Posted , 103 users are following.
Is anyone out there aware of any person who has had to have mesh removed due do mesh inguinodynia after inguinal hernia repair with mesh?
6 likes, 596 replies
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sandraoo7 adele_89294
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sandraoo7 adele_89294
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Yes im asking anyone if it possible to undo this crisis I'm going thru with this surgery
adele_89294 sandraoo7
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Through my experiece with mesh and the nightmare it has caused me I have realised there is no quick fix for this, but it will ever so slowly improve over time.
I now have femoral hernias to deal with, but the surgeon who removed my mesh and did triple neurectomy will repair it mesh free, he does not use mesh.
Best of luck.
keithw007 adele_89294
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Hi Adele,
I hope your condition continues to improve. You've been through a lot by the sound of it!
Your symptoms ring a bell - the stabbing pains and the constant severe ache. I had open bilateral inguinal hernia repair using mesh over five years ago and the pain has been steadily getting worse and worse, with the occasional ray of hope from a temporary stabilisation.
I had the hernia repair four months after the onset of chronic pain and eight weeks later was doing well enough to be back at my desk job. The pain never went away though, and gradually worsened to the point where I couldn't work anymore, which was over three years ago, and is worse still to the point where any mobility soon makes the pain intolerable, despite medication*. I attended a pain management course at the Walton Centre in Liverpool, UK, and this helped greatly with the psychological aspects and an occupational therapy point of view, but the pain continued to grow and won the physical battle.
I had a spinal cord stimulator device fitted last year and, whilst the trial device gave a decent amount of relief, the full system has had a much smaller effect, and still
keithw007 adele_89294
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(continued, stupid fat fingers)...still the pain worsens.
The difference in my case is that my severe pain began four months before hernia surgery, shortly after a vasectomy. I'd been warned about the chances of chronic testicular pain, and sure enough that came along, but the worse pain by far was in the lower abdomen, in the position where I later had the hernia repairs. None of the half-a-dozen consultants I've seen understands why a vasectomy could cause lower abdominal pain, though one of them (who fitted my device last year) thought an overly "vigorous" surgeon, which is how it felt at the time, could have led to it.
Another complicating factor might be the spondylolisthesis between my L1-L2 vertebrae, which occurred 11 years ago and did cause pain to radiate along the ilioinguinal nerve to the groin and thighs. However, this doesn't explain the sudden onset (and it really was in a flash) of the stabbing lower abdominal pain.
Now, reading this thread, I'm wondering whether the mesh removal may be a last hope. The hernias were small, though, given they were in the area where the chronic pain is, it seemed sensible to repair them sooner rather than later. Will another op to remove the meshes cause further pain for little or no benefit?
*One of my meds, Carbamazepine, does help reduce the nerve pain a bit, but has brought on an unexpected side-effect: everyrhing I hear seems lower in pitch by a couple of notes! So a D sounds like a B and a B sounds like a G or G#. I blame that for my off-key singing...
keithw007
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Oh, and I've had every scan going, from x-rays and ultrasounds to CTs and MRI, but apparently they've shown nothing except kidney stones. Now they've been fun, although thanks to the chronic pain I've been able to grit my teeth through most of it.
adele_89294 keithw007
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I unfortunately now have developed bilateral femoral hernias. I am having surgery next week - NO mesh this time and I hope a nerve pain free recovery.
The surdeon who removed my mesh and did triple neurectomy does not use mesh in his hernia repairs. He is doing my femoral hernias.
lawrence41918 adele_89294
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john26338 adele_89294
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I have had a hernia surgery in Ireland- left side which went wrong some twenty years ago. I knew straight away when i woke up something there. Mesh wasn't mentioned that time. Was on pain killer injections as it returned with some force. Did exploration surgery -nothing was found except removing scar tissue inside. Surgeon dismissed or fobbed me off after several pain complaints. Fast foward many years later i found myself quite severe pain level 9 or 10 which was quite suicidal that time. Decided to look abroad -usa and visited top hernia specialiists with mesh speciality- Dr Ramshaw and Dr Towfigh cos i then became aware of mesh issues - Both confimed possibility of mesh despite MRi scans with no dye One of them confirmed bi lateral hernia via MRI and tested it via physical med exam confirmed on both sides.Also possobility of nerves as well. Decided to go for dernevation (micro surgery in usa which reduced the pain level from 90% to some 25%). However some residual pain remained there as i realised costs re removal of mesh was too expensive especially in the states. So i looked to Europe and found a surgeon in Germany. In 2015 he removed a lot of permanent sutures made of polypropylne material but no mesh. It was a tough surgery with bi later hernias repaired at the same day. It took me some 18-24 months back to normal. Pain remained inside left groin with incontinence problems. I was informed by surgeon re extensive scar tissue when he found. Mesh encourages scar tissue to grow and bind it tightly as that was the idea of any mesh implant. So had another MRI with stronger magnification with no dye which found another problem which needed another small surgery to clip off close to cord. Pain went away but another pain which was masked shown up. That made me think if there is a mesh somewhere near the bladder cos of incontinence and variocle and pain as well, All of my mri scans were done without dye. Saw Adam's post in regards to mri with contrast dye into muscle irather than vein. Surgeon said -"I don't think it's going to add much over a non contrast MRI". So just thinking of asking doctor re letter re MRI with contrast dye as i have heard it's usually the vein - not muscle.
tom76387 john26338
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john26338 tom76387
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No, It was in Berlin. There is a couple of mesh specialists in Germany/UK as it's a matter of who you chose or visit to for consultations. Have had a couple of consultations with various Hernia specialists abroad even Simon Marsh. He wasn't that good cos two top hernia specialists completely disagreed with him re his report on me. It turned out that top hernia specialist's( 2 from usa) views were correct after all when i came out of surgery. I would be very wary of going to him again after my experience. Have heard of Munich specialist as she's good - she mostly deals regularly with professional athletes even normal joe public as well. A word of advice - look for specialist not a general hernia surgeon with tons of experience or lot of surgical expertise etc.
tom76387 john26338
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My specialist was the lady from Munich so this is why I am trying to find someone else who might give me a second opinion. Did Simon Marsh offer any tests at all? Did you have the nerves removed by Ramshaw? If so I wonder why he also did not remove mesh unless you didn't have any in the inguinal region?
Are you feeling better still since the nerve removal?
john26338 tom76387
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No Dr Marsh didn't offer any tests at all just only physical med exam etc. I wouldn't advise it cos waste of money spent and felt useless afterwards. It was only later after i found out that he specialise in Gilmore's groin problem which was named after him. Ramshaw is superb doctor-top notch as he is very compassioanate and understanding as to where mesh patients were coming from. His speciality is mesh removal and neurectomy( nerves). Didn't have nerve removal yet just trimmed off nerve/s as both hernias were repaired. But his fees was quite expensive. The removal of nerves would be the last resort cos no guarantee that it would be succesful. It depends on the patient and also level of pain as well.
Shar_UK john26338
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Prof Aali Sheen in Manchester removed my inguinal mesh and tacks placed by another surgeon, I had suffered horrific pain for two years since it was placed and nothing showed on any MRI, ultrasound or CT scan, although the mesh was actually attached to my bladder, my Psoas muscle, main blood vessel and fastened to my bone. My bowel and fascia were both under tension causing bone pain. It took him 3 1/2 hours of actual surgery time to remove it, with the exception of a strip on my main vessel and I saw a significant improvement immediately. He is a sports groin specialist as well as British hernia board member but again deals with both athletes and the ordinary patient and has removed quite a lot of mesh, personally I can't recommend him highly enough and most surgeons won't even consider removing mesh so I am extremely grateful to him. I have remaining issues which I believe is linked to scar tissue caused by the mesh but also to a procedure involving an inguinal ligament release which was done at the same time as mesh placement which I believe is the main cause of my remaining pain and a small groin lump, possibly due to lack of ligament support and would be interested if anyone else has had a similar ligament procedure done with mesh causing pain and problems.
john26338 Shar_UK
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When you mentioned horrific pain as some surgeons out there don't understand it. Ramshaw understood it as he told me couple of his patients committed suicide week/months before surgery date of schedue list. his You are correct that most surgeons won't go near patients with mesh problems nor remove it. You still have problems with scar tissue like i have. I do have problems with incontience and UTI (urinary tract infection) due to scar tissue inside or hidden mesh somewhere near bladder cos MRI without dye can't see it. Glad that you mentioned Dr Alai Sheen as it give hope to other patients with mesh out there.
ju_86 Shar_UK
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Shar_UK ju_86
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Hi , Prof Sheen does both private and NHS. I was lucky enough to gave private healthcare through work, but he was prepared to put me on his NHS waiting list even though I was outside of his area. I wished I'd found him sooner.
ju_86 Shar_UK
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He sounds amazing! My husband has been suffering with chronic pain in his groin for over 10 years now, I'm sure it's the mesh he had put in from a hernia repair that is causing the pain but no scans show anything. He cant work anymore it's got so bad, but no one will do anything, he's just been left of 15 tablets a day!
I'm going to look into Prof Aali sheen, he he be our only hope!
Thank you for your reply x
Shar_UK john26338
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I'd had an MRI but without contrast, although a CT scan with contrast still didn't show mesh attached to my bladder, even though I also had lots of UTI's, The surgeon who placed refused to acknowledge mesh was a problem and you are right, they have absolutely no idea how bad the pain is and the affect it has on your life and that of your family. The more we can share to help others, the better, as I honestly didn't know where to go for nearly two years, but I think surgeons really need to reconsider using the mesh as an easy option. Good luck with getting your last piece of mesh removed and hopefully resolve your bladder problems.
Shar_UK ju_86
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nanda80706 Shar_UK
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Shar,
I've been reading your story and I'm so interested I'm so thankful that you shared it. I am going through my own suicidal level of pain for over a year-and-a-half after a botched tummy tuck surgery but I may have a surgery to basically create a ventral hernia in my abdominal wall so they can remove damaged tissue and the center and somehow get me closed. I am getting so much hope from you guys on this Forum as I have tried everything for this Pain and Disability I cannot walk I could not sleep eat I have tried every medication with all the side effects you can think of. I was training for a half-marathon before the abdominal surgery and afterwards was completely wheelchair-bound until just recently and couldn't even walk to the bathroom or shower on my own. It has been the biggest hell on Earth you can imagine why I lay there for days and nights being cared for by my parents praying for death or some end to the pain.. which feels like about 20 different types of pain going on at once I can't pull myself to a standing position it feels like the muscle is completely contracted and Everything Burns in my abdominal wall I also feel like I am being constricted by a boa snakes and the pressure on me when I'm laying down feels like a truck on my abdomen. I've had every CT scan I've been to the ER multiple times and my organs and blood work look fine but as you guys probably never imagined as well pain in your abdomen and groin could be this bad. I will probably need some sort of mesh to get that created hernia closed so I am reading your mesh stories very carefully. Can you let me know how you are doing now and how did you get through that time and keep your job while you were looking for Solutions in level of pain you were in. I am currently taking oxycodone around the clock and on Lyrica and have a internal baclofen pain pump implanted in my back and I still struggle just to walk around the house which actually is an improvement from being completely bed bound. Did you have to have any muscle removed in your operation?
Shar_UK nanda80706
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Hi Nanda, I'm really sorry to hear about your horrific suffering and can relate to your pain and it's affect on your quality of life. I was unable to stretch on my right side from my groin as far as my rib cage due to pain and tension caused by the mesh tacks, mesh shrinkage and also scar tissue created by the mesh, it also dragged my bowel and fascia causing pain through my hip and back, it sounds as though your procedure has created a similar scenario because your abdomen and groin has been compromised, have they removed too much tissue? Have you also had infection? The mesh was attached to my hip flexor muscle but the surgeon managed to scrape it off, so I've not actually lost or had any muscle removed, but I have remaining nerve damage and scar tissue and although my mobility remains compromised and I still suffer daily pain and bad days, my pain levels have improved significantly from where I was. I'm pleased the site has offered you some hope, as I also found support from it when I was seeking to have my mesh removed. Suffering chronic and horrendous pain can be a lonely solitary place . It was hope that I could eventually find some resolution which kept me going, a bit of light at the end of a dark tunnel , there were dark days I never thought I would see an improvement . I've spent significant time off work sick, my first time ever but luckily I've been well supported, although I've been unable to get back full time and will be looking at "retiring" soon. You are different in that you may have to have mesh placed to offer some respite, whereas we have issues with mesh placed and requiring removal. I don't envy your decision, but understand how desperate you are. Some of the things I have learned is that fixing the mesh with tacks, staples etc can add to chronic pain and should be avoided where possible, that self fixing mesh can be prone to infection and difficult to remove and also that polyester mesh causes a more severe inflammatory response than polypropylene, foreign body response is also a risk. Is there nothing they can offer you without the need to use mesh? Have you already had muscle removed or do they intend to remove this along with the damaged tissue? Please look carefully into your options regarding mesh, although if you are unable to even stand, you must feel you have no other choice. I was also taking lyrica for two years plus, the withdrawal was not good and I still have after effects, I have since found it is apparently a depressive drug, which will not help your mood and was not particularly effective for my pain, although I believe when it does work it is very effective. My very best wishes to you and hope you find some answers and respite. Take care and let me know how you get on.
nanda80706 Shar_UK
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Hi Shar UK,
Thank you so much for your reply to me. You are very thoughtful and articulate in everything you share. Sorry it took me so long to get back here but I have since had the surgery, and it did help one aspect of my pain but created so many more problems. What they found when they went in was a wall of cement like scar tissue all down the middle of my abdomen to my groin caused by repeated Trauma from the original surgeon which is why I couldn't stand up straight and struggle to even take a few steps and the pain was continuous as nerves are all trapped in that scar tissue continually giving out signals. They removed that tissue as well as about a third of my rectus muscles on each side which is a pretty radical idea but I would never have healed anyway based on what they found when they went in. I'm about three and a half weeks out of surgery and really not recovered at all. I was on high-dose opiates before and they really never could get my pain under control because of this. I got the idea to have an epidural from this site but because I have a pain pump in my back now they refused when I got to my surgery even though I had the green light from my pain doctor. I am still mostly bedridden trying to walk so that my muscles don't freeze up my scar tissue in the wrong place again. it was my thought that they would have to remove most of my rectus muscles and the surgeon as well making mesh my only real option to reconstruct my abdominal wall. However they ended up being able to close me using abdominal wall reconstruction component separation techniques and even though I am quite thin and small. In that case I would not have needed mesh or she could have used some biological mesh. I was not happy that I have now so much mesh oh, it is a hybrid mesh attached on the underside of my muscles and on my oblique muscles as well. I feel this is overkill as my muscles are quite hard and tight and know what I know that had some similar surgery and was closed had to have any mesh. I was quite grateful to the surgeon and plastic surgeon for taking on my case locally but I am struggling so hard right now with increased surgical pain back, back pain, and incredible tightness and pressure and inflammation of my muscles. I'm afraid some of my issues have to do with the mash and the way she sutured it in all around my abdominal wall as I feel intense pulling everywhere. I don't think I can make it through another massive surgery but already wish I could have this mesh removed as they did not take out as much muscle as we thought and really didn't need that mesh in the end. I tried just going to lunch with some friends after a doctor's appointment and even that left me throwing up in horrible pain with just trying to sit up right and painkillers can do very little. I I am unable to work and not sure what to do from here other than try and recover and see what I'm left with Pain and Disability wise. Thanks for sharing your story again and replying to me, these are very dark days indeed but it's really helpful to read everyone's stories and see their long road 10 recovery and some semblance of quality of life back.
tay56201 nanda80706
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Shar_UK nanda80706
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