Adding my two cents to the mega mesh mess surrounding transvaginal mesh complications…

2013-09-21 Update – working on it

I have not been keeping up with this blog lately.  I am also not keeping up with the latest news on mesh, or reading other people’s blogs, or with the Facebook Groups I’m a part of…   or with a lot of my friends and family.  Hell, I haven’t been keeping up with anything outside of work, and the bare necessities with my kids and family.

Why?  Well – I guess it’s a combination of things.  Partly, it has been really busy with the start of the school year and all.  Plus, I’m just getting burned out  and sometimes, I just need a break from… well – everything.  That is nothing new.  I’ve always gone in spurts with my writing, etc., and sometimes need to just chill – but, it’s more than that.  I am just literally exhausted a lot lately.

I went back to work full time the end of May after almost 6 months of medical leave, and a helluva a surgery.  Going back to work was/is hard. I’m still limping around pretty badly.  When I went back to work the end of May using my crutch, I thought that by September I would be much better and getting around without it.  Maybe wishful thinking – but, up until a few months ago it did seem like I was making progress.  Then, it felt like I just hit a brick wall.   My progress, which had been slow but at least was creeping along, just sort of dug it’s heals in and refused to budge another inch.  I’m still a lot better than I was before I got the mesh out – but, also still no where near where I use to be still before I ever had the stupid mesh put IN. I feel like I’m stuck in a place I don’t want to be.

Still, all in all, going back to work full time  was the right move for me. I like my job and in this economy, I know I’m fortunate to have a job.  Period.  I am also so thankful that I can work full time again after what I’ve been through.  I know many are not so lucky.  Many (and I do mean many) of the mesh-injured people I have talked to  are not so fortunate.  They go through multiple surgeries and wind up worse and worse, and not able to work.  So, I am thankful and I am NOT trying to complain about my job.  Honest.  It’s just that working full time again while limping around?  Well, it IS just plain kicking my ass.   I am pretty much spent by the time I get home at night.  I barely have time to talk to my kids and husband before I’m falling asleep.  After being out on medical leave for months, I am playing catch up at work and really trying to do a good job.  I think I am doing that and feel like I’m back in the swing of things there… but, it’s just the getting there, getting around, and getting home that is tough. Most of my job is a desk job, thank God, or I wouldn’t be able to do it at all.  But, I AM doing it…  and even though I can sit for most of it… I’m still physically drained by the time I get home.  I use to be a night owl, but now I’m lucky if I can keep my eyes open long enough to hear about my kids school days after work! I suppose this is true for lots of folks working.  For me, life was always busy even before mesh, but…  yeah… this is a whole new level of “tired”.

I am still limping around pretty badly.  I gave up my crutch… and switched to a cane full time.  Not because I really wanted to, but because I thought maybe I was leaning on the crutch too much.  Literally.  I thought, maybe this was part of the reason I wasn’t healing more in my left side.   Walking solo is not really an option, though, for more than a few feet so I started using my cane full time.   If I walk without the cane or the crutch, I limp really really badly, like reeeeeally badly…  and will feel like my knee is going to give out after a few steps.  I don’t usually get to far before I have to sit.   If I can lean on the cane or crutch, I do much better.  I can walk more upright.  It’s not easy,  but I must make it look easy because I will have people ask me if I really need it.  Hello?   Seriously?   As IF I’d be using it if I didn’t have to.  ??  You would think that would be obvious… but, I guess not.  And, yes, it does still hurt to walk, even with support, but at least  I can get around with the cane or crutch.  I mean, you won’t see me walking any marathons with it, but I can get where I need to right now.   I am getting better at not visibly grimacing, or saying “ow” as much… but, that doesn’t mean it doesn’t hurt.

Still, I don’t really like the cane.  It is more wobbly than the crutch was, and since I don’t get as much support with it, I walk slower with it than I could with the crutch.   It’s harder.  It makes me more tired and sore than I felt when I used the crutch more.  Not to mention it’s definitely cramping my style.  I feel like it makes me look like I’m in my 90’s rather than my 40’s!  Oh well.  I guess that is the least of my worries….

Oh, and I thought this was interesting…  just a little observation…
I noticed when I used the crutch – people were more considerate… they will hold the door or something.   Not so much with the cane.  They also ask more questions with the crutch (“what happened??”) and seem to feel like they deserve a good explanation as to why you are using a crutch.  With the cane – nobody asks unless they know me.   I guess, most people must  think if you use a cane you have something more long term and less demanding of any attention.  Which struck me odd a little, because in my case, I actually am struggling much more with the cane than I did with the crutch.  But, whatever…  I’m not looking for sympathy or help.   Just saying…

At least the cane does force me to walk more upright, and to use my left leg more… and it is getting a little easier to use the cane as I go along.  My hope is that it will force my left leg to gain strength and help straiten me out. I’m still all crooked… my pelvis is literally tilted so that I’m visibly taller if I stand on my right leg.   I guess nothing is going to get better overnight.  Obviously, since it’s been 9 months since my mesh removal, and I’m still limping around.  I still refuse to believe this is as good as it will get, though.  I am not ready to resign to never being able to walk without support again.

I did  just join a gym with a pool.  I finished that water walking class – which I liked – but, I didn’t notice much difference other than it tiring me out.  The class was only once a week, for 5 weeks.  My new physical therapist thought water exercise was a great idea, but thought I should do it more than once a week…  so, I finally just joined a gym and can now swim laps whenever I want…. or whenever I can drag my butt there it more like it.  I’ve gone a few times so far, and it feels great when I’m in the water.   Wearing a bathing suit in public is not so much fun, but oh well.  Again, no time for vanity.  It is very cool to be able to walk without limping in the water.  The water is so soothing and I love being able to move freely… something I haven’t been able to do for over a year and a half now…  But, when I get out?  Ugh, it’s depressing.   I suddenly feel like I weigh 500 lbs as I climb out of the pool and go back to limping and reality.

So far, the swimming seems to just be adding to my exhaustion, but I’m hoping it will get easier if I get in better shape and gain strength.  Besides, $30/month membership isn’t so bad, considering I have to pay $40 co-pays every time I go to Physical Therapy, the Chiropractor, or just about any doctor.   I am thinking I’ll do less PT, and more swimming since the PT doesn’t seem to be helping much lately anyway.  But, we’ll see what the doctors say…

And, oh yes…. I’m still going to lots of doctors.  I’m still doing PT.  I’m still going to the Chiropractor.  I’m still being shuffled around between other specialists.  I am not planning on going all the way back to UCLA to see Dr. Raz again, as much as I do love him.  If I needed more urological/gynecological repairs for anything – I would go back to him.  But, my biggest concerns and pains now have to do with walking and my inability to do it.  So, for that, I think I can go to docs in my area.  I have yet another appointment soon with another specialist.

Now, the docs general consensus is that all the inflammation and problems I had with the mesh may have caused other resulting problems that I now may have to deal with.  Something I also know is fairly common for mesh-injured people.   Many wind up with some autoimmune issues, like Lupus and constant infections.  Many have incontinence or other urological issues….  or much worse.  Mesh is the gift that keeps on giving!  For me, it’s my hip/leg/groin that doesn’t seem to want to go back to normal.  I’m worried “they” will want to do more surgery…  and the last thing I want is more surgery.  Like, I reeeeeeeeeeally do NOT want more surgery….  but, all I can do for now is keep trying and keep hoping…  and see what the docs suggest… and, then, of course research the hell out of it…  because THAT is what I do now…. research the hell out of things.  (Fool me once… and all that jazz…)

I have my ups and downs…  sometimes, I get pretty down, I’m not gonna lie.  There are days I just want to curl up and cry…  but, most of the time, I manage to keep things in perspective.   To feel better, all I really have to do is to stop thinking about what is going wrong, or what I still can’t do (and trust me, I have quite the list), and instead I need to take a good long look at what I DO have.   I have 2 great boys, and a wonderful husband.  I have a good job that held my position for me.  I have the mesh out.  And, I have hope for better days!   I am a lucky woman for sure.

Take care, all.
~ Deb

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Categorised in: Mesh Complications, My Progress

9 Responses »

  1. Hey deb i am so so like you its funny how docters know how to put mesh in, yet none seem to know how to take it out ! My nerve damage is servere & i to are off & on a cane, one part there i swelled up so bad i looked like a balloon that was only to months ago & the swelling is still there, it has made it so hard i can only wear slippers . I also have been pushed around from surgen to surgen its so sad no one will take responsability !!!

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    • ThanksTracey. Sorry you are going through this. Swelling up isn’t much fun, no. My feet and ankles still do that too, but not as bad since the mesh is out. Yes, there are only a few who seem to know how to take the mesh out. Dr. Raz was who I went to for that. Traveling all the way to UCLA to get the mesh out wasn’t easy or practical, but for me it was worth it. I have heard of a few others that will do full mesh removals, but most will only do partial removals if anything at all. The partials often wind up making things worse from what I hear, so I would not recommend that. It’s sad the more doctors will not help. It’s not even about taking responsibility – but, just about really helping someone who is in pain – regardless of who’s “fault” it is… ya know? I don’t really understand either. I probably never will.

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  2. Thanks for your support deb but i live in australia & i know we dont have a Dr Raz but i would sure like to find a Dr like Dr Raz . Could you plz tell me which mesh & what company was used & are you in court for this ??? . My mesh is desara tape & monarc gold class by ams . From the very first op i was told when i woke i would have a great life & this was not true, according to others my mesh can not be removed, how did your one get done! Cheers deb

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    • Tracy… I had a monarc sling, by AMS too. You can search the MAUDE database and see there are many different types of mesh and reported problems… it’s a real eye opener…. especially since they are still using many of these (FDA SEARCH tool: MAUDE: http://www.accessdata.fda.gov/scripts/cdrh/cfdocs/cfMAUDE/TextSearch.cfm). I wish I had known about this before I ever had the mesh put in… but, like you, I was not.

      Once I did have pain/problems, I was also told my sling was “impossible” to remove. It seems that is the standard answer many women hear. Probably because really not many doctors CAN remove it, and it is not meant to be removed. But, there are some doctors, like Dr. Raz, who CAN and DO remove it. When I told my local doc that I knew it was possible because I had talked to women who went to Dr. Raz and had it removed, I was then told, “well, I would not remove it, and I do not know of any doctors that would”… and then they offered me the partial removal… which I’m glad I didn’t do.

      I know there are not many good doctors who can remove mesh… unfortunately. I do know that many women have traveled, even from other countries to Dr. Raz… Have you tried any of the support groups or other links to ask about any other potential doctors in Australia? I know there is a Facebook group, “Mesh Down Under Support Group” at: https://www.facebook.com/groups/MeshDownUNDERsupport/…. maybe someone there might have some ideas. I’m sorry there are not any easy answers when it comes to mesh complications… =(

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      • The mesh that is in me is DESARA made by caldera medical & the sling is MONARC TRANS – FACIAL HAMMOCK made by AMS which is made of the same material to the DESARA TAPE & yes i am in court for this

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  3. Hi Deb, Sorry to hear that you are still having such a time of it, was hoping that when i did finally get to the point that i could be in touch , that things would be much much better.. hang in there .

    Also wanted to give you an update on whats going on with me, I did go to California to see Dr. Raz in Aug. and was scheduled to have surgery in Feb. then i found out i was loseing my job and ins so when I called back to see if Dr. Raz could get me in this yr it was no way , so I am currently here getting my testing done, that started today and my surgery will be Dec. 12 with Dr. Kim I saw her Monday and I really liked her.

    Hoping the next time i hear from you that things are much better !!!! I will try to update once it get back home since I am leaving the hospital and flying home on the 13th it was the only choice I so that I could have the surgery. Hoping the pain is not to bad that seems to be a concern for Dr, Kim
    but I want my life back and I am fighting as hard as I know you have.
    Thank Care I will be Praying for you and your family.

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    • Its been a year since I have had my mesh out and although I dont have the pain like alot of other women I fight hard for my heath. I have had ecoli 4 times and tons of uti’s. Ive had to change my diet and try to stay on top of things with Gods help. I still bloat at times and I have bowel issues but on the positive I FEEL SO MUCH BETTER than before the mesh. Changing my diet has helped a whole lot. Keep your chim up and dont give up on getting WELL!!!!!

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      • Thank you so much, Linda, for the comment & encouragement. I am sorry you are going through so many issues yourself. Did you have full mesh removal, I wonder? Sometimes, the mesh left behind continues to cause problems. And, sometimes the damage already done before removal was just too much.

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