In my world listening to other women over the phone or reading what they tell me has happened to them is key to helping other women first understand a diagnosis they have been given and then what they can do about it, if they wish to. The latter is the most important part of this blog. I do not want to tell any woman what she must do or how she must feel. All I want to do is to inform women what may be going on with them because of bladder sling mesh complications, and let them decide what can be done to get them back on the road to a better life.
Once again I remind you that I do not have any medical background and do not pretend I do. I am a woman that many women confide in because they do not know what they can do to help themselves. So rather than just give up, they ask me if I know of other women who are having similar symptoms as they are.
Last week another woman contacted me saying she had NEVER had any of these symptoms before bladder sling surgery and after numerous tests, she had been told she needed back surgery and mesh could not possibly be the cause of her symptoms. I have heard this so many times by now and it is becoming a broken record. The other diagnosis is ‘you need hip surgery’. I have no doubt I would have been told the same had I not run out of money and could no longer afford test after test. I had been told by the surgeon who put the mesh in me, that I must surely have had my symptoms before the sling was put into me. I became so upset over this and that was the end of my relationship with this doctor. Before the mesh sling I lived a normal life doing so many normal things and I loved my life. After surgery slowly but surely, my life went to hell.
So when I read that a woman mentioned she had been diagnosed with neuroma after one of her partial mesh removal surgeries, I did not look it up due to the fact I had been spending several days trying to get information to help women with the costs of going out to UCLA for removal. You can read that blog after this one. So I mentioned it to one of my wonderful helper ladies and she looked it up and told me a neuroma was a tumor. (Thanks as always Lisa) That shocked me because I thought ‘what kind of tumor’. So I finished my Mesh Removal, No Money blog and then looked it up. I found this link with the definition. http://en.wikipedia.org/wiki/Neuroma
As always I had to stop and rest and that gave me time to think about it. I wondered could it be linked to a piece of mesh that had become entwined with a nerve? This morning it would not leave my thoughts so I emailed Dr. Raz and asked this question. Please note I do NOT email him with stupid questions all the time but I felt this had to be answered by someone who understood nerve issues due to mesh complications.
To Dr. Raz. If mesh is stuck to the spine, could that be considered or cause a neuroma? Would the translabial ultrasound or other ultrasound see it is mesh? Sorry to bother you.
His answer which came back within the hour. If the pain started after a mesh insertion, it is possible that the mesh encased a nerve causing a neuroma. She needs an MRI of the pelvis and a translabial ultrasound to find the mesh. And he added; If the pain started after the mesh, must be indeed the mesh.
So what now? Well, I truly do not know any other answer but your best bet is to make an appointment at UCLA for consultation and get the translabial ultrsound done while there. As far as I know they are the ONLY hospital who does that test to find mesh in your body. The other test, an MRI you can have done before you go out there and take the test results with you to see either Dr. Raz of the other women surgeons. You can see the link about them if you look to the right hand side of this blog.
Many of us have had mesh in our bodies over a long period and as it shrinks and folds it can hang up in your nerves and muscles especially after a partial removal surgery has been performed. I too had a partial removal, nine weeks after it was put into my body. I did so because I had not been able to urinate for nine weeks and I was desperate to be normal and remove the catheter because of infections. I still spent weeks doing self cath to make my bladder work again, but knew it did not work as it had before the implant was put inside me. However, the tests before my removal surgery at UCLA showed I was right all along and my bladder was ‘not small’ as I had been told by the original surgeon when I complained. I knew it was not true because I had been quite normal before this implant surgery, so I left my doctors office feeling quite disgusted.
So now over two years and almost nine months since that fateful surgery, and now it has been removed I am stuck with continuing leg, hip, back, groin and thigh pain which Dr. Raz tested me before surgery and said it is femoral nerve damage. Will it lessen over a period of time? I truly don’t know. I have been doing some B Vitamins over all this time and I decided to look up more about these vitamins we need in our body. This may help you understand them so that you can try to help yourself.
Types and importance of B vitamins http://www.livestrong.com/article/483756-do-b-vitamins-help-the-nervous-system
Types of B Vitamins that may help heal damaged nerves. http://www.livestrong.com/article/250368-what-vitamins-help-nerve-damage
Like you, I clutch at straws. I have spent all this time hoping that after mesh removal the leg pain would completely go away. Some of it did and it was the part that felt like a tight tourniquet wrapped around my right thigh. So I was hopeful that I would be able to walk and drive again in time. I live out in the country and have to drive a fair way to get to a store, so right leg pain is an issue. Right now it would be impossible for me to think about it, let alone do it.
Last week I really felt in the doldrums because I still cannot lift up my right leg to put on my underwear without extreme groin pain. I still cannot take my playful little dog out for a walk and I cannot think about normal things like putting my shoes and socks on. So I allowed myself a couple of days of self sympathy and then I decided to look at the bright side. Without full mesh removal I may have soon wound up in a wheelchair like many women with femoral nerve injury from mesh. I can still walk albeit painful. I can take one ibuprofen when really needed and it does ease it some to get me through a trip to the store. I do not take any at home unless it is really bad, nor resort to prescription pain killers at all. I do understand not every woman can handle it without them and everyone makes their own choices.
So I will continue with the B Vitamins and hope and pray that a year will go by and my nerves will begin to heal. At least now the mesh is not continuing shrinking in my body causing further damage. So I must be optimistic. I am still alive and doing better than many women in the world who do not even have a diagnosis at all because doctors REFUSE to say that mesh is causing our complications.
As always, you need to do your own research and decide how you can handle your own life. I have no desire to tell anyone what to do and how to think. This is a blog and a journey. Nothing more.