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Chronic Pain After Inguinal Hernia Repair (Boston)
Hi Dr. Towfigh and Dr. Earle. My name is Michael and I live in Massachusetts. I’m 5’6″ and weigh about 140 pounds and am 34 years old. I had Open Right Inguinal Hernia Surgery at the Mass General Hospital in Boston on October 16th, 2015, and I have been in pain ever since.
I have been to so many doctors here in Boston the last 10 months, and I have gotten no where with them. More then half I don’t think believe me. I just know something it wrong. I have been trying my best to find out what is wrong and if I can be helped in any way, or if I just have to live with the pain for the rest of my life.
It took me this long to find you Dr. Towfigh. I called your office twice last week, since I decided to fly out there to see you. Obviously having a possible solution to the pain easing up would be a dream come true, but at this point……I would just be really happy to finally know what is causing it.
I asked a lot of questions, and learned that you would probably order some scans. I was pretty surprised because pretty much almost every time I’ve seen a doctor here, I have asked “Is there any sort of scan that might show something, anything at all?” And they have all said no. I asked is there any way to get an idea of what scan(s) you would possibly order. For the main reason my insurance would only over 80% of the costs for them out there, and they would be free here. Plus already having them ready for you would be more convenient for us both I would think. I learned about this forum and got really happy to learn that you are nice enough to check it when you have time. I got even more happy when I actually noticed that there is a doctor that is in Massachusetts, Dr Earle checks this forum sometimes too. I am not sure if he treats/sees patients for pain after Hernia surgery’s or not though, (If not, do you know of anyone in Massachusetts that does?) I am actually planning on calling his office tomorrow and asking them, and if so, making an appointment with him first to see if he has any idea what is going on with me. (*Edit*: The only number I can find for Dr. Earle is Bayside in Springfield, MA, called today and he is no longer there anymore and no one knew where he is now, does anyone reading this know, and would be so kind to post the infos?”) Maybe he also would know some possible scans to order? I don’t know. I know it probably would be hard for you to even say what scans might show something without seeing me in person. I have only had one type of scan, and it was a Ultrasound of my scrotum, when I went to the Emergency room back in Jan because it was so bad. They thought it was a blood flow problem. (Test came out normal)
I am going to post a Facts/List of my symptoms and pain. Followed by some of my story after. Which I’ll kind of start to ramble and most of it probably won’t help you figure out what is wrong with me. But I don’t know what else to do. Ever since this has started, I remember my mother used to sometimes say (she suffered from chronic pain) “When people are in pain, they don’t know what to do”
Facts/Symptoms:
Open Right Inguinal Hernia Repair Surgery on 10/16/15 with a Johnson & Johnson Proline Hernia System – Incision 2 inches (The op report says they thought it was a direct hernia, but it ended up being a indirect one)
Severe pain at the incision site, starting as soon as I woke up. (A “Soreness” type of pain) I really couldn’t do anything for the first 3-4 months. Going to the supermarket was a big deal for me.
Starting from the top of the incision about 1/3rd down (little over 1/2 inch) You can see and feel the Mesh Screen sticking out of me, and this is the main spot for the incision pain but I can feel it above.
3 weeks after surgery, my right testicle started to hurt “Soreness” pain, all of the time. and also started to get larger. Also at random times during the day, get a “shooting” pain from the incision, down to where my testicle is.
Have seen many doctors.Out of them, 2 different Urologist say my spermatic chord is “slightly” inflamed. And also my epididymis is 4-5 millimeters larger (I thought and feel like it is some sort of lump, but they said no) and in this enlarged area of the epididymisi s sore to to touch.
My right pelvic bone and hip sometimes gets a feeling like a “banged” feeling. Like if I ran as fast as I could toward a brick wall and slammed the bone into it…is the best way I can describe it.
Both where the screen is, and testicle always hurt, but things that make them worse (besides touching them, which does) that I have noticed that can’t be a coincidence are:
Testicle: If I get excited (erection) and it goes away right away by itself 1-2 minutes later, and about 10-15 minutes after that the testicle pain will get a lot worse. And if I were to ejaculate, it will get A LOT worse then if I did not.
Incision/Screen: If I eat (not even overeat, but the more the worse) It starts bothering me a lot more, especially when I am sitting up, in a driving type of position.
Things that make it better:
Testicle: Nothing makes it better that I have discovered so far
Incision: Lidocaine ointment actually helps a little bit. and I have had 1 shot of lidocaine and that helped a bit too. But didn’t help with the testicle.
Weeks/months would go by and I’d start to feel a little better. But all of a sudden it is like someone hits a “rewind” button, and im back how I felt months ago. Overall I am definitely a lot better then I was. It started calming down in the begining of June I am lucky enough to say. But from October to May were a so awful. I still have pain just not as bad as then . Im afraid something is wrong with the mesh that will cause me problems later on down the road. I wish there was a way to know. But then:
NEW PAINS THAT JUST STARTED 1 MONTH AGO!!!::::::
About a month ago, this new pains started that I have never had before. It is a “Burning” pain. It feels like I’m on fire. And its not just where the incision is. Its on the side of my thigh, lower back, butt, front of my leg. It doesn’t go down too too far though. Maybe like 1 foot or so, but its all around.
I have no idea if this is nerve pain, something is wrong with my spermatic cord, something is wrong with the mesh (I feel like it is just ….in wrong, but how could i know 🙁 (maybe all of the above) This whole epididymis thing is weird. I have been reading for hours about peoples problems and no one has mentioned a swollen/enlarged epididymis that is sore and hurts to the touch.(I swear it gets bigger when the pain starts after I get excited)
Sorry I am making this way too long. A wise man once told me, “Doctors just want to hear the facts!, dont start telling them a story, or you’ll start to lose them” I don’t want to lose you!!! Ahhh
So from what I explained, do you think any sort of scan would show anything that is wrong? Also I read that scans can shrink the mesh itself, and my mesh is the kind that can shrink from the heat? I don’t know…I’m sure you do.
I read something recently on another forum about this Ultrasound, which I’ll quote:
“The test was called a “Musculo-skeletal ultrasound†which was not of the testicles but focused on the landmark anatomy of the inguinal ligament, femoral canal, inguinal canal with content of spermatic cord or round ligament, inferior epigastric vessels, conjoint tendon, deep and superficial inguinal rings. Under billing, it shows as Code # 76705 and is called “Ultrasound of Abdomen†for some reason. However, I would make sure that your physician uses the terminology “Musculo-skeletal ultrasound of the inguinal area with Valsalva.†This will ensure that even a retracted hernia will be discovered due to the straining and the way that makes a hernia “pop out†or show other issues. In your case it would help at revealing any recurrence.”
Or is that only good for detecting a Hernia?
I’ll start some of the long story, and I will being a lot of details out (Yes I am leaving out details and it is still this long) If you have any questions about anything please ask. I might of left something out that I didn’t think was important, but it would be important to you to know.
Around June 2015, I started getting “a strange feeling” on the right side of my groin and my right testicle. It was just that, it wasn’t even a painful feeling at all. When I felt it, was more like “What the heck is that” At first it didn’t happen often at all. A few weeks went by and it started happening 2-3 times a day so I figured it was time to make a appointment with my Primary Care Doctor.
He examined me and didn’t catch it at first (I didn’t know what he was checking for at a time was a Hernia) On the 2nd or 3rd attempt he said “I think you might have a Hernia” if you do it is very small. I had heard of them obviously, but I didn’t know much about them at all. He referred me to a General Surgeon at the Mass General Hospital in Boston.
Did a little research about Inguinal Hernia’s before the appointment with the General Surgeon. Learned that people mainly get them from heavy lifting. At this time i was pretty surprised because I don’t and haven’t done not just any heavy lifting, not much lifting in general at all for my whole life. I was at that time and for about 12 years before a pretty active jogger though. Jogged 5-6 miles almost every day for years, so thought maybe that is how. I really don’t know and I guess it doesn’t matter now.
A month later I had my appointment with the General Surgeon. After a quick exam he said yup you have a Hernia. He went on to explain that it was a “easy” “routine” surgery and I should be completely healed in 2-3 weeks or so. I asked the typical questions like “What happens if I don’t get surgery now” He said it’ll just get worse and worse so it is better to do it now. I have had a couple of surgery’s before and since he made it sound like something so casual and like it wasn’t a big deal at all. I said sure lets do it, and set up an appointment for October 16th 2015. Little did I know at the time that was the day that was going to change my life.
Day of the Surgery:
Was calm as anyone could be. Since in my mind this was a easy/routine thing and from what I was told it doesn’t even hurt that much.
I woke up after surgery in the most pain I have ever been in my life. I was pretty surprised and I remember asking over and over “Is it supposed to hurt this much?” I really did feel like something was wrong…But…How would I know? It’s not like I’ve had Hernia surgery before, so what can I compare it to? All I know is that it hurt a lot more then I thought it was going to, and the chair they wanted me to sit in I couldn’t because it hurt so much. They gave me some pain meds and my friend took me home shortly after.4-5 days later I called since I was in so much pain. I wasn’t sure if I was just being a wuss, or something was wrong. All I know it was unbearable where the incision was. I couldn’t even wear pants. Even something brushing up against/touching it in anyway at all made it hurt so much more. So the surgeons nurse called me back, and told me to take the bandage off. This is the first time I saw it. The incision is only 2 inches long, but starting at the top going down about 1/3rd on the length of the incision, it was sticking out and extremely swollen for that first 1/3rd or so. (And still sticks out to this day, I thought it was just extra swollen at that spot, I didn’t know why, I thought to myself “Maybe he cut too deep there by mistake because I’m Skinny?” But I later learned it was the mesh itself that was/is sticking out) And that part that was sticking out was the main source of my pain. I thought something was wrong for it to look like that in that one area compared to the rest, so I asked if I could come in to my follow up appointment earlier then I was supposed to.
Surgeons says oh its supposed to look like that and started to rub it really hard. “Rub it, it’ll go away it’s good for it!” I remember screaming when he started doing it. It caught me really off guard.
All of a sudden, about 3 weeks or so after the surgery my right testicle started hurting. (And still hurts to this day) I thought something else was wrong. So I called and went in again. He said, “Oh that’s normal it’ll go away in a month” I was happy and said oh ok.
It didn’t go away, in fact I went to the Emergency room in Jan (3 months or so after the surgery) because the pain was so bad, I thought something was wrong. They thought it was a blood flow problem so they did a ultrasound of my scrotum but everything was normal.
Ok there is obviously a lot more doctor visits and pain but I have decided at the rate I’m going this will be a short book and I have made this post long enough so….fast forward to now.: My testicle still hurts, my leg/back/thigh etc feel like its on fire at times, and I can feel (feel as in not only by touching it, i can just feel it…inside of me, all of the time w/o touching it) this mesh sticking out of me, it just seems so wrong.
Thank you for taking the time to read this and answering anything that you can/have time to.
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15 Replies
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Michael – Any update on your condition? Best – DE
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Hi my name is amanda stewart I am from Fredericksburg texas did this end up being a hydrocele testicle as my husband had this same problem in late 2016. Hernia repair in 2008. He is currently having abscesses form in his abdomen containing the bacteria klebsiella pneumoniae. Any help would be appreciated!!
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Chronic Pain After Inguinal Hernia Repair (Boston)
Hi Michael, sorry to hear that you are going through this situation like so many of us. My conclusion about the whole thing is that simple, do your best to never get inguinal hernia, if it is even possible to do, cause it seems to change life in ways you couldn’t predict once you get yourself trapped into this chronic pain.
Your story is quite related to mine except the testicle pain part and that you had a wheelchair to leave the hospital, I had to walk myself a long hallway and people couldn’t believe how bad it was, “you need to walk” they said, actually it seems the ones around me still don’t understand, they keep recalling surgery from other people they know that went well and maybe it is phycological pain. I can wonder if I choose to. I just can’t believe it is happening to me when I remember how physically active I was before the surgery. Keep calm, , avoid stress, sleep well seems to be an important issue if you suffer from chronic pain. It helps.
Yesterday I had another scan and it only was able to confirm that there was no mesh resurgence. I don’t know what to do now, 9 doctors have seen me and they come to the same conclusion that everything seems quite “fine”. I had to leave work because of it. The problem is there in standby, if I lift a weight as heavy as a TV for example things get worse and takes me weeks sometimes 2 months to recover just a little depending the size of the effort. I had to avoid any physical effort since then and the social life like before is gone. Some adaptation is needed for sure. The best part is that now I have more time to contemplate life, it is new place seeing things happening and people doing their things, things I can’t afford anymore.
Take care. Get yoursef better and let us know.
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Chronic Pain After Inguinal Hernia Repair (Boston)
Excellent
Looking forward to seeing you. -
Chronic Pain After Inguinal Hernia Repair (Boston)
Hi Dr. Towfigh, thanks for checking in. I really appreciate it.
I have made the decision (was a big decision for me) to travel there to see you. I have an appointment scheduled for the first week in November.
Unfortunately I took a turn for the worse the Sunday before last, on 09/04/16, and I feel beyond stupid for this. This might/probably doesn’t make any sense from a medical standpoint. Or maybe it makes perfect sense, I don’t know, all I know is this is what happened and I don’t think it is a coincidence. I overate a little bit, (Not even that much) which was my own fault. But at the same time it’s not, because I should be able to have a few more carrots if I feel like it. Anyway, as my belly was expanding from getting “too full” I felt such pain where the Mesh is, a “pressure” type of pain, (That I have felt many times before, just hasn’t been this bad in months) it kept getting worse and worse. It felt like it was going to explode and pop out of me. Ever since that Sunday (The first 3-4 days or so after were really bad, was scared it was going to stay that bad, but it got a bit better) but I have been overall worse, like I hit a rewind button to how I felt 4-5 months ago.
Since then (Last Friday 09/09/16) I was able to get that specific MRI you were kind enough to point out in this thread, which I already sent a Medical release form to get a copy of, and I am going to mail a CD copy of it (and everything else I have so far) to you about 3-4 weeks before my appointment. (They told me everything looked remarkable, but of course that doesn’t mean that it is)
I also have an appointment with the Pain Center in a couple weeks to get a ultrasound guided nerve block of Bupivacaine of the Ilioinguinal/Iliohypogastric nerves. I actually read in the “Sages Manual to Groin Pain” that Bupivacaine was something mentioned to use, so it makes me feel more comfortable about the procedure in general (Meaning/comparing it to if the pain doctor wanted to use a medicine that wasn’t mentioned your book) But from what I read it is usually done consecutively with another shot of a the Corticosteroid “Triamciolonacetonide” I am going to ask the doctor about it. Not in a “Why aren’t you giving me this too” type of way, more like just telling him I read about it helping, and just seeing what he says about it.
If you happen to think of something else that I can do/ask/have done before I see you to save some time (and well money for me too, insurance purposes) then please let me know.
Either way thank you so much again, and I’ll see you in 7 weeks or so.
And to fromindia25:
Thanks for checking up on me. Sorry, for some reason I didn’t get a E-mail notification that someone replied to this thread when you did.
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Chronic Pain After Inguinal Hernia Repair (Boston)
Any updates, Michael?
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Chronic Pain After Inguinal Hernia Repair (Boston)
Hi,
We have not heard from you from last 5 days. Hope you had consultation with Dr Earle and got necessary help.
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Chronic Pain After Inguinal Hernia Repair (Boston)
Michael
I can send you a file you can read about Radiological Scans and Mesh detection. Also I am from Massachusetts you can Email me if you like jgens99218@comcast.net. I can provide you with a lot of information should you want or require it.
You can also Google “The Radiologic Appearance of Prosthetic Materials Used in Hernia” And open or download the PDF.
or as summarized here :
http://www.ncbi.nlm.nih.gov/pubmed/24261353
JG
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Chronic Pain After Inguinal Hernia Repair (Boston)
Micheal You are very lucky that someone will finally listen to you and might help you. Just hang in ,you gonna get better. Praying for you brother.
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Chronic Pain After Inguinal Hernia Repair (Boston)
Michael – I am transitioning in to private practice, and currently doing some locum tenens work (temp work) in MA. My current office number is 978 630-6130 (Heywood Hospital in Gardner, MA), and my number starting in October will be 978 452-5050 (Lowell Surgical Associates). Sounds like you may need your mesh removed. As has been said on this thread, there are potential problems with this, but it may be the lesser of two evils. There are options for hernia repair in the future as well if that is needed. While no surgeon can predict the future, I can definitely tell you that I will listen to you, not dismiss your complaints, try my best, and keep your interest in mind as the focal point. I’m confident we can come up with a plan. All the Best – David Earle
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Chronic Pain After Inguinal Hernia Repair (Boston)
Thank you so much
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Chronic Pain After Inguinal Hernia Repair (Boston)
Dynamic MRI anterior pelvis with valsalva without contrast.
I’ve reached out to Dr Earle. Will get back to you
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Chronic Pain After Inguinal Hernia Repair (Boston)
Thank you so much for your replys Jgens and Dr. Towfigh
So what is the exact name of the Scan(s) should I try to get here before coming to see you Dr. Towfigh?
Dynamic MRI with Valsalva of which area? The whole pelvis? Or is it called something different and/or a different name of a location?
Also, do you know the contact info for Dr. Earle? The only number I could find was for the Bayside hospital in Springfield MA, and they said he is no longer there and did not know where he is now.
Thank you in advance
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Chronic Pain After Inguinal Hernia Repair (Boston)
Hi
Sorry to hear about your story.
Yes, imaging is very helpful. MRI is my imaging of choice as it often shows the mesh. It will also assess its placement, it’s relationship with respect for the spermatic cord and other structures, and would show a hernia recurrence if there is one. -
Chronic Pain After Inguinal Hernia Repair (Boston)
Michael
Mesh is not easily seen by an imaging scan, if you can even see it at all. Judging by your symptoms it is very likely the mesh is your problem. You also likely have some nerve involvement among other issues. I suspect the mesh implant was not done correctly in the first place and if the mesh has folded or balled up then you will have to have it removed. Unfortunately mesh also shrinks and a lot of times new pains arrive later then one might suspect. You need to see a mesh removal specialist. The good news is Dr Towfigh and Dr Chen are two of the best available. Mesh removal can have negative results as well but it may be the lesser of two evils. Good Luck
JG
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