[Arkj93]

I should add that I did NOT have any hernia repair of any kind performed after the mesh removal. Dr. Belyansky said he did not see a hernia there so he opted to leave it. He did say there is a small risk of re-herniating (about 4%) but I was willing to take that risk in order to be mesh free. This Friday will be 4 weeks post op for me and I’m feeling really good. At around the six week mark I am probably going to start exercising again. There are still some minor pains but each day is better than the last!

[Arkj93]

Hello everyone!

Thank you all for checking in. My apologies for the late reply, I have been recovering the past few weeks and spending time with my family. I am happy to say that I am doing very well post-removal! Dr Belyansky is an expert surgeon and he and his team took amazing care of me. As far as the surgery went, I am told it took about 1 and 1/2 – 2 hours to complete. When I awoke from surgery there definitely was quite a bit of pain from the robot working inside and some difficulty urinating (which ultimately passed). I spent about five days at the Hackerman-Patz house across from Anne Arundel Medical Center before returning home. Dr Belyansky was able to remove almost all of the mesh except for a small sliver that was too close to the femoral vessel, and a portion of the genitofemoral nerve was removed as it was attached to the mesh. I was definitely nervous about the removal surgery especially since I had read mixed things on the internet, but I must say I am extremely happy with the results. No longer do I have any foreign body sensation in my groin and the nerve pain is gone. I finally feel like my body is healing itself from having the mesh inside for so long. For anyone who is considering mesh removal, I cannot recommend Dr Belyansky and his team enough. They were professional, courteous, empathetic and helpful and took care of me the entire time. Although each case is different, I feel that the outcome is best when choosing an expert surgeon such as Dr. Belyansky (or someone else who has removed a lot of mesh)!

If anyone has any questions for me please let me know and I will try to respond as soon as possible.

Happy Holidays!

[Arkj93]

I agree with Merritt, great work Dr Brown!

[Arkj93]

Hi Merritt,

Good luck to you and please keep us updated. I’m not sure what the process is like but if I were you I would be fighting like hell to have the VA approve the case. There are of course other options that could help with the bills too. Here is a link to a short article about medical debt:

https://www.npr.org/2019/02/14/694670747/rx-for-medical-debt?utm_source=facebook.com&utm_campaign=npr&utm_medium=social&utm_term=nprnews

Whatever happens, just don’t give up. Just be confident that you will be able to find the right doctor who will acknowledge your situation and be able to give you your life back. You’re already on the right path by coming to this forum and reaching out to Dr Brown.

[Arkj93]

Hi,

Yes that article was written about our own [USER=”2608″]dog[/USER], he was very active on this forum for a while about his positive experience with Dr. Brown. If you want, you should be able to look up his posts. Dr. Brown is a very talented surgeon who performs no-mesh surgery and I believe he is capable of removing mesh openly as well although from what I have heard, removing mesh with the open method is a bit tricky. That being said I think it would be in your best interest to at least call his office and set up a consultation. Make sure to explain your situation with the VA and I’m sure his office would be willing to help you.

In my opinion, it is a shame and should be criminal the way the VA has treated someone who is in your condition. There is absolutely no one on this forum who will tell you that what you are feeling is not real and that it is inside your head and that goes for the doctors on here as well. It is unfortunate that you had to go through this for 15 years just to find answers to your problem. That’s why I am confident that in the right hands you can get your life back on track.

Good luck and please keep us updated on your progress.

[Arkj93]

Merritt,

I see that Jnomesh and Good intentions both chimed in here as I thought they would. It is clear to us that while your situation is very dire, you may not be getting the best care from the VA that you need. We have seen this kind of thing on the forum before, the VA is a government run medical system with hundreds of thousands of patients and that system is clogged with lots of red tape. Mesh removal is a risky surgery especially when performed openly so we are just trying to convey that you need a competent doctor to perform it. Although it seems like your case is severe enough and that the mesh is definitely causing your pain. That being said the doctors on here won’t be able to make a diagnosis unless you are willing to see them in person. If I am correct, you may be able to set up cash payments with Dr Bill Brown in CA he definitely should be able to help you. The VA is great for some things but I’m afraid not in extreme cases like yours where their doctors have already caused you enough damage and suffering.

Good luck on your journey to recovery.

[Arkj93]

[USER=”2967″]MeshMangledMerritt[/USER] I am so sorry to hear of your situation. It sounds like you have been through hell and back, I can’t even imagine what you must be going through.

I’m going to be honest with you, it sounds like you need to get away from the VA doctors as fast as you possibly can. I know that this may be hard to hear, but they are not going to help you. You need to find a doctor who specializes in hernia mesh cases and it sounds to me like they are just giving you the run around. I’m hoping that [USER=”935″]drtowfigh[/USER] or [USER=”2580″]DrBrown[/USER] will be able to chime in here, but it seriously seems to me like you need to have your mesh removed. As someone who has dealt with the pain due to an entrapped nerve I know it can be excruciating, but your situation sounds far worse and you need to find the right care.

Depending on your geographic location, you may consider Dr Igor Belyansky in Annapolis, MD or Brian Jacob in NYC. Dr Brown and Dr Towfigh on this forum are both located in California, but again I would recommend you see a specialist outside the VA asap, because they are the only ones who are going to be able to help you. I’m sure some of the other members of this forum who have dealt with their own problems after mesh will respond as well.

As far as mitigating the pain goes, I’m sure you have already tried conservative measures such as ibuprofen and ice/rest. The problem is most likely in your nerves as you said so in the short term you may want to find a doctor who can treat nerve pain or possibly inject the nerves. I have been prescribed gabapentin and I have heard that the drug Lyrica can help as well with nerve pain but hopefully you at least have a primary care doc you can work with while you try and find someone who deals with mesh problems.

Again I am truly sorry for your condition but just know that this problem CAN get better if it is treated by competent doctors/surgeons who will not give you the run around and deny your pain.

[Arkj93]

Sounds like an entrapped nerve. Was your mesh placed openly or laparoscopic? The nerves which can be damaged due to mesh repair are the ilioinguinal, iliohypogastric, genitofemoral and possibly the lateral femoral cutaneous nerve. If you do a google image search you can find pictures of the areas that those nerves supply sensation to. I had a very similar situation happen to me and now I am getting close to having the mesh removed.

[Arkj93]

Hi Mariel,

I am sorry to hear of your pain. Generally speaking, it takes about 6-12 months to fully heal from any major surgery, so at two months things are still pretty “new” in terms of what you’re feeling and should improve with time. That being said, you may be experiencing some nerve pain if it feels like a shooting or burning pain going down your leg or in your groin. For any swelling and inflammation you can try taking an nsaid like naproxen, which may help. Another thing I have found helpful is icing the sore areas or even taking an ice bath. In terms of strengthening the muscles I would recommend anything low impact like walking or swimming, planks should be ok but I would double check with your surgeon. I believe Dr Towfigh said on this forum abdominal exercises were ok. Anyway if your pain is severe do not be afraid to go back to your surgeon or get a second opinion. There are alternatives to painkillers such as gabapentin which may be useful for nerve pain, but you will have to check with your doctor first.

Good luck on your journey to recovery.

AJ

[Arkj93]

Hi Ashley,

I am sorry to hear of your problem. Depending on your geographic location, you may also consider Dr Brian Jacobs or Yuri Novitsky in NYC. I believe Dr Novitsky performs robotic removal of problematic mesh in the abdomen and Dr Jacobs is well known in the north east for removal as well. The one thing that is for sure is that you do not want an inexperienced surgeon removing your mesh, because it can be a complicated and tricky procedure. In my experience, I’ve had to contact my insurance to see if any doctors are in network, but many people will say that they had to pay out of pocket for their removal surgery.

Good luck with your recovery.

AJ

[Arkj93]

Two months isn’t really a long period of time when considering that you are recovering from a major surgery. Realistically speaking, mesh removal will not instantly cure all pain especially when the mesh was probably causing damage to your nerves and tissue and an inflammatory response in your body the entire time. Most major surgeries take about 6 months to a year to fully heal from, sometimes even longer. If you are seeing gradual improvement I wouldn’t worry, but that being said you can always ask your surgeon what he or she thinks.

[Arkj93]

I’d have to agree with Good intentions here as I was one of the ones fooled by the optimistic words of my surgeon. I had my mesh implanted over a year ago and started have problems almost right away, mostly nerve issues. I plan to have my mesh removed but for anyone considering a hernia operation I would strongly suggest finding a surgeon who can perform a pure tissue repair. Most hernias are manageable and you are not doing any harm by just waiting and doing some research first. I often think to myself if I could go back to when I had my hernia and before I got the mesh I would. Sure the mesh might reduce the chance of recurrence but for people with chronic pain due to the mesh it can be devastating.

[Arkj93]

I hope that Dr Kang can come to the United States soon and teach his methods to other surgeons who are interested in pure tissue repair. As someone suffering from chronic pain due to mesh I believe it is imperative that patients can get access to other types of hernia repair that don’t involve mesh. 12k hernia repairs is A LOT of surgeries and it appears that Dr Kang has excellent results with a small incision and minimal pain afterwards. However for many people myself included the cost of travel is far too great of a barrier to even consider seeing him.

[Arkj93]

Hi [USER=”1448″]rc009[/USER] and for anyone else who is interested,

On Friday I had my consultation with Dr Earle. He seemed eager to help, and said that the mesh removal is feasible, although he wanted to try me on his 3-week anti-inflammatory protocol first to see if that helps. So he has given me a six day treatment of Medrol dosepak (methylprednisolone) and after that I am supposed to do 2 weeks – twice a day of naproxen 500mg for the pain and inflammation. So far I haven’t noticed any bad side effects from the steroids except for a little bit of stomach irritation (helps if I take it with food), however it doesn’t seem to do much for the nerve pain. Prior to seeing Dr Earle I was taking gabapentin 3x a day for the nerve pain which helped a lot initially but then I began to have some really bad side effects from it, i.e. mental fog and extreme lethargy which was interfering with my work and daily life. I have since stopped the gabapentin but the nerve pain has returned. Dr Earle said he would see me again in six weeks and we can discuss mesh removal more if the steroids/anti-inflammatory meds don’t work. In the meantime, I have also set up a consultation with Dr Yuri Novitsky in New York for July 9th. Dr Novitsky was recommended to me by a local surgeon in my area who said if he had a hernia or complications that’s who he would go to see. So at this point I am still a little discouraged that things are not moving as quickly as I’d hoped but I remain optimistic that soon I can get this behind me.

Thanks everyone who reads this and who offers their support.

AJ

[Arkj93]

Hi Colrie,

I am glad to hear of your recovery. If I had the choice to go back and have my hernia repaired without mesh I would certainly make that choice. Surgery of any type can be intensive and the recovery process must not be taken lightly. So remember to rest and not overdo it! And also try to manage your pain.

Good luck and be well.

[Arkj93]

Hi Amanda,

I am not a doctor, so please do not take my words as medical advice, but have you had a previous hernia surgery? If so, what kind of hernia was it, and was it repaired with mesh? Nerve pain can feel like many different things but usually it feels like a burning pain, tingling, or numbing feeling. As I understand it, the ilioinguinal nerve innervates the pubic area and the genitals while the iliohypogastric innervates the lower part of the abdomen, and the genitofemoral nerve innvervates the inside of the thigh. A “deep ache” as you describe it could be many different things (muscle pain, tendonitis, general inflammatory response). That is why it is important for us to know what kind of surgery you had and if mesh was used. Also, from what I understand neurectomy can be a risk and can sometimes lead to a neuroma which causes more pain. Neurectomy is traditionally only used when the nerve is caught in the mesh and there is no other way to solve the pain issue. As I said though I am not a doctor so hopefully one of the other doctors on here such as Dr Towfigh or Dr Brown can answer that one.

Be well.

[Arkj93]

Dr Novitsky is fairly active on Twitter and if you look him up by name you should be able to find his posts. He actually posts a fair amount about mesh removals and it appears he also will perform different types of tissue repair at the patient’s request. He also seems to be active in discussions with other surgeons. He was recommended to me by a local surgeon in my area as one of the top hernia doctors in the Northeast. I would even go see him if it were more convenient but right now I am sticking with Dr Earle in MA who I have a consultation with coming up this week. I wish you luck in your search to find the right doctor.

[Arkj93]

Hi @mitchtom6,

I am sorry that you’re going through pretty much the same thing that I am. The gabapentin does help (for me) to relieve some of the nerve pain. I have been told by my doctor and my surgeon that it takes about 3 weeks to go into full effect. That being said I don’t believe it is a permanent fix, I equate it more to being a band-aid being slapped over a gaping wound. I have my consultation with Dr Earle in MA on Friday so I am looking forward to that. The surgeon in my home town wants to wait at least 3-6 months before considering mesh removal but I honestly don’t believe it can wait that long. If the mesh is going to have to come out (which in my opinion it has to) then I want to get it over with as soon as possible. I wish you luck in your journey to become pain free and I hope you find the right surgeon soon!

[Arkj93]

Thanks for sharing this video. I like how John Oliver and his team try to add some humor to the issue but there is some seriously disturbing stuff going on with the medical device industry. The fact that even some doctors and surgeons are kept in the dark about the approval process the FDA uses for new medical devices blows my mind, but honestly I am not surprised. In the video when the woman talks about having the vaginal mesh in her and what it feels like, that is EXACTLY how I feel each and every day when I wake up, until the time when I am finally able to fall asleep at night. Pulling, burning and tugging sensations, sometimes shooting pain, and the feeling of sandpaper inside me. As a patient it feels like I am my only advocate. My wife, family and friends are sympathetic but only survivors of a bad medical device implant can truly understand what it feels like to have something implanted inside you go so wrong. The FDA needs to open more avenues for patients to report their failed medical device implant and companies need to be held responsible for the grief they are causing people. I wish doctors and surgeons would be more sympathetic towards these people and realize what their patients are telling them is true and that no, the devices they are implanting in people are not always safe (and often not tested). In a lot of cases us patients feel that the surgeon removes the implant is our only hope and only the removal surgeons see the damage first hand that these devices can actually cause.

[Arkj93]

Hi Jnomesh and Victim73,

I appreciate your replies and your concern unfortunately I believe the mesh removal is my only option at this point. Luckily I do not have any pain or swelling in my testicle but I do have a cutting/burning pain near my hip and in my lower abdomen above the pubic area that is intense and will not go away no matter what I do. At this time my situation feels urgent and I am just counting down the days until I can see my surgeons of choice (one is local and the other is Dr Earle in MA). To Jnomesh and Goodintentions specifically, you two seem to be the veteran “troopers” of this forum and I appreciate your advice. I have no idea how you both put up with the mesh inside you for so long as it has been just a little over a year for me and it is already driving me crazy and drastically reducing my quality of life. Without your stories of successful mesh removal I don’t think it would be possible for people like me who are suffering in pain to have hope that things will get better.