, why not talk to a dietitian and explore possible food intolerances?

At worst, it's not too dire a situation, all things considered and given what he's gone through and will probably clear up spontaneously as he continues to return to normal - it takes months to fully get back to one's own version of 'normal'.

By the way, how did you come to post at this odd place in the thread instead of at the end?

DogRescuer's picture
DogRescuer
Posts: 50
Joined: Feb 2012

Star, thank you SO MUCH for sharing your list! My surgery was 3 wks ago and I thought I'd be back to 'normal' activity by now and I'm just not. Of course, I can do small tasks, drive and be somewhat active, but my stamina sure isn't back up to speed. I think what is most disturbing is the soreness that moves around--it'll be sore in one spot for a few days, then I'll be fine and then sore in another place.

I guess all this is 'normal'. I was sure glad to read your post this morning!

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

I guess if surgeons gave patients a list like that they'd soon be out of business!

I imagine most of us suffer only a small proportion of the sequelae you've listed. I recognise many from the accounts of others although I've experienced only a few of them myself. Your situation sounds to me to be very unusual and I think you need to have a serious talk with your GP about all you're going through. I notice that on your other thread iceman has, 9 days ago, already wisely suggested that you address your concerns with both your surgeon and your GP. (I think it's a pity you didn't post this on the thread you'd already created about it, rather than start an entirely new thread.)

Have you followed iceman's advice? If so, did you get a brush-off or useful help? As others have said and shown here, we all react differently. My op was a couple of weeks before yours and the comparison is interesting. Like you, I had a largish tumour for which a laparoscopic procedure had to be converted to open surgery. I have three other incisions, like your four, and a main cut similar to yours except mine is horizontal, yours diagonal. You've not mentioned the size of your tumour but it must have been large for such a cut to be needed so you were unusually lucky that it turned out to be benign. How large was it and how was it described? I wasn't so fortunate - mine was very advanced cancer, final stage, final grade and extremely aggressive and I'm just about to go through the whole thing again for a new tumour to be cut out.

You haven't mentioned your age or given much indication of your Body Mass Index, except to say you are on the heavy side but you seem to have run the whole gamut of unpleasant after-effects. In contrast, other than the odd feeling of abdominal discomfort, I haven't had any of the problems you have encountered, other than an extensive rash and itching probably due to medication. I'm lean and athletic and very fit and strong for a man of almost 70 but my condition was one of very serious illness whereas you seem to have been lucky to be essentially perfectly well.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

You've said that you are strong and that you are "a stubborn resilient person" and "I think I tolerate pain as well as the average person".
All of this suggests to me that you shouldn't be suffering all of the experiences you have listed and you ought to have further discussions and investigation, if that looks necessary.

My first reaction to your list of problems was to think 'Thanks for nothing!' considering I'm now facing the same surgery again, less than 4 months from the first run. Then I thought: even if your list gives people about to go for surgery the heebie jeebies that is outweighed by the comfort it will give to others currently suffering any of the unpleasant problems you've outlined. Then I reasoned that it may also comfort those about to have surgery if and when they have such experiences afterwards - they will be re-assured that others have felt the same way. Finally I concluded that it will probably have help[ed a lot of patients, at the small cost of scaring a few.

But, at the end of the day, I still think you are suffering unduly and ought to take it up with your medical advisers to get help in coping better with the pain and this will also speed up your healing process. Don't be a martyr when you don't need to.

starfari's picture
starfari
Posts: 17
Joined: Mar 2012

I saw my surgeon this week and he informed me I am not feeling any pain because there is no more kidney where the pain exists...I jumped of the table and not to kindly let him know I was indeed feeling pain and I told him what activities caused me pain. He told me to loose weight and take advil. I am 20 pounds over weight I gained that 20 last summer after having my hyper thyroid treatment ( they killed my thyroid) I became hypo thyroid. I am 56 and bike regularly eat a healthy diet with some exceptions (chocolate is my weakness) I will be making an appointment to see my GP in the near future to discuss pain and have my regular check up which I have neglected since I have been spending so much time in the "specialists" offices in the past year and a half. ON the positive side I am feeling less pain in my ribs as each week passes and the pressure of the bulge on my surgery side is less however the swelling my surgeon cannot see is still there I kind of look like i am pregnant on my side. I am so glad to hear from all of you your support definitely makes a big difference in my mental health even though I have wonderful family and friends "it takes one to know one"

DogRescuer's picture
DogRescuer
Posts: 50
Joined: Feb 2012

I was told I could no longer take any 'NSAID' pain killers (Advil, Motrin, and even my arthritis med which is similar to Celebrex). Only Tylenol. ugh. I personally think Tylenol is a sugar pill. So I called today and asked for *something* in between Tylenol and Oxycotin (I don't want to take the hard stuff I have remaining from surgery). She prescribed Tramodol this afternoon, so I'll try that.

So glad to hear the rib pain lessens after a few more wks. I'd sure hate to get a cough or start sneezing about now.

BTW, I'm 63 and sailed through breast cancer surgeries 3 yrs ago. So this abdominal stuff is knocking me for a loop. I just expected to be good as new in 3 wks.

starfari's picture
starfari
Posts: 17
Joined: Mar 2012

I did go to my GP and he immediately related my pain to sympathetic nerve pain from trauma which is a unavoidable part of surgery. He has put me on a nerve pain blocker and gave me the emotional support I needed to move forward. It may take a little time for the meds to kick in so I now have some pain meds to help me when times are tough. Last night was TOUGH I woke orom a sound sleep screaming in pain..what a rude awakening for me and my spouse!I may get through this yet! Thanks to all for your words of wisdom and support. As for the NSAIDS I was told to use them to help relieve the swelling in my side for the time being which I did for a few days (they helped my arthritis stiffness from sleeping on my back)And to you DogRescuer it is amazing what a little surgery will do to knock you for a loop! I am reminded everyday of the unbelievable sacrifice others have made by donating a kidney I am assounded by your valor.

j_rod
Posts: 125
Joined: Mar 2012

i appreciate your comments starfari. My surgery is Tues. Let me know if your new meds help. If so, what prexcription. I want to be prepared,just in case. PS - DogRescuer - Let me know if your meds work. I have a script for the med you mentioned you have a script for - which was for another condition last year. I still have some. I decided that if I needed pain meds, I will use them.

starfari's picture
starfari
Posts: 17
Joined: Mar 2012

J rod, I hope that you are well and that your recovery is fast as it is for quite a lot of people. The problems I have had are the same shared by many and for that this discussion board has been invaluable. Now as to my Meds...I have sympathetic nerve damage and it can only be diagnosed several months passed the expected recovery time for the surgery. I take a low dose of Gabapentin because of the whole one kidney left thing. Its pretty serious med, side effects include suicidal thoughts and actions, depression and violent thoughts...thank goodness I have had none of those but have made a few jokes about it! My road has been tough and as much as I hate being this complaining health obsessed monster my surgery has left being I understand now I had serious surgery (my family and friend tried telling me this early on)so patience is my mantra...and I ask for it every day.The best to you.

j_rod
Posts: 125
Joined: Mar 2012

I am actually recoving quickly with little to no pain. However, after being on this site, I am becoming aware of the difference between open and laprascopic and total vs. partial and robotic vs. traditional operations and the difference in pain. Looking at your scar, you had open surgery for a total nephrectomy and I was on the other end of the operation spectrum with a lap robotic partial. What I have learned from this site is that the open, which requires a large incision, is the slowest to heal/highest pain level. So my sympathies to you. As far as swelling, I have swelling. Not as much as yours obviously. I have 6 small incisions, but, yes, they are swollen. I put on a regular pair of pants yesterday and could not snap or button them. Where there is trauma, there is swelling - doesn't matter if it is a sprained ankle or an incision. I think doctors sometimes push us away thinking one more day and we will feel better - or maybe we are being big babies. But I am with you....keep your regular doctor in the loop - they want to be in the loop and be a part of it and they are willing to help. Good luck to you. I think iceman had a total open nephretomy and might be a big help as to the timeline of pain.

Neen
Posts: 6
Joined: Mar 2012

I have felt much of these "pains" I had my surgery 6 weeks ago and I was told I would be back to work @ 4 weeks from my surgeon. I to am very swollen and the nerve pain gets quite unbearable. I had pneumonia after my surgery and think I may have herniated a little I have a round hard spot about the size of a 50 cent piece right above my incision, they wont do anything for a few more weeks because nobody will do another surgery on me right know because of the major surgery and the pneumonia that followed and I only get Tylenol for the pain as well. It is frustrating and depressing when all you want to do is get better. Does that abdomen belt thing work?

starfari's picture
starfari
Posts: 17
Joined: Mar 2012

I still use the surgical binder quite often especially when I am very swollen (no rhyme or reason) It makes my side feel secure.I had my surgery 3 months ago. I started with robotic and it transitioned to open so maybe the fact that I also had 5 entrance wounds from the robotic arms may contribute to my healing time! After another month or so if the pain is still an issue I will suggest what was suggested to me.Go see your Primary. Surgeons have a different perspective on your healing and pain management.

DDBurkhardt
Posts: 13
Joined: May 2012

I had my surgery 3 weeks ago and while I feel better, I'm still in pain at the incision area. I developed pneumonia in the hospital and coughed so hard that I too feel like I could have give myself a hernia. My doctor told me a week after surgery that otc medicine should work and I shouldn't need pain meds. I thought he was crazy. How can you recuperate when you're always in some type of pain. If I stand too long, the left side of my back hurts terribly. I feel like it's going to be at least another 3 weeks or longer before I feel normal. It's so nice to have this network so you can see that you're not alone or crazy. I was wondering how you're doing now? Are you back to your old self?

Deb

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

j_rod, I REALLY hope iceman isn't still in pain - that would be truly depressing!

But he is a great source of information, just don't expect him to sugar coat it.

j_rod
Posts: 125
Joined: Mar 2012

You are a joker! LOL - I am laughing as I write this. I hope my lack of total explanation in my expository writing doesn't get me in too much trouble. Of course, I meant he has the knowledge, experience, and hindsight. And yes, he doesn't sugar coat it. He is very forthright. And of course, Tex is soooo knowledgable and has tons of practical links for you to go to. PS - If he were still in pain, none of us would have the operation.

icemantoo's picture
icemantoo
Posts: 1627
Joined: Jan 2010

Contrary to a recent posting, Icemantoo had a laproscopic radical nepherectomy back in 2002 (BF) before Facebook, rather than an open procedure. At least that is what I remember.

Icemantoo

sunlover_56's picture
sunlover_56
Posts: 110
Joined: Apr 2012

I just had laproscopic radical nepherectomy on April 4th 2012. Still hurting a bit. They called it robotic surgery. I have several puncture type wounds where the "robotic arms" went in to cut out the kidny and mass... and one longer wound where they took the kidney and tumor out.

j_rod
Posts: 125
Joined: Mar 2012

It hurts a bit. Sounds like you are doing well. Keep up the good work. And keep us posted.

j_rod
Posts: 125
Joined: Mar 2012

I guess I just remember you saying you had yours done 'back in the day' and I assumed it was open. I guess what you had done back in the day was a radical because they weren't doing partials? My mistake....so sorry.

starfari's picture
starfari
Posts: 17
Joined: Mar 2012

It's been 6 months since my open full nephrectomy and a few months since I last posted. I am back to work back to biking 10+ miles daily and no better regarding discomfort and swelling. I have been taking Gabapenten to help reduce nerve damage and it has helped in some ways ( no more excruciating spasms of unbearable pain) The abdominal binder is a daily thing and without it I surely would have gone mad from the constant pressure and discomfort from my side. At risk for sounding like a whiny big baby I have to say this is NOT what I bargained for I am more comfortable in this dis-formed and problematic body left behind after surgery but I continue to feel as if I have been compromised in an irreversible way. Thank you for the moment given to me to whine and vent. It could always be worse and I am thankful for every day I wake and breath. Many people..good people have not been so lucky. Today I'm a little teary and emotional about my health tomorrow I will be less so...onward and forward in this life.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

starfari, you've used the crucial word - 'tomorrow'. You have a tomorrow and doubtless many, many more to follow that one. Better still, as time passes you'll keep feeling better (and chase your GP if you don't!).

You've been unlucky. We both had open nephrectomies at the same time and I have a scar like yours, except it's horizontal, not diagonal. I had an immediate 'recurrence' in the renal bed and they opened me up again on the same cut, so I've got a bit more inflammation and a little fluid retention but no real discomfort and only very slight change of shape. We're different genders and I'm 10 years older but maybe the main divergence is in the difference in the cut and the tissues affected? (Just a wild guess.) I know you lead a healthy lifestyle and work to keep in shape, so just stick at it. That, coupled with the odd vent here and the passage of time is bound to see you feeling more like your old self. As iceman tirelessly tells all newcomers, it's major surgery and takes a long while for some of us to come back from.

Patience is difficult sometimes but keep up the good work and pursue it with your doctors if you really feel your recovery has plateaued.

starfari's picture
starfari
Posts: 17
Joined: Mar 2012

Thanks Texas....I am impatient and want it all to be in my past..I have high expectations for my recovery I guess. I'm off to the GP next week to talk to him about my expectations .He will most likely say the same as the supportive people on this site!

rae_rae's picture
rae_rae
Posts: 273
Joined: Oct 2010

Starfari- it's been 20 months since my surgery and i still have pain -for some of us it hasn't been an easy recovery. I posted to you before that my one year mark was a big turning point. I still have upper abdominal pain, numbness and the odd nerve pain (like glass shards along my scar). A year ago my life seemed centered around my pain. Now it's more of an annoyance. I hope your Gp can help, but know it does slowly get better in time.

littledarlin's picture
littledarlin
Posts: 102
Joined: Mar 2012

Thanks so much for the list and for the updates on how you are progressing after surgery. I am almost 3 months post opt now..and have not progressed a quickly as I would have liked to I just hate the distended abdomem and the tiring so quickly.. I am also struggleing with getting back to my normal. Actually I am not sure what my normal will be now..Plus we are addressing high blood pressure and a thickening of my heart on the left side, left ventrical. We are trying to avoid failure of my heart as the Doc put it and possible kidney failure from the diuretic I am now taking..So for me that are many factors that have come to light since my surgery..They do seem worst now..It does get me down some days so I guess I just wanted to vent about it too..Wishing you both a speedy recovery..

Littledarlin..

Bubbs21
Posts: 44
Joined: Jul 2012

I am impatiently awaiting confirmation of diagnosis and next steps. However, I was quite grateful to find this thread today. I remember when I had my hysterectomy, I found a similar discussion board, where my hystersisters, shared many of the experiences and tricks to recovery that most doctors do not discuss. It was a great way to build community and find solutions.

So for my female friends who have had Csections and radical hysterectomy, how does the nephrenectomy compare? Of course I am older and the seriousness of the surgery is greater, but I am thinking they both involved the abdomen and many layers of muscle. Insights are appreciated.

Keep the wisdom coming :)

rae_rae's picture
rae_rae
Posts: 273
Joined: Oct 2010

Sorry you have had to join the "club". I had a hysterectomy 11 months prior to my radical nephrectomy. My hysterectomy was a vertical cut up to my navel. For me, it was a Cakewalk compared to the nephrectomy. More fatigue, more pain, longer recovery...and for me, more complications. Its different for everyone ...but I think you will find this a little tougher. All in all, you will recover...just pace yourself and be prepared. I had asked my surgeon what I should to to prepare....he said exercise! He was right...the better shape you are in, the easier the recovery. There are many useful tips in previous threads to help the recovery process as well. And we will encourage you all.the way!

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

That was good advice you got Rae and exercise has a crucial role in preventing cancer, in preparing for surgery, in the early stages of recovery and in staying healthy afterwards - in short it should be part of lifestyle whether you've got cancer or not.

A new study on exercise and cancer is this

http://www.cancernetwork.com/breast-cancer/content/article/10165/2069862

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