08/16/2018 at 12:50 pm #11424
I am wondering if mesh has to always be used in a hernia repair( specifically for a hidden hernia in a woman)? I ask this because I am probably going to have to undergo exploratory gynecological laparoscopy soon due to the symptoms I have been having for over a year now( lower left pelvic pain which is stabbing, sharp and pulsating and radiates down my groin, upper front thigh, around my outer hip and through to my lower back). The pain started over a year ago and always seemed to arise after my period would end and near ovulation. It would last a few days and then go away. Well lately the pain is getting worse and lasting for a longer period of time. My gynecologist diagnosed me with Adenomyosis through a Plain MRI and she said I “might” also have Endometriosis but the only way to really diagnose this is through lap surgery since it cannot be seen on most scans. Well there is only a couple Endo specialists in the Chicagoland area who deal with Endo and know how to properly get rid of it( excise it out) and the one I am going to see is in Northwestern Memorial hospital here in Chicago. Here is the thing, I am going to need him to have a general surgeon attending the surgery to look for possible hidden hernias which could also be causing my symptoms. Will a general surgeon be able to spot any hidden hernia’s during an exploratory? Also, if there is one found, does it have to be repaired with Mesh? Here is the thing, I have lots of other health issues( Multiple chemical sensitivity, Loads of allergies, Mast cell issues which cause me to react to many and most medications and chemicals, IC, IBS, etc..). I do not feel comfortable with having any foreign stuff being in my body because of how my body reacts to stuff. I know that there are only a handful of hernia specialists out there and unfortunately it does not seem like there are any here in Chicago. Also the conundrum I am in is that I need to find a hernia surgeon who is affiliated in the same hospital as the Endo specialist I am seeing so he/she can be in attendance during my lap surgery to look for any possible hidden hernias. Any ideas or suggestions? also is it possible to repair a hernia without the use of mesh? Can’t they just sew it up like they use to before mesh was invented?
08/16/2018 at 8:39 pm #16702Good intentionsParticipant
Hello Jen74. I know how difficult it is to stay focused and forge your own path when you have problems like this. But most of the bad stories on the forum are from people who stayed within their own local healthcare system and took the first referral and got the mainstream repair. The mainstream repair for hernia repair today is mesh. Large pieces implanted, to be very certain that there will not be a recurrence. That is the teaching and training that the majority of surgeons receive today, apparently.
So, when you ask your surgeon for a non-mesh repair, they will not know how to get it done. They won’t have the training. And they feel confident that their training in how to use mesh will do the job. Chronic pain avoidance is apparently not a subject in today’s medical schools and residency programs.
So, that leaves going outside of your local healthcare system, to find a specialist. I saw in your other post that you didn’t ask Dr. Towfigh’s office about a consultation. It might be worthwhile to go back and do that. I don’t know if there is a charge or not, but even a small cost could be a valuable investment.
Also, be aware that “exploratory” surgery is not just a look-see. It is real surgery, just with no repair performed. They might dissect a larger space during your excision surgery to get a better look at certain areas. The dissection alone is traumatic to the body. So any imaging work that could help you find a cause before surgery is worth pursuing first. And, there are stories of people having mesh implanted, just in case, even though no defect was found, during exploratory surgery. Neurectomies are performed, because they “might” help. If they don’t find anything they will want to do something, while they’re in there.
At the least, maybe you could ask Dr. Towfigh to consult with whichever general surgeon attends so that that surgeon will know what to look for. It would be a shame to wake up and hear that nothing was found and to have the same pain.
I’ve found that sometimes, when dealing with a front office, that you have to be very specific and direct them in what you are trying to achieve. The majority of their daily work is referrals through the “system”. People calling out of the blue are unusual. Sometimes a well-written letter directly to the doctor works better than a phone call. It will reach different people and will probably get directly to the doctor, unlike a phone call or email.
08/17/2018 at 2:13 am #16703quote Good intentions:
Thank you for the reply and advice. Yes, I have had scans done already ( MRI, CT) which did not find anything really except for the Adenomyosis of the uterus. Oh when I undergo the exploratory surgery, I would be having a hysterectomy at the same time due to the Adenomyosis. Also the surgeon will be looking for Endometriosis. Thank you for filling me in on the mesh and how some surgeons will put it in whether they see something or not. No way am I going to let that happen. Most doctor’s freak out when they see my list of allergies. I am not certain what Mesh is even made out of, but I am sensitive to most chemicals including polyethylene glycol which is a plastic. I am sure mesh is a form of plastic. I definitely am willing to have a phone consult with Dr. Towfigh. She sounds extremely knowledgeable when it comes to hernias. I am just not sure what she will be able to do for me since I am all the way over here in Chicago. It would be great if I could convince a surgeon over here to call her are consult with her, but you know how some doctor’s are, they have Huge ego’s and would not take kindly to that suggestion. So I am guessing most all surgeons use some form of mesh to repair hernias then correct? Honestly what did they do before mesh was invented? Anyhow, I am going to see if I can set up a phone consult with Dr. Towfigh just to see what she says. Thank you for the support and advice.
08/17/2018 at 5:26 pm #16704
Hi Jen. You can get a copy of your MRI and CT scans-not the report but the actual CD of each scan and you can send it to dr. Towfigh. She specializes in reading g these scans and looking for hidden hernias. She can review the scans and then do a online or phone consult. So she can help confirm or rule out certain things.
If you have allergies esleicjkmy to plastic and or other auto immune issues you should stay away from mesh.
yes they can repair hernias the old fashion way but you need to know and understand it is very hard to find these surgeons. You also need to most likely come to grips that to get the best quality care you (at least reagarding hernias) you we going to have to travel and probably pay some costs out of pocket but it is well worth it to have things done right. So paying dr. Towfigh to have a consult in which she will review your scans is a great investment. If it turns out you do have a hernia it will again be a great investment t to travel to the few surgeons that repair these hernias without the use of mesh-get it done right.
Also understand if your local surgeon found a hernia upon your laparoscopic exploration they will 100% use mesh to repair it and yes mesh is made out of plastic and the mesh used for laparoscopic repair is quite large often at least 5” by 7” the size of a salad plate!
as med tuned also understand that even with only laparoscopic exploration a incision is made abover the belly button where the camera is passed through and although the incision isn’t big you are still being cut open and this can lead to a incisional hernia down the line. So don’t take this exploration lightly.
also I have come across a good number of females who went on to have hernias as a result of hysterectomies.
it is always best if you can avoid surgery of any kind and try anything and everything you can to treat or manage the problem I’m other ways.
i would start by having dr. Towfigh see if there is a hernia or not by reviewing your scans.
if there is a hernia I would get it repaired without mesh given your sensitivity to plastic etc.
there is the Shouldice Hospital in Canada that specializes in pure tissue repairs. There are a few Sutton’s in the US including dr. Towfigh that can do a non mesh repair. Don’t rush into anything and be willing to travel and invest in getting the best outcome
08/17/2018 at 6:51 pm #16705quote Jnomesh:
Thank you again for the support and advice. Yes, I have an MRI scan I had done last October that I can ask Dr.Towfigh to look at and a recent CT scan as well. Oh believe me, I would not go through surgery without trying everything first. I have tried Many things already. I cannot take any Birth control pills at all ( way to many risks involved for me) so managing my Gyne issues( Adenomyosis) is Very difficult. Yes, you are correct, surgery does pose the risk of developing hernias. That is quite scary for sure. My plan is to start by getting an online or over phone consult with Dr. Towfigh and see if she can look over my MRI and CT scans and see what she ends up seeing. I am already financially strapped due to all my other health issues which I have invested So much money on and still do. I definitely would not mind traveling to see someone in the case that I do need hernia repair, but it would be a Huge undertaking in terms of cost. I would have to come up with traveling expense as well as paying for a hotel which is not even the worst part. The thing is, surgery costs thousands of $$$. My insurance will not pay 100% for out of network doctor’s( meaning doctor’s not located in Illinois). I would have to foot like 60% or more of the cost of a surgery which I am guessing is going to be extremely expensive if they charge anywhere near what the hospitals over here do. Put it this way, I had to have a simple procedure here a couple years ago and they charged over $18,000 for it! I can imagine that any type of surgery will cost way more than that. I guess I will have find out how much everything would be if I do end up needing to travel to see someone. I totally agree it is a great investment, but I have to be able to afford it too. As far as the mesh, So wow, why do they put such a large amount of that stuff inside a person to cover only a small hernia?? I do plan on looking around here in Chicago just to see if there is any surgeons who know how to repair hernia’s the old way without the mesh. There has to be. I know I found one surgeon who has been practicing for over 35 years so I might call their office and just ask if the surgeon does repair hernia’s without the use of mesh. They have to have some alternative for people who are allergic to that stuff right? Thanks again. I have a lot to think about and am going to proceed slowly and with caution..
08/17/2018 at 7:53 pm #16707
There is a dr. Steven Haggerty I believe in the Chicago area that people have spoken about. He may be worth investigating as I believe he has done non mesh repairs. There is also dr. Igor Belyanski in Annapolis MD. He removed my defected mesh and will do a non mesh repair upon request. He is a highly skilled Surgeon but I know that even though he will do a non mesh repair it isn’t the same as finding someone that that’s all they basically do. Ie shoikdice Hospital, dr. Tomas in Fl who only does a desarda non mesh repair etc. anyways one step at a time-first see what dr. Towfigh has to say and find out if you even have a hernia in the first place.
ps when I had my mesh removed I had to travel out of state and my out of network benefits ended up paying for everything which I couldn’t believe. The surgery only ended up being something like $1300 which as I mentioned was covered by out of network benefits (they use some crazy calculations to determine coverage amounts), anesthesiology was $2700 but my surgery was 3 1/2 hours so you can figure a 1/3 of that cost for a standard hernia repair length of time-again out of network covers this amount and of course Hospital was covered by which I think would be covered by any insurance-so you may be surprised. The hardest part was talking to my insurance company and getting the codes and dealing with the whole process-to try and get a idea of how much would be covered
best of luck
08/17/2018 at 11:44 pm #16710quote Jnomesh:
Thank you for the suggestions and support, I appreciate it very much.
08/18/2018 at 5:24 pm #16714drtowfighKeymaster
1. Adenomyosis typically does not require attention unless it’s associated with pain and heavy bleeding.
2. Imaging would show most hidden hernias. Just because the report says no Hernia doesn’t mean there isn’t a hernia. If your symptoms suggest hernia, a negative imaging study should be re read.
3. Exploratory laparoscopy alone will not necessarily show all hernias. Hidden hernias require that your general surgeon take down the peritoneum and preperitoneal fat and inspect the muscle itself for a defect.
4. You can ask that your surgeon not perform a mesh repair at the time of laparoscopy and either just take some pictures and have you go to a surgeon later who can do tissue repair or convert to an open tissue repair of your inguinal hernia at the same time as your laparoscopy.
06/07/2019 at 1:10 pm #18875NoMorePainMember
Hi! I’m new to this page. I had a mesh patch placed in ab in 2011 in Texas. It was to cover an umbilical hernia that happened after natural birth. Since then I feel pain when I eat till I’m full. I feel itching and I do scratch the area and noticed my skin is slightly red. During pelvic exams, when doctor presses area it hurts.
A pelvic exam with contrast showed a small amount of fat escaping from the side of the repair/patch. Medical team suggests thats the cause of my discomfort. They also advise another patch placement for that.
Since this was my first major surgery and only medical device inserted, I’m seeking clarification and insight from others in a similar situation. I am seeking medical advise but want an idea of how insistent I should be about treatment.
06/07/2019 at 5:45 pm #18876Good intentionsParticipantquote NoMorePain:
The general term for the “fat escaping” would be recurrence. You’ve had a recurrence of your original hernia, a failure of the original repair. You should seek out a hernia expert, since the “standard of care” in 2011 did not work for you. You don’t want to get in to a cycle of repair and failure.
06/07/2019 at 8:10 pm #18878
I will say that until I had my mesh removed I had for the prior 5 years had 2 or 3 MRI’s due to pain and discomfort .my mesh was for inguinal hernia not umbilical. The MRI’s repeatedly showed no hernia recurrence but all reports noted that there was fat protruding laterally out of the mesh so not near the inguinal canal.
Finally the pain increased to the point where I sought out hernia specialists who were also mesh removal specialists.
When I sent a cat scan to dr. Belyankski (who ended up removing g my mesh) he noted that my mesh has shifted and he thought he saw a snail hernia recurrence.
When he got in there to remove the mesh the e mesh was folded up into a rock hard ball-there were no hernias present and when I asked him what was it that he though was the hernia recurrence he said it was the mesh pressed up against the colon.
So I don’t know what to make out if that dinosaur fat found in my mesh like yours but I’m gonna gather it’s not a good thing and if it doesn’t signal a recurrence then it may well signal a problem with the mesh (folded or shifted thus allowing fat to seep around it)
My advice to you is to seek out a surgeon who is not only a hernia specialist but a specialist in removal. This way you are covered for whatever the surgeon may encounter.
What normally happens is that surgeons will enter the abdomen the opposite way the mesh was implanted and slap another mesh in there without when exploring the original mesh.
When dr. Belyankski saw on my cat scan that my mesh was folded his first response was that the mesh needed to he removed because a faulty mesh shouldn’t stay in the body especially when someone is complaining of pain-you wont hear many surgeons say this-there first course of action just seem to slap more mesh in there .
But being someone who thinks quite logically this made perfect sense especially bc I was also feeling mesh pain-a brick like feeling in my stomach.
So that’s my advice. Something isn’t right and most times the original surgeon isn’t the answer.
Also get a copy of your operative report. See what type of mesh was used and research it and see if anything remarkable was found during your surgery
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