[Momof4]

@alephy, @brunog I went for a second mesh because I have a collagen disorder that contributes to my recurrent hernias. I have had failed tissue repairs in the past. The original thought was that I was having an “allergic” reaction vs foreign body reaction, thus the implantation of a different material. It seemed like the best option at the time and the decision was not made lightly. Well, turns out I have foreign body reaction and not only an allergy. I was allergy tested with different mesh and suture materials. I had a reaction to polypropelene but not to polyester. My allergist said just because you don’t react on the skin doesn’t mean you won’t react to implant. Turns out he was right. He said he certainly wouldn’t suggest implanting a material that you reacted to on the skin. @drtowfigh acknowledges these allergy skin tests have limitations.

@drbrown thank you for your participation on HerniaTalk Live and for answering my questions! If I end up with another mesh removal, is there a chance for successful tissue repair and which is the best tissue repair for someone with recurrent hernias and possible collagen disorder? Would there be extra restrictions after tissue repair for someone like me? Thank you!

[Momof4]

Julian, so sorry to hear of your continued suffering. I hope you find answers. Don’t give up! #ItsNotJustAHernia it’s our lives! I pray that you find strength as you continue searching for answers.

[Momof4]

@drtowfigh and @drbrown Thank you so much for the very informative HerniaTalk Live session tonight! I truly appreciate your time and expert opinions. Your passion for all things Hernia shows and we, the patients, are grateful. Stay safe and well. God bless you!

[Momof4]

Alephy, I sent you a message answering your question!

[Momof4]

I had a very large piece of polypropelene mesh removed and the systemic symptoms I was having resolved almost immediately! The rashes and itching were gone, no more nausea and loss of appetite, weird bruises gone. I did develop a reaction to adhesives with the implantation of the mesh and that still remains. Unfortunately, within 6 months of my mesh removal, I developed multiple new hernias that needed repair. With implantation of a different material, polyester vs polypropelene, some of the old systemic problems returned and I even developed some new ones! This time includes joint pain and swelling in hands and feet. I have tested negative for a specific autoimmune disease but a rheumatologist suggested foreign body reaction was causing my “autoimmune” type symptoms. I hope you can find the help you need. It’s not easy to find someone who Acknowledges or even understands these reactions! A big shout out to Dr. Towfigh for understanding AND acknowledging that these problems exist. Also, for helping to educate others. Thanks!

[Momof4]

Thanks for always looking for ways to help patients with hernias and/or mesh problems. As you know, We can use all the help we can get! I would love to contribute if appropriate. Stay well!

[Momof4]

I was tested twice, once while implanted with polypropelene mesh and once 6 months after removal, looking for a way to repair multiple recurrent hernias. The first time I had severe skin reactions to polypropelene and hybrid with some polypropelene. The second time, with a different allergist and with no mesh implanted, I didn’t react to the polypropelene and slight reaction to hybrid. The doctor said that it wasn’t a good test to see how I would react to something being implanted, but he said he Certainly wouldn’t recommend implanting something that I had a skin reaction to. He also said they just because I didn’t react on the skin didn’t mean I wouldn’t react once implanted. He was right! I have polyester mesh and am having systemic reactions and don’t know if it’s allergy related or autoimmune FBR. I wish there was a way to tell if/how you would react to an implant. Since having mesh implants I react to adhesives on my skin and I never had that problem before. Ugh!!

[Momof4]

Just wanted to chime in since I’m one of the 10-15% (I think that number may truly be higher). I guess the reason that number seems so large to those of us suffering is because when there is a complication it is a life changing, a lot of times debilitating, complication. I’m hoping moving forward there are things that can be done to make that number as small as possible because I hate for anyone to go through Mesh hell! Doctors like Dr. Towfigh and a few colleagues are working to reduce the number of complications and mesh reactions that aren’t as rare as once thought!

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Alephy,
The statement on the UK site is false! While surgeon technique and skill definitely contribute to success it certainly isn’t the only factor when mesh causes problems or fails. I know Dr. Towfigh has said the percentage is small, but some people react to the mesh itself. You can have an allergic reaction or foreign body response (which may be dose dependent). I have had lots of problems with 2 different types of mesh and my surgeries were with top hernia specialists so I’m fairly sure it wasn’t the surgeon. Seems we are finding out that mesh is not inert and does not always behave as predicted. Wish I had known this before I was implanted by a local surgeon, a surgery that was considered “no big deal” was the start of a long nightmare for me. I’m still working with doctors to find a solution that will get me back to “normal”, whatever that is! Haha

[Momof4]

@lkdivers,
Since you are only three months out, hopefully this pain will resolve. I don’t think any long term pain from hernia repairs should be part of the deal or the new normal. Keep seeking advice and help. I’m hopeful there is a cure! Best wishes

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@alephy
I have had several occult and small hernias that have caused severe pain. I believe Dr. Towfigh has suggested that sometimes the smaller ones are the most painful, especially in women.

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@cshelter
I have experience with several different types of nerve treatment. I’ve had a laparoscopic triple neurectomy which I don’t recommend. It has caused bulging in my lower abdomen. I originally inderatood the nerves to be purely sensory and they aren’t. Most any pain management physician can perform diagnostic nerve blocks in office with an added steroid that may provide longer term relief. That part never worked for me! I have had some luck with the diagnostic portion. As far as ablation goes, there is pulsed Radiofrequency ablation (not too invasive) which I believe pain management offers, as well. I recently had an MRI guided cryoablation treatment, which is performed under general anesthesia (kind of a big procedure) at Johns Hopkins. The MRI allows for a very precise targeted treatment. I had to have successful diagnostic blocks before cryoablation was considered. There has been good success with these treatments, probably some nerves better than others. Unfortunately, for me and my problem, the diagnoatics worked but the ablation treatment didn’t. We tried twice. Only thing left after block failure is neurectomy, which as Dr. Brown says is a major operation. This should be last resort and carefully considered. Hope this helps a little. Feel free to message me if you have any questions. Best wishes!

[Momof4]

[USER=”935″]drtowfigh[/USER] my post was unapproved. Guess HerniaTalk didn’t like my suggestions for the new and improved version! Haha

[Momof4]

First things first, Thank You for this valuable resource and your willingness to continue improving it for Us, the patients. One thing that may help when searching for a particular topic is to have a way to organize posts into categories. So, a way to organize the posts like we do email: alphabet, most recent …. but also organize according to topic with a way to post under specific category headers i.e. Hernia Surgery- subsets for each type of repair and each type of hernia, Mesh Removal, Chronic Pain, Recovery, Success Stories, just to name a few (maybe there is already a way to do this and I’m not tech savvy enough) haha. Also, under some categories, documents containing information about that topic. Perhaps, printable resources like at a doctors’ office. These documents could be helpful when trying to explain our situation to a new doctor. I have found this to be very upsetting and difficult to do and have often said “I know this sounds crazy and I’m not sure I would believe it if it hadn’t happened to me”! These are my thoughts for now and I will continue to think if there are any other ways to make HerniaTalk more useful. Once again, thank you for giving of your time and the support this forum provides. Blessings for 2020!

[Momof4]

Katherine,
When I saw the title of your post it piqued my interest. Funny to see that [USER=”2029″]Good intentions[/USER] mentioned me when referring to posts about collagen. I have never been formally diagnosed with a named collagen disorder such as Elhers Danlos, but I have many symptoms pointing to a disorder like that. It has definitely made my hernia journey more difficult. I have had failed tissue repairs and recurrent hernias. I have also reacted to mesh implants so tissue repair would be best since I have had severe foreign body reactions. So far, tissue repairs and mesh repairs have been suboptimal! It took a while for anyone to suspect a collagen disorder, but it certainly makes sense considering all of my hernia troubles. Wish I had better news to offer but having a collagen disorder certainly complicates things. Feel free to message me if you have specific questions. I hope you find this forum helpful. We are so fortunate to have @Dr.Towfigh and colleagues to answer questions. Best wishes!
momof4

[Momof4]

Totally agree that Dr. Belyansky is courteous, empathetic and professional. He definitely takes his time and really listens. He is deemed one of the best by his patients and colleagues alike. You are in good hands! Like others have stated, recovery will be slow so please rest and give your body time to heal. Your future depends on it! Best wishes

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fincarp,
Look at the topic titled “How to instruct the radiologist to look for occult hernia in the MRI” on page 5. Dr. Towfigh provides the Dynamic MRI protocol she uses. There are other posts about imaging if you search this forum. I certainly know how difficult it it can be when imaging is misread. We know how our body feels! The right doctor will listen and help you find the solution. Hope this helps.

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The following was posted by [USER=”935″]drtowfigh[/USER] under the topic of long term efficacy of triple neurectomy:

“The nerves have motor function the closer they are to the spine. More distally, they become mostly sensory, so cutting them in the front (anterior, open) has less abdominal weakness issues.

The sexual dysfunction described by some is not directly related to the neurectomy. It’s often related to chronic pain and use of opioids.”

Perhaps reading through some of the topics addressing triple neurectomy will help. There has been quite a bit of discussion about triple neurectomy. I was told, before having a laparoscopic triple neurectomy, that there was no motor function to those nerves. I think as time went on there was definitely new evidence and thinking about the effects on the nerves if the neurectomy was performed close to the spine vs in the groin. I have bulging and weakness in my lower abdomen from his procedure. I’m sorry to hear about your complications. I can certainly understand your frustration.

[Momof4]

Wishing you the best. Never give up!

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Thanks for caring and sharing, Dr. Towfigh. I wasn’t sure if the protocol was something I could share or not. I recommended that wth call your office to enquire about the protocol. I should have known you would share. You have the patient’s best interest in mind, even if it isn’t your patient.