post radical nephrectomy developed a flank bulge

pjnewby

My husband had a radical nephrectomy from Stage 1 kidney cancer this past August. He almost immediately started developing a huge bulge - NOT a hernia. After a CT scan in October it was determined he has a denervation, flank bulge due to the nerves not regenerating from the flank incision. The muscle wall has thinned out and cannot hold back the 'gut'. The bulge is the size of a soccer ball at present. It literally is his 'guts' sticking out of his right side. Has anyone else had this 'side effect' for which we were NEVER warned about? We are not finding any help. One doctor said that a mesh can be used and they attach it to his ribs and pelvis (sometimes the spine) to support the side. But it restricts your movement and it feels like a brick is in your side and can cause more pain. The doctor also said that most docs stopped doing this procedure due to its poor outcome. Has anyone else had this happen? I'm sorry that some of you will be frightened by this and I'm sorry but I'm looking for answers.

Texas_wedge

Denervation
I'm sorry but not surprised that you haven't received an answer here so far. I believe the reason is that, so far as I am aware, no-one here will have encountered this problem manifesting in this way.

It sounds to be a very unusual and most unfortunate outcome. Unless they have experienced it themselves, contributors here will not want to venture into an area they know nothing about and will probably, like me have concluded that it's a question that has to be put to the specialists in this field. If I were in your position, I would be seeking several additional opinions and only from acknowledged experts with the relevant experience. Your doctors should be able to refer you to those best equipped to help.

starfari

Bulge
I have been carrying my side bulge for several months now and today it is particularly swollen and uncomfortable.... I have never heard of the problem stemming from the insides pushing out but I certainly can say it feels that way. I have had a sonogram and there is no issues in there but I do have some problems with the nerves that were cut. Good luck

jferrobrown

bulge
I have exactly what you describe. I had a radical nephectomy over 2 years ago and still have the bulge even after a mesh repair. The flaccid muscle just could not hold back anymore and hernias developed after six months post nephrectomy. The mesh repair helps but the bulge and future hernias are possible. The repair was worse for me than the nephrectomy. I use a 6 inch surgical binder to hold things in and it does make getting around much easier. Absolutely keep asking surgeons about what can be done. Ct and mri scans can identify a hernia/s. You do not want some organ falling thru and get strangled. Also there is a simple hands on exam/test to see if the incesion or muscle has ruptured. When I asked the surgeon is this common with a nephrectomy, he said he has only seen it a few times. Now this guys was in his 60s so my gut feeling is he was holding back on the honesty. With such a long incesion and cutting thru so many layers of muscles surely nerves will be severed. Keep an eye on it and have that repair surgery plan near at hand. Good luck!

pjnewby

jferrobrown said:

bulge
I have exactly what you describe. I had a radical nephectomy over 2 years ago and still have the bulge even after a mesh repair. The flaccid muscle just could not hold back anymore and hernias developed after six months post nephrectomy. The mesh repair helps but the bulge and future hernias are possible. The repair was worse for me than the nephrectomy. I use a 6 inch surgical binder to hold things in and it does make getting around much easier. Absolutely keep asking surgeons about what can be done. Ct and mri scans can identify a hernia/s. You do not want some organ falling thru and get strangled. Also there is a simple hands on exam/test to see if the incesion or muscle has ruptured. When I asked the surgeon is this common with a nephrectomy, he said he has only seen it a few times. Now this guys was in his 60s so my gut feeling is he was holding back on the honesty. With such a long incesion and cutting thru so many layers of muscles surely nerves will be severed. Keep an eye on it and have that repair surgery plan near at hand. Good luck!

bulge
Thank you for your honest response. My husband will have a surgery to repair his flank bulge May 31. It's very sad that you had this surgery and you still have problems. It's so hot where we live, wearing a binder is just miserable. He has no hernias that we know of so the strangulation issue isn't a problem. I'll keep you updated on the outcome. It's a trade-off to have it or not have it.

pjnewby

pjnewby said:

bulge
Thank you for your honest response. My husband will have a surgery to repair his flank bulge May 31. It's very sad that you had this surgery and you still have problems. It's so hot where we live, wearing a binder is just miserable. He has no hernias that we know of so the strangulation issue isn't a problem. I'll keep you updated on the outcome. It's a trade-off to have it or not have it.

success!
Just want to update you on my husbands recent surgery. His 8 inch incision has now turned into a 15 1/2 inch incision and his volleyball sized bulge is gone. Our surgeon was Dr. Guy Voeller in Memphis, TN. We have found he is the top surgeon in the regional and is known nationwide for his specialization on hernias but what my husband had is not considered a hernia but is treated like one. They did not attach mesh to his ribs or pelvic bone. They cut away the denervated muscle, found viable muscle and sewed the mesh to an overlapped muscle. So far so good. The doc actually said that it will take 6 months before we will know for sure if it is truly successful. My husband will need to slowly get back to a normal lifestyle with attention to keeping his weight down and exercising. We are so grateful to the Lord for finding this surgeon! There is hope!!

Texas_wedge

pjnewby said:

success!
Just want to update you on my husbands recent surgery. His 8 inch incision has now turned into a 15 1/2 inch incision and his volleyball sized bulge is gone. Our surgeon was Dr. Guy Voeller in Memphis, TN. We have found he is the top surgeon in the regional and is known nationwide for his specialization on hernias but what my husband had is not considered a hernia but is treated like one. They did not attach mesh to his ribs or pelvic bone. They cut away the denervated muscle, found viable muscle and sewed the mesh to an overlapped muscle. So far so good. The doc actually said that it will take 6 months before we will know for sure if it is truly successful. My husband will need to slowly get back to a normal lifestyle with attention to keeping his weight down and exercising. We are so grateful to the Lord for finding this surgeon! There is hope!!

Success
That's great news. Good luck to you both and I hope you'll make sure he gives the procedure best poss chance of long-term results by doing as he's been told and keeping his weight down and exercise up. He'll feel a lot better if he does.

Texas_wedge

pjnewby said:

success!
Just want to update you on my husbands recent surgery. His 8 inch incision has now turned into a 15 1/2 inch incision and his volleyball sized bulge is gone. Our surgeon was Dr. Guy Voeller in Memphis, TN. We have found he is the top surgeon in the regional and is known nationwide for his specialization on hernias but what my husband had is not considered a hernia but is treated like one. They did not attach mesh to his ribs or pelvic bone. They cut away the denervated muscle, found viable muscle and sewed the mesh to an overlapped muscle. So far so good. The doc actually said that it will take 6 months before we will know for sure if it is truly successful. My husband will need to slowly get back to a normal lifestyle with attention to keeping his weight down and exercising. We are so grateful to the Lord for finding this surgeon! There is hope!!

Success
But, needless to say, I guess, building up the exercise work slowly and carefully in the way the experts will have told him to.

vross

abdominal flank bulge

I just read your post about your husband's flank bulge and surgical correction by Dr. Guy Voeller. I have the same problem on my left side.  I wondered how your husband has healed and if he is pleased with the results.  I am desperate to get an answer to this problem.  

rmore

vross said:

abdominal flank bulge

I just read your post about your husband's flank bulge and surgical correction by Dr. Guy Voeller. I have the same problem on my left side.  I wondered how your husband has healed and if he is pleased with the results.  I am desperate to get an answer to this problem.  

abdominal flank bulge

Hi Vross!

I have the same problem as you. I would like to find some solution to it. Please let me know what you find.

Do send me a message so we can talk in more detail.

Rmore

LisaD1964

rmore said:

abdominal flank bulge

Hi Vross!

I have the same problem as you. I would like to find some solution to it. Please let me know what you find.

Do send me a message so we can talk in more detail.

Rmore

I had a laparoscopic

I had a laparoscopic nephrectomy in September 2012 that has left me with a large grapefruit sized "hernia".  My family doctor sent me to a general surgeon who said he could "try" to fix it but that there were no guarantees.  Due to the location, there would be nowhere to attach the mesh.  I then went to the Shouldice Clinic in Toronto for a second opinion.  The Shouldice Clinic is renowned for hernia repair.  That's all they do, hernia repair.  They poked and prodded my bulge and indicate that it was not a true hernia, but "denervated abdominal wall".  The surgery I had in September destroyed the nerve(s) running through that part of my abdominal wall, causing the muscle to be flaccid.  The damage is permanent.  They indicated that the would NOT repair this for me.  They indicated that due to the nature of this beast, chances are that the bulge would return.  The "Shouldice" way of repairing hernias does not include using mesh.  While they could use mesh to repair this, they indicating that it would probably make it worse. They said the risks far outweighed any benefit that could be had from the surgery, so again they indicated that I could not have this repaired at their clinic.  I appreciated their candor and honesty and trust their advice as they are the hernia experts.  I am now trying to accept that I will have the bulge forever.  Luckily, I have no pain associated with the bulge, just discomfort and the fact that I have to wear really large tops to cover the bulge.  They recommended that I lose weight in order to possibly make the bulge smaller, or at the very least prevent it from getting larger.  I currently wear abdominal support to help me not have such an unsightly bulge.  I hope the weight loss will help.

foxhd

LisaD1964 said:

I had a laparoscopic

I had a laparoscopic nephrectomy in September 2012 that has left me with a large grapefruit sized "hernia".  My family doctor sent me to a general surgeon who said he could "try" to fix it but that there were no guarantees.  Due to the location, there would be nowhere to attach the mesh.  I then went to the Shouldice Clinic in Toronto for a second opinion.  The Shouldice Clinic is renowned for hernia repair.  That's all they do, hernia repair.  They poked and prodded my bulge and indicate that it was not a true hernia, but "denervated abdominal wall".  The surgery I had in September destroyed the nerve(s) running through that part of my abdominal wall, causing the muscle to be flaccid.  The damage is permanent.  They indicated that the would NOT repair this for me.  They indicated that due to the nature of this beast, chances are that the bulge would return.  The "Shouldice" way of repairing hernias does not include using mesh.  While they could use mesh to repair this, they indicating that it would probably make it worse. They said the risks far outweighed any benefit that could be had from the surgery, so again they indicated that I could not have this repaired at their clinic.  I appreciated their candor and honesty and trust their advice as they are the hernia experts.  I am now trying to accept that I will have the bulge forever.  Luckily, I have no pain associated with the bulge, just discomfort and the fact that I have to wear really large tops to cover the bulge.  They recommended that I lose weight in order to possibly make the bulge smaller, or at the very least prevent it from getting larger.  I currently wear abdominal support to help me not have such an unsightly bulge.  I hope the weight loss will help.

See a neurologist or

a physiatrist. Let them do a nerve conduction study. They will be able to tell if the damage is permanant, getting better or getting worse. Without an electromyelgram, they can't tell you that the muscles are denervated.

Gary M. White

foxhd said:

See a neurologist or

a physiatrist. Let them do a nerve conduction study. They will be able to tell if the damage is permanant, getting better or getting worse. Without an electromyelgram, they can't tell you that the muscles are denervated.

Pre-Bulge

I am going to have a rad nepr in three weeks and the doctor showed me where he was going to make the incision, cutting the two nerves, remove a rib bone and that I would have a bulge forever on my right side.....As long as I can take care of myself , I can deal with the bulge.....What else can I expect after the hospital stay, I am an outside person and I hate down time, but a guy gotta do the healing thing...

Blueraidermike

Gary M. White said:

Pre-Bulge

I am going to have a rad nepr in three weeks and the doctor showed me where he was going to make the incision, cutting the two nerves, remove a rib bone and that I would have a bulge forever on my right side.....As long as I can take care of myself , I can deal with the bulge.....What else can I expect after the hospital stay, I am an outside person and I hate down time, but a guy gotta do the healing thing...

My experience

Gary,

I just had a open partial in Feb, so its been 12 weeks.   As an ironman athlete, avid skier, etc I was concerned as you are.   I ended up having lots of complications and turned my stay into 12 days.    Again at 12 weeks, I am now biking at moderte intensities and doing a run/walk mix.    My surgical side still feels a bit off (still some swelling and numbness - no pain) but I am exercising and getting more active each week.

The key is the first 3-4 weeks at home, focus on healing.   Start walking.   But take it easy and you will be as active as ever within a few months.  

tishatemple

pjnewby said:

success!
Just want to update you on my husbands recent surgery. His 8 inch incision has now turned into a 15 1/2 inch incision and his volleyball sized bulge is gone. Our surgeon was Dr. Guy Voeller in Memphis, TN. We have found he is the top surgeon in the regional and is known nationwide for his specialization on hernias but what my husband had is not considered a hernia but is treated like one. They did not attach mesh to his ribs or pelvic bone. They cut away the denervated muscle, found viable muscle and sewed the mesh to an overlapped muscle. So far so good. The doc actually said that it will take 6 months before we will know for sure if it is truly successful. My husband will need to slowly get back to a normal lifestyle with attention to keeping his weight down and exercising. We are so grateful to the Lord for finding this surgeon! There is hope!!

So glad I was reading today. Thank you

My husband is almost one year post op for partial nephrectomy and he has had that bulge "his football" for pretty much the entire time post op. He has been to the dr several times with no help really whatsoever, his health has declined due to this. And would you believe he works in Memphis and that s also where he had surgery done!! the Lord is def. good. I m going to research this dr who did your hubs surgery. So blessed after such a frustrating lot of time.

Rosie5511

bulge after surgery

I had a robotic assisted right nephrectomy this past August 2013, I have the same bulge, so worried about it and scared to return to my doctor, so scared of bad news, the news of my cancer was a traumatic event for me.  Today I decided to do some research to see if I was the only one with this bulge and found that I am not the only one that it is a common thing.  I deal with my disconfort on a daily basis, some days are better than others.  Today happens to be a bad day for me, swollen abdomine and the bulge seems to have gotten bigger.  In the morning the Bulge is small with no disconfort but as the day passes the bulge becomes bigger and unconfortable, with some difficult in movement.  Feeling better that I am not the only one.  Must stay positive and continue to accept what has happend to me, I am sure that loosing some weight will help and I am now on the road to better health, the good thing about the whole thing is that I was saved since they caught the cancer in time and I have another organ on the other side that keeps me alive.  I just have to remember to take it easy, for now my body has to recover from a traumatic event.

Dessanbub1

Rosie5511 said:

bulge after surgery

I had a robotic assisted right nephrectomy this past August 2013, I have the same bulge, so worried about it and scared to return to my doctor, so scared of bad news, the news of my cancer was a traumatic event for me.  Today I decided to do some research to see if I was the only one with this bulge and found that I am not the only one that it is a common thing.  I deal with my disconfort on a daily basis, some days are better than others.  Today happens to be a bad day for me, swollen abdomine and the bulge seems to have gotten bigger.  In the morning the Bulge is small with no disconfort but as the day passes the bulge becomes bigger and unconfortable, with some difficult in movement.  Feeling better that I am not the only one.  Must stay positive and continue to accept what has happend to me, I am sure that loosing some weight will help and I am now on the road to better health, the good thing about the whole thing is that I was saved since they caught the cancer in time and I have another organ on the other side that keeps me alive.  I just have to remember to take it easy, for now my body has to recover from a traumatic event.

Bulge 3 1/2 years later

I too have this "bulge". I am a 37 year old female and look 6 month  pregnant on my side.  As the years have bone by, it has gotten larger.. I was diagnosed at the age of 33, had a full nephrectomy (14 inch incision). I have been told by 4 surgeons that there is nothing they can do.. I too was told it isn't a "hernia".    I am miserable, with shooting nerve pain.. I am being treated with gabapentin 1200 mg a day. This does help with some of the nerve pain.  Another suggestion would be spanks instead the ab binder.  It's less revealing and helps take some of the pressure off.   My doctor has suggested I wear the spanks ALL of time except when I am sleeping.  

Although I feel VERY blessed to be cancer free, my life has changed forever!!   I wish you all the very best and just message if you have any other "tricks" that may help one another.  

vross

UNSIGHTLY ABDOMINAL FLANK BULGE LADY

Rmore,

 

Sorry I didnt answer sooner.  I lost webiste and accidently didnt send earlier reply.  I did go see Dr. Guy Voeller in Memphis TN.  I was so devastated after I drove 6 hours to see him.  He told me that my bulge will likely continue to enlarge and that he wouldnt attempt to correct it until it is considerably larger.  I am always uncomfortable or in pain with it, aside from the embarrassment of it in my clothes.   Also,  causing me digestion issues.  My primary care doc thinks I now have at least a small hernia in my belly button area.

I always park in the expectant mother's reserved spots, I figure, heck, I may be 56, but I got a baby bump to fool security!  I am having another CT scan with contrast this Friday 01/31/14.  I have been in contact with Dr. Daniel Kim in Texas as he was involved in a research of this issue.  He is a neurosurgeon and wants to run nerve conduction testing.  I saw someone posted about this.  I have not seen Dr Kim yet, as he never answered my question if he could correct my dennervation injury.  I may try and see him this summer, I just so sick of dealing with this.  MY BULGE resulted from an Anterior Lumbar Interbody Fusion on 08/01/11.  Neither the thoracic or ortho surgeon informed me this could happen.  They never would admit it was a life sentence either or informed me what it was exactly.  I found out through my own research on line.  

I wonder if the lady whose husband had a repair by Dr. Guy Voeller is still out there. I would like to know how he is doing. Dr. Voeller indicated to me that the bulge always comes back.  If they can send a man to the moon, why the heck can't someone come up with a cure.  I recommend people google the research abdominal flank bulge, Dr. Daniel Kim.

Please feel free to emai me at vross0215@gmail.com

RainbowExplorer

Post-Nephrectomy Complication Known As An Abdominal Flank Bulge

2014-03-19

Hello,

Welcome to the small, select group of post-nephrectomy survivors who have been "gifted" by our surgeons with the miserable "complication" known as a "flank bulge" or "abdominal flank bulge" or "abdominal bulge" (all three terms are used interchangably, in the medical literature).  You do not need to have kidney cancer in order to develop this severe, permanent disability, nor do most urologists, neurosurgeons, or vascular surgeons (the only three types of MDs who are capable of creating this form of iatrogenic nerve injury) bother to inform their patients that they could end up with one of these "bulges", prior to performing a nephrectomy or other surgical procedure which involves a retroperitoneal (through the back side of the trunk) surgical incision.  It's considered a "rare" complication, but as no long-term studies are ever conducted on patients who have retroperitoneal access surgeries, there isn't a single person on the planet who truly knows just how common this type of disability is.  Here is a medical journal article which shows pictures of what a "flank bulge" looks like from the outside of the body (most other journal articles only show CT scan or MRI internal images of the condition):  http://thejns.org/doi/pdf/10.3171/2011.7.SPINE10887  .

Surgeons only think in terms of the short-term implications of their procedures, so rarely follow their surgical patients for longer than six months after any operation.  They couldn't care less what happens to someone beyond that point.  I have never had cancer, however, I did work as an RN, BSN (for 25 years), as well as, a clinical MSW social worker, and MAT-educated teacher.  Unfortunatly, I had chronic kidney stones which were poorly treated by multiple urologists and a nephrologist, resulting in a dozen different kidney stone incidents.  The last one resulted in me undergoing a left ureteroscopy (removal of the kidney stone via a scope going up through my bladder, into my left ureter to grab the stone and remove it).

Though I didn't know it at the time, my surgeon was 72 years old and grossly incompetent.  He ripped my left ureter completely out of my body, using the ureteroscope.  Instead of making any attempts to repair the damage, he panicked and did everything possible to "cover up" his botched surgical actions.  Thus, he phoned his old business partner and buddy, who was out playing a game of golf on a golf course far from the hospital, and had him come into the hospital to perform an open left nephrectomy on me (without my knowledge or consent, nor the knowledge or consent of my sister, who was my legal health care power of attorney).  He didn't notify a single surgeon inside the hospital, nor in any of the hundreds of MD offices surrounding the medical center where I had the Day Surgical procedure performed, as to what had happened.

Since he was in such a rush to cover up the mess he'd made, he used minimal surgical staff to transfer my body from the Day Surgical operating room where I was initially, to the main operating room suite.   They dropped my obese body, when transferring me from one OR bed to another, leaving me covered in giant black bruises, over nearly all of my trunk, as well as, over most of both thighs and upper arms.  Additionally, since they only used four staff to transfer me instead of the standard five, my head got left behind and the endotracheal tube was stretched so far/hard, my left lower incisor tooth punctured a hole through my left lower lip.  Thus, I found I had a gigantic, infected "fat lip", when I woke up in the ICU.

All my urologist would tell me about what happened, was that I'd had a "tear" of my ureter and that there was no way to repair the damage, except to remove my healthy left kidney (all complete lies, as there are at least eight different procedures standardly used to repair this type of damage - each of which is intended to salvage the healthy kidney).  Since he was in such a rush to chop out my kidney, he never bothered to test my right kidney first, to make certain it could support my body on its own.  It couldn't, as it had been badly damaged by a previous kidney stone.  However, since my left kidney was healthy and had always functioned normally, there had never been any previous indications of any form of chronic kidney disease in my lab (blood and urine) work.

So, I quickly discovered that I was, not only in Stage 4 chronic kidney failure (close to needing dialysis), as a result of my urologist's poor judgment and underhanded behaviors, but I, also, wasn't recovering normally from the surgery.  The post-surgical pain was horrendous, while my entire left lower abdomen felt extremely heavy and as if it were being punctured by multiple sharp rocks.  Eventually, another urologist diagnosed me as having a "flank bulge" - a deforming condition where the nerves coming off of the spinal cord and going through the 11th intercostal (inter-rib) space have been damaged/severed, causing paralysis of all of the muscles innervated by those nerves.  That muscle paralysis (for me) goes from my 11th left rib down into my left hip/butt area.  All paralyzed muscles wither away, as muscles require good nerve function, in order to maintain their normal size and abilities.

So, any CT scan or MRI taken of my trunk shows a bowling ball-shaped left trunk area - very much like being pregnant off of the left side of my body.  Those withered muscles are no longer strong enough to hold my abdominal organs into place where they belong.  So, they "bulge" out against my very thin muscles and skin.  When I am constipated, I can literally feel the contents of my large bowel, through the skin of my left side.  Most radiologists have little to no idea what a "flank bulge" is, so they label it a "hernia".  A "hernia" is an incorrect label and diagnosis, as a hernia REQUIRES that a HOLE has opened up in a muscle, permitting organs or abdominal tissue to jut through the HOLE.

With a "flank bulge", "abdominal flank bulge", or "abdominal bulge", there usually is no HOLE in the muscle wall.  All there is is an unusually thinned out (flattened) muscle wall which appears more like a round balloon or bowling ball in shape, rather than a sausage poking through a doughnut (which is what a "hernia" looks like).  However, with a "flank bulge" or any of the other abdominal core muscle "bulges", the muscles have withered to such a level of thinness, that it is possible for them to rip apart, if too much stress is placed on them. 

That is why I now have a 10 lb weight lifting restriction placed on me.  If I should attempt to life objects beyond that weight, it could place too much strain on my "flank bulge", causing the thinned muscles to rip apart, necessitating a reparative surgery with a mesh, to keep my internal organs inside my body.  From what I've been told, if such a mesh were placed inside my trunk, I would no longer be able to bend at the waist, which would leave me permanently bedbound.

The nerve damage created by my surgeon's actions not only has left me paralyzed on the left half of my trunk but has, also, left me with chronic, severe left flank pain.  Thus, I've had to be on Fentanyl (Duragesic) pain patches (the same high level narcotic pain patches that those with severe cancer pain are often forced to wear), ever since my kidney removal.  In addition, I require both Vicodin and Valium, intermittently, to handle the extra pain and/or muscle spasms that result when I am overly active or push my trunk beyond it's limits, in terms of twisting, bending, lifting, sitting upright, standing). 

I will require those medications for the duration of my life, as there is no way to "fix" a "flank bulge" (except, possibly through multiple highly experimental surgical repair procedures which I refuse to ever undergo - surgeons don't get to "practice" with MY body anymore, since they're not the ones who have to live with the consequences of their "play").  [See article here for experimental surgery details:  http://journals.lww.com/plasreconsurg/Fulltext/2013/07000/Flank_Bulge_following_Retroperitoneal_Incisions__.63.aspx ].  They just get to walk away with an insane amount of money, profiting richly off the misery that was created by one or more of their own colleagues, all regardless of the outcomes to the patient involved.  To me, it's the ultimate scam game and I'm not willing to be a patsy "player" in it!

Since my urologist engaged in at least 20 different substandard actions, during his catastrophic surgery with me, I filed a malpractice lawsuit against him.  That was one of the most stressful and horrific experiences of my life - nearly as bad as the eight days I spent in the hospital, over what was supposed to have been a "Day Surgery" procedure.  What I learned in a big time hurry is that the days of "ambulance-chasing" attorneys is long over.  I had to contact 40 different lawyers, before I finally found one.  Since there is a two year statute of limitations on all personal injury lawsuits in the state of Oregon, I barely found a lawyer in time.  We filed exactly two weeks before the statute of limitations would have run out.

As I have never been able to return to any of my three professions (RN, MSW, or MAT teacher), nor to any type of work at all, I had so much riding on that malpractice lawsuit.  I'm unable to sit upright for longer than 2 - 3 hours, nor to stand longer than 15 minutes, or walk more than 2 blocks, thanks to my "flank bulge". Without left core abdominal muscles to hold my body upright or assist my left leg with walking, I'm had two major falls on concrete (due to overexerting myself, causing my left leg to abruptly buckle in fatigue).  As a result of those two falls, I've had a concussion and sustained severe damage/tears to both shoulders and knees.  My orthopedist has informed me the injuries to my left shoulder area are so bad, they will never heal.  Thus, I'm now required to use a walker whenever I do much walking (essentially, nearly any time I leave my home which usually is only once a week or so, due to not being able to sit upright for very long).

Without left core abdominal muscles to hold my body upright, my trunk is asymmetrical, both in how it appears, as well as, how it functions - making me unstable, weak, and unable to engage in most of my hobbies and leisure activies, as well as, heavy housework, yardwork, and similar tasks.  I am continuing to live independently in my own home.  However, it's been a major challenge, both in terms of maintenance/repair issues and financial ones.

My long-term disability carrier abandoned me, after the first couple years of my disability.  Thus, I went for 10 months with no source of income, apart from Food Stamps and Medicaid.  My house was put into foreclosure and I had to go to every social service agency and church in the area, seeking help to keep my utilities on.  It took four years and a court visit (which only lasted a couple of minutes), to finally be approved for Social Security Disability.  Meanwhile, my malpractice lawsuit dragged on, as my attorney had problems locating out of state experts on this subject.  I learned quickly that all of the medical experts for my case would have to be located out of state, as no in state MDs would ever testify against another MD here, for fear of being blackballed by the profession.

Conveniently for my former urologist, he could get all of the medical experts he wanted from in state (all of his peers, friends, and professional colleagues were readily available for him to use).  In addition, as he was covered by a billionaire medical malpractice insurance company, he only had to make a single phone call to them to get the situation handled.  They hired the largest law firm in the state of Oregon - one which has 500 attorneys working for it, while I had just one attorney on my side.  With both the MD and his malpractice insurance company having deep financial pockets, the entire situation was a "David vs Goliath" one from the beginning.  However, I was simply too naive about medico-legal matters to realize that.

After four years, the case was finally settled out of court - much against my will.  However, my attorney was unwilling to take it to court.  He knew what I didn't (at the time), that MDs will win in court 88% of the time, regardless of the validity of ANY case against them.  Jurors are so convinced that MDs are gods & cannot, nor will not EVER do anything wrong, nor will they EVER display poor judgment.  Thus, if an MD walks into court, s/he is GUARANTEED to WIN, 88% of the time.  With those statistics in place, few attorneys are ever willing to take an MD to court, especially in my state.  The settlement I received was a joke, especially when you consider that my attorney received almost 60% of it, leaving me with so little, it didn't even begin to touch all of my medical expenses, let alone the loss of my careers, loss of retirement (I was only 44 when my kidney surgery happened, so wasn't prepared at all to be "retired" from working), loss of hobbies, loss of relationships, pain/suffering, and destroyed quality of life.

So, here I am more than eight years after my kidney surgery finally finding someone else who has lived through something similar to my experience.  Though I'm grateful to say that I don't have cancer, my life has been destroyed nearly as intensely as any cancer diagnosis.  The worst part is that it was all completely UNNECESSARY and PREVENTABLE!  The Oregon Medical Board has never bothered to investigate what happened in my case, though they are aware of it.  In addition, the same urologist who maimed me killed a male patient, a couple of years ago, via a circumcision infection.  That MD is now 81 years old and still practicing!

Though there are laws, nationwide, requiring pilots, air traffic controllers, police officers, teachers, and other professionals to retire at a certain age, MDs are not EVER required to retire!  Thus, they are legally permitted to practice until they literally die on top of their patients!  The Oregon Medical Board hasn't investigated the death of the male who died from the circumcision infection anymore than they've investigated what happened to me.  They don't care if MDs harm "mere patients", as MDs are considered some of the most valuable people in this country - thus can "do no wrong".

MDs, as a group, are indifferent to patients who are harmed or killed as a result of their actions or the actions of one of their MD peers.  I know this as the result of reading and observing hundreds of medical articles and MD responses (to those articles), which deal with malpractice issues.  Across the board, MDs will inevitably state that all malpractice lawsuits are "frivolous", that MDs are the ones who get "hurt" by going through malpractice suits, and that patients and their trial attorneys are all greedy frauds who aren't seeking justice, merely seeking to enrich themselves. 

Those remarks are made by individuals who belong to one of the most arrogant professions on the planet - one that has very little genuine interest in the well-being of the patients they are providing services to.  Rarely is anything like altruism part of their profession, anymore.  They don't even make feeble attempts at it, these days.  Their profession is strictly all about greed and prestige, so they have no motivation to protect patients, nor to look out for their best interests.  The "ethics" have long since vanished from that branch of the health care professions, as I have learned the very hard way, for the past eight years (though I frequently witnessed it, less overtly, over the 25 years I worked as an RN, BSN and clinical MSW). 

I wish I had better news to tell you, especially as anyone with cancer, just as anyone with chronic, severe health care issues, inevitably becomes extremely dependent upon MDs for assessments, medications, medical supplies/equipment, and a wide range of treatment regimens.  Sadly, it's all a part of the 30 year decline of the US health care system, which started when the HMO's took over everything, leaving accountants and financiers to call the shots on clinical matters.  This has led to most Americans receiving third world quality health care services, though there are a handful of top notch medical centers left, if you're wealthy enough or happen to live close enough to access them (e.g., Mayo Clinic, Cleveland Clinic, John Hopkins, etc.).

For more information about the current status of the American health care status, feel free to read these recent articles:

Nurse numbers, education linked to patient death rate: http://www.reuters.com/article/2014/03/07/us-nurse-death-idUSBREA2613120140307

Survival post-surgery linked to hospital differences:  http://in.reuters.com/article/2014/03/13/us-survival-post-surgery-idINBREA2C26C20140313?feedType=RSS&feedName=health&utm_source=dlvr.it&utm_medium=twitter&dlvrit=309303

 

Differences in the Delivery of Health Education to Patients With Chronic Disease by Provider Type, 2005–2009:  http://www.cdc.gov/pcd/issues/2014/13_0175.htm

Nation's Grade Drops to a Dismal D+ for Failure to Support Emergency Patients:  http://newsroom.acep.org/2014-01-16-Nations-Grade-Drops-to-a-Dismal-D-for-Failure-to-Support-Emergency-Patients

If you need any further information about your "flank bulge", "abdominal flank bulge", or "abdominal bulge", there are many more journal articles addressing this topic, on the Internet.  Don't expect any MDs who are not urologists, neurosurgeons, or vascular surgeons to be able to comfortably or knowledgably discuss this topic with you, as it falls outside their areas of expertise.  Physical therapists and occupational therapists will be similarly unfamiliar with this topic, should you ever be referred to them for help.  I've attempted to wear multiple different styles of abdominal braces (available via the Internet) but have never found one yet that made much of a positive difference or enabled me to sit upright longer, in a comfortable manner (they're more like wearing a girdle, just hug the fat).

I wish I had better news for you.  Attending ongoing long-term psychotherapy and getting weekly massage therapy have been two incredibly helpful strategies, for me.  I wouldn't still be alive without the support of my therapist.  Having my lifestyle plunged into poverty has been a grueling and humiliating experience.  I've found volunteer work I can do, via the Internet, which has helped me feel like I'm still a vital, contributing member of society.  I haven't found any support groups which fit me for my quite rare and bizarre circumstances, which leaves me feeling isolated much of the time.  As you're a survivor of cancer, there should be lots of cancer support resources open and available to you, both in your community and online.

Best wishes to you as you learn to adapt to your new way of life.  If you're not familiar with the grief process, I'd recommend you read books about it written by Dr. Elizabeth Kubler Ross and others who've done massive research on the topic.  Additionally, there are many grief support resources available online.  This new chapter of your life will be different from your old one.  There will come a time where you'll find you can't recall how having a fully functional trunk/abdomen feels like and the young people in your life will forget what you were ever like when you were healthy (in your pre-surgical days). 

My young nieces and nephews hardly recall the years I played with them and took them on outings all over the place.  I haven't forgotten though.  I'm both grateful for those memories and grieve about the loss of my ability to ever recreate them, at the same time.  Be gentle with yourself, whatever you do.  Your new life is challenging enough without placing unreasonable expectations on yourself, while adjusting to a whole cascade of changes.  Shalom!

imsure32

I'm so sorry

I also had a radical nephrectomy. I had a partial back in 2006 and it was so small and I was so young (33 f) that there was only a 5% chance of recurrence so I stopped getting ct's after a couple yrs. Then last October I got symptoms and knew it was back so yeah... radical nephrectomy. .. anyway, now I have what is believed to be a hernia on my back where i had the surgery but I don't trust doctors anymore. .. not because of my recurrence, I have a long history of illness and "relationships" with them. Point being, how did you know the difference? Because I've had 12 surgeries and  I'm pretty sure my huge abdominal hernia is now completely opened up and my guts are everywhere they can go and very painful and it's hard to breathe this way and very scary yet no one seems to be worried but me! So, what was your husband's experience with this? Because now it's happening in my back, I'm gonna end up being a paper doll all is said and done! Being held together with plastic and staples? Sounds like an art project. .. hope your still on this site. ..  2014-08-04

cgkranda

Chronic pain and discomfort

I had a flank hernia repair six months ago. Prior to that I had my left kidney removed due to cancer. Since my hernia repair I have had continuous pain and discomfort. I also have bad scar tissue  and bulging. I read your article and was wondering how your husband is doing and if the pain has subsided. They told me since I have my kidney removed. The muscle wall has weekend and is unable to hold my got in is well. But after CAT scan I was diagnosed with flank hernia. I elected to have the surgery fearing bulge would get worse. I too was never warned that this was a side effect from the kidney removal.  I Would not have done anything different. I am just sad to think I would have to live with this chronic pain discomfort and bulging for the rest my life. As of yet I have not found any answers to help with the pain. If anyone has any suggestions I would be glad to hear what you have to say.