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To Remove or Not to Remove?
The more I scour this forum and read Dr Towfighs responses, the more I am convinced
she knows what she’s talking about and cares about people and unfortunately the more I realize I had my mesh removed for all the wrong reasons.Disclaimer: In no way shape or form am I giving medical advice here. I’m sharing my experience and my research in hopes people make the right decision for the right reasons when deciding on removal.
This is my story.
The decision to remove mesh was based on a level of discomfort too arbitrary to put a number on and partly due to the psychological effects of what having plastic implanted inside myself had on me. It’s easy to fall into the category of wanting your mesh out if you are having any sort of discomfort from it or reading all the negatives out there about the unknown certainty of what mesh does inside the body over a long of period time. The statistics can easily weigh on your decision and unfortunately it is also easy to google mesh problems and mesh removal to validate any of your concerns.
What may be a “good result” to the surgeon may not be considered a good result to the patient. I urge you to speak to removal patients before making your decision. I speak to 5 of them on a weekly basis and none of them consider it a “good result” including myself. Removing mesh successfully may not equate to a good result, I’m finding. I am embarrassed and feel ignorant for the mistake I have made by deciding on this extremely invasive procedure, a decision partly due to a confident surgeon who did not share with me the entire spectrum of risks or prepare me for the harsh reality of an open inguinal mesh removal with triple neurectomy on the right side.
Before mesh removal I could ride a bike, swim, jump and run. I did so with some level of discomfort, I did so knowing there was mesh in me, I did this for a year. I guess it bothered me enough to research mesh and with an internet of endless information I considered myself a candidate and apparently so did this surgeon.
I am 16 months out of my removal. I can no longer ride that bike, run, swim or do much of anything without extreme debilitating pain and the fear of losing my stomach. A pain I now know is far worse than before. I have come to the realization I’m going to be challenged for life.
The neurectomies have caused an endless amount of discomfort that ranges from
burning groin pain, extreme testicular and penis pain, radiating burning leg pain, extreme discomfort, stabbing, a numbness that feels like no blood or circulation is getting to the area properly which makes you feel like the area is stifled and suffocated with no feeling of temperature. You wish you can straddle a body pillow with comfort and feel that cold, cool feeling of the fabric between you but that’s gone, dead in a way. Your stomach is now distended like a malnourished child, full of twice the amount of scar tissue, scarring that feels worse than my lightweight prolene mesh was. I have lost the ability to flex the groin and the entire region. My penis and spermatic cords are barely attached to my body. The groin, penis stomach and testicles are lax and collapsed (over two inches) causing extreme pressure and pain on my spermatic cords, penis and prostate. An erection is possible but extremely painful, ejaculation is painful and often bloody. The only thing that was shared to me about nerve resection were these words “They are only sensory nerves, they will grow back.” A very lax consult that has left me partially disabled.
I’m finding from Dr Chen that there’s a lot more to neurectomies than that.
Could I have gotten this out less invasively?The repair – Without these nerves your stomach is atrophied and weak, it feels dangerous and uncertain, taking a simple step is painful now. Lifting the lightest weight is a challenge. The repair is so tight your anatomy is completely altered from its original state wreaking havoc on the surrounding areas, you are now living in an entirely different body. All the pressure of digestion is funneled narrowly to the base of your penis. My left side is now infested with pain with a lipoma ready to explode. Your stomach is narrowed your genitals are misplaced and testicles hang lower and longer. It’s uncomfortable and almost mutilating you feel trapped.
The repair is so weak that without nerves innervating the muscle, it is scary to walk, cough, even talk too loud. I can not feel my breath anymore, I literally feel like I’m being suffocated as my stomach doesn’t raise and relax properly. It’s hard to swallow. I haven’t felt right since removal. I’m debilitated and imprisoned. Feels like liquid is filling my perineum and testicles. My stomach is chronically tight, crooked, bloated and in pain. I can’t sit or stand even with out wanting to lay down. Basic pleasures are lost like sex, eating, going to the bathroom, coughing, sneezing, farting, singing….gone. I do not know how I can continue to go on like this, I was told removing the mesh would be beneficial, this is far from any benefit, this is torture.I traded getting plastic out of my body that was causing me some discomfort for far worse discomfort, missing and painful nerves and I think from the OP report what looks like a polypropylene suture that was used in the repair, so basically there’s still plastic in me. In fact I believe this has caused the beginning of a true hernia. I forgot to mention all this is for such a minimal hernia that barely existed. I don’t even know if I had a real one. I do feel like this removal is putting me at risk now.
Dr. Towfigh and Dr Chen I feel understand the invasive nature of removal and I can tell from reading some of these posts that they err on the side of caution when considering removal.
I wish I had spoke to them prior to this horrific and traumatic experience.Mesh removal has taken my sexuality, my personality, my body and life from me.
It is very easy to blame the first surgeon for implanting it in the first place, it’s the mesh’s fault so whatever happens during removal it will always retort back to the original procedure. It’s an easy cover up for anyone trying to create a business model out of the common problem of post surgical mesh pain.
For all the reasons above I regret my removal and can not fathom why a doctor would advertise taking mesh out of anyone just “because” the patient wants it removed knowing even just ONE of these risks. In the same way I wasn’t informed about mesh I also wasn’t informed about removal or neurectomies.Thank you for the wealth of information and I hope this sheds light on how serious this procedure is to those considering it. Consider letting a patient with your exact case, age,sex etc, share details of their mesh removal with you before you find yourself on a table for the wrong reasons because once you jump there’s no going back.
Just my thoughts.Happy New Year
Disclaimer: In no way shape or form am I giving medical advice here. I’m sharing my experience and my research in hopes people make the right decision for the right reasons when deciding on removal.
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24 Replies
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quote shelley:new to this site so not sure how to post yet but I am meeting with Dr. David Krpata in Cleveland clinic next Thursday. I have groin hernias mesh w/trapped nerves. Mayo clinic said no cant fix this. More I read I am scared to remove say I will be worse.Hi [USER=”2751″]shelley[/USER] , can you share more of your story and case? Age, sex, weight, surgery type, location, treatments, pain/symptoms, etc
If you’d like to start a new topic, you may get some more helpful responses as well.
Best of luck and keep us updated on your appointment with the doctor at Cleveland Clinic.
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new to this site so not sure how to post yet but I am meeting with Dr. David Krpata in Cleveland clinic next Thursday. I have groin hernias mesh w/trapped nerves. Mayo clinic said no cant fix this. More I read I am scared to remove say I will be worse.
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To Remove or Not to Remove?
That answer needs to be provided on an individual basis. Please seek consultation from one of the hernia specialists near you.
See Dr Orenstein’s comments here. http://herniatalk.com/hernia-discussion/1128-22-year-old-mesh,-severe-inguinal-pain,-severe-periumbilical-pain,-both-areas-where-mesh-is-implanted.html
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To Remove or Not to Remove?
Can Hernia mesh cause Peripheral neuropathy?? And if so. Can mesh removal cure it?? I was told this was the cure. After mesh removal will the scar tissue dissolve and free the nerves.I find this hard to believe.We are looking for the correct answers.
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To Remove or Not to Remove?
I tailor the mesh to each patient’s needs. Would need to examine you and also review what’s been done already.
In WA seek Dr Andrew Wright.
In OR, see Dr Sean Orenstein. -
To Remove or Not to Remove?
Thank you Dr Towfigh for your response.
What type of mesh would you use? Would this solve the prolapse or collapse of the region?
Everything collapsed but I don’t see a bulge, just heavy weight and burning pain on both sides now. Pushing down on top of base of penis and testicles. Spermatic cords get a little puffy at times.I wasn’t properly informed of these risks.
Is there someone you reccomend in the Pacific Northwest?
Portland/Seattle -
To Remove or Not to Remove?
Dear Anthony, AKA “Mesh,”
Removal of mesh can be a difficult procedure and has risks of its own, including damage to nearby nerves, spermatic cord/vas deferens, and weakening of the muscle. The rate at which these damages occur may be related to the operation(s) the patient has already had as well as the experience and technique of the surgeon.
The goal is to improve one’s symptoms, not to make it worse, so the decision to undergo mesh removal should be made on an individual basis.
If a mesh removal is performed AND no further mesh or other implant is placed, which in many instances is the best decision, there is a risk that the hernia will recur. In my practice, at that time, a less risky laparoscopic or robotic-assisted procedure is performed with some type of implant to secure the repair and restore the abdominal wall and pelvic floor.
By the way, I think “Chuck” was referring to the surgeons who contribute in Hernia Talk…
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To Remove or Not to Remove?
“Chuck”
To say “at the expense of their own time” ?
Patients usually are paying for that time.
I paid out of pocket and they also billed the insurance
company for “their time”.
My surgeon was compensated just fine for his time at the expense of many patients pocket books and quality of life.
In my case they got the better end of the deal.
I think judging if they really can help a patient should be considered part or the art vs just doing surgery to keep the doors open.
Who’s really a candidate for mesh removal?
What’s protocol for determining the patients need to remove mesh?
Is it worth the risk of making someone worse off? -
To Remove or Not to Remove?
Dr. Towfigh
I will give it another attempt thanks.
I have a hypothetical question.I feel after removal my stomach collapsed in my groin
pushing everything down. I also feel the beginnings
of a hernia on both sides.
I had open insertion and open removal on the right side.
How would I be able to repair this? How would you
address this problem and what type of mesh would you insert laparoscopically? Exactly how would you do it?
I’m scared to stand up as its hard to hold my stomach properly. Heavy sinking.
Please help.
Thank you,
Anthony -
To Remove or Not to Remove?
“Mesh Removal Patient”
I am drastically worse.
Feels like I have a prolapse.
Both spermatic cords burn.
Both legs burn down inner thigh
to my knees. I can’t walk comfortably anymore.
I feel disabled partially. Can’t have sex properly.
I’m depressed, I should have never trusted this.
Stomach is so off and tight Im suffocated sometimes.
Torture. -
To Remove or Not to Remove?
Dear chuckles The mesh removal made me much worse. The celebrex helped me a little.After the mesh was removed the pain was very bad.I had to walk on crutches. For a year and a half I was mostly in bed.The surgeon told me my femoral nerve was tweaked from surgery.I got zero benefit from removal.20 months latter I am back to where I was before the removal.I think we miss understood each other.The nsaids were the most effective in helping me over the 18 years I have been in pain.Before and after the mesh removal.
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To Remove or Not to Remove?
Hi “Chuckles”,
I think he states “little improvement with the pain” meaning little improvement of fixing the pain.This topic really is tailored around informing a patient to what a procedure entails vs selling surgery and also the discretion of advising removal to someone who is considering it. Basically ethics.
Because you may have some discomfort with mesh, being told by removing it it will solve all your problems with sometimes “instant relief” is hard to digest and not always the case. Not sitting down with a patient and discussing the details of a neurectomy and what it may do to your body is a big deal and should be explained in detail. I think some surgeons avoid that so they can get a sale. Like Dr Towfigh has mentioned many times it’s a drastic procedure especially done openly. -
To Remove or Not to Remove?
This comment/question is addressed to forum member Named “Mesh Removal Patient”.
In an earlier forum post called “Mesh removal after hernia repair” you recently stated the following….“Hello My question is. After mesh removal.That was in for 15 years.How long does it take for the inflammation response from the mesh to go away? I had pain very soon after the bikini mesh was installed.I had it removed 20 months ago.With little improvement in pain. (See previous forum post.)
Now in this post you state ” It made me many times worse off” Etc Etc. (see above)
Which is it, a little improvement or your many times worse off???
Makes one wonder about the accuracy of some of the information that some of the members provide.
Keep in mind these Surgeons are trying very hard to help us and usually at the expense of their own personal time.
Chuck
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To Remove or Not to Remove?
Dear “Mesh,”
I don’t believe I received and Contact from you.
Make sure you go to http://www.beverlyhillsherniacenter.com -
To Remove or Not to Remove?
Thank you for you response Dr Towfigh-
I filled out the contact information on your site. BTW it’s a very nice site.Sorry to be graphic but after going to the bathroom #2 it feels like my stomach bloats even more and I can’t breathe like I’m suffocating.
Everything feels dry also. Did my stomach shrink? Pulling down on my esophagus? Neurectomy?
I’m small 5’8 150 lbs. -
To Remove or Not to Remove?
I was sold on mesh removal! I was told all my pain was due to mesh.And zero chance of making me worse. It made me many times worse off.I also wish I never had it removed.The whole thing was a fiasco.For over a year I was flat on my back.Don’t get sucked into this.This should be the last possible thing to do.After all other options have run out.And then it is still risky.The doctors on this site know what they are talking about.Don’t let someone fill you with false hopes and dreams.People are desperate to be pain free.So it’s easy to get them to do mesh removal. Get the correct exams and testing.and opinions.Do not jump into mesh removal.
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To Remove or Not to Remove?
That depends on who you ask.
As part of my point is that there’s some
surgeons who solicit this procedure
out there who determine that any discomfort is soley from the mesh and are eagerly wanting to remove it at any cost to the patient. It’s apparent removal may only benefit the surgeon, not the patient. It’s a question of discretion and ethics. It’s easy to scare a patient and tell them they need to get their mesh out. It’s not a perfect world out there unfortunately. I know people who are being consulted by phone 1000 miles away being told their mesh needs to be removed without seeing any imaging or physically examining the patient. -
To Remove or Not to Remove?
Thank you for sharing your experience as that leads to a very important question of mesh removal. Should the decision making of mesh removal based on patient’s pain level or the fact of how well the mesh is in human body? If the mesh is balled up and we can detect it from MRI, but the patient’s pain level is not high enough, should the patient take the risk and remove the mesh?
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To Remove or Not to Remove?
I am sorry to hear of your condition as I am suffering from mesh removal surgery myself and I have posted on this forum several times. Are you able/willing to contact me by Email? jgens99218@comcast.net
Looking forward to hearing from you
JG
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To Remove or Not to Remove?
Please do.
via Contact Us form on http://www.beverlyhillsherniacenter.com
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