Momof4
Forum Replies Created
-
Sorry to hear of your situation and the stress it is causing you! Your physician should have discussed the benefits AND risks of mesh with you so you could make a fully informed decision. Luckily, there are way more people that do well with mesh repairs than ones that have problems. You may very well do fine with your repair. The advice to let yourself heal for 6 months sounds like good advice. I think a doctor on this forum recently posted about the length of time not having an impact on removal, if necessary. Waiting 6 months will not be too late for removal. Also, maybe in that time you will heal completely and feel great. That is the hope. This forum is very informative and helpful, but most posts here are about problems and looking for help to find a resolution. I am a patient that has had problems with mesh and removal and don’t wish that on anyone. I would not have the mesh removed if there are no problems and you feel good. Removal itself can cause more problems. Best wishes and positive thoughts!
-
Fidel18,
I hope that you can get the type of repair that you want and it will be covered! There are certain people that may not do well with mesh and have a higher chance of reaction or chronic pain – people with allergies, autoimmune disease, very thin. These are the few I can think of. There may be other reasons and hopefully someone will chime in and help out. Are you seeking a non-mesh repair out of fear of chronic pain? I don’t blame you, that’s a great reason, as far as I’m concerned. Guess insurance company doesn’t think so.
Best wishes! -
Lisa A, I thought I’d weigh in since I have had some similar experiences. Firstly, if your doctor said he can rule out hernias entirely because there is no visible bulge then you need to see another doctor! That statement is false. I have had several hernias with no bulge. Also, when my pain first started I was told that maybe I had endometriosis at the age of 47 and after having 4 kids. Ridiculous! Of course, I didn’t have endometriosis. A lot of the symptoms you describe are symptoms of a hernia. You need to see a hernia expert to help with diagnosis. I know Dr. Sean Orenstein is in Portland Oregon and his name has been mentioned on this forum before. He may even be a contributing surgeon. Dr. Robert Martindale has also been mentioned and is in Oregon. I would check with these doctors since your current doctor doesn’t seem to be a hernia expert. Best wishes in finding the proper diagnosis and treatment!
-
I know from personal experience that this happens to people with true collagen disorders. I am guessing most people with hernias have some collagen deficiency, thus the hernia. I have had recurrences, as well, but after a big surgery last year, I developed a new ventral/incisional hernia that got big fairly quickly. I have been told the more recurrences, the hernia becomes larger and more difficult to repair. [USER=”1435″]Karen[/USER] sorry to hear that you had 5 hernias. I have also had multiple hernias that were not all reported on radiology report, but seen when Dr. Towfigh read my scans. Hope you found the help you needed.
-
Did you try the center in Minnesota that Dr. Towfigh recommended? I would trust her recommendations. When you say that you have allergies and sensitivities, that should be a red flag when considering implanting a synthetic material in you. Be advised that most permanent sutures are polypropelene as well. I had some skin patch allergy testing done with mesh and suture samples. Dr. Towfigh referred me for that. The tests certainly aren’t perfect, Dr. Towfigh admits too, and one of the allergists that I saw didn’t feel like skin patches are a good way to test for implant reaction. One thing he did say though was if I did react on the skin he certainly wouldn’t recommend implanting that material. He also said that a negative skin reaction doesn’t mean you won’t react to same material when implanted. It’s complicated and I’m not sure there is a good way to know how someone will react to an implant. People with pre existing allergies should be very careful!!
-
While treating me, Dr. Towfigh has figured out that I have a collagen disorder. I haven’t been to a rheumatologist for an official diagnosis, but may do that in the future. I have had multiple recurrent hernias and tissue repairs fail and have other symptoms suggestive of a collagen disorder, so Dr. Towfigh has treated me as she would someone with a diagnosed collagen problem. I have certainly asked what I can be doing to improve my collagen and quality of my tissues and the answer so far has been nothing. I don’t know of any supplements that have been proven to help with this type of problem. I am taking a collagen supplement, not sure if it helps with this sort of issue but I figured it can’t hurt. Maybe I’ll have nice skin and nails from it! Haha. A person with a true collagen disorder does not do well with pure tissue repairs because our tissues are weak and do not heal like healthy tissue and peritoneum. I am not over weight so that has not contributed to my problem. I would like to know the answer to the question, as well, if weight gain alone contributes to recurrence. If anyone knows of diet and exercise that help improve collagen I would love to hear it! I am having ultrasound therapy from PT for now to help with healing from surgery and reduce scar tissue. Figured that can’t hurt either. I am open to any advice and suggestions since I am slow to heal and seem to have an unusual amount of swelling for a long time after surgery.
-
I was also going to recommend Dr. Paul Szotek in Indianapolis. Not too far from you and it certainly seems like we have to travel to get care from a true hernia specialist. I’ve traveled from VA to MD and ultimately CA but so worth it to get proper care. From another female, your symptoms sound so close to my original symptoms when I had a femoral hernia that went undiagnosed for some time. The radiating pain to the thigh and around hip to lower back and also pain related to your period were all symptoms I had, as well. Most radiologists aren’t looking for an occult hernia or don’t even know how to! If your doctor isn’t reading the images himself then the report may be a false negative. Hoping you can find some answers soon. Hang in there, we all know how frustrating it can be!
-
As far as plug repairs go, a highly regarded hernia specialist recently posted on Twitter – “plugs are evil and should not be extrapolated as all things “mesh”. I know there have been plenty of problems, reported on this forum, related to plug repairs.
-
Pwuenstel,
I had a laparoscopic triple neurectomy by a hernia expert and it did not resolve my pain. However, it did result in muscle atrophy, which I was not warned of the risk of this happening. When I asked an expert after the fact, I was told that atrophy can be due to triple neurectomy. I believe that this contributed to recurrent hernias I have had to deal with. Would yourntriple neurectomy be lapnor open? I would make sure to ask lots of questions regarding either procedure, the possible risks of the surgery and their outcomes from each procedure. I understand that you are ready for this to be over. This pain is very hard to deal with, both mentally and physically, but you need to make the most informed decision possible. Good Intentions has made some excellent points and suggestions. You can’t just roll the the dice, your future depends on resolution of your problem. Best wishes!SavingBob,
I can relate to months, well years, of debilitating pain. Also, I have traveled across the country for hernia surgery and mesh removal. It adds a whole new level of difficulty. For me, there always seems to be an unforeseen complication that results in me having to stay longer than planned, and also, the travel back after surgery has been difficult. It is also harder to deal with complications, that may arise some time after surgery, from so far away. It is certainly worth checking out the doctor closer to home if he sounds promising. It is much easier having surgery close to home! If you don’t feel confident after the consult, traveling for expert care is worth it, just a little more complicated. I have seen Dr. Goldblatt’s name on another forum but don’t know any specifics. Best wishes for resolution to your pain! I know how difficult this is and I am still working to get my life back! Keep looking for the answer, it will come. -
bbrown2060,
I am always sorry to hear of someone dealing with this scenario. I had occult hernias that weren’t seen on I’m aging. Dr. Towfigh says 3 out of 4 times the imaging is read as false negative for hernias. I have seen Dr. Igor Belyansky in Annapolis, MD at Anne Arundel Medical Center. He reads his own imaging and is an excellent hernia surgeon. There is also Dr. Sharon Bachman in Fairfax, VA. She is a hernia expert. I haven’t seen her but she comes highly recommended, as well. Dr. Gina Adrales is another hernia expert, she practices at Johns Hopkins. One of these physicians should be a good place to start. I hope you can find the cause of your pain soon and if it is a hernia, that you can get the repair that you need! Hope this helps. Best wishes. -
Sent you a private message answering some of your questions about symptoms. Hope it helps.
-
Sent you a private message because my post was reported as spam. Not sure why but think I can offer some good advice to help you.
-
There is Dr. Aali Sheen who is one of the surgeons on this forum. Look him up at http://www.manchesterherniaclinic.com. That may be a good place to start. Dr. Towfigh has presented research on imaging for occult hernias and CT is not a very reliable test and a negative CT does not mean that you don’t have a hernia. Your symptoms certainly sound like you could have a hidden hernia. Best wishes!
-
In my experience, most surgeons want some type of imaging to make the best surgical plan. Would it be possible to have Dr. Ponsky order the imaging and you could send it to him to read. That seems like your best option to me. Dr. Towfigh ordered imaging for me to have done at home and then I sent her the disc for interpretation. Usually an imaging center can perform the right imaging with orders but there seems to be a lot of false negative radiology reports when it comes to hernias. Best wishes for a successful minimally invasive surgery that allows you to get back to life, without complications!
-
Dr. Paul Szotek is in Indiana at the Indiana Hernia Center. He has contributed to this site in the past. Perhaps you could send him a private message or if you go to the Indiana Hernia Center website you will see how to contact him. I haven’t seen him so I can’t recommend him, but he has offered help and good advice to me here. He is a close colleague of Dr. Towfigh, as well. I think it’s a good place to start! Best wishes to your wife. I know occult hernias can be very difficult to deal with from a pain standpoint!
-
Dr. Shirin Towfigh, that started this forum, offers a no mesh robotic repair to a select group of patients that will do well with this type of repair. Not sure who qualifies, but certainly worth calling her office to get some information. She has been so helpful to me and is the most in depth hernia surgeon that I have been to and I have been to many of the top specialists! Dr. Andrew Wright is in Seattle. I know he is a hernia expert but don’t know specifics about his repairs. Wouldn’t hurt to call his office as well. Best wishes in finding the best repair for you that lets you live your active life pain free. I am still on that journey!
-
Agree that the problem is being over simplified. There is certainly nothing simple about living with a polypropelene implant that you have a reaction to!! Also, it is not simple to find a physician who understands your problem and can offer help! I hope and pray there is a resolution to this Mesh Mess in the near future.
-
I thought the piece started off strong, but ended up putting too much focus on the counterfeit polypropelene and not the fact that it seems any polypropelene is bad for the human body. Not everyone has Boston Scientific mesh, yet people still have severe systemic reactions to polypropelene! I’m glad the subject was discussed on 60 Minutes so it will prompt people to think that maybe there is some validity to the complaints by patients who have been harmed by polypropelene. It is REAL for so many!! I would love to see a follow up piece that focused more on the consequences for those who have had a reaction to polypropelene and also to include hernia patients, both men and women.
Good Intentions, not sure why you said the weak point was portraying an engineer as a polymer expert. My son studies Material Science Engineering and there are engineers that are experts in Polymers. I guess most people just think of Mechanical Engineers, Electrical Engineers or Civil Engineers. He probably was a true expert in polymers and he did seem very well informed on the subject. More experts need to speak up in defense of the patients that have been harmed by polypropelene! The problems are not in our heads!! Also, thank you, Good Intentions, for the well researched advice that you offer on this forum. I’m sure it has helped so many.
-
I have had several imaging tests that were read as false negatives. As important, if not more so, as it is to get the proper imaging, it is critical to have that imaging interpreted by a hernia specialist. I don’t think many radiologists are trained to evaluate mesh or look for occult hernias. The best MRI that I had, that actually showed recurrent hernias that were recognized by the radiologist, was done using the protocol provided from Dr. Towfigh. Of course, she actually knows what to look for, Imagine that!!! I hope you can have the right test that will give you some answers. Keep looking!
-
I would say at 10 days out of surgery it is not unusual to feel all sorts of strange pains. I think we all expect too much of ourselves, even after lap surgery! We need to remind ourselves that we just had surgery and that any surgery is a big deal. Don’t let anyone minimize your experience. I can recall feeling aching some days, burning others and then days where I felt great. I think sometimes it depends on activity level and quality of rest and sleep and perhaps even diet and bowel habits. I recall my surgeon saying that there should be improvement, no matter how slight, over time. So, maybe two steps forward and then one step back but overall, moving in the right direction towards complete healing. Definitely keep track of the things that you are feeling so that if things continue to get worse you can have a discussion with your doctor. So, I would say for now that you are still recovering and may feel all sorts of different pains now and then. Ice may help with the burning. I had some burning after a hernia repair and it seemed to burn itself out with time. Best wishes for a speedy recovery!