NIS

Mesh Pain Recovery Testimonial

Removal is only the beginning of recovery

 

This patient sent me this testimonial unsolicited but with a keen sense of gratitude and a desire to help others. Not everybody recovers effortlessly after mesh removal. Flares of the pain  after initial relief of the  pain due to central pain sensitization plague nearly all patients. This patient had a flare that lasted one year and started six months after his removal surgery. This is the story of how he recovered.  - Dr. P.

Life after mesh removal

Can you do this? He could not before mesh explant and during his flare after explant. Now he does this and much more.

 

Hi Dr. Petersen,
 
This is a very long email but there is a lot of information in it that I hope will be helpful to you in helping others in the future. Thanks for reading. You can use this email or parts of it as a testimonial if you want or I can make a shorter version or approve any thing you edit yourself from this email or I can try to take the time to write something better in the future that you can use. Also I told your assistant in years passed I would post my great experience on forums on the net and have failed to do so. I feel terrible as I know you really needed some good things said because someone has been bad mouthing you. I will blame it on depression from family matters and pure procrastination. Also I kind of wanted to make sure my success was long term before I posted anything. I would think four years after you removed my mesh is now long enough for me to believe that I am going to stay better. I promise someday I will post my experience in detail everywhere I can. If it wasn’t for these forums and talking to several people I found on them I would not have found you and gotten better. I am truly sorry I wasn’t there for you when I should have been. You were there for me and I am more grateful to you than my actions have shown.
 
I remember reading a lot of the forums and there is a lot of people looking for answers and people saying they are getting their mesh removed but I could never find anyone after their removal posting anything afterwards on how they felt long term. I firmly believe that after people’s pain goes away they move on to a normal life and no longer think about the pain and therefore never get on the forums again. I am a perfect example of that. I remember wondering if removing the mesh really worked and how people feel years later, not just days later after surgery. So I know there are others wanting to have hope that they will feel better long term after removal of the mesh and I need to let them know they can have hope that you can help them, because I am one of your many true success stories.
 
I had an awesome experience. I flew in from Indiana with my girlfriend and was very nervous wondering if it would work or not. Everything went smoothly with no surprises. The hotel was nice. The map and directions, the schedule, your staff, the hospital, your calming personality, everything. The consultations with you over the phone before making my decision, office visits while in Vegas pre and post op, the surgery day, and phone conversations over the years after. You are the nicest doctor I have ever met and always talked to me when I needed answers. Thank you so much for all you are doing to help everyone.
 
I want to tell you a few things that may help you to help others in the future and also let you know how I am feeling four years after mesh removal. The biking really helps. You told me to bike and swim all I could. It is cold in Indiana in the winter and no indoor pools nearby so I didn’t swim much but when I did it always made me feel better. I would swim under and above water but mostly would tread water or hold on to the side with my back to it and pedal my legs. I biked a lot. Mostly just in my neighborhood sometimes several miles but most often about 10 miles every few days. Not slow but not racing either. Just a good fast steady pace. Mostly flat where I am so usually in a high gear. I had an indoor recumbent bike too for winter or rainy days. Just the motion of pedaling I think is what really helps. I roller skated once a week too. I have skated all my life and used to race so I skated two hours a week at a pretty fast pace and I think it helped a lot. Skating is probably a risky thing for most people because of the possibility of doing the splits or falling but for me it was fine because of my experience and unless they could go at a very fast pace like I do, it probably wouldn’t do much. For me it was some good blood flow and motion to the groin/leg area. If I ever feel a little pain in my groin area which is very rare now, I just go for a bike ride or do my old physically therapy routines and it goes away right then or when I wake up the next day.
 
You had to cut two of the nerves that run through that area. Just to let you know, as you had told me, I never experienced any numbness, dead spot, weakness, or any other effect from this. All did and still does feel normal.
 
After you removed the mesh the surgical pain and all other pain was completely gone after three months. One day it just dawned on me it was all gone. I enjoyed it with amazement until three months later I helped a friend lift a very heavy solid wood chest of drawers. I was feeling so good I forgot to be careful or thought I was cured and could do anything again. Of course the pain came back pretty badly. I could tell you were disappointed (maybe concerned is a better word) with my mistake and how it may affect my results. Believe me I was disappointed in myself too. I thought I had ruined my only chance to be pain free. I beat myself up over it for a long time. Yet you were so patient and helpful over the phone. After we determined that I did not have another hernia, by getting examined here locally, you explained how I had re-awoken my nerves and how my brain amplifies the pain in my mind. You told me what to do and not do and that it would take about a year to go away again. You were exactly right. It took about a year to go away again. In the meantime I biked all I could. I did not workout at all, but I did do my old therapy exercises at home every few days.
 
When the mesh was in me, I hurt constantly. Standing, laying, squatting down, anything or even doing nothing at all was very painful. I thought my life was over. Constant pain and depression. Bruce Rosenberg, a mesh pain advocate I found on an online forum suggested I speak with you. I’m sure you know who I am talking about.  After the one year detour from recovery because of my mistake lifting the chest of drawers, I have felt fine ever since. So a year and a half after surgery I was finally pain free. Had I not made that mistake I believe I would have continued pain free 3 months after surgery. I am currently two and one half years pain free.
 
Before I was completely pain free again, a friend introduced me to mountain biking. Long story short I started out easy until I was pain free again and since then have progressed to where I mountain bike three days a week. I’m talking fast and hard riding. Fast downhill, bouncing over roots and rocks and long hard uphill climbs too. I’m 54 years old so no I don’t do any big air jumps except the occasional bunny hop over a small log. I ride in the woods 12-15 miles two times a week (about 2 ½ hours each day) and then 30-40 miles on most Saturdays about 6-8 hours including snack breaks every hour. That’s a total of around 60 miles a week! It’s is amazing that I can do this. Previously just small bumps in my yard while on my riding lawn mower would cause terrible pain. Now I am flying downhill on bumpy trails and pedal up very steep climbs for hours. I travel all over the state riding difficult trails. Instead of worrying if it’s going to hurt my old injury, I am thinking about having enough food and water or my bike breaking down miles deep in the forest. I still speed skate on roller skates once a week every week. I have recently for the first time in my life taken up ice skating since I cannot mountain bike three days a week in the winter. Starting to get pretty good too. I bike ride on the roads when the trails are muddy. If there is a day I haven’t done any of the above activities, I take a short walk through my neighborhood in the evening after dinner. I have went from someone always in pain and saying no to my friends invites, to my friends thinking of me as that guy that is always busy doing all kinds of outdoor sports and is in great shape. You said never do a sit up again. So I never have. You said don’t lift over 50 pounds. So I haven’t done that either. I don’t want to screw up again, because life is great now.
 
I use to work out (lift weights) and it is something I have missed. Over the ten years that I had the mesh in me I would occasionally feel better and try to work out only to start hurting again. So after four years since removal and doing all the above pain free the last two and one half years I have decided to try again. It has been three months now. First of all it is mostly body weight exercises which means I don’t use weights. I only use my body weight. I am 175 pounds at 5’8” in height. I do squats, lunges, calf raises, pull ups, chin ups, chest dips, and push-ups. I alternate the leg and upper body exercises. I only do one set of each. I work out three days a week. About every other day. I started out with only a few reps and have built up to more reps. I eased into it slowly this time as you have suggested. I was and still am in fear of screwing up again by over doing it. I have nothing to prove by lifting anything heavy. Biking, skating and being pain free are way more important so I don’t push it. I just want to stay healthy and look toned. But just to let you know I am now doing one legged squats, walking lunges, and quite a few yoga moves too. I do everything at a slow pace. I do 20 reps for each leg exercise and the push-ups and 10 reps each for the chin ups, pull ups, and chest dips. Though I don’t specifically do any core (abdominal) exercises, it still gets worked as I am holding my legs up, sometimes with my knees bent, while doing the chin ups, pull ups, and dips and of course my core is engaged holding my body from rocking as well as while doing push-ups , and other things. I have a total gym I use for a few things which if you don’t know uses cables and when I pull them it pulls me up on an inclined board on rollers, again using my own body weight as resistance. A lot of these exercises I have to keep my core engaged to hold my body in a seated position while working the arms. I also occasionally hold a plank for 60 seconds without any pain. (Ok, so yes I do one abdominal exercise.) I always warm up first before working out and always stretch everything afterwards. I always do my old physical therapy exercises after my workout too. Things like bridges with exercise ball, leg work with bands, and other standard very light stuff for the groin and core area that they had me trying before the mesh removal.  I think the therapy exercises have been and still are an important part of being pain free. The only thing I do with weights is bicep curls with 45 lb. dumbbells. I do one arm at a time so I do not lift over 50 pounds at a time. Sorry for the long explanation but wanted to let you know what I am able to do now and if any of this is something I shouldn’t be doing let me know. Again I am not specifically doing any core exercises except the 60 second plank a couple of times a week and the light physical therapy exercises, but my core is engaged quite often doing many of the other exercises. I am basically doing what they call calisthenics, as well as yoga, my old therapy routines, and stretching. I feel no pain. Just wanting to keep my muscles, tendons and ligaments strong so I have support and do stretching so I am flexible and everything stays elastic. I believe weakness of other muscles around the area and tightness in the area is what makes it get pulled and hurt easier so I stay strong yet limber. You should see some of the yoga moves I can do.
 
Things I try to be aware of and avoid are 1) lifting anything heavy (over 50 pounds) and I always lift with my legs. 2)  Doing anything that may cause me to spread my legs too far apart such as the splits, slipping on ice, or stepping down from a ladder from a step to high. Spreading my legs too far apart is the only motion that still scares me so I keep aware of this.  Placing a case of water under my shopping cart sometimes makes me feel a little something I assume from the combination of holding the weight while having to lean forward to place it under the cart while squatting at the same time. It’s the leaning forward with the weight I believe. Basically I try to be aware when I am doing the above things to be careful but most the time I never even think about it anymore. I really believe the key is to keep moving. When I go several days without doing much is when I start to notice a slight feeling down there if I do something using my core, so I just stay active and all is fine.
 
What means the most to me is all the little everyday things that no longer bother me like putting my socks and shoes on or pulling the kitchen trash bag out of its container, or being able to carry more than one grocery bag in at a time from my car to the kitchen counter. Being able to get a good night sleep with no pain. Not being constantly irritable.
 
So there you go. I would call it a great success. From constant pain every minute of every day of my life to doing about any activity I want completely pain free. Instead of becoming progressively unhealthy from a sedentary life because of constant pain, I have a very active athletic life and can enjoy life and keep healthy.
 
Just encase you can’t picture who I am, I am the one that told you the slightly inappropriate joke a little too loudly in the recovery room about being allergic to my girlfriend. I’m sure you remember the punch line. I know you didn’t think so, but I still think it was pretty funny. LOL. Unfortunately, the anesthesia made me say it a lot louder than I had planned and I am sure others besides you heard it which was not my intent. LOL. It was a little embarrassing once I found out that I had said it and how loudly, but years later it’s a funny memory for me and gives me a good chuckle when I think of it. Hopefully it made a good story for you to tell on an occasion or two. LOL. Anyway….
 
Dr. Petersen, you are my hero and I tell you thank you in my mind all the time and feel so blessed I found you. I send you blessings all the time and hope it has been working. Thank you so much for what you are doing to help everyone. You are changing lives everywhere in a big way by giving people the ability to do the little things again. To stop the pain and the depression and give people peace and comfort and hope again is an awesome gift I hope you continue to give as long as you are able. I hope others in the health field are listening to you and learning from you so that others can also help those in need now and in the future. It would be nice if the big companies would quit marketing this product and the schools would teach the old way of repairing hernias so that this could be prevented instead of having to be fixed after the fact. But thank god you’re here. Maybe now that there are commercials on T.V about hernia mesh lawsuits people will think twice and do better research before they make their decision on using mesh or not. I didn’t know I had a choice and didn’t know of the possible complications. It was sold to me as the standard way and best way and I would be able to do everything I used to be able to do. I feel so bad for all the people suffering that don’t even understand why. No doctor I spoke with ever suggested it might be the mesh. And if I suggested it, they just waved it off as not a possibility. I figured it out on my own be somehow stumbling on to an online forum about chronic mesh pain. Without the internet I would still be in pain. Several other doctors say they will remove mesh but they all wanted to put a “new and improved” one back in. They still just don’t get it. So glad I went with you. I have told my story to friends and strangers more times than I can count anytime someone mentions the word hernia or any other time it relates to our current conversation. I tell everyone, do not put mesh in you. Dr. Petersen can stitch you up the right way. I hope they listen. Believe it or not my own brother got double meshes, one on each side, even after knowing my entire story and seen how I much pain I used to be in. Crazy. But many people have been amazed and shocked at my story and thanked me for warning them.
 
If you have time to reply, I would like to know how you feel about my exercises and the use of my core doing some of them and if I am o.k. if I don’t feel any pain.
 
Also I see all these mesh lawsuit commercials and it would be nice to at least recoup my surgery cost but the few I have contacted just send you papers where you sign your rights away, I can’t get anyone to talk to me on the phone. Also it seem it has to be the specific brand and model of mesh for each lawsuit. I haven’t found anyone suing for my specific one yet. Also what about class action lawsuits where you sue as a group as opposed to an individual lawsuit. Do you know any good attorneys to take these cases on? You sure have a nice list of people to refer to a good lawyer. Any ideas on the best way to recoup my money?
 
It would be great if someone could make a database of the types of meshes that have been removed and then could be matched up to current lawsuits for that type of mesh and then somehow we can all be notified.
 
The survey you sent asked if the pain came back and when, so I said yes and 6 months after removal. The only place I had to say that the pain then went away again a year later and has been gone for 2 and 1/2 years, was in the comments, so I mentioned it there. Let others know if they have a set back because of pushing it too early, there is still hope!
 
Again I can’t say it enough. Thank you for changing my life!!!
 
Kass
 
P.S.
I would like to mentioned nutrition too. Years ago I Googled foods that are inflammatory and anti-inflammatory. I don’t exclude or include too many of these but try to stay aware of them and use moderation. I was diagnosed with arthritis and carpal tunnel 20 years ago. I did a food sensitivity test be doing a five day water fast and then a reintroduction of foods one at a time and found out the inflammation was from high fructose corn syrup. This is a whole other amazing success story for another day but the short of it is they wanted me on steroids for the rest of my life because all my joints were in pain. I quite eating anything that had high fructose corn syrup listed in the ingredients and the pain went away. If I mistakenly eat it my toes and fingers immediately hurt again. I have been pain free for 20 years! So I know a little about food sensitivities and inflammation and auto-immune diseases. Years later I had a naturopathic / holistic doctor give me a special blood test. Before the blood test I had to eat around 200 different foods over 30 days and then they tested for antibodies for each food. The concept being that any food that had I antibodies for, I was apparently sensitive to and it could cause inflammation and other problems. The result was a report of all the foods with a 1-5 rating. Basically I try to stay away from the things I ranked high in which for me was corn, dairy, mushrooms, and a few other things. I have tested these items from time to time and it seems to be pretty accurate as eating them makes me feel bad. Anyway my point is I believe it is important to not keep my body inflamed and to eat healthy to help keep the pain down. This is something I did before the mesh removal and appeared to be somewhat helpful. It didn’t make my mesh pain go away but it got worse when I ate things I knew I shouldn’t. For the last three years I pretty much eat what is called the Paleo diet. Lots of clean protein, lots of fruits and vegetables, moderate carbs and healthy fats. No dairy, no grains, no sugar. Whether grains cause leaky gut syndrome which may cause inflammation or not, I have no idea. But I don’t eat them. Milk makes me feel like crap and inflamed. What I do know is I feel great always and have tons of energy to be able to do all the activities I mentioned above. I eat all I want and often, five or six times a day, and I never feel deprived of anything. It is not a diet but a life style. I eat a lot of chicken breast, fish, and lean meat, tons of vegetables, some fruit, and sweet potatoes. You can look up Paleo if you are interested. I don’t stick to it 100% and I do have the occasional cheat meal. I don’t stress over it. I do believe being aware of what you put in your body and how your body reacts to it is important. I think everyone is different and reacts differently to different foods. It’s just a matter of learning what your body doesn’t like. I actually kept a log for months of everything I put in my mouth and another log on how I felt. I was able to identify patterns and after retesting certain foods to verify, I found foods my body didn’t seem to like so much. I eat those foods less often or in smaller portions. It works for me. Maybe it can help some of your patients somehow. Also I drink nothing but water and quite a bit. I used to hurt more when not hydrated well. Besides the pain pills I took after my mesh removal surgery, I take nothing. No ibuprofen, no vitamins, no protein shakes, nothing. I haven’t been sick in years and always feel great.
 
I do not have any of the symptoms listed in the link you sent me that are caused by foreign objects in my body. I did when the mesh was in me, but I do not now. 
 
 
I probably told you way more than you needed or wanted to know but I just wanted to share my thoughts and give you all the information I possibly could. Hopefully it somehow helps your research and future patient’s successes.
 
If I am ever in Vegas I would love to stop and say hi and thank you in person.
 
If you ever find yourself in Indianapolis, Indiana and need anything, don’t hesitate to call me.
 
Wishing you, your loved ones, and staff, happiness and success in everything.
 
Have a great day and continued success always!
 
Kass

 

This is what I advised him and what he followed to the letter with faith and perseverance. Mesh Pain Recovery Protocol and Managing Mesh Pain Flares.