Removal of mesh after inguinal hernia repair.

Thank Roger for making a great point about post removal. After reading different case studies I’m actually worried about the outcome of removing mesh. I don’t know if I have nerve damage now but I sure don’t want   this unpredictable pain. I just want my life back, just 45 yrs old feeling much older. I make plans to go places with family /friends then I have to cancel because of being in pain. Surgeon put Two pieces of mesh in me which are both 10 by 15 and and my weight is 155-160. Contacted specialist at UCLA and waiting for appointment. I can’t wait because I’m not feeling better than before surgery. Happy Holidays to all. Get well.

Great rx! I'm actually scheduled to see a GI soon as my stomach and digesting has been very off since my lapro mesh removal.  I get servere heaviness in the lower abdomen and hear all sorts of gurgling sounds and I've been someone watching what I eat post surgery. Been feeling better the past few days. 

One of the potential problems is that a lot of doctors want you to get a colonoscopy but through my own research it seems this might not be a good idea since air is blown into the colon which puts some pressure in the area and might not be a good idea since the area has been weakened by mesh removal and surgery.

Hoping a CT scan I am getting soon can help to check out the intestines and if their are any recurrences.

Hey Anthony it seems the two experts I consulted regarding mesh removal both said that mesh for thin guys may not be the best idea.

There are some things you can do to help you rule out what may be going on. Nerve blocks can help diagnostically determine if it is a nerve issue and the there are steps that can be taken to help if it is a nerve issue. 

If the integrity of the mesh is compromised i.e. Folded or bent or migrated get a cat scan and send it to dr. Igor Belyanski. He saw on my cat scan that my mesh was bent and he will look at the scan free of charge. There is dr. Sherwin Towfigh who has expertise in reading these scans too but she might charge to do so. 

Be careful of anyone who suggests neurectomies of the groin nerves as these can cause more issues for some people. I only mention that Bc there is one mesh removal surgeon at UCLA and that seems to be his first goto when it should really be the last.

In addition to Towfigh and Belyanski there is dr. Bruce Ramshaw in TN. 

If you ever come to the decision that your mesh has to be removed remember it should be removed the same way it was put in (open VS lapro)

For people who have had there mesh in for a while the hernia defect often is healed even when the mesh is removed.  

Best of luck

Thanks Jonah for your very helpful info. I just seen Comp n Pension Doctor for the VA and to my surprise he admitted that I need to have Mesh removed. Anxious to feel better than I have for the past year but nervous  from hearing bad stories of removal. But its worth a shot.

Correcting the reply...

Anthony - good luck with the removal. May i recommed seeing a naturapath and potentially an accupunctirist prior to and post the removal. The aim would be to strengthen your immune system as much as possible prior to the surgery. I'm not an expert though high dose antioxidant flushes and also liquid zinc suppliments to assist in healing may be helpful. Also anything that oxygenates the blood and cellular structure can assist in recovery. Studies on the use of hyperbaric chambers that deliver pure oxygen have been shown to assist in surgical recovery.

Best of luck and keep us posted

Jonah - agree with colonoscopies. They are also an invasive procedure and should be treated as such with the risk / benefit carefully assessed. There are other methods that your gp may be able to look into first including blood tests and stool samples etc. If something is found it can usually be treated with antibiotics. A colonoscopy can then be undertaken if no other answers are forthcoming, an infection was found but antibiotics didn't work or there are significant impairment issues or blood in the stool.

Whilst unpleasent some people have had success with the use of enemas to clear the gut of nasties post procedures and help reset the immune system. This may be a less invasive first pass prior to undertaking a colonoscopy. Again should only be done if you're feeling strong enough post a procedure with adequate time to heal in between. As with my post to anthony below a focus on immune health should also be looked into. The immune system is a very effective way of dealing with issues when it is functioning properly. Post surgery of any kind it takes time and effort to rebuild it. A strong focus on diet is needed. This should always be a focus regardless of other treatments.

Thanks Roger for helpful info

Not a problem. Let us know how you get on. Do you have a date set for removal?

Hey Roger Thanks for the helpful tips. No I do not have a set date yet still pending. I’m going to get second opinion ... hopefully it happens very soon. 

I've been recommended neurectomy for post hernia pain. Pain is below mesh area. Mesh is difficult to remove and the resulting hernia defect then has to be addressed again.  Has anyone had neurectomy of inguinal nerves? Has anyone seen Dr. Ducic at Washington Nerve Institute?-VA

I would really think seriously about this. I have had three surgeries to deal with the migration of mesh to other organs. I have been living with the pain for 16 years now and seen some of the top specialists in the world. The last person was Dr Parviz Amid from UCLA

http://surgery.ucla.edu/hernia-our-expert-team

He told me that he could do the surgery, and would do it BUT there was a 50% chance that I would have more pain  than I had before. Surgery creates scar tissue, phantom pain is caused my nerve damage----So think about what happens when you remove the nerves. Our body has an amazing way to network with other nerves. They also have a memory!!!!! 

I have tried most things ~( Procedures ) and will post again fairly soon with my experiences 

and what I do to live with it.

Everybody is different, but in my experience of hearing of others having this procedure the outcomes have not been good. Healthy nerves are there for a reason. Adjust your diet, your movement patterns, do everything before going down this road

No still pending due to me getting another opinion. I’m really nervous to let them cut me open again to remove mesh but after hearing bad results from other removals has startled me. 16 Years in pain well this is my third n I’m not myself.

Hi Barry. Sorry to hear about your pain. Thought I’d chime in as I am someone who had his mesh removed this past summer.

I did tons of research and conversed with a lot of people who had their mesh removed before making my decision.

I think there is a lot of misinformation out there concerning mesh removal and Bc everyone’s situation is different it is really difficult to nearly sum up whether mesh removal will be a success or not.

To me mesh removal needs to be broken down into two categories 

1) the actual removal procedure and 2) how you will do post removal

1) mesh can be removed safely now if you find the right surgeon which means there is a good chance you will have to travel and most likely pay some out of pocket expenses. Unfortunately there are very few surgeons who can remove the mesh safely so many are told this can’t be don’e or you will lose a testicle or die etc. this is all misinformation. 

A surgeon experienced in this removal (I’d say 4-5 of them in the U.S.) can usually remove 90% ofbthe nesh if not all of it and if needed will avoid dangerous structures and leave a little bit of the mesh in in order not to risk any serious complications.  It should be noted that if you had your mesh put in laparoscopically and had it Implanted for some time their is a good chance the hernias have been filled in from scar tissue and there is no hernia defect once the mesh is removed. If it was put in openly there is more of a chance that once the mesh is explanted there will be a hernia defect that will either need to be repaired by mesh or a tissue repair. But bottom line is mesh can be removed safely in the right hands

2) that being said mesh being removed safely is just step one. Once it is removed there is really no way to tell how the recovery will be as everyone’s situation is different. For me the mesh could be quite debilitating for me and for periods of time I could not work it even be a dad to my kids. It felt like the was something stuck in me too. It turned out my mesh had balled up into a rock hard mass. It was attached to my bladder and had to be peeled off. It was attached to spermatic cord and other structures.  90% was removed. No nerves had to be cut and all nerves were preserved. 

Form all the people i conversed with I haven’t met one person who is worse off after mesh removal who had there mesh removed by one of the top surgeons. Some are markedly better, some have some symptoms better and some the same. It should also be noted that it can take a while to heal. I’ve spoken to people’s who told me at around the year mark they were 90-95% better then before mesh removal.

It is important to go in with realistic expectations and with the thought process that the odds are likely that you will never be a 100% 

I would 100% get my mesh removed if I had to do it again. It was balled up and god knows what else it would of done to me, what other organs it would of got it’s hands on.

I’m 5 months out of surgery and went back to work at the 7 week mark.  I work and spend time with my family. I walk around and move about fine. I’m not 100% and still have issues especially with sitting. But I immediately noticed the feeling of having a 10 pound brick in my stomach was gone 

I do believe all avenues should be explored and undertaken before mesh removal is considered. I can tell you the number of different medical doctors, medicines and pain management I went to which did not help. It was a 6 month exhausting ordeal that used up every ounce of limited energy I had. I finally sent a cat scan to a surgeon a couple of people who had there mesh removed by him and he saw on the cat scan the mesh was bent. As I mentioned when he got in there it was son much worse. 

He wanted and rx more mesh be out in after removing the defunct mesh but there is no way I was letting that happen. Fortunately there were nonhernias after removal. 

In my previous posts I’ve mentioned the names of 3 or 4 of the top surgeons whobremkve mesh.

It is important to have the mesh removed the way it was put in so make sure the surgeon has specialty in that type of operation.

Best wishes everyone.

I agree with you re mesh removal . I did had as much removed as possible. I nearly lost the use of my left leg as mesh was impinging on a nerve. After that removal I did get the use of my leg back. The pain has never gone away. The mesh is still attached to an artery and my bowl and  colon. It was a laproscopic procedure. Not a choice I would ever recommend to others----The open surgery approach is far easier to deal with if there are complications. I am certainly not an expert, but it is amazing how much you learn. I went to Dr Grischkan at the hernia centre of Ohio---http://herniasurgeries.com/

In my early days of searching for somebody to help he was the only person who would. One of many things you cannot rely on are radiooprapy or ultrasound for a diagnosis. Many radiologists just do not have the experience to read whats going on, many times the films just do not show the problem.

Hi, some very helpful info thank you. Can I ask where you are? I live in the UK and it seems surgeons that can properly remove mesh are hard to find. I'm desperate for someone to help my husband who has suffered chronic pain for about 10 years. I'm certain from all the research I've done that the mesh from a hernia repair is the cause but no scan will show anything and doctors just seem to brush the idea away whenever I mention what I've read and the research I've done.

Look up Mike Fox who is a peripheral nerve surgeon who works privately and at the RNOH in the NHS. As a nerve surgeon he is used to working on delicate structures and has removed hernia meshes and is aware of the problems they bring. 

Preserving nerves is ideal however if they have been damaged due to scar tissue or mesh running them and causing neuromas then they will continue to cause pain even after mesh removal. 

A nerve specialist can diagnose and treat neuromas with limited risk and in fact nerve removal is relatively common in nerve transfer procedures so nerve removal for neurectomy procedures does not automatically mean phantom pain. 

Has anyone tried any suppliments like msm to try and help ease nerve damage? If so any luck?

What is msm?

They told me I have scar Naroma, most likely. No one has really told me exactly what it is but I am in constant pain I had an umbilical hernia done without mesh open surgery. I’m in constant pain 24 seven and feel like I have nerve damage as my right side of the body really hurts. Always. They tried Cortizone shot and it didn’t work now they’re saying maybe Botox?

Hi Katrine - it's a natural sulfur based compound that is said to be effective for a bunch of stuff. Please note I'm not a doctor. I've been suffering chronic inflammation and suspected nerve pain post implant and have been looking to immune boosters to help with it. Personally I've found they can help manage but not expel my symptoms. I've included a link below for msm. It might be worth a shot taken in conjunction with what your doctor says. I've just started out on this so difficult to tell if it is useful for me yet. I'm hoping it provides relief but interested in any experiences with it. It's also apparently helpful with aiding post surgical healing as a fyi

http://www.msm-info.com

Hi Katrine, it's a natural sulfur based compound that is said to be effective for a bunch of stuff including helping with connective tissue so may be of assistance for nerves. If you search msm info there's a bunch of stuff on it. I'm not a doctor rather a patient, have been suffering ongoing inflamation and suspected nerve pain since having an implant op and I'm now focusing on immune health to try and help manage my symptoms. I've found some stuff to be effective in managing but not eliminating my pain. I'm personally considering removal as it's not improving and having a significant impact on the quality of my life. Just started taking msm so difficult to know if it's helped but keen to hear from others if they have any experience with this or other non med things that have been helpful.

What type of symptoms are you experiencing?

Hello, thank you for your reply. I had the umbilical hernia repair April 17 last year. In the beginning I’m assuming I healed normally because externally my bellybutton looks totally fine,  I did not have any infections that I could see. I was however always feeling extremely bloated and having a lot of pressure on my ribs so went back to my surgeon a few times and he did a CT scan and MRI, which showed nothing abnormal and no reoccurrence of hernia. Then a couple months went by after that I was still having the same pressure in my stomach and I went back to see him again and this time he said he didn’t believe it had anything to do with the surgery. So he referred me to a Gastro specialist. I went to see him  and in short he came to the conclusion that he believed I had scar Neuroma  or that perhaps my sutures were too tight, as surgeon did open surgery with no mesh surgeon said. 

 He then referred me to a pain management clinic, so I went and met someone there. He did not say too much except that Kenalog 40 injections and the nerve block to tell the more. So I have this done a couple months later, seems to be a few months of wait time in between each of these appointments that’s why this is taking so long, and the nerve block which was the anesthesia that lasted for 24 to 48 hours seem to work but I didn’t have too much pain those two days.  The Cortizone injection did not make any difference because the soonest honesty sure enough I was back in my same pain and there was no difference at all, and this was done on December 1 last year. I left a message with my pain clinic doctor informing them that the Cortizone did not really work and what did they suggest now. He never got back to me his secretary or nurse called me back and basically just asked me the same questions it didn’t work I said no she said the doctor would call me which he has not done, and I have called him again left messages with the nurse again I still haven’t  Heard from him at all. In my first meeting with the Gastro specialist he had mentioned that sometimes people who have good affects from anesthesia/nerve block, can have Botox injections and that this works pretty good. So I called the pain clinic again and asked if I should try the Botox injections, and yours call me back and said yes the doctor approved it and then I received an appointment for that. When the appointment time came when Schoenfield still not approved Botox injections as that is considered cosmetic not for pain management , So the nurse rescheduled me to make sure my insurance were going to pay it. Now this appointment is not before February 28. Like I said there’s a long wait times for each of these appointments, it is driving me crazy. In between I did go to a different medical foundation signed up with a GP, told her the story, now she has gotten me an appointment with their pain clinic for February 6. So I have two appointments I’m going to go to this new one to see if they have any better suggestions, Even though I still have the appointment with my original medical foundation.  I’m not sure what I should do about my surgeon honestly I don’t think I want to go back to him as each time I went there after surgery he dismissed me and said there is no way this could have anything to do with the surgery that that was not normal to have Gastro issues like this feeling bloated and the pressure under my ribs. All I know is that I never in my life had any pains like that’s not even my hernia was painful like this, I went and had the surgery came out in my life changed completely. I was used to running every day walking hiking. I can’t do any of that anymore I had to hire cleaners because just vacuum the floor is enough to knock me out where I have to lay down . It is really bad, and I really don’t know what to do, I guess I will see what this new pain clinic says. My only concern is doing all these injections to numb it is all fine and dandy, but I would like to get whatever this problem is fixed permanently. And my new general position informed me that once a doctor has had surgery on you, it is almost like a code between them that a new surgeon will not want to see you and touch you. So this is concerning because how will I get it fixed as I am a little afraid of going back to the regional surgeon has obviously I don’t trust him at all  anymore. No I am from Norway, moved here three years ago, so obviously still in the region citizen, and I’m debating if I should contact my doctor there since I am going on vacation to visit my mother this summer. So I guess I’m wondering if I should see if they can look at it and just fix me ...

I have to apologize for all the misspellings, I used Siri. It was such a long reply it was easier to use Siri- so hopefully it makes a little sense..

It does. Sounds horrible, I'm sorry you've had to go through all of that. Is all of the pressure coming from the inside or do you think it's because things were stitched together too tight?

I had a terrible gut reaction post my op that would seem completely unrelated but sometimes the body just reacts i guess. My sense is mine was a crazy reaction to a foreign body rather than physical trauma which is rare but can happen. I was on the can constantly for two months and lost over 10% of my body mass. Docs couldn't figure it out, saw a gastro, no infections diverticulitis, seemingly healthy etc. A heavy focus on diet helped settle my gut down though took time. Cutting out processed foods, booze, gluten and dairy for a while and focussing on clean raw eating was what helped me rebuild gut strength. Now my gut feels strong enough I've started taking msm to see if it helps with the pain/inflamation I've also got. Too early to say if it's helping so was seeing if anyone has had any experience as read some good anecdotal evidence on a bunch of stuff including scar tissue which is why i thought i'd mention it to see if it was something worth checking out.

On the pain and inflamation side I've also been seeing an accupuncturist which has really helped me, more than i was expecting.

I hope it all dies down for you. I'm personally very reluctant for surgery though for me it feels i will need this to remove a foreign body that my body just doesn't like. But still trying to make the symptoms more bareable so i can have a semi normal life until then

How long have you been in pain? So you are considering a new surgery? I’m sorry :-( 

It is ridiculous stuff- had I known I’d never had the surgery. I have never had surgery before, so I guess I didn’t do my research. Not sure I ever would go under the knife again- unless they said I would die without.

I have a terrible gut feeling too- that something now is really wrong. It feels like knives, glass inside me. Makes my spine and head hurt too. So bad sometimes i start thinking, what do I do if I pass out and can’t communicate with a dr. I carry all my surgery, CT scans and MRI papers in my purse incase. Then I start worrying about my daughter, what if I die etc.. it’s an aweful feeling, feeling like something is so wrong it’s just a matter of time:-(

Today I received a letter from insurance saying they will not cover botox injections for pain mngmnt. So, back to square one.

Not sure what to do now. 

Thats sounds truly horrible. If you can stand it maybe try some deep tissue massages? Sounds like no foreign bodies in there so potentially a matter of encouraging the scar to reduce and skin to loosen? Obviously keep going with your doctors but accupuncture has really helped me. I haven't tried though i know people who have had success with kinesiology also. All of this is non invasive and can be done in conjunction with your doctors approach. Sometimes insurance does cover these practices too. Maybe also give organic msm a go. It can't hurt.

I think mine is a reaction to the foreign bodies implanted. I've had it constantly for 5 months so not forever but it's driving me mad and comes with a whole array of weird and not so wonderful symtoms. At this point I'm personally willing to have a surgery to rid myself of it. Even though the thought of surgery terrifies me, the thought of having my body like this forever is worse. Like you, i went in too lightly and regret it horribly.

Was your approach open or laparoscopic?

Thanks Roger .. yes same here I’m lookin towards Mesh Removal, foreign object not getting along with my body at all. Been a year since Bilateral Inguinal Hernia Surgery and I’ve lost so much wait  I feel like a feather dodging the wind. So surgeon ordered Pain Managdment hopefully it helps. I still have to eat like Bugs Bunny or else I suffer real bad. I’m going to give acupuncture a try as well. Wish you well as I will update if anything gets better.

Anthony - I'm sorry to hear that. I feel the same. Was as strong as an ox before all of this. Now just can't stop going to the can and have dropped 7kgs, a lot of weakness in my arms and legs but particularly my left arm and very low energy. Went to a naturapath they think I've formed a gluten intolerance. I used to eat bread by the loaf!

Did you have any luck with a second opinion / getting a date set for removal?

Mine was open surgery. You barely see a scar- but internally it is bad.

Let me know if you schedule surgery. I am really sorry for your pain. I feel for you, we all are suffering from the mse procedures it seems...

Hi Roger,

Good point, my wife going through this right now as she removed mesh about 2 years ago n now having alot of gas probably n bowel movement which it's to the very discomfort point. We r looking into seeing a GI Dr to help but it's so difficult to find local Dr that understand how to deal with mesh complications n it relation to these symptoms n can't afford to go to NYC to find a real surgeon.

Sh has been self medicating using magnesium and stool softener to help but u can't live off that ur whole life.

Hi have you ruled out that maybe your wife’s hernia has returned since it was repaired using her tissue? Sometimes there isn’t a clear bulge. Maybe the GI symptoms are related to a re-occurence.

I saw dr. Jacobs for mesh pain and his best educated guess after looking at my MRI was that the mesh had shifted or something like that.  He was very thorough and spent allot of time trying to figure out what was going on with me.

I sent another test to dr. Igor Belyanski in Maryland who has expertise with mesh explantatiin and he definitively saw that my mesh was bent and folded. I had mesh removal with him this past August and he said it was much worse when he got in there that the mesh had folded up into a hard ball. He got 90% and has to leave a little bit of mesh on some structures  tondangerous to try and get all of it out. 

For 6 months post surgery my stomach was off and I switched to a high fiber diet and took some stool softeners so I didn’t have to strain. I’m finally getting my appetite back. I’m not 100% but am much better post removal as I can work and function as a father and as a husband. Sitting still can be uncomfortable on certain chairs and the area still feels off/not completely right.  Hoping time continues to heal. I had my mesh out in laparoscopically and removed the same way. There were no hernias when the mesh was removed and were filled in with scar tissue since the mesh was put in 6 years ago.

But dr. Belyanski is a great surgeon I had almost zero pain in the groin when the mesh was removed (I had inguinal mesh removed) but my stomach was very bloated and uncomfortable for a while. Went back to work 6 weeks post removal.

My out of network insurance benefits covere everything for the surgery and even if it didn’t dr. Belyanski is very affordable. The bill for the removal that I submitted to my insurance was around $1100. 

He charges the same amount for a hernia repair where as dr. Jacobs quoted me $12,500 for a hernia repair.

Hi Jonah,

Just a thought, was your mesh originally fixed in place using dissolvable sutures?

I have had an abdominal incisional hernia repaired using mesh. In discussions with my consultant surgeon he said he would use helical titanium tacks to fix the mesh in place since dissolvable sutures are gone after a short time, I think he said within 3 – 6 months but I could be wrong there. The point being that once the dissolvable sutures have dissolved, what is there left to keep the mesh in place if it hasn’t been fully incorporated into the fascia yet? I wondered if that was the case with you, maybe that’s why the mesh was free to “walk about” and get screwed up into a ball.

As I say, just a thought.

Regards,

Phil.

Yeah this type of mesh that was used on me is a type that doesn’t have to be fixated if it is placed laparoscopically. I believe the surgeon used a glue to hold it in place.  Total nightmare-the mesh had fixated itself to my bladder, spermatic cord, illiac vein and artery and other structures. And it was a 3 1/2 hour surgery to get most of it out.  Like I said not 100% and preparing myself that I may never be 100% but I’m working and functioning-no issues walking. Most problems revolve around sitting.

That sounds horrific. I'm sorry to hear about all of that Jonah. Were they able to remove it without taking out any veins / organs?

Yes. He got 90% out. No nerves had to be cut and  no other strucutures had to be compromised.  

Glad to hear it! Sounds like he did an awesome job.

Yeah he is highly skilled and since my surgery has removed 5 others mesh and gotten 100% out. Unfortunately having the mesh safely and successfully removed is only half the equation and how one does post removal is really anyone’s guess and is patient specific and based on many factors. 

I long for the day to be 100% but nontjat May never happen. But am grateful to being well enough to work and care for my children and my family. 

There is probably some nerve damage that still lingers, weird that I only feel it when I sit since I’ve heard from many that the nerve pain kills them when they walk and I’m every other position. 

Thanks for the well wishes roger

hi anthony would you mind sharing the name of your specialist?...thx audrey