Mesh & Leg Pain

Yesterday I posted a blog about the realities of my life, not the perceived reality that others see. For the past few days I have actually gone back to my millinery career. This was a huge step for me because I had to reteach myself so that I could sew again and the last hurdle was to sew with a machine over millinery wire. I am an experienced designer and this was easy before the drug gentamicin took its course. You can’t make hats without being able to do it so I persevered. I will give you a link at the bottom of this blog to show you the first hat I have made in a long time.

When I design and I am in my creative world I have to stop and eat and take my supplements. When my mind is not creative, I think of these things and take them on a regular basis. However, I have to refill my supplement box for a whole week and when in creative mode, it goes on the back burner for one or two days. Then I realize by the depth of my leg pain what a big mistake that was. That happened to me just yesterday.

I had missed this one supplement the day before, then most of yesterday until reality caught up with me. Then I could not stand on my right leg, the pain was so intense that it bounded from my hip, groin, thigh, calf and under my right foot and toe. Burning agonizing pain that made me want to throw up and scream out. I had to stop everything, take this supplement and fall on the couch with a microwave hot pad trying to ease it to a more manageable level. I wound up taking another of these capsules before bed and by this morning I could walk again and although never pain free I could stand in the kitchen and make morning tea and feed my dog. If I do not take this product I am on the couch in miserable pain.

I wrote about my nerve damage plan soon after I had mesh removal in October 2012. Like all women I had hoped that mesh removal would give me back my life, but the mesh had been in my body for two years seven months, shrinking and pulling on my delicate nerves and muscles. Removal gave me instant relief of the feeling that someone had pulled a tourniquet around my upper thigh and pulled it too tight. It took several weeks and I finally felt more benefit of that removal, but after a long time I realize I was permanently damaged. I had however been able to stop using my walker and was down to a walking stick, but I could only walk short distances. My doctor gave me a permanent disabled sticker.

Disabled! A word I had never used to describe myself. I have always been a busy person doing things most women would never dream of doing. I built a house with my husband after we had only been married five years and we continued doing unusual things throughout our married life. He died when we were married thirty-five years. I loved doing it, literally doing everything with him. I worked beside him setting up the concrete base of our home. Plumbing and framing with him. Climbing on the roof to roof the house in the hot Texas sun. We did it so that we never had to worry about a house payment in the future, so we paid cash for materials and used our own labor. This was because my husband’s job on offshore drilling rigs was up and down. No retirement fund in the future and he was seventeen years older than I was and we were both thinking ahead. We needed to keep a roof over our heads regardless of what the future held.

During my thirty-five year marriage he taught me so much and I taught him things I knew. We both grew up without much money and we were both raised frugally. Although we could have been described as an odd couple by others, but we were in total sync with each other. I have learned that is such a rare thing. When he became ill later in our marriage, things changed for us and his long drawn out illness of first prostate cancer and then his death of dementia was a difficult thing for my daughter and I to handle. My daughter and I struggled with so many issues during that time that no one unless you have a loved one with dementia can understand. Paranoia and craziness is rampant and yet to the outside world he looked normal and would often act normal. It was during those awful years I discovered what friendship was all about. They all left and so did family. This is why I want women to understand that all you are left with is you and perhaps someone who truly loves you IF you are lucky. That is why you have to find your own strengths and figure out on your own how to move forward.

Back to life now. I am lucky to have a brilliant daughter who also loves me enough to search for things to help me deal with my mesh injuries. She learned a great deal back in 2008 when she took an antibiotic for what was presumed an infection. The diagnosis was wrong and the antibiotic she was given, Cipro did major damage. Five days and eleven pills of Cipro left her in agony and she could not walk and couldn’t sleep for leg pain. You any be thinking that this drug has never done this to you and you don’t have any issues with it. BUT if you have UTI infections you more than likely have taken this drug many times and even though you think you have not had any reactions, you may be surprised this drug does damage as it builds up in your system. This drug never leaves your body and the more Cipro you take, the more the chance of side effects you are not aware of.

To read ALL of the ‘rare’ side effects of this or other drugs in this family, read this.

One of those ‘rare’ side effects is pain in arms and legs and involuntary quivering in the legs. For the latter, doctors will prescribe you a new drug for what they describe as restless leg syndrome. You may be totally unaware of why this has happened because you are dealing with your mesh injuries. Pain in the legs was so bad for my daughter and she could not sleep for the agony it caused. She had to go to great lengths to get herself back on track and that included a lot of experiments with supplements. She had been busy building our new house along with me, and it was quite a shock when this happened to her. That year a hurricane hit us, but thankfully we are far enough from the coast that we had minimal damage. During that time our water well tank burst a major leak and she had to change it out, even while battling the side effects of this drug. Without doing it we didn’t have water. My daughter is an amazing woman who is so much like her father and we had been building a new house together.

So when she was searching for answers to her own continuous issues after Cipro, she found out about Alpha-lipoic acid. If you have not heard of it you may not know that this product could really help with your leg pain and reduce your chance of taking pain prescription drugs, ibuprofen of other products than can cause liver issues.

I am going to give you the link, but first this is what the first paragraph says. Alpha-lipoic acid is a vitamin-like chemical called an antioxidant. Yeast, liver. kidney, spinach, broccoli, and potatoes are good sources of alpha-lipoic acid. It is also made in the laboratory for use as medicine. Alpha-lipoic acid is used for diabetes and nerve-related symptoms of diabetes including burning, pain, and numbness in the legs and arms. High doses of alpha-lipoic acid are approved in Germany for the treatment of these symptoms.

How and why does it work? You can read that link and basically guess, but I can assure you it works for me. Without it I am a mess. And it still works for my daughter who must take it regularly or her leg issues come back to haunt her.

Where to buy it. Well, the best place is on line for two reasons. It is hard to find locally and it costs more. This product is not cheap and if you buy on line, you can shop for deals such as free shipping or buy one, get one half off. So I took photos of two brands. The one on the left is by Swanson vitamins. I was taking 2 of these per day or one a day if pain was not severe.

Recently she found a great deal and purchased the one on the left.  So shop around and save money.

I hope this blog will help some women and change their life for the better. If it does it is worth all the time and effort I put into it. But be aware that if mesh is still in your body, even if you had a partial removal, nothing will help. The mesh will keep shrinking, pulling and moving and your pain will worsen.

I also take Benfotiamine for nerve damage and pain and you can read more about it here.

This was the original blog I wrote about this product, soon after my mesh removal.

My first hat design in a long time. Now I am happier.

10 Comments

  1. Chastity

    Linda,
    I have emailed you once before and I’m sorry to bother you I just wanted to ask you a question. I wasn’t able to go see Dr. Raz in jan. Of this year. I have called to reschedule with him and got an appt in feb. I have gotten sicker and changed my appt to sooner but Dr. Kim was the only one that could see me. I have ams mini arc sling and anterior and posterior surgery . Do you think she is good and do you think that if she feels like it would be a challenge she would refer me to Dr.Raz..My appt is May 8 and I am so scared I kind of cancelled my appt. back then partly financially partly terrified to death I trust you and want your opinion. I have horrible nausea do or did you experience this. I’m also afraid something could go wrong and I could be worse off. Please give me your opinion:) I know your not a Dr. But I know you have been through a lot and I do trust your opinion in what to do and would you get it out at all cost or leave it in and deal with the pain as along as you could I am not as bad as you though.

    Thank you so much chastity

    Reply
    1. lavalinda

      Chastity, Dr. Kim is an excellent surgeon and I am sure she will be able to remove your sling. If she runs into any problems she will call in one of the others and maybe Dr. Raz. They have been doing this for awhile and have helped hundreds of women. Don’t fear or give yourself doubt. Go with the flow and I have no doubt your life will improve. Say hello to her for me as she knows what I do. I wish you well and you can post when you are home. XX

      Reply
  2. Allynn

    This site is so informative! Sure wish that I had done some research before I had surgery. 🙁 Six months ago I had a partial hysterectomy with a bladder sling and urethral support. Immediately following surgery I could not urinate on my own and had to go home with a folley catheder. I had 4 failed attempts to void on my own . The catheder remained in for 4 weeks . I was then told by my Dr. that I had nerve damage from the vaginal hysterectomy. I was shown how to self cath and have been doing so ever since. My bladder has made a lot of improvements, I can feel when my bladder is full and can urinate on my own, but I still cath 2-3 times a day and have 50-100 cc of risidual urine. My Dr. now wants to clip/remove the urethral support. I am so scared, and not sure what to do. Do you have any suggestions? I would appreciate any advice. Thanks!

    Reply
    1. lavalinda

      Allynn I hate to say it but you should very much be afraid. Your story is like mine was. I had a catheter 9 weeks and couldn’t void and then my doctor cut a small piece out of the center. Huge mistake. I still had to self cath for many weeks and my bladder never fully emptied. Please start taking march mallow root. It is a herb and it saved my life until Dr. Raz removed the rest of the sling. Get it out one time not several. Go to see a doctor who specializes in this at UCLA. The women there are excellent surgeons and you won’t have to wait so long.

      Reply
  3. Allynn

    Thank you for your reply, I so appreciate it. I am so upset about all of this ( as I know you are too familiar with the same feelings). I’m just not sure my insurance will cover me going outside of the carrier. Forgive me for bothering you once again. Should I be asking my Dr. if he could remove the urethral support completely? Would you be willing to private email me? Please? I am just at a loss of what to ask or say to my Dr. in regards to him wanting to go back in to clip/remove it. I am scheduled for May 22. Of course I can cancel if I chose to. I get so intimidated when I am in his office. Thanks 🙂

    Reply
    1. lavalinda

      Allynn I already did. Check your email.

      Reply
  4. Joyce

    I had the sling surgery the end of 2010 and I have gone down hill ever since. Around three years ago I told my PC that I wasn’t suicidal; however, I no longer wanted to be in this body because the pain is more then what most humans can deal with. I have dealt with many different types of pain in my life from giving birth to a child at home which I would do all over again in a heart beat!!!! Finally my surgeon that did the surgery has moved back and I saw him last week and is now ordering my surgical records because he knows I am not someone to cry wolf. This man has a good heart and soul and I am sure he will do what is in his power to make this right. I have always been one to help instill hope into others and now I find myself holding on by a few strings. I am sure that many of the other ladies that are going through this TRUE nightmare understands where I am coming from. One of my big concerns is knowing that the big corporation own most hospitals and in someway are connected to the companies that make the mesh slings. I know we have to select our so called battles and I just don’t have the energy or strength to see this one through. I am thankful that you and your daughter have each other in a loving and compassionate manor. Would you know what the percentage of positive out comes are with having the mesh removed? I know I would love to have the mesh removed I just don’t know if my body is strong enough anymore because dealing with this level of pain for over three years has brought me to almost the end of my rope. I do thank you and your daughter for all the research you both have done for the needless suffering of so many women. At least from this day forward I will do my part on speaking up for myself and others in connection to bringing more awareness so others will not go through this type of hell.

    Reply
    1. lavalinda

      Joyce I just spoke to a woman Saturday who was left to die. Dr. Raz removed her mesh and she told me she celebrated a birthday on Saturday, two years mesh free and living life. So NEVER give up! You deserve to live.

      Reply
  5. beth

    Here I am.. still reading.. still learning from My mesh angel..
    I am 2weeks and 4 days post op from complete mesh removal from Dr.Raz. I feel so much better. But I’m weak, my right hip and leg hurts. Its not the same terrible mesh pain, but I do say it hurts. I know I have alot of healing. I have to be patient. 4 years of my life has been consumed by mesh hell…
    I have pain medication, but Ive made it this far, I have only took a half of pain pill since my surgery, I took half fir the 6hr flight home.
    I feel like I need an IV for vitamins and supplements.. I’m making my list and will be buying tomorrow.
    thank you linda.

    Reply
    1. lavalinda

      Beth this is very normal because removing the anchors extremely difficult. But as time goes on you will feel relief. It is a slow process of healing. Yes you do need vitamins and R Lipoic Acid and Benifotiamine will help heal the nerves.

      Reply

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