Hernias and Connective Tissue disease? A question for the doctors

[Katherine]

Thank you, Dr. Towfigh – I’ve tried over and over again to write a response back to you, but it keeps getting unapproved.

[Katherine]

Hi Dr. Towfigh, I’ve tried posting several times but for some reason the posts are unapproved. I hope this one goes through. Thank you for your thorough response!!! I do know now that TC’s are a form of connective tissue disease – I should not have had the surgery. Back in 2012, less was know about the disease than now. It is my biggest regret and I do not want to make another mistake with hernia surgery and have chronic pain in another area. I could not take it. I also know now that Ehlers Danlos takes many forms and I think the doctor I went to just looked at how far back my fingers/elbows/knees bent and came to the conclusion that I do not have it – so I still do not know. However, I do know that my connective tissue has worsened since I’ve gotten older. My unrepaired right hernia was fine since 1996 and now all of the sudden a simple core exercise made it worse. That tells me something is just not right with my body anymore. Perhaps its also the decline of hormones from old age. I had mentioned I had a reabsorbable plate used in my spinal surgery for the sacral laminectomy. I believe it is why I am still in pain and developed adhesive arachnoiditis. So, I would be very, very cautious with any type of mesh at all. But, I would not want a tissue based repair to fail, either. Sometimes I think it’s best left alone – it does bother me some, but I know the risk of strangulation is small. Since I have seen many physicians in Houston, none of them take all of these things into consideration. So, I know if I am to receive good care, I will have to travel to see the very best like you or Dr. Brown or others that are mentioned on this forum. I so appreciate your valuable input. This forum is amazing. Now, I hope that this posts and doesn’t get unapproved!!!!

[Katherine]

Hi Dr. Towfigh, I’ve tried posting several times but for some reason the posts are unapproved. I hope this one goes through. Thank you for your thorough response!!! I do know now that TC’s are a form of connective tissue disease – I should not have had the surgery. Back in 2012, less was know about the disease than now. It is my biggest regret and I do not want to make another mistake with hernia surgery and have chronic pain in another area. I could not take it. I also know now that Ehlers Danlos takes many forms and I think the doctor I went to just looked at how far back my fingers/elbows/knees bent and came to the conclusion that I do not have it – so I still do not know. However, I do know that my connective tissue has worsened since I’ve gotten older. My unrepaired right hernia was fine since 1996 and now all of the sudden a simple core exercise made it worse. That tells me something is just not right with my body anymore. Perhaps its also the decline of hormones from old age. I had mentioned I had a reabsorbable plate used in my spinal surgery for the sacral laminectomy. I believe it is why I am still in pain and developed adhesive arachnoiditis. So, I would be very, very cautious with any type of mesh at all. But, I would not want a tissue based repair to fail, either. Sometimes I think it’s best left alone – it does bother me some, but I know the risk of strangulation is small. Since I have seen many physicians in Houston, none of them take all of these things into consideration. So, I know if I am to receive good care, I will have to travel to see the very best like you or Dr. Brown or others that are mentioned on this forum. I so appreciate your valuable input. This forum is amazing. Now, I hope that this posts and doesn’t get unapproved!!!!

[Katherine]

Hi Dr. Towfigh, I’ve tried posting several times but for some reason the posts are unapproved. I hope this one goes through. Thank you for your thorough response!!! I do know now that TC’s are a form of connective tissue disease – I should not have had the surgery. Back in 2012, less was know about the disease than now. It is my biggest regret and I do not want to make another mistake with hernia surgery and have chronic pain in another area. I could not take it. I also know now that Ehlers Danlos takes many forms and I think the doctor I went to just looked at how far back my fingers/elbows/knees bent and came to the conclusion that I do not have it – so I still do not know. However, I do know that my connective tissue has worsened since I’ve gotten older. My unrepaired right hernia was fine since 1996 and now all of the sudden a simple core exercise made it worse. That tells me something is just not right with my body anymore. Perhaps its also the decline of hormones from old age. I had mentioned I had a reabsorbable plate used in my spinal surgery for the sacral laminectomy. I believe it is why I am still in pain and developed adhesive arachnoiditis. So, I would be very, very cautious with any type of mesh at all. But, I would not want a tissue based repair to fail, either. Sometimes I think it’s best left alone – it does bother me some, but I know the risk of strangulation is small. Since I have seen many physicians in Houston, none of them take all of these things into consideration. So, I know if I am to receive good care, I will have to travel to see the very best like you or Dr. Brown or others that are mentioned on this forum. I so appreciate your valuable input. This forum is amazing. Now, I hope that this posts and doesn’t get unapproved!!!!

[Katherine]

So three responses not approved. Why!!!!

[Katherine]

Why are all my responses to Dr. Towfigh not being approved???????

[Katherine]

Dear Dr. Towfigh, I tried writing a response to you and it was not approved! Hoping the moderator can approve it!

[Katherine]

Dear D. Towfigh, thank you so much for your very thorough response! Have you ever done hernia surgery on a Tarlov cyst patient? I do know this disease is some type of connective tissue disease. I have no idea why the surgeon used a dissolvable plate in my laminectomy not approved for the spine! The result has been adhesive arachnoiditis from the continued inflammation. So any foreign body reaction scares me. I guess I was just lucky with my first hernia surgery (non mesh) back in 1994. Or perhaps age has just exacerbated the weakened collagen. One doctor I went to said I do not have EDS, but since then I’ve learned there are very many types of the disease. I’ve also had a lot of strange autoimmune things pop up since my surgery- RA type pain in the hands, lichen plants in the mouth. Several experts I have seen connect this with the dissolvable plate used in my surgery. They said even though it’s dissolved, I still could be reacting to it. So I guess this is why I really want a non mesh repair. I could not possibly endure any more chronic pain in another area. Surviving the surgery with the back pain is another huge concern. I do hope that in the future there are more brilliant physicians like you and Dr. Brown that have an understanding of this complex situation. You are so right… “it’s not just a hernia” !!!

[Katherine]

Jonsaunt, I’m so sorry about your situation. It makes life kore difficult! Thanks for your input! (If this posts twice for some reason my first comment was unapproved)

[Katherine]

Jonsaunt, I’m so sorry about your medical situation. It really makes life so difficult. I appreciate your input!

[drtowfigh]

First, as I always say, it’s not JUST a hernia.

– Tarlov cyst disease is among a spectrum of connective tissue disorders. Theoretically, you are more prone to hernias. There just aren’t studies to quantify that risk. Theoretically, also, tissue repair is suboptimal, as your tissues are already more abnormally deficient than the average patient. In situations like yours, a mesh-based repair is indicated.

– Ehlers Danlos is a completely different animal. It is one of the most extreme connective tissue disorders. In those patients, I not only do a robotic mesh-based repair, I add a plication of the muscles in addition, as the laxity is severe and patching the hernia defect alone is inadequate to address the laxity symptoms.

– Moxed connective tissue disorder is different than the above in that it is an autoimmune disorder. In patients with autoimmune disorder I do not use pure synthetic mesh. Depending on the situation, I use either tissue based repair or Tela Bio Ovitex hybrid mesh which is only 4% synthetic. As a result, it does not inflict the inflammatory risk that can disrupt a well controlled autoimmune situation.

in short, if you have an autoimmune or inflammatory disease or a connective tissue disorder, please get the advice of a specialist that sees rare patients like you and has the experience to handle your situation. These are things that aren’t taught in medical school or residency. I’ve written some books and chapters about these issues and I give talks and I can just hope that that information trickles down to other surgeons over time.

[jonsaunt]

I have Ehler’s Danlos and problems with hernia’s almost all of my life, including a rare internal hernia which caused a small bowel obstruction. I have no doubt faulty connective tissue has much to do with my never ending recurring hernias and severe reactions to mesh. Definitely a tricky situation.

[Katherine]

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

[DrBrown]

[USER=”2766″]Katherine[/USER]
You are in a very difficult situation when both conservative options and surgical options are limited by your other medical problems.
Regards.
Bill Brown MD

[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.

[DrBrown]

[USER=”2766″]Katherine[/USER]
You can try a hernia belt to support your abdomen. That may provide you some relief.
Regards.
Bill Brown MD

[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!

[DrBrown]

[USER=”2766″]Katherine[/USER]
Patients with connective tissue diseases can have a hernia repair without mesh.
I hope that you are feeling better.
Regards.
Bill Brown MD

[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

[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.