Just an update

Sorry if I have been MIA too much lately.  I've been having computer issues along with everything else. 

For those who (like me) wondered what would happen to my PM after the incident with the insane PM second opinion...I can only say nothing happened.  Thank God!  I was afraid they would kick me out or something, but nothing happened.  I just picked up my refill script for this month and it is exactly the same as before, so I guess I am happy about that.  It doesn't cut the pain like I had hoped, but it is medication that helps and I don't think I could live with any more pain than I already have.

I have also had several other medical appointments since we last "spoke".  I have been diagnosed with osteoperosis....but, it turns out that may be incorrect because the Dr's say they have NEVER seen a worse bone density test done...ever.  Turns out the radiologist didn't know how to read the thing.  I was told by two very good Dr's to ignore it and pretend I never took the thing.

Also, I will be getting the high density MRI's on the back from top to bottom with and without contrast in the very near future.  I'm just waiting for the final approval.  Also, I had the gyno do a full exam this week and he found all of the damage from the failed bladder surgery.  He said he could go in and repair the mess, but that I would likely have so much scar tissue that it would be useless....so I guess I did the right thing filing for the case against the makers of the bladder sling.  Who knows....perhaps it will work out for the best one day.

Finally, the genetic testing and other testing done by my PCP turned out to reveal some other issues with severe inflamation and cortisol levels that were way too high.  I have the orders and should be doing the new (even more intense tests) on Thursday of next week.  That is the day of all my new hormone tests too since the gyno is checking all hormone levels to see what is up with all of the sweating I do.  He does think, however, it is a pain related problem and has sent something to that effect to my other drs.

It is a matter of waiting now and then I get to find out what is going on with my body.  I just hope things will show up clearly and I can move on from there.  I have to use a NEW hospital to do all of my radiology from now on though, because this makes three Dr's who have said to NEVER use the old one again.

I will post updates when I get something new. 

Hope you all have a wonderful weekend!

      Hello Mom!...glad to see you posting, however...were sorry that you are still suffering so much. I know what you mean by at least having something for pain, even though it may not be enough to bring the pain to better levels.

      Good luck on your test, and hopefully they can reveal the answers of what is going on.

 Take care,

 SE

Sorry I have been gone so long.  To answer the questions about the bladder thing....well...I had some moderate incontinence further complicated by the fusion I had undergone and my obgyn (then) told me he could do this surgery that would be literally 15 minutes and no more problems for life.  If it sounds too good to be true then it usually is, but like many of us with CP, I saw a chance to solve one issue and thought it would be simple to fix so I went for it.  They did a bladder sling that was wonderful for two months.  I literally felt so little pain that I was filled with joy.  They did have me doing inserts to prevent infection, but it wasn't until later that I found out he had cut the skin away inside for what reason I have no idea!!

Ok, so two months into the great procedure, I felt a pop while doing the insert and my hand filled with urine. The bladder has prolapsed on that side (badly) and the "teather" from the sling is in a ball dropping down.  The "knot" is about the size of the last digit of the pinky finger and is very annoying to say the least.  It also caused a rectocycle (sp?) and other issues. 

I went to have a repair after finally getting the "best" to do an assessment, but he gave me a 50/50 chance of getting better or worse....NOT GOOD ENOUGH!  I decided against the surgery and live with the problems.  I have, however, now filed a suit with the bladder sling thing, but who knows.  I don't even know if it will ever go anywhere.  It's a waiting game because my gyno I see now made it very clear that fixing the problem now will leave scar tissue too problematic to deal with that will likely cause more pain than leaving it the way it is until we HAVE to go back in.

With the other things, it was just a matter of time.  I'm still waiting on the call about the new MRI's, but will call on Monday for an update.

As far as the question of having a bone density before a fusion....I personally think it should be required, but then I'm not a dr...just a person with a bad fusion and poor bones now.

I wish you all a lovely weekend.