Mesh & My Nerve Damage Plan

Please read update about this product and what it has done for me.

I am now seven weeks post op, doing very well from the surgery itself and grateful for the mesh to be gone from my body.  I have had my highs and lows since mesh removal, but that fact I knew was inevitable because I have spoken to so many women who have gone before me.

One thing I have leaned in all this time of writing in my mesh complications and removal blog is that this is an ongoing journey.  Some women have been able to get the mesh out before they are permanently damaged and they are 95% better, while others struggle daily even after mesh removal at UCLA.  Why you may ask?  There are so many things that can reflect our journey and subsequent recovery.  How long it was in our body.  If it was causing nerve injury for a long period and many other factors including how many partial removal surgeries you had in the past.  The one thing I try to remind myself and other women is that what happens in our recovery can be very stressful at times, for us and our families.  However, optimism, hope and faith also has a lot to do with how well we will recover or accept that we may never recover fully.

We also need to remind ourselves that we have to find a passion to take our minds off our own situation and recovery.  I know if you have pain this is not easy.  And I am not ever saying one person’s pain is worse than another’s.  But we do have to find the joy in our daily life and continue to live well in whatever way possible.  Because of what I do here, I am always reminded that things could always be worse and that I am the lucky one because I finally have the mesh out of me and I am not suffering with partial removal after partial removal.  Those who tread the path before me, shared where to travel the safest way possible.  Even then I had to work at making it happen.

Anyway, I have had a long enough period of time to know my incontinence is severe and it is not going to go away on its own.  Therefore I have to plan the next step which is when to travel out to UCLA again and have Dr. Raz put in a bladder sling made of my own tissue.  I do not want to travel over the coldest weather period so it will be next spring.  So now that I have accepted there will not be any improvement without surgery, I can handle it better because I always knew there was a good chance it could happen.

I always try to remind women that the percentage of women who wind up with severe incontinence is small and is reflected by the repairs needed at time of removal surgery.  Mesh was cutting through my urethra and Dr. Raz completely rebuilt it.  BUT do not despair.   Think positively that it will NOT happen to you and go on with your plans for removal.  The alternative is to be damaged beyond repair if it stays in for far too long.

My other complication that remains is femoral nerve damage.  I have been frustrated and angry that I am still crippled by this condition.  I am not the only one who has to accept nerve damage issues may take a long time to resolve.  Those with Pudendal nerve damage in my opinion have it worse because they cannot just sit like a normal person.  Then again, it would be hard to choose which nerve issue you get stuck with.  Walking or sitting?  No we should not have to choose either, but then again we did not even get to choose whether or not to have this product put into our bodies because we were not told exactly what it was and the type of complications that can arise from it.

You may wonder what the symptoms are of femoral nerve damage and this is a good explanation.  http://www.nlm.nih.gov/medlineplus/ency/article/000687.htm

I could spend all my days crying over spilt milk, but that is not me.  I usually take a down day, then metaphorically kick myself in the rear and get back up and running.  So I enlisted my daughter’s help with research of what product ‘could’ help my odds of nerve injure recovery the best possible shot at getting better.  She had already helped me over all the waiting time for the surgery when the mesh could be removed and I wrote a blog about all the supplements that helped me stay well over that time and I will repost the link here in a few minutes.

Kim, my daughter found a really good article about a B vitamin that ‘may’ help me over the long haul.  I am very open minded and very positive in my thinking so when it arrived in the mail yesterday, it was added to my daily supplements.  She sent me the link to read and I am sharing it with you.

Update;  I began taking this product the day I wrote this blog along with Acetyl L-Carnitine 250 at the same time and I noticed a difference in pain level a few days later, so I kept taking it.  We had only bought one bottle to try because it is not cheap, so thinking I had enough time I told my daughter when to reorder it.  I did not take into consideration the Christmas/New Year holiday and I ran out two days before it arrived.  I noticed a huge difference in pain level and last night I took it again.  This morning I feel so much better and can walk and get up out of bed and off the couch without extreme pain.  I don’t know if it will work for you, and yes it will cost you money to find out, but if you are like me and hate pain meds and prescription drugs, I personally believe it is a wonderful alternative.  I am hoping that it will repair the nerves with time.  Remember nothing will help completely until the mesh is out.  It will only be a band aid.

This is the first paragraph of the article.

R-Alpha Lipoic Acid at the dose of 600 mg a day was able to reduce nerve pain from a herniated disc over a 60 day period, resulting in 71% of participants being able to lower pain medication. It is a well known nerve antioxidant which helps to protect nerves from stress, including ongoing pain.

This is the rest of the article. http://www.wellnessresources.com/health/articles/r_alpha_lipoic_acid_helps_nerve_pain

So I told her order it for me and I would add it to my other B vitamins and supplement plan.  I am now taking two of 300 mg a day and I will give it a six months trial.  It is an expensive vitamin but she found free shipping along with a decent price on this site.

http://www.vitacost.com/vitacost-r-alpha-lipoic-acid-stabilized-rala-300-mg-60-capsules

So as always I share with you what I am going to do/try/are doing to try to give myself the best possible chance at recovery.  You must choose for yourself what you do and make sure if you take any meds, you must cross reference with any supplement.

It has been just over a year since my mesh removal at UCLA and like everyone, I had hoped my nerve damage would heal.  But sadly it has not.  There are days when it is so bad I spend more time on the couch than getting anything done and I know I have to choose what I do because I cannot put pressure on my right leg for more than a few minutes at a time.  If it were not for the lipoic acid I would not be able to do half the things I do and I am very grateful for the relief it offers.  Now there is a better one.  It is double strength which really helps me.  Normally I take one a day but when it is really bad, I up the dose.  I will never be pain free but I try to live drug free and be able to function.  I have had far too many bad prescription drug reactions in the past and cannot risk more.  I hope this helps someone out there who feels the same way.  Swanson has the double strength on line.

Update September 2014.  Next month it will be two years since my mesh removal.  My nerve damage seems to be permanent and I have learned to cope without the use of prescription pain medicines.  However it takes a lot of diligence to continue taking so many supplements as like everyone else I get really tired of doing it.  Not long ago my daughter told me about taking more of a B vitamin supplement called benfotiamine and suggested instead of the 150mg a day, I take the same 3 times a day.  So I began doing it along with a drop down of 100mg R-Alpha Lipoic Acid three times a day and the two together has made a remarkable change for the better.  I did make the mistake of trying to lower the lipoic acid further but wound up paying the price.

I never stop trying to find the right balance that works for me and I know it is a real chore.  I have found out that at times a nerve seems to become inflamed without any reason and can cause the old problems to kick into gear, so once I realize it is happening I find 400mg of Ibuprofen, one time and rest including overnight I am able to clear it so that I can cope with the normal pain.

Since the day the mesh sling went into me, I have struggled with more than one issue, but I never give up.  To read about the study on benfotiamine here http://www.camcommons.org/benfotiamine-as-an-evidence-based-cam-treatment.html

These are other blogs you may want to read.

Pudendal nerve damage. http://meshangels.com/2012/10/614

My wellness plan of supplements.   http://meshangels.com/2012/09/mesh-my-wellness-plan

10 Comments

  1. Peggy McAllister

    I currently use supplements to control my pain and found a wonderful herblist in auverdic medicine to help. the alpha lipoic acid helps a lot as well as the mega benfotiamine. I have a bladder sling TO and have groin leg pain and recurrent UTI’s. I have been on 50 mg macrodantin every day for 2 months now and have noticed increased pain in my hips and shoulders so wonder if this is from antibioitcs? I have just seen my 8th doctor a urgogynecologist and he has put me on Bethanechol 25 mg 2x a day to increase the bladders ability to empty so I am going to try reducing the antibiotics and eventually to discontinue and see what happens. He says the sling was not placed correctly and is too far forward. he wants to go in and remove the portion just behind the urethra. if the bethanechol doesn’t work. has anyone had good luck with just a partial removal?

    Reply
    1. Donna Blumenthal

      Hi, just read your trouble with manyon going bladder infections. Take Cranberry capsules every day. It stops the bacteria that causes them to keep going. Take them even if you don’t have a infection Another product Biotics Cytozyme KD helps you empty your bladder better also. One more thing there is a more hompathic remedy called cystagia. You take like 1 dropper full 3 times a day.

      I am going to get a report to see if the dumb drs put mesh in me. This hole deal is frustrating if I have had this in me for 7 years despite many dr visits and total imcompitance. I never signed a conscent form to have this done to me. It is a medical disgrace!!!!!!!!! I hope things improve for you girl.

      Take care,

      Donna

      Reply
      1. lavalinda

        Donna I tried some of the things you write about and they didn’t work for me. Marshmallow root did. I am so afraid for you because more than likely you are yet another victim of mesh.

        Reply
  2. lavalinda

    Please do not have just a patial removal. First it won’t work and I know this because I had one nine weeks after the sling was put in me and second the remaining loose mesh will begine to move and cause major complications. Suppliment only really work if you get it all out. Go to UCLA or if closer go to Dr. Twiss in Tucson Arizona. He completely removed the mesh off a lady who helps me.

    Reply
  3. Peggy mcallister

    thanks for the email for Dr. Raz I emailed him my quest. and he answered within 24 hours ! he said the same as you total removal will help my leg pain not the partial. I am cosidering making the trip to CA. Has anyone been to Dr. Miklos? I live in NJ so that would be closer for me.

    Reply
  4. Angela Sackett

    I have also seen Dr. Raz. I am having surgery January 3rd. I would recommend him to anyone. He clearly has a superior knowledge and experience with these meshes. It has taken 2 trips already just to get ready for surgery and it has been worth it. Don’t mess around with one more doctor who may make the situation worse. That’s my recommendation to anyone!

    Reply
  5. holly

    I feel like I have found an answer after 8 years! I had a hysterectomy and a bladder sling almost exactly 8 years to the day. I have had terrible hip pain for the last 8 years but this years is the worst. It was only on the right side up until this year. Now I can barely walk some days, other days I feel pretty good but everyday I have lost my range of motion. I cannot squat down or lift my legs more than 45 degress ,,,the pain in unbelievable. I have been to physical therapists and orthopedic surgeons trying to find the cause of this. One Dr. decided I had femroacetabular impingment and suggested hip surgery…OMG! As soon as the Dr. knows I was a dancer they blame it on wear and tear on my hip joints but MRIs show not nearly enough damage to cause this severe pain and loss of motion. I have tried to call Dr. Raz but there is no answer..maybe because it is the holidays. I hope to one day go see him and find out if it is this sling…I believe it is as I always tell people I feel a pulling on my nerves and the pain is intense. I do not have insurance but I will try to get it and hopefully it will be covered. Any advice as how to proceed would be appreciated…Thank you for being here! Everyone thinks I’m crazy..I know the pain is real! I have 2 small girls and hope to one day do cartwheels with them. The bladder sling did give me back a life to be active because I was suffering terribly from incontinence but it also added too much pain.

    Reply
    1. lavalinda

      They are probably closed for the holidays but hang in. You will get the answer you want and need. There are also two women surgeons wh work under him. I know EXACTLY what you are going through and it may take you some time to get your life back. Do everything you can to get out there. Remember the pain IS REAL!

      Reply
  6. Brenda

    Im about 4 months post removal of mesh.I have to carry a cushion wiyh me. I can’t sit..to much pain.

    Reply
    1. lavalinda

      Brenda I sent you a note.

      Reply

Leave a Comment

Your email address will not be published. Required fields are marked *