My mesh story and questions about removal

[DrBrown]

Dear Ark93.
It is important to determine the etiology of your pain before proceeding with surgery so that you know what needs to be treated.
If the pain is in the skin that it is probably nerve in origin. The pain is deep inside then it is probably related to the mesh. Pain in the testicle and pain during sex is usually related to the spermatic cord becoming adhesive to the mesh.
regards.
Bill Brown MD

[Arkj93]

Hi [USER=”1448″]rc009[/USER] and for anyone else who is interested,

On Friday I had my consultation with Dr Earle. He seemed eager to help, and said that the mesh removal is feasible, although he wanted to try me on his 3-week anti-inflammatory protocol first to see if that helps. So he has given me a six day treatment of Medrol dosepak (methylprednisolone) and after that I am supposed to do 2 weeks – twice a day of naproxen 500mg for the pain and inflammation. So far I haven’t noticed any bad side effects from the steroids except for a little bit of stomach irritation (helps if I take it with food), however it doesn’t seem to do much for the nerve pain. Prior to seeing Dr Earle I was taking gabapentin 3x a day for the nerve pain which helped a lot initially but then I began to have some really bad side effects from it, i.e. mental fog and extreme lethargy which was interfering with my work and daily life. I have since stopped the gabapentin but the nerve pain has returned. Dr Earle said he would see me again in six weeks and we can discuss mesh removal more if the steroids/anti-inflammatory meds don’t work. In the meantime, I have also set up a consultation with Dr Yuri Novitsky in New York for July 9th. Dr Novitsky was recommended to me by a local surgeon in my area who said if he had a hernia or complications that’s who he would go to see. So at this point I am still a little discouraged that things are not moving as quickly as I’d hoped but I remain optimistic that soon I can get this behind me.

Thanks everyone who reads this and who offers their support.

AJ

[rc009]

Arkj93 I am seeing Dr.Earle next week for chronic pain issue. Please let me know your progress. Mine is not so much the mesh but specific nerves..GFG likely. I don’t even know if he deals with this but I heard he is a recommended hernia expert.

[drtowfigh]

[USER=”2883″]Victim73[/USER] There is treatment for vas damage and testicular pain due to vas damage. If you’re told otherwise, seek another consultation.

[Victim73]

Mesh removal creates New huge scar tissue. Scar tissue nerve contact creates pain. Scar tissue is like mesh. Hard, dense and durable. During surgery You may disturb or damage new nerves. After 10 months You will experience New issues due to scar formations. You May damage vas deference or other structures. İf You damage Your vas deference then there is no solution. Testicular pain can be come. Etc etc etc .
my vas deference is damaged. İf it is removed most likely i will have vasoctomy pain. İf my testicle removed i will get phantom pain…. No solution……

[Jnomesh]

Arkj93. For me I had issues on and off for 5 years-my implanting surgeon only checked for recurrence when I’d see him in and off for the first year. As long as their was no recurrence he was insistent that he didn’t know why I was in pain and discomfort.
over the first 5 years I had cat scans and MRI’s that showed no recurrence and mesh placement was fine.
This is the unfortunate climate of the medical field as it relates to mesh issues. Except for a small handful of surgeons spread out of the United States they really only look st recurrence for cause of pain and some classic nerve issues.
Right up to 3 months before my removal tests, radiologists and surgeons (except when I eventually found dr. Igor Belyanski) we’re insisting that there was nothing wrong with my mesh, it was in the right place and even if there was something wrong with it, it couldn’t be removed.
And of course as I mentioned my mesh was completely balled up and shifted-but yet all was well???!!!
For 5 years I managed until 2017 when somehow else gave way/happened-and the “pain” I was feeling was 10x worse then previously. It stopped me from working, being a dad and a husband.
Thanfulky, my wife signed me up to a mesh Facebook forum and after a exhausting 6 month search I found dr. Belyanksk who diagnosed the problem. In this unfortunate experience I suppose I was somewhat fortunate that my situation was finally diagnosed even though if it wasn’t I was set in my mind to have laparoscopic exploratory surgery where I was sure they would find something. For many, mesh can be Erie king havoc even if it is technically placed properly and doing what it is supposed to do.
There is so much more information out there now then there was in 2011 and hope for people who are having problems post mesh implantation.
For 5 years I trusted the medical community that all was well with my mesh and my symptoms were something else but I often think back and feel things may have been worse if I’m the beginning someone else tried to remove my mesh-so I have to be thankful in the way my course played out-I guess.
Still as of today very frustrating.
I think you described earlier the feeling of sandpaper in your groin to describe some of your pain. That was one of my symptoms along with three others-a brick like feeling in my abdomen, something squeezing my anatomy, the feeling like my stomach would swell up as if I was 4 months pregnant if I lifted something heavy and didn’t support myself and later I’m 2017 a tearing squeezing sensations as well as a awful burning down my thigh and outside of my groin crease when I sat that was horrendous. I can say for me all of the symptoms are gone since mesh removal except for the burning down the leg when sitting but it is now manageable.
That sandpaper feeling is still sometimes preeent so I don’t know if that was a direct symptom of the mesh or nerve irritation or both.
Im pretty sure in my case the mesh did something to my lateral femoral cutaneous nerve that resulted in Merlagia parenthetical but at this point in my life I can live with it as it only comes about when I sit and I’m not looking for anymore surgery or even nerve blocks which I tried before mesh removal.
i believe mesh removal comes down to two simple tenets:
1) Having it removes successfully and not being worse off after removal
2) how one feels lost removal-is ones pain symptoms relieved
I personally believe there are a few surgeons out there that can take care of step one-getting the mesh out succwssfully witbkut makkng someone worse.
How one does after removal depends on so many variable related to ones situation.
As I mentioned a lot of people who have seen Belyanksk for removal are doing significantly better. If removed lapro from lapro implanted mesh I haven’t met one who had any hernias post removal-I less it was a open removal which often requires removal, repair and sometimes neurectomy -a much tougher and trickier recovery.
Feel free to reach out anytime-and I wish you the best on your personal journey I’m this mesh nightmare.

[Arkj93]

Hi Jnomesh and Victim73,

I appreciate your replies and your concern unfortunately I believe the mesh removal is my only option at this point. Luckily I do not have any pain or swelling in my testicle but I do have a cutting/burning pain near my hip and in my lower abdomen above the pubic area that is intense and will not go away no matter what I do. At this time my situation feels urgent and I am just counting down the days until I can see my surgeons of choice (one is local and the other is Dr Earle in MA). To Jnomesh and Goodintentions specifically, you two seem to be the veteran “troopers” of this forum and I appreciate your advice. I have no idea how you both put up with the mesh inside you for so long as it has been just a little over a year for me and it is already driving me crazy and drastically reducing my quality of life. Without your stories of successful mesh removal I don’t think it would be possible for people like me who are suffering in pain to have hope that things will get better.

[Victim73]

quote Arkj93:

Hello everyone, and thank you for taking the time to read my post.

My name is AJ and I am a 26 y.o male who had a left inguinal laparoscopic (TEP) hernia repair with Parietex polyester mesh in May of 2018 at Kent Hospital in Rhode Island. I found this forum shortly after I had my hernia surgery, but I have only posted a couple of times here. This forum has been a blessing for me as I feel connected to the others who have shared their stories here. As far as my original hernia goes, I was told it was small, about the size of a dime, but it was causing me some pain and discomfort in the groin and lower abdomen. I don’t know exactly what caused the hernia, but I suspect it came on rather suddenly after going to work wearing a pair of pants and a belt that was too tight for me and the repeated bending over to pick things up that my job required at the time. Similarly to many others on this forum I was told that the laparoscopic repair with mesh would be an ideal fit for me, and despite being skeptical about the mesh I was convinced by my surgeon that this option would give me less pain. My surgeon also told me that he had both left and right inguinal hernias of his own repaired with the same mesh, which gave me some confidence. I really just wanted my hernia fixed and I was told this would be the best option.

The initial recovery from the surgery went smoothly at first, with some pain and discomfort, but nothing too bad. Over time however I began to experience pain and tightness in my lower abdomen, groin, and down the inside of my left leg. At around the four or five month mark from surgery I decided to make an appointment with the surgeon who performed my hernia repair, and he told me that what I was feeling was normal, and because the scar tissue was molding around the mesh that I might continue to feel some discomfort for up to six months, maybe even longer, but that it should get better over time. As time went on however, the pain did not go away. I began having more unnatural pulling, pinching and burning sensations in my hip, in my groin where the mesh is, and even down my leg. To use an analogy, sometimes I feel like there are fire ants crawling around inside me where the mesh is. Sometimes the skin and flesh around the mesh will itch and burn intensely for a few moments and then go away, and the area feels slightly inflamed. I often feel like the edges of the mesh poking into me and an overall feeling that something is rubbing like sandpaper inside of me, especially near my pubic bone and above the pubic line where it meets my abdomen. Sometimes the sensations will keep me up at night and keep me from getting a good night sleep and causes me lots of distress. I also get what feels like severe muscle cramps in my legs and spasms around the mesh area. I am almost entirely convinced that I have some sort of nerve damage from the mesh, but it is not proven. I have seen my primary care doctor several times and he believes too that I am describing neuropathic pain.

My doctor has recommended that I see another hernia surgeon in my state who specializes in robotic surgery. I am pretty much convinced at this point that removal of the mesh is the only option and I am not really interested in trying to “salvage” the original surgery, since I have many concerns about the mesh besides just the pain. Still though I am afraid of having a second surgery especially because of what I have read about mesh removal being risky. I have reached out to Dr. David Earle in MA as well but I don’t believe that my insurance will cover surgery with him (I am also a full time student with a fixed income, so that is an issue in and of itself). Any way, I had a few questions for anyone here who has had a mesh removal, and for the surgeons who perform it. I am genuinely curious about what the recovery process looks like after mesh removal and what I might be able to expect. From what I gather, it seems that the recovery process from mesh removal is longer for some than it is others, and I am just wondering what surgeons and mesh removal patients recommend for recovery time. I understand that in some cases neurectomy is performed, but not all. All in all I am just looking forward to having this problem be put behind me, so I can get my life back.

I appreciate everyone who takes the time to read this and offer their input and I am so happy that a forum like this exists. I am probably forgetting some important detail as I write this so I will be glad to answer any questions that anyone has as well.

Thank you all.

AJ

Dont remove mesh. It is a crime.. You will be worse…..

[Jnomesh]

Hi Arkj93
not sure if you have seen any of my posts about my removal surgery. I had my lapro mesh removed by dr. Igor Belyanki a little over a year and a half ago.
my mesh was in my for about 5 years before being removed.
if you would Like to PM me feel free. I am also in touch with a good amount of people who have had their mesh removed by Belyanksk and if you would like could see if I can put in you touch with them to hear their stories and to see how they are doing.
i can tell you that he is one of the best if not the top removal surgeon out there especially when it come to removing mesh laparoscopically.
That being said this is a very serious operation and my letdown so advice is to put in the time and effort to treat it as one and that in my opinion not only means interviewing/consulting with at least 2 or 3 removal surgeons so you can make the best decision even if this means traveling or having to come up with the money somehow.
There is a saying out there when it comes to mesh removal that you really only get one chance to get this right. You can be made worse by removal if you don’t pick someone highly skilled with plenty of removal experience. If this means traveling or spending some $$ to get it done right then do it -your health is worth it.
I traveled from Ny to Md to get the operation done.
He did not accept my insurance and I was prepared to pay out of pocket-his rate was more than fair (much cheaper then some of the other surgeons quoted). However, I was pleasantly surprised that my out of network benefits pains for everything. So look into if you have out of network insurance benefits.
I can tell you that out of everyone I’ve spoken to who have had their mesh removed by Belyanksk no one is worse off after there surgery. This is huge bc there are people out there who have had their mesh removed and are doing worse.
i can tell you most of the people I am in touch with are significantly better: some 100% some 90% and some 80%.
You should have realistic expectations about mesh removal surgery. Everyone’s case and situation is different.
If mesh has adhered to structures that pose a removal risk
Belyanski will get as much out but may leave small amounts on the spermatic cord or iliac vein and artery. So in some cases 90-95% of the mesh may be removed. Better this then say losing a testicle or bleeding out during surgery.
Be aware that recovery from removal is different for everyone but for many like myself can take a good among of time in which small but noticeable improvement d can be noted.
On one hand for me I went back to work around 6 weeks lost removal but still had some burning issues when I sat and some soreness in a area where a believe my mesh was folded and balled up for a good amount of time. At the year mark and the 19 month mark I noticed little improvements that keep gettting me closer to the 100% mark. I think Good intentions can attest to this.
I did not have to have any of my groin nerves cut by Belyankski and this is another reason I chose him as he does not believe in cutting the nerves unless warranted.
insersatnd that there are some surgeons who believe mesh removal and neirdctomies go hand in hand.
From my research and talking to others I believe that lapro removal is a less traumatic surgery then open removal-with easier recovery times-so this could be a plus in your case.
Another thing ive noticed is that with lapro removal of lapro implanted mesh is that when the mesh is removed there are no hernias present (if the mesh had been in for a while ) so the stress of trying to figure out want to do once the mesh is removed if there is a hernia present but there are usually no hernias present as scar tissue fills in the defect. Bieber you should have a game plan of what to do in case there is one .
I highly rx Belyanksk. Still get a couple of opinions.
Dont let travel or $$! get in the way of seeing the best of the best .
Hope this helps.

[Arkj93]

Hi Good intentions,

Thanks for your reply, I appreciate the input and guidance. I believe that my original surgeon had his hernias repaired bilaterally in a similar fashion as I did (laparoscopic TEP). Unfortunately I was very naive about the complications of mesh surgery and at the time I just thought “well if it’s good enough for my surgeon it’s good enough for me.” I had heard about some of the stories of mesh on tv and seen the ads, and I was skeptical about the mesh, but ultimately I feel like I was “sweet talked” into getting the mesh implant. In my case I believe it was just the one piece of Parietex, standard size.

One thing that really frightens me is that the mesh might’ve adhered itself to a major vessel such as the epigastric or iliac vessel. I am aware that in those cases a piece of the mesh will be left behind indefinitely. I can definitely “feel” the mesh in the inguinal area and to my midline and I suspect it reaches almost to my hip bone but I can’t be sure. It also boggles my mind that some of the other mesh complication patients including yourself waited for years to have the mesh removed, when for me it feels like the passing of every day is agonizingly slow and I am struggling to keep a level head until I can see my surgeon of choice.

Be well,

AJ

[Good intentions]

quote Arkj93:

Hello everyone, and thank you for taking the time to read my post.

My name is AJ and I am a 26 y.o male who had a left inguinal laparoscopic (TEP) hernia repair with Parietex polyester mesh in May of 2018 at Kent Hospital in Rhode Island.J

[USER=”2580″]DrBrown[/USER] might have some thoughts on your situation. He has removed a lot of mesh, I believe. One thing that might make it difficult to remove is that, for TEP, it’s possible to lay the mesh all the way over to the linea alba. The centerline of your abdomen. And all the way down to the pubic bone. It’s easy to put in but difficult to get out. My surgeon overlapped the two pieces in the center.

It wouldn’t be a surprise if your original surgeon had a different procedure used to place his Parietex mesh. If he is older it was probably an open surgery, with a small piece placed in two separate surgeries. There seems to be a thought process in the field that because the mesh is supposedly inert and FDA approved, you can put more in with no consequence. TEP allows the maximum amount to be implanted, I believe.

[Good intentions]

Choosing a mesh removal surgeon is certainly difficult. One thing to be aware of is that, just like there are “guidelines”, formal and informal, for mesh implantation, there are also guidelines for mesh removal. And, therefore, just like for mesh implantation, you can’t just trust any surgeon who uses the guidelines. In a way, you are starting over, essentially in the same spot you were when you had the hernia, but with fewer choices, and much less real-world information to use to make a choice.

That’s one reason to choose a surgeon who has removed a lot of mesh. They should know what works and what doesn’t. They should have their own guidelines from real-world experience.

It seems like your big decisions are when to have it done, if you decide it needs to be done, and how to pay for it. I waited a full year after I knew mine needed to come out and I think that the tissue around the mesh was getting thicker and stiffer during that time. I had a situation where I had to do a lot of hard physical work, getting a home ready for sale. So, I think that sooner is better, once you make the decision. As a student, I would guess that your summer might be free. You should be back to reasonable functionality within a couple of months. After that, if you are like me, you’ll have a long slow period of constant adjustment. Probably a few weeks or months along the way where you wonder if you’ll ever get better. But, again, if you’re like me, the great positive will be that you’ll be getting better instead of worse.

That was my decision point, in choosing to have the mesh removed. I knew that I was very slowly getting weaker and less healthy, and that there was no way I could fight it. I couldn’t be smarter or tougher or work harder, in order to live with the mesh.

Finally, seriously consider spending the money to travel to the surgeon of your choice. Take out a student loan. You’re only 26 so you have many many more years ahead of you than I do. If you get a bad mesh removal your ability to make money will be severely reduced, as you probably know, because your ability to think and concentrate will be damaged. Any debt you incur now will be an investment in future earning potential. Don’t let money be the decider. Invest in your future.

Good luck.

[Arkj93]

Hi mitchtom,

Thanks for your reply. How long ago did you have your surgery? I also agree that Dr. Belyansky is one of the best, and if I lived closer to Maryland I would definitely see him. Unfortunately for me it is more of a logistical and financial challenge to see him especially since he is out of network. I have seen some of his videos of mesh removal on Youtube and he always appears to get the mesh out as carefully as possible. I have also read a lot of good things about his knowledge as a surgeon and his bedside manor. Truthfully he would be my top choice if money was no object. My primary doctor has recommended me a surgeon in my area named Dr. Lucas Beffa who specializes in robotic surgery. I am a little nervous though that he has enough mesh removal experience (he is young). I think picking a doctor to perform mesh removal is one of the trickiest decisions. I have also read good things about Dr. Earle in MA.

One thing that never ceases to amaze me is how much I identify with other mesh complication patients in the things that they describe. I too get spasms in my lower abdomen muscles and at the top of my thigh although they are less frequent. Sometimes I take magnesium and it seems to help a little bit. The worst thing for me is probably the burning/stinging pain that sometimes travels down my leg and to my hip bone and also the feeling of friction and the mesh poking into me that won’t go away. To the best of my knowledge, I was also progressing normally until about 3 or 4 months out from my initial surgery. The only “event” around then that I can remember is that I was helping out my parents plant a couple of bushes in their yard. Now I am just trying to be patient as I wait to have the consultation with the surgeon.

I wish you luck on your journey to recovery as well.

AJ

[mitchtom6]

AJ,

Thanks for posting. You already seem quite knowledgable about hernia repairs. I’m sorry about the difficulty you are going through.

Some of the other posters have shared their mesh recovery stories in the past. I would be interested in seeing some updates from them. Based on their testimonials, I am going to consult with Dr. Belyansky in Annapolis, MD for my issue – whether it is a recurrence or a mesh complication is to be determined, but he is skilled in mesh removal in case it comes to that. It seems, from others’ stories on this forum, that he is the go-to doctor on the East Coast for mesh removal.

As for me, I have been having serious trouble in my lower ab/groin region ever since Dec/Jan, when I crossed my legs and felt a tearing sensation. Now, I get spasms daily, accompanied by burning pain, or sometimes sharp, stabbing pain when I reach for objects or lift things. The spasms/twitching is, perhaps, the worst part. It has been going on daily for months. Prior to the tear, all was fine and I was happy as could be.

Best of luck on your search for answers, and I wish you a full recovery.