[Katherine]

Dear Dr. Brown, this is so true!!!! Thank you so much for your compassion and understanding.

[Katherine]

Thank you, Dr. Brown for your response regarding non mesh repair for patients with connective tissue disease. Unfortunately, I find it difficult to wear the hernia belts; my spinal condition doesn’t like any compression in the sacral or lumbar areas or any areas innervated by the S2 and S3 nerve roots.

[Katherine]

Good morning, Good intentions and momof4 and Dr. Brown! Thank you both so much for your info! Momof4 – I’m so sorry you have had such a difficult journey with your hernia journey. It’s amazing to me that when I mention I have a hernia that people are just so complacent about it – “oh any doctor can do that operation, they learn that first year, etc.”! Little do they know the horrors patients can go through with this surgery. I was able to download the PDF this morning and plan to look at it much more carefully – I glanced through it last night. I have corresponded with Dr. Brown on several occasions and have so much confidence in him – but not much confidence in my body. I go from just thinking the best thing is to just leave it alone to thinking I’d better take care of it before I get any older or Dr. Brown retires! I am seeing now the impossibility of finding doctors who do a non-mesh repair as I have seen six here locally in Texas. Sure, some of them can do it – but they don’t do it in their practice so they are not as familiar with the different methods. Also, I’ve yet to find one that does not want to cut either all or some of the nerves! As I mentioned, I have a very rare condition called Tarlov Cyst disease which they think is a connective tissue disorder. It causes weakening in the dura layer of the spinal cord and causes CSF fluid to go through this weakening and form spinal nerve root cysts. Surgery only made me worse and I also ended up with adhesive arachnoiditis. So, very painful back conditions. My husband says I most likely couldn’t even survive the pain of the flight to CA, much less the double pain of the post hernia surgery and the back pain coming back (I’m in Texas). Momof4 – I haven’t been officially DX with EDS either, but from what I understand there are so many different types of it. But I’ve had the weird stuff in my life like hernias, lumps, stretch marks, etc. that point to less than optimal collagen. I had my first hernia surgery (non mesh) in 1994, that went great. In 1996, I developed my second hernia (on opposite side from the repaired one), but elected not to have it repaired. It was barely noticeable until late last year when I was going through PT and the PT had me do some fairly aggressive core exercises. That made it bulge much worse. It bothers me some (kind of a heavy, slightly painful feeling at times), but I’m also on my feet most of the day because lying on my back and sitting cause my back much more pain. So gravity is not my hernia’s friend. What is interesting is that from 1996 (when my unrepaired hernia first appeared) until about 2010, I was a weight lifter, runner, etc. and it never, ever made that hernia worse. Now all of the sudden, with just some stupid core exercises, it gets worse. That is what makes me concerned about the connection between age and the weakening collagen. So my fear is that this will not be as successful as my first repair when I was young and healthy. Also, during my back surgery, reabsorbable mesh was used to close the sacral laminectomy. I have had an autoimmune inflammatory response to that foreign material – so I will not do a mesh repair. I really want to get back into some light exercising for my back/core, but the hernia is holding me back for fear of making it worse. Sorry for the long response, but I’m so worried about what to do and definitely don’t need this on top of the other chronic pain conditions I already have! Momof4 – would love to message you – I’ll have to figure out how – lol. Thanks again to you both for your responses!

[Katherine]

Thank you, Good intentions! I‘ll write more tomorrow, totally pooped and in pain tonight. I know I should go ahead and get this hernia taken care of, but my body is so” abnormal” just don’t know if I should. But I’d love to have your thoughts as an experienced person on this forum. I can’t find a doctor locally (I’ve seen six), and would no doubt go with Dr. Brown if I proceeded.

[Katherine]

Dear Dr. Brown, thank you so much for your response and the link. Unfortunately, I’m not able to access the link. Is it still possible to do a non-mesh open repair on someone with weak connective tissue?

[Katherine]

Thank you! I appreciate your links and I will take a look!

[Katherine]

I hope I’m allowed to do this! Bumping this post so hopefully will get some replies. I have a mixed connective tissue disease and am concerned the laxity in my connective tissue will make an open, no mesh repair not successful. I’m also older (60), and connective tissue gets weaker as one gets older anyway. Any thoughts?

[Katherine]

Bless you, Dr. Brown and your lovely, amazing daughter. You are so right, there is nothing more rewarding than giving of yourself to those in need. Thank you for being not only an amazing surgeon, but truly an admirable person with a huge heart. Thanks for sharing your journey with us.

[Katherine]

I have had an autoimmune reaction to reabsorbable mesh used during spinal surgery. My immune system bloodwork is abnormal and doctors I have seen attribute it to a continual inflammatory response.

[Katherine]

I am so grateful for older surgeons and older physicians in other specialties, too. I honestly believe so many still practice because they thoroughly enjoy what they are doing and have great love for their patients. It is not easy being a physician in today’s climate of practicing medicine with insurance companies and government policies attempting to influence the care a doctor gives to their patients. I also believe that older surgeons have the blessed knowledge of combining older tried and true methods with modern advances – best of both worlds. Thank you so much, Dr. Brown for joining this invaluable forum and being one of the greatest hernia surgeons in the world!

[Katherine]

I had a very rare surgery for a condition called Tarlov Cysts. A sacral laminectomy was performed and a reabsorbable mesh/plate was used to close the laminectomy. This was in 2012 and although the mesh has “dissolved”, I continue to have a foreign body reaction. Many I know who have had this surgery with this reabsorbale plate have also had continued issues. I think some people just can’t tolerate foreign materials in them. Wish there was some way to test for this prior to surgery.

[Katherine]

Thank you so very much for your response, Dr. Brown! I am so pleased you have joined the forum!!!

[Katherine]

Awesome news! We need as many knowledgeable physicians as possible to help us! Many years ago (1994) when I had my first hernia repair, I truly thought of it as “minor” surgery. I was fortunate and had an older physician very familiar with non-mesh repairs that did my surgery and it was flawless. I have done well with until recently until I stupidly did some exercises. But we need as much knowledge as we can get from these brilliant minds!

[Katherine]

Thank you so much, Dr. Towfigh for your very helpful suggestions. I didn’t like the idea of cutting of the nerves if they could be preserved. I had a few follow up questions if you can assist:

1. Is it possible to have a re-occurrence without a lump? I have heard both standing ultrasound with valsalva or pelvic MRI is the right way to diagnosis this. Which do you utilize in your practice?
2. The physician that suggested the PHS mesh uses the ultrathin mesh in his repairs – although he said he would do a tissue repair if at all possible (he was referring only to the right side that has not been repaired) He said the ultrathin PHS works best on very small individuals (I’m 5 feet tall, around 93 pounds)
3. What is the best way to repair a tear in a previously repaired hernia? Laproscopically or open? If open used, is mesh necessary?

Given my health issues, travel would be difficult; however, not impossible. The main reason I cannot travel is my insurance plan is a regional PPO. I’m trying to research further if it is possible out of medical necessity to see a physician out of state. Of course, that would only be an option if the physician would work with the insurance company.

Thank you again so much for your expertise. I’m so glad I found this site and am not hurrying into this like I did my failed spinal nerve surgery.

[Katherine]

quote Chaunce1234:

You might try reaching out to:

– Dr. John Etlinger in San Antonio Texas, he has been reported to perform non-mesh repairs on select patients.

It’s also possible that he knows colleagues who are able to perform the same procedures.

Finding a non-mesh hernia repair specialist is becoming increasingly difficult and often requires travel or even going out of state, so if you find another surgeon please do share the details.

Good luck and keep us updated on your case and progress.

Thank you! I will look up Dr. Etlinger and see if he knows anyone in Houston he can recommend. I remember looking him up the other day and looking at online reviews – seems pretty positive; however, I didn’t see a review in regards to hernia repair.

I guess I was lucky back in 1994. I did go to several surgeons at that time and chose the one who told me he doesn’t do mesh on women because of their anatomy. It has been a great repair, until lately it has started hurting (after the exercises). I don’t see a lump, but the scar and around it is painful. Hope it’s not damaged. I don’t think I could handle two repairs. Not even sure I’ll get one with my other health issues.

I do have several consults lined up. Unfortunately so many of them have “laproscopic hernia repair” on their website. I don’t believe a non-mesh laproscopic repair is possible, is it? Anyway, I’ve heard back things about laproscopic and robotic surgery. Just saw a news report last night on all the issues with the DaVinci robotic device – actually burning people on the inside!!! Scary.

If I do find a good doctor, I will report back – it may help someone else that is in my boat – can’t travel and broke! I would love to see Dr. Brown in California – I did a search and found some good things about him. I still may e-mail him after my consult here – maybe he knows someone in Houston.

[Katherine]

quote Good intentions:

I can’t speak to the details of your problems but two things do come to mind.

One is that if you are unemployed you’re probably paying for your own insurance. If so, you might find that your insurance provider will only reimburse for work done by “in-network” care providers. This is a very recent development, for 2019, that seems to be almost industry-wide for individuals paying for their own insurance. This might narrow your choices if you want insurance to pay for any procedures, since 2019 is just days away. Check your coverage. One the other hand, you might find that paying full price outside of your insurance network is actually less expensive, after calculating for deductibles and the percentage that you’ll pay.

The second is on finding somebody who will do a non-mesh repair, let alone consider doing one. Mesh repairs are rapidly becoming the “standard of care”, I believe because it simplifies the whole healthcare process. Healthcare is trending towards more of a triage type system, designed to get large volumes of people in and out and as quickly as possible, and to use the cheapest methods, because controlling costs is so important. Healthcare is not really for the patient anymore, so much as it is a business for taxpayers and shareholders. It is highly likely that you will find many surgeons willing to “try” a mesh repair on you, even though the result of a mesh reaction for you would probably be a disaster.

This might sound discouraging but I think that it is true. Don’t be persuaded to do what you know won’t be right for you.

On your bulge, I think that hernias get larger because more material is pressing through the defect, and also because the defect gets larger. You will want to avoid letting the defect get too large because that is one of the original reasons to use mesh. It can cover a large area, making a difficult job easy.

Since you were and might still be very athletic, consider consulting with physicians who treat professional athletes. They will be the ones most likely to know who does non-mesh repairs, since most athletes avoid mesh. Contact the trainers at teams like the Dynamo, Astros, Texans, or Rockets. You never know, somebody might have advice.

Good luck.

Thanks for your response. I am actually on disability, so I have Medicare which I know even further limits my options. I can’t afford to pay out of pocket. I am so familiar with the “triage” system of medicine. I have been to so many doctors that I could scream for my current condition. I am no longer athletic at all – my sacral nerves are permanently damaged and my lumbar spine at times feels like hot acid is flowing through it. I will not do a mesh repair after my experience with the other surgery.

I am wondering – what is considered large? It is large because it is a bulge that never goes down unless you lie down? But I’m also very thin (I’m only around 93 pounds – lack of exercise and pain has caused muscle wasting), so my hernia may stick out more than it would on others.

Very good suggestion on researching a physician that treats athletes. I have a friend who is a massage therapist for one of the major teams in Houston – I have reached out to her to see if she can find out anything for me.

[Katherine]

Thank you, I will try reposting!