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Road to Recovery – Surgery on the Tarlov Cysts

Finally Starting my Road to Recovery.

After flying to Dallas, the next morning I get to meet Dr. Feigenbaum.  His assistant came and started the interview (I wouldn’t call it an exam), then he came in.  He showed me all my MRI’s I had brought with me and we talked over options.  Those were either to live with it or have a corrective surgery.  As you know by now I am a fixer, so you know the option I chose.  After they left the room I just stood up and started crying.  I think I had aged over 20 years in just the last year.  I even felt like I could breath and that maybe I wasn’t crazy after all.  This doctor seemed to get it. He treated me like I was a ‘somebody’ and that I had a few brain cells I could piece together and call intelligence.

Wonder of wonders, he showed me all my MRIs and then explained that I had cysts all along my spine, but the Tarlov’s were the one’s causing my issues.  He gives me all the statistics I need and then tells me all the gory details of the surgery.  Such as: he opens the cysts and checks them out then deals with any nerve endings he needs to.  He will be looking for the “feeder” opening to the cyst and will plug it with my own body fat.  (I told him no worries on that, plenty out there for him to choose from).  He then would close the cyst back up and wrap it in bovine heart material so it will not continue to grow.  (Of the few doctors who are doing anything with this type of cyst, not all do this extra step).  He then inserts a ‘plate’ to protect the area.  He told me that the operating room will have several different groups of people besides him and his staff.  There would be a medical doctor and there would be staff from a group that will monitor my brain and nerve activity, and yes, anesthesiologists.  Oh, I’ll need a more detailed MRI of the S and C, and a chest x-ray, blood work and even a staph infection test.  When did I want my surgery?  I said ‘tomorrow’ if possible and they put me down to get the insurance approval and I agreed to accept a cancellation.  If I had not agreed to that it could have been another 3 to six months before they could get me in.  This was the first week in October.

I get home, call the insurance company to find out if they were going to approve the surgery, and they had no record from the doctor’s office yet.  I know, all you employees of doctor’s offices, I was rushing it.  So when my nurse advocate called she said that she would check into the holdup and get back with me.  I really wanted the surgery before the end of the year since I had met my out of pocket costs.  The surgery should not cost me any more than the hotel, food and travel.  And for the husband, his loss of days at work.  I don’t think he was feeling too worried over that.

The person at Dr Feigenbaum’s office, whom was handling approval from the insurance company, was given bad information.  She was told that I would not have insurance.  (The insurance renews each new year and the person she talked to didn’t understand the process for the company my husband retired from.)  So I am upset and I call my insurance company and ask what was going on with them telling the doctor’s office I had no insurance, could they please explain it to me.  When the person I first spoke to repeated what the doctor’s office said they were saying, I asked if they didn’t understand how insurance works?  I made her give me to a supervisor and then made that one give me her supervisor.  Well, by the time I had spoken to 3 supervisors they put me on hold and then came back and told me it was all handled on their end.  I could have my surgery if I had it before Dec. 31, or I would have to go through the approval process again.  I am a very demanding person when I need to be, so I told her I would wait on hold for her to call the doctor’s office and do a conference call with them.  I wanted to be on the line when they told the doctor’s office that it had all been a mistake and for them to tell the doctor’s office what needed to be done.  That supervisor did not like it, but she did do it.  Bet most of you didn’t know it could be done that way.

So the first cancellation they had was Dec 16th.  Could I wait that long?  You betcha!  During the waiting time I had progressively gotten worse.  I spent most of my time on the couch or trying to get Christmas candy done.  My shopping was almost complete, but I still needed some things.  When I shop I really shop.  Compare prices, and all the necessary things a savvy Santa does.  This year Santa was not as good as she usually is, no comparison shopping.  Before we left for Dallas, I had wrapped all the gifts and hid them from the kids.  You never know, 20 something kids will still snoop, even when they don’t live at home anymore.

We didn’t fly to Dallas for the surgery. The reason we chose to drive was this chicken won’t get up and move about the cabin.  I did not want to try to sit for that long in a cramped area when I could not stretch out.  Who wants to chance a blood clot?  Also, Dallas Love Field airport did not have a courtesy room for handicap persons to lay down while they wait.

I could not use pain medicine, but I could use the xanax.  The pain medicine that I had been using was an n-said and an n-said pain patch.  The n-said can cause some extra bleeding, so to avoid such from happening during surgery, I went 7 or so days without it.  The heating pad and tears were my friends during those days.  I rode for three days and stopped every hour.  I made sure not to ride for more than 4 hours on each day.  After checking into a hotel I hit the bed until the next morning.  My surgery day! (Tuesday)

Being hyper-hypoglycemic, going without food on the surgery day was awful.  I nearly fainted waiting to be taken to the prep area and have the IV’s and blood work done.  After being stuck several times, they finally got the IV in and then after several tries I finally gave them enough blood to run their test.  Why do they not listen to a patient when she tells them that they need the IV started so they can keep her from passing out, I have no clue.  I showed up early as the Doctor’s office suggested, but the clinic staff was not caring if I passed out on them.  I felt sorry for the nurses trying to do the needle work; they ended up having to have someone from their lab do all the unpleasantness.  But finally the show got off.  Dr. Feigenbaum comes in and starts telling me everything and my stomach was having none of that, so I told him he could explain to the husband but not in my hearing.  Hurrah!  I am wheeled off to the surgery room.  I really wish I was a little more coherent in that room.  From what I remember it looked like the ‘deck’ on the Star Trek space ship,  lots of computer screens.  Before I finally lost complete consciousness, one of the techs that would be doing the nerve monitoring was plugging me up and explaining all to me.  My only request was I wanted over 24 hours sleep, undisturbed, could he see that I got that?  I have no idea how many probes they put on or in me.  After getting back to the hotel I found several areas of little pin pricks of blood on the legs and in the hair.  Even though I couldn’t see my back, I am sure there were several there too.

In the recovery room, I think, I bawled like a baby and rambled on about depressing things.  I hope no one was videoing me.  But I didn’t throw up!  The next thing I remember was late, during the night ,waking up (as much as one can) and needing to move.  You have to understand that when I am put to sleep and wake up, I really do not truly wake up.  I might carry on a conversation with you, but I won’t remember anything about it.  So, if the nurses explained anything when first returned to my room, that just went in one ear and out the other.  Now to the needing to move, I woke the husband up and told him that I couldn’t move and I really needed to.  He then has to go out into the hall to get a nurse.  This is the first hospital bed that I have ever been in that did not have call buttons on the railing.  So he had to go out into the hall to get help and when she came she was not a nice lady.  She didn’t listen to whatever I was saying. Maybe, to her defense, I was jabbering, but to me I made it perfectly clear I could not get my hips and legs to respond to my trying to move.  I vividly recall telling her that my feet were working but nothing else.  She then huffs at my husband and tells him that I could give myself more pain meds in my IV.  Did I say I was in pain?  I don’t think so.  I don’t exactly know what happened then, but a new nurse came in to see what the fuss was about.  No one could find the call button or the button to push for more meds.  The nurses before had ‘hid’ them under cuffs and in the rolling baskets next to my bed.  To make an even longer story shorter, they ended up getting the male nurse to come and re-position me, which was what I wanted in the first place. ,Back to sleep for me.

The next morning (Wednesday) came and when I woke up there was a new, nice nurse.  The husband did tell her what had happened and she promised that nurse would never come into my room again.  Oh, the food in Pine Creek Medical Center was wonderful!  Especially the breakfasts.

The medical doctor and Dr Feigenbaum’s assistant came to visit during the day.  What they said I couldn’t tell you.  I am pretty uncomfortable but was able to take the meds, drink my pop (soda/cola), but not get up to go potty.  You will have two tubes coming out of you, one you can guess and the other is a drainage tube for the spinal fluid and any wound liquids.  The thing is, I never knew I had the tube in my back.  Lucky for everyone, because if I had known then I might have pestered everyone about it.  That day was much of a blur.  Then on Thursday, everyone comes to see me, even someone that wanted me to breath in a tube contraption.  I never got the hang of it.  They also brought me a walker to try.  But we had to wait on Dr F.  When he came in he had me sit upright for the first time.  He examined the drainage tube and just jerked it out.  I think I had only a few seconds to realize it was there before it wasn’t any more.  I did not even feel it come out.  I like things done that way, just get it out and don’t tell me you are doing it.  He then tells me about my surgery.  Not all the horrid stuff, but that I had 3 cysts and 2 could be fully worked on but the third one was too small to wrap.  He did mention the nerves that were affected by the cysts.  It seemed a large number to me, but I know nothing about it all so could have been minor.

Now that the tubes were out, I can get up and use the potty; even take a rinse off with help later that evening.  But first the therapist comes to show me how to use the walker.  She even mentioned she had to use a kid’s walker, now I wonder why?  Did you guess I was kind of rank; I haven’t had a shower since Tuesday morning.  But all I was allowed to do was rinse the important parts off.  Friday comes and to the hotel I go.  I was given a walker and it has become my shopping buddy.  Once at the hotel all clothes off and into the bed I go.  I think I ate dinner, etc.  The husband got to play chef, maid and nurse.  I was playing Christmas music on my tablet and doing puzzles and games to keep me from driving him crazy.  Was I not considerate?  On the way to Dallas we stopped at a Cracker Barrel and I had bought some Christmas décor that I put in my hospital room and the hotel room.  I had to stay in Dallas until the 22nd, so why not have some décor?

I do want to put a note in here that I did meet a fellow sufferer like me.  “C” was very upbeat and just up and down the hall being so cheerful.  She came into the room and talked a while, her story is her story, but I was amazed with it.  Here I was barely getting along and she was everywhere; she even was doing squats in my room.  No malice felt but I was jealous she was moving.  After she left, I cried, why couldn’t I be like her?

The following Tuesday we head home.  How did I travel?  Well, with the ‘small’ suv we put a sleeping bag in the back seat and 2 pillows for me – one for the head, one for between the legs.  I kept my rear padded in case the brakes had to be slammed on and hopefully it would keep me from being pressed into the back of the seat.  Now fastening the seat belts around me to keep it all legal was a trick.  We found out the easiest way was to stretch them out as far as possible, then weave myself through the shoulder parts.  I could lay down very comfortably since I am not so tall.  The husband had to leave the moon roof open so I would not feel so shut in.  I wore socks and a dress the whole time and had his jacket to cover my feet.  I tried sweats but they kept riding down while lying.  I didn’t need a trucker riding by us and getting a free shot.  We stopped every 45 minutes or so and stopped each day/night to sleep.  I finally get home on Christmas evening.

Healing

So from February to October 2014 I finally had my answers.  I even did research on nerves to understand about the healing of them.  So, I knew going into the surgery that it would take a year or so for the nerves to heal.  Think of it as — it takes 2 times as long for a nerve to forget pain as it did to learn pain.

My incision healed nicely and pretty quickly.  After 6 weeks, I was still sore and unable to do the vacuuming or carry a milk jug.  I called the doctor’s office and asked about it and they told me that with three cysts maybe the 6 week time frame was too short.  So I did consider that.  If  each cyst got 6 weeks, I didn’t need to try much until the three month mark.

August 2015

Was the surgery a success?  Well, I am not free of the burn yet or the pressure.  My goal was a 50% reduction in the “before surgery” pain.  Most days I am there.  Knowing what I do about nerves, I am positive.  Some of my discomfort comes from the “shield” that was inserted; some from the nerves.  Since I had 3 cysts worked on and numerous nerves fiddled with, I did not expect to get back to “normal” activity such as vacuuming until 18 weeks. (3 x 6 weeks)  Mind you I go nowhere outside of my home without my walker.  To me the walker works better than a cane.  I can hang on to it while I look at things on grocery store shelves.  I am very stubborn and won’t let this get the better of me.  So if it means I am still using that walker at Christmas, you can be sure it will have lights on it.  My sitting in a chair is finally over 15 minutes and I can drive for 20 minutes with mild pain.  I use the method of setting goals for recovery and am realistic with the goals.  My next goal is to visit my son, he is three hours away.  Then the next one will be to lose 5 pounds every six months.  It is now the end of August and I can vacuum one small room with no discomfort.  I am there!  I rarely use the pain killer or the xanax, but if I know I am driving, I will use at least half of a patch.  I did water therapy and loved it.  Yes, some things are still uncomfortable but when I can pinpoint the discomfort to an exercise, we drop it.  Like my mother, I am a spring cleaner, two times a year.  I have not been able to do that for two years now and feel the walls closing in.  Those closets need emptied and dusted, the tops of cabinets need cleaned, the dishes that I rarely use need washed, the door facings, etc. really need some work.  All my what-nots need cleaned, the wooden knicknacks need oiled and the silver needs polishing.  The most problematic activities are driving and walking on cement.  When I sit, I still move a foot under the rear and keep it off the seat as much as possible.

When my family doctor asked if I was sorry I had the surgery, I explained to her that I was still here and I would have been stupid not to have had the surgery.  I told her that I didn’t think having to take pain pills that could either harm my organs, or which I could become addicted to, were options.  Also, on the cost of the trips to and from Dallas and the surgery, even if we were to take a loan out to cover everything, then so be it.  When you look at the cost of prescriptions, pain management shots, the lost value of your life; by two years out I would have paid for the surgery.

Discussion

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  1. Pingback: Thoughts on Four Years and Recovery, Page 2 | Funny Tail Bones - January 7, 2019

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