Doing pretty good.

I went on a tour of Mineo on Sunday, and made it through with no real problems. I didn't carry anything.  My main job was to keep up and I did.  I went up and down stairs and hills and wasn't dragging way behind.  I was so pleased with myself.  Cody carried our day-pack, Ethan had one of his own.  The boys were buddies and Cody kept up with Norah.  I cannot express how happy I am that I was able to power through.  I had no problems with incontinence.  I had a little bit of a limp by the end of the day, but I expected that.  Only issue I had health-wise was eating too much, too fast at the Agriturismo that I vomited and someone at our table saw me and questioned Cody about it.  He told them I had lap-band and they didn't question too much more.  When I have those episodes it's not actual food I'm vomiting, but the thick mucousy saliva that is produced to try to get whatever I've gotten stuck to go down.  In this case it was the pasta.  I have to be super careful with pasta and in my glee of gluttony I ate too fast and did not chew my food enough.  This is a continuous lesson I have to keep learning...over and over and over.  You'd think after 3 years, I'd have it figured out.

Today is Wednesday and I do believe I'm getting some feeling back in my left foot.  It seems that it's not as heavy and swollen feeling as it was.  I can only speculate that it's the walking and vitamins.  I'm trying to stay on top of the B12 complex and fish oils.  I'm starting to get hope back that possibly by May (one year since Cauda Equina) I may actually have marked improvement.

Prolapse

I saw the gynecologist and she checked me out.  I definately have a prolapsed uterus as well as bladder (cystocele)  and bowel (rectocele).  It looks like I'm going to have surgery in January.  I'm going to have a hysterectomy as well as repairs to the front and back of the vaginal wall.  She will also place a sling type material (Tension-free vaginal tape) to fix the bladder neck and hopefully help with the urinary incontince I've been having.

I'm about to get real here.  I'm going to tell it like it really is for me.  I'm not sure if anyone reads this or ever will, but I'm about to tell you things that most probably fall into the TMI category.  I'm warning you now.  If you don't want to know intimate details about me and my physical problems, you'd better click on out of here while the clicking is good.

Today has been a yucky day for this stuff.  I'm having what I hope to be my last period ever.  Since this prolapse business started my periods are awful; painful and heavy.  I feel miserable.  I can feel my cervix at the entrance of my vagina.  It's uncomfortable and it has a burning sensation.  Standing and walking are miserable.  I just want to sit down since it takes the pressure off of everything.

I keep thinking that I should be more upset about having a hysterectomy, but I'm looking forward to not being uncomfortable all the time.  As a couple we had decided to not have any more children.  We have a complete family with our three so the idea of not having my womb any longer doesn't bother me. I get to keep my ovaries (unless she discovers something while in there) which will allow me to keep producing my own hormones; that is a plus.  I won't have periods anymore, but will still go through menopause at a regular age (though research has shown that women with hysterectomies tend to go through menopause a couple of years early).  I think and feel like it's the right choice for me. If I don't feel like everything is falling out, I can concentrate more on strengthening my left leg, ankle and foot.

When I say I'm numb, it's not dead like I'm paralyzed, but more that I can't feel light sensations.  If you take your fingers and lightly brush your skin with your fingernails, you can feel that.  In the parts of me that are "numb" I can't feel that.  If you push harder though and put pressure on there, then I can feel that.  I have the non-sensation down the middle of each butt cheek and down the backs of both thighs.  My right lower leg and foot are almost completely normal.  My left lower leg is almost overly sensitive.  I can feel light touching but it's exaggerated in a way.  My left foot feels very much like when your foot has been asleep and then it is trying to wake up.  It's not tingly, but feels full or swollen (though it is not).  The left side of my left foot feels so off that I sometimes loose balance because I can't feel the side of that foot correctly.  I cannot wear heals anymore.  I have a hard time walking barefoot as well.  I have to wear my tennis shoes all the time.  I ordered some low heeled boots, I hope that I can wear them.

I don't always feel the need to have a bowel movement and that has resulted in poop in my underpants.  I'm so embarrassed to talk about this.  I mean seriously, who wants to say that they have poop issues?  Most of the time I can tell when I need to go, but sometimes it just happens and I don't feel it.  (numbness again).  I also can't control my flatulence either.  I'll pass gas.  I can feel it in my intestine but cannot control the muscles in my bowel that holds it in.  I'm still hopeful that in the next five to six months the sensation will return and I can build muscle strength and control up again. I still have a year and five months to hold onto hope.  They said that it can take up to two years for the nerves to do their thing.  After two years is when I have to say, "This is it.  This is all I get from now on."

As far as sexual dysfunction, I'm embarrassed and sorry to say that it's there.  I thankfully have sensation in the front half of my vagina area to include my clitoris.  The back half is still numb.

 The problem I have is the urinary incontinence.  Even though my husband is supportive and has said it doesn't matter, it matters to me.  I'm very much a sexual person, but a lot of my satisfaction comes from being able to clear my mind and be in the moment.  I can't do that if I'm afraid I'm going to leak urine everywhere.  Even when I've prepared for the event with towels and absorbent pads underneath, I still can't get there.  I'm hoping that with the bladder surgery that I can finally be semi-normal again.  Now don't read into what I've just said that we don't have sex, because we do; albeit way, way less than our normal.  Also don't think I don't enjoy other sexual activities that don't involve intercourse.  I have an awesome and understanding husband.  I also take care of his needs and desires.  We're muddling through this situation with love and mutual respect and understanding.

Gyno

I have an appointment with the Gynecologist today to see about my prolapsed uterus and probably bladder as well.  I'm so nervous about this exam.   It's never fun to have your hoo-ha checked out, but espeially not when you KNOW there is a real problem down there.  It's embarrassing to talk about and to think about.  I'll be glad to get it over with.

Moving to Italy...

Slowly things were coming along and I was doing okay.  I had began to wear pads for the incontinence episodes.  They were few and far between, but if I coughed, laughed or sneezed it would be a flood and I would need to change clothes.  I leaked urine when I was intimate with my husband.

I had been cleared to move overseas to Italy by the Navy.  My surgeon continued to say that I would make a full recovery and wouldn't need any follow-up care.

We took the flight to Italy.  As a precaution I wore a Depends on the flight.  (I did not want to have an accident on the plane and not be able to get up because of turbulence, etc).  It's a good thing I did, because for the first time since right after surgery I had trouble with my bowels.  I had soft stools that I couldn't control.

Two days after our arrival to Italy I had extremely loose stools that resulted in me having to leave a briefing early.  I soiled myself.  I felt awful! I don't think anyone saw or if they did, they did not say anything.  I went back to the TLA we were staying at and slept most of the day.  I think it was a stomach bug or something because I felt better after that.  A day or two after that incident, I got my period.  What a mess that was!  My periods have become increasingly heavy and painful.  I've noticed that my cervix and uterus have fallen to the point that they are almost out of my body.  My cervix hangs out at the opening of my vagina.

Several weeks now after arriving here in Italy I wear pads all the time and change them out often.  On occasion I have a day where it's not a problem, but then other days it is a problem.  I went to the open house at my son's middle school.  There are several flights of stairs.  Physically I was able to walk up and down them, but I leaked so much urine that it leaked through my clothes and I had to leave early.  It's frustrating to have such an embarrassing problem.  Only people that know about this problem are my immediate family members.

This week my cervix has dropped even more and it is very uncomfortable.  I've finally made an appointment with the doctor.  I go next Thursday.  I'm nervous about addressing these problems with a new doctor.  I'm afraid that I will be sent away.  I'm afraid of being yelled at.  I'm afraid of what they will tell me.  I'm afraid that they will say that there is nothing that can be done and I have to live this way for the next 30 plus years.
I'm just flat out afraid.

Surgery

The surgery to remove the ruptured disk went well.  I went in around 7:30PM and I think I was out around 10 or so.  I was very hazy of course, but remember coming to when they were calling my name and I had three thoughts flash through my mind.  First I recalled that my mama was dead, then my husband is deployed and finally that my Papaw was somewhere waiting for me.  The surgeon had went and spoke to my Papaw but I can't remember if he came to talk to me.

The next morning the surgeon did come in. He explained that I had a massive rupture that he removed.  He stated that he had never seen one as large as the one I had.  He also did a laminectomy (removed part of the bone in the spine). He told me again that in time I would make a full recovery.  I believed him.  Again, he never mentioned Cauda Equina Syndrome.

I had been feeling the need to urinate, but had a catheter in (and I could feel it) which was a vast improvement. They removed the cath and I was able to go to the bathroom.  I still did not have the urge to have a bowel movement, but did feel the need to urinate and was able to do so.  I was so happy. I was also able to walk.  I did not have any pain.  I stayed in the hospital for that whole next day and night and then was able to go home. I was given a prescription for physical therapy for my leg and told to wait a week or two to get started on that. I would just need one follow-up appointment with the surgeon in 6 weeks and all would be well.  And I believed him.

After being home a few days and realizing that I still was extremely numb down my leg, on my buttocks and my vagina I became concerned.  I started doing some research on my symptoms and that was when I realized that I had suffered from Cauda Equina Syndrome.  What the heck is that?  Here is the website I went to.  I was devastated.  I read the stories on the website and realized that what I had suffered was really serious and long lasting.  It's not something that you "just recover" from.  I was an emotional mess.  I had only been out of surgery for a week or so and I was distraught.

I was 33 years old and my husband was deployed.  All I could think of was the fact that he left me here as a fairly healthy wife and will be returning to a limping, numb wife with a leaky bladder and bowels that don't work quite right.  How was he going to want to stay with me?  How was I going to deal with all these problems?  What about sex?  If I can't feel it, will he still want me?  Will it hurt?  Will it feel weird to him?  I was going through all the symptoms of grieving and accepting a diagnosis.

My bladder was working well for quite a while I thought.  My bowels took a while to get going again.  I couldn't feel the need to have a movement and it would just happen when I was using the bathroom.  By my 6 week follow-up I was getting a signal from my body that I needed to have a bowel movement.  It wasn't the normal feeling one gets, it's more like a sort of burning sensation and the overwhelming urge to push, but it was something.  I had started having episodes of stress urinary incontinence though.  It was much more serious than it had ever been in the past.  I would have a problem when I would stand up from having been in bed.  The surgeon wasn't concerned.  He again was completely convinced that I would have a full recovery, that there was no need to worry about moving to Italy and that all will be well by one year out.  This time, I didn't believe him.

The Beginning

I'm 34 years old.  I have given birth to three beautiful children.  I had my first child at 22 years old.  When he was 5 month old or so I was sitting up in the bed nursing him and I felt a twinge of pain radiate from my right butt cheek and down my leg.  It continued to bother me for days.  We went on a long car trip to Florida (from Nebraska with a stop over in Georgia).  I suffered on that entire trip with the pain, so I went to the doctor when I got back home.  They said I had sciatica and to go to physical therapy.  So I did what they told me.  I took prescription Motrin and went to physcial therapy.  The therapist said I had "piraformas syndrome"  and they did heat, massage and ultrasound therapy.  It got better and I went on with my life. 

Nearly six years later I give birth to my second child.  This time I am 28.  He's a few months old and again I start having the pain in my right butt cheek and down my leg.  This time it is excuriating and much worse.  I lie in the floor in child's pose and crawl around to try to get relief.  This time we are living in Colorado and I
have to walk my older son to and from Kindergarten every day.  I do it but it is awful.  I go back to the doctor and they call it sciatica again and prescribe Motrin and physical theapy.  I'm suffering.  I go to the physcial therapy office and they make me wait several days to get in.  They do the same thing as before, heat, massage and ultrasound.  It does not help at all.  My mother is extremely ill with leukemia and I fly back to Georgia with the baby.  I remember carrying him through the airport limping and tearing up in pain trying to make it to the baggage area to meet my family.  I began living on Tylenol and Motrin.  I would take each medication every four hours to be able to function.  My mother passed away and I was still in pain.  I never did go back to physcial therapy, it did no good.  Eventually the pain went away after nearly four months.

Over the course of the next three years I would have flare ups of sciatica.  Sometimes I could pinpoint what set it off.  Once it was from sitting in the front seat of the car for several hours at the drive-in.  Another time I sat on the ground for an hour for an outdoor concert and that set it off.  Other times it would just happen and I would suffer for several days to a week with it.  I finally learned that if I stretched by lying on my back and pulling my leg to the opposite side it would stretch out my piraformis muscle and keep the pain at bay. 

In 2009 we lived in Virginia and I gave birth to my third child, I was 31.  She was in a breech presentation late into the pregnancy so I began going to the chiropractor to help get her to turn.  She did and I had a much easier delivery with her.  After her birth I began going to the chiropractor fairly regularly after a bad flare up and a visit to my regular doctor.  The x-rays he took reveled a narrowing of the spine and degenerative disc disease. He reffered me to the chiropractor, of which of course insurance wouldn't cover.  I went regularly and we were able to keep the sciatica from flaring up for the most part. 

Thursday, May 13th my Mother in law was visiting while my husband was deployed.  I sat on the couch (I usually did not sit on the couch because soft surfaces would sometimes cause a flare-up) and nursed my daughter that evening.  When I got up I was hurting.  I knew immediately it was not good.  The next morning I went to the chiropractor.  It did not feel as good as it usually did.  Usually I could tell a difference right away.  This time it was still bothering me.  I took some ibuprofen and went on with the day.  That night I sat in a tub of hot water and felt much better.  Saturday I was feeling pretty good.  We went strawberry picking and to the beach.  I did pick some strawberries, but was careful not to lean over too much.  I lay on the beach and just relaxed.  Later that evening I felt worse.  I had ate too much and coughed a bit to vomit, when I did I felt some excrusiating horrible pain in my back.  I didn't cough a whole lot, it was just a little bit.  I thought if I got in the tub again it would feel better since it worked the night before.  I got in the tub and it did no good.  When I stood up to get out of the tub I felt numb.  I was numb all in my buttocks and pelvis and down my left leg and foot.  I freaked out!  I woke up my mother-in-law and we went to the ER. I was hurting bad.

When I arrived to the ER they took me right back.  All they heard was "pain" and gave me pain medication.  It did nothing to help.  I cannot describe how much I was hurting.  They made comments like, "You need an MRI." but wouldn't get me one.  They said I needed to see my doctor on Monday.  I wish they would have just did the MRI.  They were trying to hurry me out.  They gave me the pain meds and wanted it to hurry up and take effect so they could send me home.  I was trying to get off the exam table to leave (even though I was still in extreme pain) and I had the biggest muscle cramp ever in my left butt cheek.  My mother-in-law P got the nurse and they came back in.  They gave me another pain medicine and it slowly got a little better.  They wrote me some prescriptions and sent me home.  I was miserable.  I went to bed. 

The next morning my mother-in-law had to fly back to Georgia.  My dear neighbor got my prescriptions filled for me.  I was taking a pain medicine and a muscle relaxant.  I was flat on my back in bed.  My older two boys were fine, but my daughter went next door with the neighbor.  I was not feeling right at all.

I went to the doctor on Monday evening. He looked at my chart and saw the x-ray from before and said, "oh yes, you have degenerative disc disease and you need to go to an orthopedist and they can help you.  In the mean time take some steriods and the inflamation will go down and you will get feeling back."  I questioned him over and over about the numbness.  He assured me it would go away once the inflmation went away.  I believed him.

Tuesday I forced myself up and took the kids to the military base to apply for passports.  We were planning a move to Italy and I had to do all this paperwork while my husband was deployed.  On the drive up to the base my left leg had awful spasms and intense pain.  Looking back I think that was when the nerves completely died.  After that I didn't have anymore pain.  When I returned home I went to the bathroom and discovered that I had wet myself.  After having had three vaginally delivered, large children I had minor stress incontincence, but this I didn't even feel happen.  I also realized that I had not had a bowel movement since I couldn't feel anything down there.  I was scared.  My grandparents were flying in that night so I just held out until they came in.  I had two other episodes of urinary incontinence.

Wednesday, May 18th.  I dropped my son to preschool and my grandfather drove me back to my doctor. I saw a PA and explained all of the symptoms to him.  He was very concerned.  He formerly worked in an ER and did a couple of neurological tests on me.  He asked me to stand on my tiptoes and I couldn't.  That's when he said, "Damn.  You are going to need surgery, now."  He sent me to the ER again.   

I arrived close to 10:30am to the ER.  I received two MRI scans.  One without contrast and one with.  By 7PM I was in the operating room. The neurosurgeon came to see me before surgery and showed me the MRI images.  He said, "You have a huge mass here.  I cannot tell if it's a ruptured disc or a mass like a tumor.  I can go in and remove it and find out.  If I don't do surgery now, you won't get any better." Of course I decided to have surgery.  During all this time not one person actually mentioned Cauda Equina Syndrome. The surgeon kept saying I would make a full recovery in time and I would be fine. I believed him.