Momof4
Forum Replies Created
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I know Dr. Towfigh says that constipation is a huge risk factor for hernias. It is important to avoid constipation and straining, which increases abdominal pressure, contributing to hernia formation.
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From someone who has been there and done that, imaging is only as good as the radiologist that is reading it. I know Dr. Towfigh recommends valsava, bear down, with CT and MRI. I have had several imaging tests that were interpreted as negative for hernias, that Dr. Towfigh saw multiple hernias on. I certainly had pelvic and groin pain when my problem first started and ended up having a femoral hernia, missed on imaging. The pain that you mentioned with certain exercises, prolonged standing and for me prolonged sitting and turning in bed, all sound so familiar. Keep looking for the source of your pain. I would go see the doctor that Dr. Towfigh recommended as a next step or at least contact his office. If you do have a hidden hernia, you will probably need to see someone who specializes in hernia repair. Stay positive and keep looking for a solution. Best wishes!
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I agree with “Good Intentions” that you should look into this problem now and not accept the diminished lifestyle caused by your pain. You should definitely get a second opinion from a “hernia expert”, who deals with problems and pain from hernia repairs. In Annapolis, MD there is Dr. Igor Belyansky. He is a highly skilled surgeon in hernia repair and mesh complications. I’ve seen him myself. In Fairfax, VA there is Dr. Sharon Bachman, she comes highly recommended from Dr. Towfigh, who runs this forum. I live in VA and have travelled to MD for Dr. Belyansky and ultimately ended up traveling to CA to see Dr. Towfigh and have mesh removal. She is the best! She really listens to her patients and uses the information and imaging,which she reads herself, to come up with the best treatment plan. You may not need mesh removal but Dr. Towfigh says not to accept pain from hernia repair as your new normal. That is not normal!! Best wishes for a speedy resolution to your pain from someone who has been there.
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Mamadunlop,
Glad to hear that you have a plan and surely seem to have a good attitude. I am sure with everything that you have been through, that can’t be easy!! So glad you are continuing to try to get your life back and not letting hernias and pain stop you. I am still on my recovery journey, but like you, I haven’t, nor will I ever, let hernias and their complications ruin my life. So thankful for those who have helped me along the way, like Dr. Towfigh. Keep up the good fight! -
It is possible to be allergic to polypropylene, as well. I was allergy tested and had a definite allergic reaction to samples containing varying amounts of polypropylene, which I had a large piece of covering my lower abdomen. I am hoping, moving forward, that allergy testing is considered before implantation, at the very least, in patients with pre-existing conditions such as chronic urticaria or other known allergies. After seeing my reactions, the Allergist felt very strongly that I should have no foreign body implanted. She also suggested that even if you don’t react to a skin test, that doesn’t mean you won’t react to the material once implanted internally. I think this is a very interesting concept and I know Dr. Towfigh is leading the way in this area. It is unbelievable how many of the systemic reactions I was experiencing have improved since mesh removal (still working on the pain aspect). I hate to think of the damage done to my body by the constant inflammation and allergic reaction. It will take time to heal, but since mesh removal, 5 weeks ago, i am moving in the right direction!! Thanks dr. Towfigh!! I am interested to know if anyone else has known allergic reactions to polypropylene.
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I think you may have read me wrong. I am thankful for the truth and honesty about the potential risks of mesh removal. I just found it funny to be on a surgeon’s forum saying not to use surgeons who are on forums. It seems as though you both have had bad outcomes from the same doctor who has an extensive website about mesh removal. It is definitely difficult when we feel desperate for relief from pain and get sold a procedure that is not optimal for our situation. I believe everyone’s case is unique and therefore removal needs to be tailored for each individual patient. We all react differently, too. I had a triple neurectomy back at the start of this nightmare. While I haven’t had any pain effects from the procedure, like some, I had muscle atrophy and bulging, which show that these nerves are not just sensory! I would not recommend using a surgeon who promises “instant relief”. I do hope to get relief from many of my symptoms and realize there will not be instant improvement and recovery will take a lot of effort on my part. Trust me, I have done lots of research and reading and had discussions with multiple people, doctors and patients alike, and feel that I am making the best decision possible. Like I told Jgens, I hope you begin to improve and regain your quality of life. I appreciate your honesty and effort to help others learn from your experience.
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Jgens,
So, are you on Dr. Towfigh’s forum saying not to use surgeons who participate in online forums? This forum has several reputable surgeons that are kind enough to answer our questions and give advice, the most prominent being Dr. Towfigh. I certainly agree that you need to do your research and be very careful when choosing a mesh removal surgeon, but some of us who still have mesh and are having problems that are believed to be caused by the mesh itself, need to have the mesh removed. I am scheduled for mesh removal and am apprehensive, but I don’t not see another option. I am so sorry to hear that you are worse off after removal and hope that you can find some resolution to your pain. This situation has certainly affected every aspect of my life and I am hoping to be able to move on and put this whole nightmare behind me. I wish you well! -
So glad you have a plan that you are comfortable with! It always makes me feel better to have a plan. Sounds like the weight loss will help with the long term success of the hernia repair. Please keep us updated on your progress. I will do the same. Best wishes!
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vtjbrent,
I sent you a personal message through the message center asking a few questions about mesh removal and your stay in CA. I look forward to your reply. Thanks! -
I am so sorry to hear of your situation. Me being in the situation I am in has helped me to be more empathetic to other people’s suffering. I guess that can be a positive thing that has come from a very difficult situation. Since my groin pain started, i have had a hysterectomy (that I really didn’t need), femoral hernia repair, triple neurectomy, mesh removal and open repair of recurrent hernia on left side and open tissue repair of two new hernias on right side, and, finally, open abdominal wall reconstruction with large mesh from hip to hip and unbilicus to pubic bone. Sounds like my mesh is similar to yours in size but mine is polypropylene. I have been in significant pain all along and especially worse pain since the AWR. I finally made the trip from VA to CA to see Dr. Towfigh, at the suggestion of my prior surgeons. It was a great decision. Dr. Towfigh is interested in finding out why I have so many hernias and why I am having so much pain with my current mesh. I am going to have mesh allergy testing and also a special MRI, looking for pelvic floor dysfunction, caused by a collagen disorder or hypermobility disorder. It makes perfect sense to me to look for the cause of the recurrent problems before trying to fix them again. I plan to have robotic mesh removal. I may have to be implanted with something new that I am not allergic to and that will be tailored to my exact problem. Imagine that!! I am hoping for a hybrid, mostly absorbable mesh. I am trying to be in the best shape possible for surgery and walk daily for exercise, pushing through the pain, and do some PT core strengthening exercises. I have lost 30 pounds since my AWR, a lot due to nausea and loss of appetite and the exercise helps, as well. I am not overweight and I know Dr. Towfigh has said this helps reduce recurrent problems. I hope it helps to hear that you are not alone in feeling like you are a “hernia factory” and that there is a possibility of long term success. Best of luck to you. Keep looking for a solution!!
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Your symptoms definitely sound like they could be from a femoral hernia. A lot of the symptoms sound like ones that Dr. Towfigh has mentioned and ones that I experienced with my first femoral hernia. I certainly understand beause I am a busy mom of 4 that doesn’t have time to, or want to, lay around. I was much older when my pain started, 47, but mine started just like yours, out of the blue and no incident involved. After much experience with recurrent hernias and mesh problems, I cannot stress enough how important it is to see a surgeon that is a hernia expert. You want the right diagnostic tests and diagnosis and repair the first time! I know Dr. Szotek has contributed to this forum and may be a good place to start, since he is fairly close. I have learned the hard way that you have to travel for proper care and expertise and sometimes pay out of pocket, as well. It is my life and worth whatever it takes to feel good again. I hope you find answers soon. From someone who has been there, I understand how debilitating the pain can be. Best of luck to you.
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Debrafitpro,
Your symptoms certainly sound familiar and could definitely be suggestive of a hernia. I originally had similar symptoms and also had a laparoscopy from my GYN, looking for endometriosis, which was highly unlikely at my age of 47. I ended up having a femoral hernia that went undetected during the lap. I know Dr. Towfigh has said that they need to be in the right place and specifically looking for a hernia to find one. You would probably be better off finding a surgeon who is a hernia specialist, one that is familiar with occult hernias in women. It is important for you to have the correct imaging and someone who is trained to read it looking for hernias. Dr. Brent Matthews’ name has come up before and he is at Carolinas Medical Center in Charlotte, NC. Also, Dr. Bruce Ramshaw at the University of Tennessee specializes in hernias. I’m sure Dr. Towfigh can give you more specific information, but I hope you find an answer to your pain soon. It can be very frustrating and debilitating, for sure. I have had to travel in order to get the care I need from hernia experts, but the trip from VA to CA to see Dr. Towfigh was definitely worth it. Best of luck to you! -
Raindrop,
i have travelled for hernia repair several times and am getting ready to travel to CA from VA for mesh removal and repair. None of my surgeries have been standard because I have had recurrences and problems with my mesh. When I had laparoscopic mesh removal and open repair in Maryland, I stayed in the hospital one night and in a hotel, that is run by the hospital and only costs $60/night, for three nights. I was able to make the 4 1/2 hour car ride home without a problem. I have never had a problem with infections either. I would think the doctor could tell you if you are at increased risk for infection. Since having problems after an abdominal wall reconstruction, I was referred to Dr. Towfigh and we flew from VA to CA for a consult. The trip was difficult because of the pain I have but it was worth it for her expertise. It was the best doctor appointment I have ever had and the first one where the doctor was interested in why I am having so many problems and rare hernias and how best to address these problems. It is definitely overwhelming to think of having surgery so far from home, but so worth it for expert care! I understand that if the doctor has lot of out of town patients, like Dr. Towfigh, the office staff are very helpful with making arrangements for your stay and following up after surgery. In my opinion, if you don’t have a hernia specialist close to home, it is worth it to travel and get the best care possible the first time. Like dr. Towfigh says #Itisnotjustahernia!! I hope this helps. -
Dr. Towfigh,
I have an appointment to see you next week. I feel very fortunate for the opportunity to consult with you in person. Myron has been very helpful in coordinating the appointment and answering my many questions. I guess while I’m there we can discuss the option of Dr. Bachman helping me closer to home. Of course, I am still open to the option of receiving care from you, if that is best. I look forward to finally meeting you. Thanks for all you do! -
Dr. Towfigh,
Recently you referred to Sharon Bachman in Fairfax, VA. She is only a couple of hours away from me. I am wondering if she is one of the hernia experts that does mesh removals and do you know if she uses the robot? I’m just trying to figure out if there are any options close to home before flying across the country. I appreciate any recommendations you may have. Thank you!! -
Dr. Towfigh,
I have just had my final appt with Dr. Bittner, at VCU, about mesh removal surgery. We are trying to schedule sometime in early May. It has been a long process to make this decision, but we feel like I have tried all conservative measures and my current situation is unacceptable. I know Dr. Bittner has discussed my case with the other doctors involved and I am not sure all are in agreement with mesh removal being the next best step. I can understand how the doctor that put the mesh in doesn’t want to remove it. Dr. Bittner did tell me that no one can guarantee that it will cure all of my pain issues, he certainly feels it will help. Dr. Chen expressed that I will prob never be pain free, but I am hoping that mesh removal significantly reduces my symptoms. Dr. Bittner mentioned adding a colleague to help in my case, Dr. Levi Procter. He is fairly new to VCU and specializes in hernias as well. I will take all the help I can get. I know you have mentioned that abdominal wall mesh is easier to remove than inguinal, but my mesh goes from my umbilicus to my pubic bone and out to my hips. Would that involve AWR and inguinal regions and make it more complicated to remove? You have also said that you like to use the robot for mesh removal. Is it harder with larger pieces of mesh because it can extend procedure time with having to cut mesh into small pieces to be able to remove it through small holes? I would also like to know if you have had any mesh removal patients that suffer from nausea and loss of appetite and if it resolved after mesh removal. I am so thankful to have your input on this forum and have learned so much from others’ posts. Thank you!!After writing this post, there have been some complications scheduling my surgery because of hospital scheduling and doctors changing practices. I did meet with Dr. Levi Procter on Monday and have spoken with him since (his involvement would have been to observe surgery and provide follow up as needed), and he has made some inquiries on my behalf and says there have been several recommendations that I see you, Dr. Towfigh. I will continue to pursue what are the best options for my care and the restoration of my health. I will not give up!!
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NFG12, sorry to hear about your problems. I hope you continue to improve. I know Dr. Towfigh and other doctors that I have seen say that you can continue to heal for a year. Maybe that gives you some hope. Marcello71, you stated that you are going to undergo robotic mesh removal. Would you mind telling us who is going to do the surgery and where? I am still trying to make a decision and of course want it to be the most informed decision possible.
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Thanks for the message. I have always said I hate that anyone is in the situation that I am in with all the pain and suffering. It does sound like we are in similar places regarding decisions in treatment, to help eliminate pain. I know I will never be pain free, but I am not giving up on feeling better than I do now! Whether to have robotic mesh removal is a big decision and I am trying to get the right opinions from the experts before I proceed. I have a doctor at VCU, in Richmond, VA , that has offered robotic removal, if possible. Dr. Towfigh has said that he is experienced at abdominal wall mesh removal. I am waiting for Dr. Chen to weigh in on this, since my surgeon sent me to him for a consult. Dr. Chen is the one that suggested I see the doctor at VCU becaise he is closer to home and could coordinate conservative treatments that I have listed in an earlier post. I am still willing to travel from VA to see Dr. Towfigh or, perhaps, Dr. Ramshaw if it will help to come up with the best plan. To answer your question about reactions or systemic symptoms, I have nausea and general sick feeling a lot of the time. I also have some mild swelling in the area and feeling of hot liquid over abdomen (for lack of a better way to describe it). The pain is in new places than before the surgery. I have pulling feeling at my belly button and out to my hips it is very sore. I also have severe groin pain on both sides and burning on the right. It affects my whole life. Daily activities are limited by the pain and inability to sit or stand for long periods of time. Medication management does not seem like a long term solution to me and I would rather fix the problem. I am hoping that is possible. I would love to hear from Dr. Towfigh if Dr. Ramshaw does robotic mesh removal. I am also interested in the adhesion barrier you asked about. I would think it would be a good thing if having A large piece of mesh removed. The expense is trivial if it could improve the outcome and prevent adhesions and chance of later bowel obstruction. I am otherwise healthy, like you, and eat healthy and push myself to walk and do core strengthening PT for exercise. I wish you the best and appreciate that others on this forum understand what we are going through. Sorry for the ramble!
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Thanks for asking! I haven’t read the book yet and am not sure it would make a difference in the questions that I ask the doctors. I have already done my homework and I trust Dr. Belyansky, Dr. Bittner and Dr. Chen, and of course Dr. Towfigh, even though I haven’t seen her. We spent lots of time at my appointment talking and discussing options. Besides medication management, which I am already trying now and don’t see it as a long term solution, there is mesh removal. Dr. Bittner is going to talk to the others, including Dr. Towfigh, and we will talk in 2 weeks. I am also going to consult with Dr. Belyansky since he did he surgeries and I respect his opinion. I don’t blame my problems on anyone and think that, unfortunately, I am just one of those patients that is a statistic. I am so thankful for the help I have received so far. Now I am trying to make it through the holidays and enjoy the company of my wonderful family. Happy Thanksgiving!!
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NEW! HerniaTalk site coming soon…
First things first, this already is the best resource for all things Hernia!!! I liked the look of things better when the date of post and reply were shown. Made it easier to keep track of what you had read. The easy access to information on specialists close to home sounds great. I, as a patient, have found this forum so helpful with great advice and support and also helping me to have meaningful discussions with my doctors. You are a blessing to us all. Thank you!!