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Oct 27, 2012 - 1 comments

so...because I have been on and off the site, and onto different forums now, I thought I'd try to write about everything that has brought me to where I am today, and what I now am dealing I'll start a journal--for myself, but also for some of you here that I'm getting to know-- I need the support and advice as things come up, and knowing my background will help I think.  I am 37, married with 3 great kids--my sons Bailey-16, Dylan-15, and my daughter Alaina-6.  For the past 4-5 yrs, I have not been able to work, so my husband drives a truck long distances so that we can afford to live, have a family, etc etc.  We live in Windsor, Ontario, Canada....I'm American and grew up in Michigan, met my Canadian husband and moved here in 1996.      

I'm going to start with my health issues for now, and get into more personal things at a later time in a diff post.  In advance, some of this may be "TMI" for some people, so if you don't do well with some medical terms/descriptions, you can skip this journal:) I will try to warn w/ "TMI" at the parts that are about female-only problems:) I'll also mention that you will notice that there is a lot of time in between procedures and in Canada, we have long waits and limited resources, especially here in Windsor.  I have gone for 2nd opinions in the USA at my parent's insistence, and those drs have always backed up the drs here...though if we lived in the US and had good insurance, I would likely have not waited the long waits that I have had to here.

My life changed on Christmas morning 2007 when I fell down the stairs.  I had injured my back years ago with other falls, so I had a really bad back to begin with, but this one crushed my coccyx bone (tailbone).  I thought I had broken my back...well, I did, just the tip at the end...I also damaged my sacrum--it was "jarred" with the impact of my fall.  I slipped at the top step, and landed exactly on my tailbone on the corner of one of the bottom steps...about 7 steps down (a 1/2 flight of stairs).  X-rays at the hospital later that day showed it was broken, and I was given percocet for pain, and I was told that there was nothing else we could do but wait.  The bruising was severe, and I had a blood trail on my back that my dr (days later) explained was blood leaking out from the bone.  The pain was just so awful...nothing I had ever imagined...and sitting is something that you take for granted, because you need to do it a lot...and I could not sit.  I spent weeks laying down, and eventually was able to sit on a memory foam cushion made for coccydynia.  We waited and waited, and the pain just did not get better...and we added pain meds, oxycontin for long lasting with percocet for breakthrough.  Over a year went by with no improvement.  **TMI** I should also mention that I was having menstruation, I was having my period every day for over a year.  Yes 365+ days.  I had a D&C and hyster-oscopy to figure out what was going on and to stop the bleeding Nov 2008.  I had previous problems with my uterus, the worst being a post-partum hemorrhage with my 1st son that I almost died from--my hemoglobin/iron level went under 5, had 2 blood transfusions, a D&C, then more blood transfusions because I was at 6, and then finally I got back up to 11-12 (which is what a woman's hemoglobin/iron level should be).  Found out later that I had a bi-cornuate uterus....a congenital defect that probably caused the PPH.  

So May 2009 I had surgery to remove the crushed part of the coccyx bone.  **"TMI" coming up!  I went into the surgery having my period...I had showed up that morning with a tampon.  I had to take it out for the surgery...and after surgery, I tried to put on in again, but I couldn't....I thought it was just swelling, since I had my lower back opened up and my tailbone cut off.  1 week post-op, my incision opened up...I had a staph infection that I got in the OR...I had to dress my wound daily for 13 weeks until it closed up again.  Meanwhile, my "swelling" had not gone wasn't swelling--it was my uterus hanging down and almost out of my vagina.  But my uterus wasn't bladder and rectum also had both fallen...I had a complete pelvic floor prolapse. coccyx surgery......... no improvement in my pain, and it was actually worse.  I was devastated.  I went through all of that for nothing.  And now, I was living with my pelvic organs falling out of me.  Going to the washroom was just a nightmare.  I had to manually "help" with every bodily function in the washroom---I'll leave that "TMI" to your imagination...but let's just say that I felt less than was just horrible.  It would also take me a long time to empty my bladder, or to even just get it started...and I would spend many nights in the washroom all night long.  I finally was able to have the prolapses repaired last October, so 2011.  So I lived 2 and 1/2 yrs with it that way.  I had a hysterectomy (incl cervix), bladder and urethra suspension with partial mesh sling, anterior/posterior vaginal wall repairs.  It's better now since the uterus is gone, but I now am having problems going to the washroom bladder is sort of back and forth, and the other is always a bit difficult, but I won't get into it.          

In July 2010, I had 4 fainting episodes (syncopes) in 4 days.  The last one took me by ambulance to hospital.  I landed on my face on the ceramic tile, broke my 2 front teeth, bit a hole through under my lip to my chin.  The 1st 2 episodes I thought I just had tripped, but after the next 2, and talking with the drs, they thought they were prob syncopes also.  The 3rd one I landed on my bum...I would NEVER let myself fall on my bum...because of my condition, so when that happened, I thought something was going on, and I was going to call the dr the next day.  the next day (before I had the chance to call), I was cooking soup for the kids, and one second I'm stirring, then next I am sitting on the floor covered in blood.  They ran tons of tests at the hospital, and in the following weeks.  I had 2 abnormal EEGs, and about 2-3 months after the syncopes (I never had another one ever), I started to have double vision.  I was told that I could not drive after the syncopes, and then the double vision has extended that, and I have not been allowed to drive since July 2010.  My double vision is all day every day, but it's worse when I'm tired.  And when I'm sleep deprived, I see 2 heads on people.  Usually, when I watch TV, I see 2 of every person...and I can't read unless I'm really rested.  When I am tired, I close one eye at a time to read, but my left eye is starting to be too blurry to read out of when I am tired.    

After the double vision started, my neurologist ordered a new MRI.  The found that I have a pineal cyst in my brain.  They looked back at my last MRI and saw that there was growth (idk why they didn;t see it on the 1st MRI).  I now have a neurosurgeon who will monitor the size of the cyst with bi-annual MRIs for the rest of my life....or if I become symptomatic, we'll do more frequent, but the pineal cyst is not responsible for any of my current neurological symptoms.  

I saw an ophthalmologist who examined my eyes and determined that my double vision was definitely neurological.  He referred me to a new neurologist (a much better one than my 1st one who basically passed me off to the neurosurgeon w/o resolving my abnormal EEGs).  Now, I have been going through extensive testing.  Last week I had a consult in London, Ontario, and the drs there will be working with my local dr on my case...I will also see a neuro-ophthalmologist there.  The possibilities that they are leaning towards are:  myasthenia gravis, or a congenital defect/disease.  Basically, my brain is not communicating with my muscles...specifically my eye muscles.  Myasthenia gravis is an autoimmune disease/neuromuscular disorder that could start in my eyes, and then move to other parts of my of right now, the other parts of my body test negative.  I have an appt with my local neurologist next Tuesday, and then I am waiting for the call for my next appt in London as soon as my latest blood work results come back.  So for now, I just wait.  

As some of you here on the site that I have interacted with know, I decided to stop my pain medications in August.  At the time I was on 100mcg Fentanyl/72 hrs, and 8mg dilaudid/day.  I had a growing tolerance through the past 5 yrs, and was very physically dependent on the meds.  I also became addicted...self-medicating, running out early...I was desperate for pain relief...desperate to feel comfortable for just a little while, but no matter what, my pain was always there and always bad.  I started to get scared about the amounts I was taking...I was scared about the amt prescribed to me, AND I was still taking more, which scared me even more.  I had a few traumatic personal issues happen, and I just got so depressed, and stayed that way for a long time.  I realized that I needed to make a big change, and I decided to stop my meds.  I was able to get into an addiction specialist who also takes a very limited number of pain management patients.  I was soooo lucky to get in to see him, and I have been moving in a better direction ever since.  I have started weaning off my paxil, which caused a ton of weight gain...I also stopped 2 other medications that I felt were just not helping me, and now I take 3 medications total--suboxone, motrin, paxil.....(soon to be 2 I hope)....and I also started taking a bunch of vitamins.  The suboxone does not help my acute pain, and I still need to explore alternatives, like SIjoint injections, but I am so much better off now.  

So, this is what my last few years, and what my present day is like...I am exhausted after writing all of this...I took a lot of breaks:) I did it because I plan on sticking around on this is a really positive source of support for me.  I have some questions that I might want to get to asking on some of the forums, and I just feel like there is too much to explain sometimes, so if nothing else, I can cut and paste explanations from this long journal post ;-)
Thanks for reading, and I apologize in advance for typos...I am pretty crazy about correcting each one b/c of my double vision, I have to re-type like every 10th word, but when I get too tired, I just say forget it:)  

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3060903 tn?1398568723
by Nighthawk61, Oct 27, 2012
You're such a wonderful woman. I was wondering how you were faring, my friend. I'm so glad that you posted your travels in your journal   Please please keep us posted of your doctor's appointments, here in your journal if you can? It's so much easier to follow your path when set chronologically.  I would just love to be thinking of you and sending you some positive vibes your way. Thank you so much for taking the time, and i know how hard it must have been, with your double vision.

I think the last we spoke you were awaiting your London appointment, so I'm glad that you've gotten through that. I am hoping that your test results are something positive to work with

Again, thank so much for using the journal so that i can keep up with everything. I want so much to be able to support you, even if it is with my prayers for peace going your way.

Talk to you soon!! Hugs, Liz  

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