Removal of mesh after inguinal hernia repair.

Hi,

Thank you for your message. I am sooo sorry for your pain- it is so sad this happens. I agree with you- I NEVER would have had the operation had I known. I am so mad at myself for not researching the affects on people before I went under the knife. My herbia pain was nothing compared to what I have now after surgery. Like you, I have nerve damage that makes me very careful on doing things. 

I don’t know if it will ever go away, but I don’t believe so. There hasn’t been any improvement in the 6 months.

I am sorry you are going through this! I completely understand how you feel.

Hi again! I had the Kenalog-40 injections into where they belive I have scar neuroma. They said I should feel a significabt reduction of pain in 7-10 days.

Unfortunately I am on day 15- no relief.

So it probably did not work- my belly button hurts a lot because of the injections but this I hope will go away.

So- when they injected the steroids- they also injected anasthesia. That lastef a little over 24 hrd and then I did not feel much pain. 

Now they said I can have Botix injections on january 12, to see if that helps since the steroids didn’t.

I am a little worried.. the pain dr never called med to discuss, only his assistant or receptionist.. feel like I am just doing things to see if it can help. This is Stanford healthcatr, and I would never recommend them to anyone after this whole ordeal. I am on month 8, of pain  all day every day with no suggestions for resolution.

My hernia was TINY and was nothing as painful as now. Have not worked this whole time and i can never exercise. Walking short walk works- that’s it. And I used to run and hike every single day before this surgery. I am sad.

Anyway, I have no idea what to do. Try the botox I suppose.

I see a lot of people recommendibg the Dr in Beverly hills.. Towghi?

I am wondering if she could fix the scar tissue...

Apologize for all the spelling mistakes! I miss the old phones with keyboard/ buttons :-)

Hi I had my inguinal hernia mesh removed this past August. I chose a surgeon on the east cost after a much exhausted search. His name is dr. Igor Belyanski in MD.

However there are two other surgeons in CA who are excellent and remove hernia mesh:

Dr. Shirwin Towfigh and dr. William brown. There is a david Chen too at UCLA but I have heard mixed reviews about him.

Dr. Towfigh runs a hernia forum online called herniatalk.com where you can ask questions and read other people's experiences etc.

One word of caution: you are going to want to have the mesh removed the same way it was put in for example if you had mesh implanted laparoscopically them that's the way it should come out. This is very important Bc certain surgeons specialize in lapro others open.

If it was put in open then dr. Brown is your man especially if you don't want mesh to be put in again as he specializes in repairing hernias the old fashion way no mesh.

Dr. Keven Peterson in Las Vegas also specializes in this.

Dr. Towfigh specializes in laparoscopic surgery.

Finally my surgeon -dr. Belyanski specializes in reading cat scans. He saw what two other local surgeons missed-that my mesh had folded up so it may be worth getting a cat scan and sending it to him to see if sees anything wrong with the mesh on the scans.  Best wishes

Dr Towfigh is top notch hernia surgeon in Beverly Hills.

Forgot to mention. Dr Towfigh can apply any known techniques to address the issue: open and lap with mesh and without. She knows how to do suture/no mesh repair even laparoscopically using robot, which is extremely rare.

Hey Jonah. I also had my mesh removed by Igor Belyanski on October 25, 2016. I feel alot of tightness and what not in that area. Hopefully just scar tissue and not another hernia. Do have a recent MRI to get the results from. How are you feeling?

Hey. Hope you are recovering each day and resting.  Was your mesh removed openly or lapro?

And did you have any hernias when removing the mesh? And if so did he put more mesh in  or fix it with a tissue repair.

For me it turned out that my mesh had folded into a ball that was rock hard. It was in me for 6 years and becam debilitating this past Feb. I had the mesh put in lapro and removed lapro. He was able to get 90% out and some was left on the illiac vein and artery.

The crazy thing for me is I had very little post op pain in the groin and didn't take any pain pills. However my stomach and digestive system was bloated and upset for a long time and I still off. Sitting before mesh removal was very hard for me and although better is still the issue that gives me the most trouble. It bothers me me more laterally.

Also where he made one of the lowest incisions just above the waistband that area is bothersome-feels very funky, kinda tight, kinda sore and sometimes ok and sometimes not and not always in the same area. I'm 4 months out and went back to work at the 7 week mark. I can walk and move around fine but sitting is still bothersome.

Like you I'm going to have instead a CT soon (that's what Igor rx) and see if anything shows up. 

Would love to keep in touch since we had the same surgeon. Let me know if you are interested in sharing contact info

Hi jonah30439,

First, I wanted to thank you for the dr. recommendations! My husband had an emergency hernia repair Nov. 2015 with mesh. I had no time to research mesh and the Dr. said he did 1000s of these surgeries with no problems- and he used the "best mesh out there". Robotic laproscopic. The surgery went well, but about 6 weeks after his surgery he started to have pain. His hernia surgeon couldnt figure out what was wrong, he had never seen this issue before. Pain management drugs and multiple nerve blocks didnt touch the pain. MRIs didnt show anything. I had been researching and found Dr. Chen from UCLA. Our first hope after months of none. He couldn't figure out why the nerve blocks we not working and after a few visits said he would go in surgergically and check it out (remove mesh if necessary). Nov. 2016 was my husbands second surgery. Dr. found the mesh had clamshelded and attached to his bladder. His hernia had been exposed the whole time. He removed mesh laproscopically and did an open repair unfortunately with a new piece of mesh. He said his hernia was too big (2 cm) for a manual repair. I was very upset as I didnt want more mesh in my husband but trusted Chen because he is one of a few people that could remove mesh.

My husband continued to be in pain (more) and additional nerve blocks and pain meds didnt help. No nerves were cut because they were preserved well from the first surgery.

Long story... but based on your recommendation, we went in for a consult with Dr. Brown a few weeks ago, and 10 days later were in surgery to remove mesh, neurectomy, and manual repair. His iliohypogastric nerve was attached to the mesh and he had a lot of scaring on his spermatic cord. Mesh is out, manual repair amd nerves are out too. We are in day one of post op...so only time will tell but he is in a much better place than after the last surgery. Dr. Brown is AMAZING and even if my husband's pain comes back... we really feel we made the right choice to go with him instead of Chen again. Don't get me wrong- Chen is a great Dr. but we wanted a manual repair and Dr. Brown is an expert at that.

Again... thank you for all your responses in this feed... it changed our life!!

Hey John just saw that you sent me a reply but it looks like the moderator deleted it. Anyways just wanted to check in and see how you are doing post removal. I’m about 6 months out. Some issues are resolved some issues are still there but not so bad. Trying to figure out how I can private message you.  Would love to stay in touch

First of all so sorry your husband has had to go what very few people understand is a total nightmare.  I’m really happy that there is hope that going forward your husband will heal and thank god that mesh is out!!!

Since it was open removal and pure tissue repair my guess is it will take a good amount of time to heal but am hoping that it will just be healing from what is in essence a double procedure wrapped into one.

Take your time and do as much research into when and what time is a good time maybe to start some sort of light PT (maybe start 6 months post op)

I’ve heard cranio sacral therapy and myofascial release may be helpful Bc they are more gentle forms of fascia manipulation.

I do believe from all my research that dr. Brown is one of the few top surgeons when it comes to hernia repair without mesh so you are in good hands there.

Scar tissue will most Mikey be the biggest challenge.

I was most likely going to use dr. Brown but then I learned that the mesh is best removed the way it was put in so I went with dr. Belyanski since he specializes 

In robotic Lap removal.

I’m also happy none of your husbands nerves had to be cut and were preserved. I’ve heard Chen has a tendency to do neurectomies with mesh removal even if nerves are ok-so that is a big plus for you.

Did your husband have bard 3D maxx hernia mesh? That’s what I had and folded into a ball. Spoke to three other guys who also had 3D maxx and it also clam shelled inside of them.

I’m back to work (went back at 6 weeks) and am functioning well but not 100% like I was before mesh.

Wishing your husband the best-feel free to reach out anytime !

Thanks so much! So glad I found this site and your advice!! And SOO happy his mesh is out too!! My husband takes some comfort in knowing he was not crazy this whole time and there are people like you sharing advice and stories.

Thanks for the scar tissue advice - i read that was a big part of pain. Hopefully we can work on that this time. No one could touch him prior to his third surgery since his skin was super super painful to even touch. Unfortunately with his third surgery Dr. Brown did have to do a triple neurectomy. His iliohypogastric nerve was embedded in the mesh. Issues with the other two as well. Bummer is that I wish I had found Dr. Brown before Carter's 2nd surgery -he may have had a chance to keep his nerves at that point. Too late now. Dr. Chen just wanted to do a neurectomy this time- and said he would take the mesh out if we wanted it, but he said the mesh was in place and doing its job. I feel like we had to talk him into it. The mesh was getting ridged. And Dr. Brown is definately the man for open hernia repair!!

The first mesh that started all this was the Bard 3D max mesh- and did fold in half and adhered to his bladder. I guess we are "lucky" it didn't attach to anything else although the aftermath of that is still present in regards to pain. Our original surgeon said it was the best mesh because it was the shape of his body, but he stitched it in like 4 places just in case. What a nightmare this has been since the start. We are hopefully on the road to recovery and I will definately hit you up for some advice on the healing process!! Thanks again and glad you also have relief and getting back to a better "normal"!!

I’d report this to the FDA-this is like the 10th person I’ve come into contact with who had the Bard 3D MAXX fold over. It’s really  unacceptable and should be taken off the market.

Dr. Brown really specializes in open procedures and wanted to remove my Lapro mesh openly which I heard and felt was way to invasive. So he probably wouldn’t of been the best to get your husbands first mesh out which was placed laparoscopically-only other surgeonout in CA would if been dr. Towfigh.

But that’s all in the past now. Yes just focus on healing. He may have some numbness in some areas due to the neurectomies-that’s what I’ve heard from some people who have had the neurectomies. 

There is also something called cold laser therapy and ultrasound therapy which is supposed to be good for breaking up scar tissue but I’d ask dr. Brown when it is appropriate to start any kind of therapy as you want to make sure ther hernia repair has healed.

Make sure your husband eats a higher fiber diet (avocados, and smoothies are great) and to take a stool softener (collace) for s while. He doesn’t want to have to have any struggles with constipatikn and bowel movements as the area is healing.

Best wishes

Thanks I will definately ask Dr. Brown about those theropies! I know we have a while before Carter can start anything though which you mentioned as well.

I thought I read that 3D was a voluntary recall in like 2009 or something like that... in any case all polypropylene meshes are hard on your body... it is just a matter of time.

We did switch to a plant based diet back in Oct. to see if that would help him too and it really has in terms of releaving some pressure in his guts (he had IBS before all this). High fiber and stool softener is definately in his daily routine right now! Really helping to stay ahead of constipation. Lol!

Thanks again!!

This stuff makes me so angry. Definitely report it. There needs to more awareness of all of these issues. Also try msm as a suppliment and massages when you can cope with it. Msm helps break up scar tissue and helps with nerve health but needs to be taken for a long period. It also tastes awful so best to have with lemon water (i also add pineapple) not just plain water.

Thanks roger I think you might have mentioned it previously but was does msm stand for 

Thanks Roger! I will check that out.

It stands for methylsulfonylmethane. Essentially it's a sulfur compound with a bunch of beneficial properties, healing adhesions and scar tissue is one of them. Make sure you get organic msm. It's widely available and cheap. You don't want the other stuff. There is lots of info available online via a google search of "msm info".

It tastes horrible (really horrible) but gets better with time and has helped me with managing chronic inflamation. I hope it can help you guys.

Please insist that you do not have time to wait until he’s ready to do some testing. Because my doctor waited so long, I’ve had between 11 and 15 surgeries. If he’s not moving forward to help you with and find somebody who will!!

Hi Roger, 

It has been a little over 3 months of healing since Carter's mesh removal (3 surgery, manual repair this time). He says he pretty much feels the same as before the surgery still, however at least his skin is not sensitive anymore (they removed all three nerves, iliohypogastric nerve adhered to mesh). He has been on MSM for about a month now - he takes the capsules though- 2,000 mg 2x day. I dont think he can handle the powder form.  I did a lot of research on MSM and it is all over the place with info. We did go with the a USA brand that is pure form. How is the MSM working for you so far?  Carter really hasn't noticed a difference and he started getting really really tired recently.  Potential side effect of taking that.  He was already taking calcium and magnesium supplements as well and vit. D and C. (those are supposed to help with MSM absorption. 

My primary question though is did i remember you saying that your mesh adhered to your bladder?  If so, where are you at with that?  Carter's mesh adhered to his bladder, and they removed the mesh from it, but he has had issues since that don't seem to be going away - actually it is getting worse. Every time his bladder fills up even a little, his hernia spot lights up with pain. No one can explain it. He just had his bladder stretched to see if he had intersticial cysitiis from the mesh adhering to it- they didn't see anything wrong inside, but his bladder wall is thickened slightly and his prostate is slightly swollen, and they said his bladder work harder.  This was not an issue prior to his hernia.   Just wondering how your dealing with that if I remembered it correctly.  I am trying to talk him into going in to an acupuncturist - found a person that had worked on a guy with mesh issue before.  Any advice on that too would be great.  Thanks!! Steph

Steph, I also had mesh adhered to bladder causing infection but luckily settled after mesh removal although bowel can still aggravate area. Another supplement which may be of use with inflammation and scar tissue amongst other potential benefits is Serrapeptase, again you will find it all over the internet. I’ve not been on it long and I’m only 3 weeks out of another surgery, but did think I was starting to feel some benefit prior to this surgery. A friend I passed on to says it helps her shoulder! It apparently has no side effects and I’ve not witnessed any. Good luck !

Thanks for the info!  Carter had his mesh removed from his bladder 11/2016 - pretty frustrating to still have issues with so much pain. I will check out the Serrapeptase for sure! Something has to work!

Hi Shar 

What was you last surgery for ? Did Aali do this too 

Hi Adam, yes it was Aali and it was to repair a severed inguinal ligament , he also found 3 further tacks. I am just over 6 weeks from surgery but having problems as it appears not to have been repaired as agreed and unfortunately some “mesh symptoms” returning. If you want any further info I can private message you. How are you doing? Sharon

Hi. I read your post to Jonah. I may be in a similar predicament. I'm one year post mesh removal, left inguinal side. 30% was lefton the spermatocord, other 70% removed. Recovery was hard as I had a lot of muscle soreness from the desarda mention used and the mesh used 1st time. Then suddenly stated having definite nerve pain this week. Got a second opinion and they are confident its a nerve entrapment. Other possibility is that the remaining mesh is irritating a nerve. Second doc believes surgery is the best way to treat condition. My pcp thinks it's the mesh. Now awaiting a consult with new surgeon. Concern (1) that they are skilled in nerve entrapment release from scar tissue (2) and or can remove mesh from the spermatocord without losing the testicle (3) and close up the inguinal area without mesh. I know it's a big order but anything less is asking for trouble. Question...are there surgeons in NM who can help? We're out of money from the last two surgeries, and have nothing left.

Alternative steps in nerve treatment may be the way to go. What had worked best for you? Thanks.

Hi Douglas - sorry to hear you are going through so much with this. Carter's situation has been life changing for both of us. We were "lucky" they got 100% of the mesh out both times for the 2 differnet mesh's they removed, but it seems the damage is done. I am sorry, but I don't know of any surgeons in NM - we are in CA. 

After extensive research, Dr. Chen of UCLA in CA was the one that took out his first mesh (3D- (removed from attachment to his bladder as well) in 2016, but he put another piece in in a manual repair (first one was laparoscopic).  Chen does do neurectomies, but we didn't go that route since none of the nerve blocks worked for Carter. In Feb. 2018, Dr. Brown in Fremont, CA removed the 2nd mesh Dr. Chen put in that had entrapped his iliohypogastric nerve. Dr. Brown is an expert in non-mesh repair.  He did remove scar tissue from Carter's spermatic cord, and around the area as well as doing a full neurectomy for all 3 main nerves. But Carter is still having nerve issues, and his spermatic cord is often very sore, and whenever his bladder has any liquid in it, his hernia area hurts bad even though the mesh has been removed for over 2 years.  There is nothing wrong with his bladder according to the urologist. It is a mess that doesn't seem to end.

For nerve entrapment, normally they would want to do a nerve block on the nerve they think is entrapped to make sure that there is relief if they were to cut it.  Like I mentioned, none of the multiple blocks worked for Carter, no nerve blocking drugs worked, and removing the nerves didn't seem to really change much either (about 25% relief). Carter does have relief from him iliohypogastric nerve removal, but that is just related to the skin sensation. The rest is still painful deep inside even though the ilioinguinal and genitofemoral nerves were completely removed.   Dr. Chen has an article about specific techniques for cutting nerve that seemed to have a higher chance of relief...."Operative Management of Refractory Neuropathic Inguinodynia by a Laparoscopic Retroperitoneal Approach". Dr. David Chen et.al.   Dr. Chen's article said "All patients require multidisciplinary treatment with a mandatory evaluation by a pain specialist. Pharmacologic intervention including anti-inflammatories, topical anesthetics, neuropathic medications, and opioid analgesics should be assessed. All patients should undergo diagnostic and therapeutic nerve block of the IIN, IHN, and GFN as appropriate."  Have you tried any of these things yet?  That may be the next step for you like you mentioned- some people do have relief from it, but if you have a neuroma, that is a different ball game.  

Carter has been on natural supplements (MSM, turmeric,etc) -all the pharmaceutical drugs he was on (lyrica, gabapentin, etc) really messed with his head or his guts, and his physical abilities. And they didn't do anything for him. In Oct 2017, we went plant based diet to help, he tries to eats foods that are low anti-inflammatory and is about to try acupuncture.  He is 6 months post op, so pretty soon he should be trying PT to work out the scar tissue. He is only taking Tylenol and sometimes ibuprofen. They don't help that much though. He is in pain all the time, and it wakes him up several times at night still. 

Hope this info is helpful... Best of luck with finding out what is going on... don't give up and make sure you are confident in the dr. you choose.... 

Thanks for the info!  I am grateful for you input.  I have not had any neurological diagnostic test or shots--the ilioinguinal nerve entrapment is the closest DX to what is actually happening inside me. Plus I have 30% mesh on the spermatocord, who knows what is happening there. Lots to consider.

I will say that I will be thinking of you both and more than that..praying for you both as these are no-laughing matters and it is terrible for anyone to endure. There is a bright spot--(can you imagine)--there is a surgeon in NM who does no-mesh repairs--as far as i think he is still in NM--he is 4hrs away from ABQ--Artesia, NM. If surgery is decided upon, he is our guy to see, if the docs here in ABQ, NM, insist on patching me up again with mesh! NO MESH any time!   I'll keep you informed.

Finally, I too have been taking turmeric and supplements to decrease inflammation, and improve healing. Share what you can. I know others have tried stuff that works.

 

I had mesh / tack removal and nerve neurectomy laparoscopically 17 months ago (3.5 hours), then three months ago had further open surgery to repair severed inguinal ligament / posterior wall weakness caused by the same procedure as the mesh placement plus further nerve neurectomy and a port hernia repair.  No mesh has been replaced but I now have permanent sutures supporting my groin. Ive been advised I have a lot of scar tissue plus I have a damaged lateral femoral cutaneous nerve. It’s been a long journey ( 11 surgeries) and still some way to go but my thoughts on my progress which may be of some help to someone Is that  I’ve found that a myfacial release physiotherapist, lots of painful stretching, spiky ball to release muscle knots caused by being out of line for so long, plus turmeric as does Douglas, all help. I also take Ashwaganda , another natural anti inflammatory and also Serrapeptase , in high dose, which is supposed to help reduce scar tissue. I still have some journey to go yet but after over 3 years I’m finally regaining mobility and although not pain free I’m starting to feel human again and hoping to continue improvement. Stretching  can be extremely painful, but scar tissue can be slowly stretched and manipulated, it helps release the nerves, if you can face the initial stretch, I’ve now found if I don’t keep stretching daily I will lock down and then pain radiates to every bone and tissue on that side. I also feel that the combination of supplements / physio/ stretching has certainly helped in addition to  surgery.( My mesh removal  surgeon has been my saviour) I can also  totally relate to medication messing with the head, in my case Pregabalin, which didn’t help with the pain anyway and I believe now has a link to dementia,  I am grateful I am starting to reduce pain meds. There are so many similarities in all our stories worldwide and all linked to one common denominator...MESH....when will they stop destroying lives and ban it completely. My very best wishes to you all in finding some relief 

Thank you for the reply! My PCP (I believe born and raised in the Middle East)  was one of the few doctors I've had who credits my pain to the mesh (what is left remaining inside). NO one else at the start last year wanted to deal with it--I have all new doctors this year. His opinion is to get the rest of the mesh out, although he is not aware of anyone in our medical plan/group who does this. He hates to see me in pain. We are praying that the one surgeon in our state who does non-mesh repairs, can work with me/us, to get the last mesh out and close me up with a non-mesh repair. We're hoping this can be sooner this month than several weeks from now.

It’s great you have a practitioner who is so supportive of full mesh removal and I sincerely hope you can find a suitable surgeon. Apologies I didn’t mention that do have a remaining strip attached to a main artery, but thankfully it doesn’t cause a major issue at the moment, my pain is elsewhere and i am extremely grateful to my surgeon for not replacing with any mesh in the latest reconstruction ( although I do know he also uses mesh), I seem to react to it ( lymph nodes ) and although nothing showed on any scan, when he got in there it was attached to body parts it shouldn’t have been and he said “it needed to come out” . I know I’m one of the lucky ones to have had this removed as I know others can’t and continue to suffer dreadfully. Surgeons can be so dismissive when the outcome is bad and it so helps to find someone supportive and understanding, as with you Douglas, I had several surgeons not interested. Good luck with your new surgeon and let’s hope he can get you on the road to recovery!