Momof4
Forum Replies Created
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Pete,
i always hate to hear of a situation like yours. If someone hasn’t experienced this type of pain, they have no idea how debilitating it can be. I had a large piece of polypropelene mesh that I had a reaction to. It was implanted for 2 years and was making me sick. I am thankful that I found the right surgeon to remove it. Unfortunately, now I have recurrent hernias. Maybe you can reach out to Dr. Earle through private message in this forum. Like Chaunce said, if he can’t help hopefully he can recommend someone that can, surgeon and pain management close to home. I tried several of the same medications that you mentioned and, like you, had unacceptable side effects. In my opinion, medication is not a solution to a mesh problem. The problem needs to be fixed. The hard part of that is finding someone who can make a correct diagnosis and is willing to admit that mesh can sometimes cause problems, even if they consider it “rare”! Dr. Towfigh has presented research that a CT scan is not good imaging for small hernias and even if it show up on imaging, the radiologist misses it and gives a false negative report. You need a hernia specialist that knows how to read the imaging and not rely on the report. It happened to me several times. I wish you the best on this journey. It is a difficult one but you need to persevere! It will pay off. -
Bloating is certainly something that I experienced with mesh reaction and with hernia recurrence. It was pretty significant and very frustrating and uncomfortable. Maybe this symptom will help with diagnosis. I have not heard of a torn piece of hernia mesh? What type of mesh do you have? A doctor recently told me that polyester mesh will sometimes become brittle and break, resulting in a recurrent hernia. Hope you find the cause of your problems. This is surely frustrating, but be persistent until you find the correct diagnosis!! Best wishes.
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clbear,
I’m not surprised at the CT report. I can’t tell you how many of my reports have read exactly the same, expected post-surgical changes. They proceed to tell me that my uterus is likely surgically absent, duh!! What they don’t tell you is that there is a problem with your mesh or a recurrent hernia. I recently had a MRI for recurrent hernia that has an obvious bulge this time, so I wondered if it would be seen on imaging. I took Dr. Towfigh’s protocol for MRI with valsalva to the test and the MRI was performed this way. Well guess what, they actually noted a hernia recurrence. Only one though, the bulging one! On review, Dr. Towfigh found several others which I could have told you were there due to pain! It is very frustrating to have these expensive, for the patient and insurance company, tests and then have them interpreted incorrectly! It also leaves us patients wondering if we really have a problem or not. There needs to be education on imaging for hernias. I know Dr. Towfigh is leading the way on that front. In the meantime, a physiatrist may offer good suggestions until you can get this figured out. Glad you made an appointment with another surgeon for second opinion, it can’t hurt. Don’t give up and keep searching for the cause of lyour pain. It’s not in your head!! -
I recently asked a physician about Phasix as I saw it mentioned on another platform. I was told that it is a fully absorbable synthetic mesh that absorbs in 18 months vs 8-10 months for most biologic absorbable meshes. It causes a high inflammatory response early on, moreso than other synthetics. It has been out for 2.5 years so the 2 year data should be coming out soon. It will be interesting to see the recurrence rate vs that of biologics. There may still be a high recurrence as with biologics, but just pushed back due to the longer time before absorption. Not sure if activity level plays a large part in deciding to use this mesh. I was told it is not good for someone with connective tissue problems. There will still be recurrences, they will just happen later!
Good Intentions, thanks for input on this forum. Sounds like you have done lots of research which is very helpful to those who have just been diagnosed and are trying to make the best, most informed decision. I wish there was a way for you to tell me the best mesh to repair my multiple recurrences after mesh removal, considering that it was removed due to reaction and I have a collagen problem. It’s a tough decision! I am certainly thankful for Dr. Towfigh’s expertise in mesh selection. Thanks again!
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clbear,
Sorry to hear of your problems. Hopefully your new CT scan will give some answers but it will most likely be negative. Some surgeons here have said that tests are misinterpreted 3/4 times. To consider mesh removal, which comes with risks, you need to find out if the mesh is the cause of your pain. It will take a hernia expert to find that out. If it is your mesh causing the problem and it needs to be removed, I think there is no reason to delay. I had a large piece of mesh in for 2 years that was causing several systemic problems. The mesh caused lots of inflammation which I am having trouble recovering from. A true mesh reaction is rare, but if it is a true mesh reaction the damage can be devastating, mentally and physically. I hope you can see a hernia specialist to help you figure this out. BTW, I’m a female, 52 y/o and I was fit and happy as well. Currently I am trying to get back to that place! Dr. Towfigh has been a great help to me! -
I am sad to hear of your pain! I am having nerve pain in my right thigh, after mesh removal, and I can’t imagine it being in both legs and other areas. It feels like my leg is on fire, like yours, and it is a pain that you can’t ignore. There are some conservative treatments that hopefully you can try before another surgery. You need to find a pain management doctor that specializes in nerve treatments. They can try injections and at least identify the source of pain. Also, they can be therapeutic for some. I am also going to PT to help reduce scar tissue and swelling, which may be contributing to the nerve problem. If you do go the nerve stimulator route, I know there is a trial period before you would undergo surgery for implantation. Please keep searching for conservative treatments! There may be help for your suffering. I know it’s hard to live with this type of pain and I hope and pray every day that this is not permanent! I am still searching for resolution and have doctors willing to help. You need to try to find the same. Best wishes and let us know what you find out.
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In another post, Dr. Towfigh says that jogging and weight lifting are ok and so are most other forms of exercise. Yoga and Pilates are protective of hernia as well. Cross fit type of exercise is not recommended due to increased abdominal pressure with squats and rapid movement and direction change. Hope this helps.
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I have had one of these MRIs while in severe groin pain. Getting all three planes may make it a little longer. Also, I remember the valsalva being painful when you are already in pain in that area. You only need to bear down for very short periods and there is a break in between. Usually the person administering the test is very good at making sure you are ok and giving very specific and encouraging instructions. This test will give the doctor a lot of good information, so I hope she can handle it for a short while. Maybe if there is any medication that helps with her pain, she can take it prior to the test. Best of luck getting through the test and hope it leads to a correct diagnosis.
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LorriG,
I agree that Dr. Belyansky is a good choice. I have had several surgeries with him and he is top-notch. Seems like he has recently gotten more involved with mesh removal. I also know he is highly skilled at tissue repair, which it sounds like you may need after removal. Have you considered Dr. Towfigh, she runs this forum? She has a special interest in female hernias and also lots of experience with autoimmune disease and mesh reaction. I’’m not sure of your location, but all of the doctors mentioned are good options. From a fellow patient who had foreign body reaction, I hope you can find the right answer and have quick resolution to your problem! Best wishes. -
Knowashington,
From a fellow hernia patient, your symptoms certainly sound like a hernia is a possibility. I had many of the same symptoms and also had tests that were negative or, at least, misinterpreted as so. I recommend Dr. Levi Procter at VCU as well. I have seen him and think he would be a good person to evaluate you. Definitely take your films and any medical notes with you to your next appointment. There is a lot of good information on this forum that may be helpful, as well. Sorry to hear of your problem and hope you can find the answer quickly! -
I totally agree with you and jnomesh about not getting hernias fixed if they aren’t causing any symptoms. You could open up a whole new can of worms and cause pain and problems that didn’t exist. I know femoral hernias need to be repaired due to chance of incarceration, but think Dr. Towfigh has said inguinal hernias that are asymptotic can be monitored. Best of luck with your issue.
Ajm222, to answer your question, I know Dr. Belyansky does mesh and non-mesh repairs, depending on the individual needs of the patient. He specializes in all types of hernias and complex abdominal wall reconstruction. He is a brilliant surgeon and super nice doctor. Also, he does read his own CT scans, but not sure about reading them for no charge if you aren’t an established patient. I was a surgical patient of his and he did read my scans.
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Pretty sure he used Bassini technique for me. He may use others but I am not aware of them. My tissue repair failed, but I have had multiple hernias and even problems with mesh so I am not the typical case. Are you interested in tissue repair only because of fear of complications from mesh? I hope you can find what works best for you and you can move on with no problems!
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I know that Dr. Belyansky does some tissue repairs because he has done one on me. Not sure what the criteria is but I’m sure he decides on an individual basis who qualifies for and will do well with a pure tissue repair. It is certainly worth communicating with his office or perhaps schedule a consult with him. He is a very nice doctor who will listen to your concerns and answer all of your questions. Best wishes to you!
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TooMuchPain, so glad that you have hope for recovery. If it doesn’t turn out to be the resolution to your pain, don’t lose hope but seek out another opinion. I think you should definitely share the results with your previous doctors, they can learn from your case and hopefully help future patients without disregarding their concerns and suffering. Telling someone to go to pain management and live with the pain is an unacceptable response, but I believe it happens because I was told similar things. Sounds like you were able to get past that and find a solution. I was able to do the same. Some people may not be able to do that and I feel sad for them. It is bad enough to be suffering with so much pain, but to be disregarded makes it even worse! Thank goodness there are some doctors that REALLY LISTEN and believe the patient, and are willing to think outside the box for solutions. Thank you to Dr. Towfigh for being one of those doctors!
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Good Intentions, I agree with your statement that “the widespread rejection of the thought that a mesh implantation can cause problems is pretty incredible”. I’ve recently wondered that if the doctor admits that mesh is causing problems, is it then harder to justify the continued use of mesh in future patients!! I know everyone reacts differently and there are many factors to be considered in choosing the best hernia repair for each individual, but there certainly are patients who should not have mesh implants. Dr. Towfigh has identified certain subsets of patients (those with autoimmune, allergies to polypropelene, very thin, etc.) who will not do well with the standard mesh repair, if there even is such as thing!! Thank you to the doctors on this forum that are considering individual factors and tailoring their hernia repairs for each patient. I speak from experience because I had an allergic reaction to polypropelene, which had been implanted for hernia repair and, ultimately, Abdominal wall reconstruction, and was removed after causing two years of suffering with pain and systemic reactions. I am not sure that I will ever fully recover from all of the damage caused by the mesh and multiple surgeries, but I am doing everything I can to try and make that happen. So, when a doctor doesn’t acknowledge or believe that mesh causes problems, I feel like that is a slap in the face to those who have suffered so much! Certainly makes one lose faith in the medical system.
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I’ve been told that plastic surgeons say 6 months to a year for scar tissue to remodel and feel normal. In your case it’s been a little over a year. You could try massage to help break it up and PT can help with this. They have multi-modal approach to reduce scar tissue. I am just starting to work with PT and that is one of the things we will work on. I have lots of scar tissue from multiple abdominal surgeries. Just a few suggestions. Wishing you the best.
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I am going to have to chime in on this topic. I had a large mesh removed 3 months ago and ever since that surgery I am having trouble with my lateral femoral cutaneous nerve on my right side. I never had any problems with it before the surgery. My skin is numb to the touch and I have tingling and burning pain that goes from the crease of my leg to just above my knee. I have had a nerve block by a pain management specialist, after mesh removal, and that didn’t help. I also had a re-exploration looking for nerve entrapment but that wasn’t the issue. The nerve may have been compressed in a tight repair and it has been loosened up. I also still have lots of inflammation and swelling that may be contributing to the problem. I am going back to pain management and perhaps a neurologist for help. It is the kind of pain that is hard to ignore, I feel it all the time. I am hoping it is something that will resolve with time. It gives me hope to hear that others have had the problem resolve over time. Wilfred, I hope you find resolution to your problem. I certainly know where you are coming from and it is not fun!!
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I agree that Dr. Procter should be added to the list! I haven’t had surgery with him, but had an office consult for a mesh problem. My problem ended up being better handled with Dr. Towfigh, but Dr. Procter offered very insightful advice and answered all of my questions. He even consulted with other physicians to help me find the best solution for my situation. Thanks, Dr. Procter, for offering your expert advice here. It is truly appreciated.
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Sorry to hear of your pain issues after mesh hernia repair. I’ve been there done that! You need to be patient and seek second and third opinions from a hernia expert that deals with post surgery problems. Dr. Towfigh, in Beverly Hills that runs this forum, is the best in that area. She has the most experience reading imaging looking for hernias and mesh related issues. The rash you describe sounds like an allergic reaction. A true mesh reaction is rare but can happen, I know because it happened to me. I was mesh patch tested and had reactions to polypropelene mesh and sutures, which was the material that had been implanted across my entire pelvis for 2 years. I was having several systemic reactions and Dr. Towfigh recognized that the mesh was most likely causing my problems. Besides the rashes and itching, I was having nausea and weight loss and strange bruising, also constant pulling feeling and debilitating pain. It was also causing lots of inflammation. If you are having a true mesh reaction then the mesh needs to be removed. Once again, this needs to be done by an expert with lots of experience. Mesh removal has many risks and the benefit needs to outweigh the risks. I am still recovering from mesh removal, a nerve problem and all of the inflammation. I am remaining hopeful for a good recovery. This forum is certainly a good place to start to find answers to your questions. We are very fortunate that Dr. Towfigh and others share their expertise!
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Your pain does not sound typical for being three months after surgery. Definitely worth getting a second opinion. If you would like help finding a hernia specialist, you can post the area that you live in. Sounds like you need help from someone other than your primary care. I believe if they were experiencing the pain that the patient is, the doctors office might not take their sweet time in responding. I remember seeing a quote referring to physicians dealing with patients who have chronic pain from hernia repair : “Don’t delay. Try walking even one day with a pebble in your shoe” or even more appropriately, a painful piece of mesh in your groin or abdomen!! Best wishes.