ilioinguinal nerve damage

[Mike9283]

I appear to have some nerve damage following open inguinal hernia repair.  It has been over four weeks from the surgery and I still have much discomfort.  Almost the entire area covered by the ilioinguinal nerve is either numb, burns or simply hurts when touched.  When I move in certain ways I get a stabbing pain in that area accompanied with a sensation of being bit by a bunch of wasps.

The surgeon tells me to simply stop complaining it will get better, had other medical advice that just be patient it will either get better or the nerve will die.  I am not entirely comfortable with either direction.

I am not a "wait and see" type of guy.  The discomfort is keeping me from concentrating and doing my job at the level am  accustomed to, the drugs that the people have given me simply make me not care about work.  So the choices given me are just deal with the pain and not be able to function or take a bunch of drugs and not be able to function.

I would like not to lose my job simply because my doctors prefer a conservative course of action.  Suggestions on what a more aggresive next step should be?

[Farmer2656]

I have had genitofemoral nerve damage for 10 years, it has destroyed my life. Only those who have experienced this pain can understand the hell. I treat it with oxycodone, cymbalta and a spinal cord simulator implant. None of which works very well. I have to avoid almost all sitting. Garry

[Tylerjsmith]

Yep. Waiting for death

[MRT544]

So... sorry to here all your stories - I read each one with the sincerest empathy.  You see, I too have been the victim of hernia surgery.  October 7, 2014 was the day I had my open inguinal hernia surgery - my life has never been the same since.  Progrip mesh was implanted in me,and my inguinal nerve was also removed during the surgery.  Immediately after the anesthesia wore off I knew something was seriously wrong. The pain was way more than the normal I just had surgery pain. I called my surgeon, and he actually laughed and said I was fine and that was normal - just give it a few weeks he said. A month later I was still in terrible pain - burning, stabbing , pinching pain over the incision, the base of my penis, down into my right testical, and down my right inner thigh. I went back to my surgeon, he said your fine this is normal - it happens all the time. Let me give you a shot of pain medication and steroids in your groin and you'll be fine. A shot in the groin? (are you kidding me - needle in the groin, the horror of it!!!) I was in so much pain I let him give me the shot in the groin. It gave me some relief for about 4 hours and then right back to terrible pain again. So, I went back to my surgeon again. He gave me another shot ( by the way - these shots hurt like living hell!!!)  Over the next four months I went back to him eleven times for shots in the groin. He also tried giving me oxycodone, vicodone, tramadol, gabapentin, and none of it worked.  I then went to a pain management specialist - What a joke this was. He asked me what I wanted him to do. I said you're the dam expert doctor - you tell me.  He offered more shots in the groin, and more pills. I said I've already tried all that and walked out.  I then tried physical therapy, stretching, message, yoga, meditation, juicing, prayer - you name it I've tried it. The only thing I haven't tried yet is suicide.  I was a very successful car salesman - won many awards. Making over $100,000 a year. I was a avid long distance runner, had a black belt in martial arts. I could jump rope, move quickly, very athletic. I've lost my job because of this constant pain, and I can know longer run or practice martial arts. I also had to stop having sex because it hurt so bad down there. My wife left me because of it. I lost my health insurance. I've been living off my retirement savings - but that is almost gone now. I'm about to loose my beautiful house that I worked so hard for.  I was a go getter - never lazy. Never took hand outs. I cannot believe my life is going down the drain. I feel so alone and helpless.  I found a surgeon in Pennsylvania that will remove the mesh and try to fix it - He has helped many others with this same problem. The cost is $15,000 dollars. I don't have the money anymore like I used too. If any of you are rich and would like to donate - I'm not too proud at this point to turn down the help. Or, if anyone just needs someone to talk to or someone to just listen to them - I'm here for anyone that's going through this hell. Anyone can contact me at my email: ***@****. Good luck to you all, and take care. MARK THE MESH VICTOM

[Tylerjsmith]

Doctor did the same to me on purpose. 9 years no relief. Waiting for my body to give out from the medication so i can die.

[PitzDidge]

I'm a little confused about when your pain was so unbearable.  Was it before or after your surgery with Dr. Conway?  How are you feeling now?  

I've had this pain for 3 years now and have tried several east and west medicine approaches only to realize temporary pain relief, nothing permanent.

Thanks, Pitz
Please respond to ***@****

[GMWoodward]

I notice it's been a few years since your original post.  Did you ever get a solution to your nerve problems?

Thanks.

Geoff

[mugzzy]

yeah right..I have had pain since 1985 from hernia repair..I went real good doctors in boston and pain clinics and they could not do a dam thing..one good thing doctors are good at is passing the buck..

[mugzzy]

I have had the same pain as all you guys since 1985,after hernia repair started right away..I went to the surgeon about a month later and said there is nothing wrong without even examining me and said go see  urologist..I did and he said go see a pain doctor..to make a long story short 25 years later I am on disabilty.. 60 years old and divorced twice and alone in my pain..the other day I just about able to lift my right foot up and on the  brakes on my car..pain in my right testicle,,at least 25 or more doctors ,accupunture,pain clinics.chripractors,phyical therapy..3 back surgeries ,hip replaced..redid the hernia two more times..ensaids ruined my stomach and I can't take pain meds do to the fact that it makes me vomit..so you can see that I am still looking for a cure ..what a life..oh 2 years ago they said I have throat cancer..never smoked anything..

[Tylerjsmith]

Know the feeling. My two cats love me, which is good since people do not want to be friends with me with this pain and the drugs.

[Lzliza27]

Dear c11brown,

Here is the info for Dr Mark Conway


I have found Dr Mark Conway's website.. Pls see below
SOCIETY for Pudendal Neuralgia
http://www.spuninfo.org/index_files/Page771.htm

He and other neuro specialists doctors are listed

[Lzliza27]

Conducting endless searches for nerve damage information and diagnoses.
I have been researching nerve entrapment... it sounds like maybe you have this?
I am suffering from femoral nerve damage following a femoral nerve block (local anesthesia).

I have found Dr Mark Conway's website.. Pls see below
SOCIETY for Pudendal Neuralgia
http://www.spuninfo.org/index_files/Page771.htm

He and other neuro specialists doctors are listed

[cabron79]

I am very interested in what state ulive in' i work for a w/c attornry in california and have a client with this same pain and i had to streer the doctors to get them to stop looking for the hernia.  Hes gone 4 years with this pain.   E mail me if youd like.  M.***@****

[Tylerjsmith]

Ilioinguinal and genital branch of the genitofemoral nerve pain for almost 9 years. There are no solutions.

[c11brown]

Hello my husband is in a similar situation. I can't seem to find the ilioinguial surgeon at Duke? Do you think by chance you could find that out for me? He is in the army and has had two terrible surgeries, it's been over a year now and he is still in cronic pain all day everyday. His PCM has given up on him and thinks it's all in his head. He has seen surgeon after surgeon and right now we are working on trying to get him to a specialist, the army has just been a great big headache. His first surgery he had mesh and a plug to repair his surgery and the second they put in an additional mesh and a larger plug bc the plug slipped throught the mesh and bonded to his bladder in his first surgery. We are so exhausted with the doctors and are tired of being given the run around. They aren't in his body so they don't know what pain he is in, it's just so pathetic. If you could please send me the name of that Doctor, I would greatly appreciate that. You have given me hope!

[taddane]

had extensive neurofibroma (benign tumor) excised from the base of my penis 4 weeks ago.  never any discussion of risk to penis.  never. have zero feeling in penis, not one erection.  starting to get suicidal.  anybody have any ideas?

[mrsk09]

not sure where you live, but there are only 2 illioinguinal surgeons in the country - Dr. Mark Conway, Nashua NH and another Dr. at Duke University in North Carolina - i have personally had surgery with Dr. Conway - the nerve pain is gone, however I am still experiencing some other form of pain which is a burning, stabbing pain that only occurs with activity and if I move certain ways.   christmas was horrible for me this year.  as a newlywed, i spent most of the weekend in bed with horrific pain...to the point where an ER doctor told me he did not believe me on Christmas Eve.  Said I was faking it.  It is a real pain and for those who don't believe you or have ever had that kind of pain, when you have it for days,weeks, months and in my case years, it takes over your whole life.  Please try contacting Dr. Mark Conway- he was an amazing surgeon.  Best of luck.

[canukbabe]

ilioignal nerve intrapment can be surg removed, nerve-ectomy correct, i've had this since 2005.....24hour pain unable to sit stand walk.....i live on my sofa, in pain......pain meds don't help much....i've done it all tens unit, steriod shots, nerve blocks, therapy....driving in the car is the worst pain, it takes me days to recover a car rid......my pain doc thinks the surgry is pointless, because i've had this for too long and i have memory path pain....
don't u thing i should try the nerve ectomy..any way, wouldn't u if it was u or your wife?  i want to try.....then how do i find a surgoen........i'am lost......and i want off the bench........please help........sofa person................canukbabe

[mjh732]

Hi I just wanted to give some info since I had been threw hell for over the past two years. In March of 07 I had pulled my right groan area wich resulted in me having a open hernia procedure. After two weeks I was sent back to work wich I felt was to soon but it wasn't up to me since it was workers comp case. So after a few weeks everything felt fine no biggie went on with my life as before. In Nov of 07 while lifting a garbage can it felt like someone took a burning hot knife and stabed me in the area were the scar was from the previous herina surgery. Went right to the workers comp Dr wich at that time told me that I pulled a muscle ect take some meds do some rest and come back in a few days. So I did as advised went back still having same symptoms so he sent me to have a cat scan done. Went back to Dr for results he told me that I had a recurring hernia in the same spot from before and I needed to see a surgeon again. I was like oh god here we go again but he had also told me that I might have nerve damage from the previous surgery. I explained that I felt ok since the surgery so how could it be nerve damage? He told me that nerve damage can come instantly or come months after having surgery. I didn't know what was going on all I knew was I was in alot of pain and wanted this fixed or whatever. So workers comp sent me back to the original surgeon that fixed me prior. He had examined me said everything was fine and that there was no need to due surgery and referred me to a urologist. what a joke went to him he said I had mild prosatitis and gave me antibiotics. Well after taking those meds and not feeling any better at all I knew something wasn't right. Went back to regular W/C Dr in end of Jan of 08 and he said he had no choice but to send me back to work wich I was like how can I go back to work I can barely walk. So by that time I went and got an attorney considering workers comp started given me a hard time. She had filed a claim wich took 2 months to go in front of a judge. He ordered workers comp wich they took forever to have me looked at from a different surgeon. Now being hurt and working durring all that time I had gone to the ER about 8 times because of severe pain wich was a nightmare alone cause after a few times they wouldn't really treat me. I couldn't see my own Dr or anyone outside workers comp nobody would see me anyways unless aproved by them. So threw all this time I start experiencing pain traveling from around the scar done threw the inside of my thigh with muscle spasms. The pain and burning was getting worse with time They finally put me back out of work in Sept of 08. So after seeing a pain specialist two Urologist's three Surgeons they finally pawned me to a Surgeon out of a Universty Hospital cause know body wanted to either touch me or said they didn't know what was really going on. After all the bull the run arounds you name it I finally had exploratory surgery. The results were that the mesh plug that was put in had some how shrunk and hardend. So that was replaced with flat mesh then a plug because there was also a small recurring hernia after all. The ilioinguinal nerve was damaged and rubbing up against the faulty mesh plug wich had to be cut out along with two smaller nerves that were also damaged from the previous surgery. I had gone back for post op visit this past Wed and was told it is to early to tell if there is any permanent injury so I am keeping my fingers crossed. Still in pain but feel different in certain ways kinda weird. After all this I went threw so much unneeded b/s I have a 2 and half old daughter and a 7 year old son. I have missed out on so much before this I was a very independent guy and to this day it is still hard for me to ask for help. Just to think because of workers comp delaying and making my life a living hell I could of gotten this surgery done prob a year ago(not like I don't have Insurance). Now there gonna send me to a pychiatrist and pychologist for trama that I had and are going threw. Those that are going threw this my heart goes out to you after reading articles and peoples stories it's sad. What some Dr's put you threw is pathetic and god forbid your suffering and they give you the run around and not properly treat you.

[Dr Vinod]

The ilioinguinal nerve travels along the superficial surface of the internal oblique muscle, passing on average 1cm from the inguinal ligament. The surgeon should be very careful while giving incision and hernia repair as this can be identified. In some cases the course of the nerve varies which i think in your case might have happened/surgeon error.
Once the nerve is damaged:
Symptoms could include hyperesthesia or hypo-esthesia of the skin along the inguinal ligament. The sensation may radiate to the lower abdomen. Pain may be localized to the medial groin, the  scrotum, and the inner thigh. The characteristics of the pain may vary considerably. Patients may be able to associate their pain clearly with a traumatic event or with the surgical procedure. (As in your case.)

The diagnosis can be made on the basis of local infiltration of anesthetic with or without steroid and should result in relief within 10 minutes. Unfortunately, no electrodiagnostic techniques are available to readily test this nerve. Abdominal needle electromyography may be helpful in determining the severity of nerve injury, but electromyography is not sensitive or specific.

Treatment:

Treatment includes local injection of an anesthetic, physical therapy, or oral medications. Types of medications may include antiseizure medications, such as gabapentin (Neurontin), carbamazepine (Tegretol), or lamotrigine (Lamictal), as well as NSAIDs, tricyclic antidepressant medications (amitriptyline [Elavil], doxepin), capsaicin cream, topical lidocaine (Lidoderm patches), or tramadol (Ultram). Ice or possibly a TENS unit may be used with physical therapy. When conservative measures are not successful, surgical excision may result in relief of pain with few potential complications.

I think this might be useful to you. Take care!

[Mike9283]

ilioinguinal nerve damage....   so three votes for wait around until you lose your job.
How would one understand if the nerve was included in some of the sutures, has the mesh rubbing against it or was simply cut or damaged?  If it was included in one of the sutures, just simply wait for what? for the constant irritation to kill the nerve.

I have had my prostate removed in an attempt to eliminate prostate cancer.  I have  been waiting 6 years for those nerves to regenerate so I have heard that song before.

I was hoping to understand what are the diagnostic options available not simply to blindly listen to the surgeon.  Thanks for the effort none the less.

[Dr Vinod]

You cannot do anything for nerve damage. Regeneration of lost function will take time, 6months- 1 year you will regain some function if you leave it like this. Following your surgeon and taking him into confidence for this is always good. Take care!