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Third Stage of the Journey

Off to see the Neurosurgeon

Remember me telling you about sitting in a chair?  I get to the neurosurgeon’s office and fill out my paper work, and wait.  I sit for a bit and I walk for a bit; I sit for a bit, I walk for a bit.  That bit turned into over an hour.  I know the ladies can see me in pain, they keep telling me it would just be a moment more.  Well, I was in tears again and asked if the doctor was even in.  His wife came to me then and said “it will be just a moment”.  Yes, I rolled those eyes, even grunted.  A very long moment later I go back and they take my blood pressure.  (Usually I am very proud of it, but not then), she asks if I have high blood pressure.  My answer was that it was usually in the 74/118 range, and that the pain I was in and the hour and a half wait would raise anyone’s.  By the time I get to the exam room I am holding on to walls to walk and then I cannot sit any longer.  I am leaning against the wall when the nurse assistant asks all her questions.  What range would I put my pain in on a scale of 1 to 10?  I told her a 15.  I also explain about having burned my hands and yes, I have had two babies.  She asks what my symptoms were; so I started with my history. — I think it started last winter when I was shoveling ice; it feels like someone has kicked my tailbone; I can’t sit more than a few minutes; I can’t lay flat on either of my back or belly.  My legs go numb; my feet have burning sensations.  She asks what I am feeling at this moment and I told her all the above, and my (sorry for the sensitive people out there) ass is on fire.  Also, my hips feel like someone or something was prying them apart.  She asks if that feeling was coming from the outside of my hips, I answered “No, Prying is from the inside out.”  I tell her my thighs were stinging, and the tingling is running down both legs.  She leaves and suggests I sit, the doctor will be just a moment.

I wait again, then the doctor comes in and instantly says ‘you have sciatica nerve issues’ and he wanted me to go to a pain management person and have shots.  Excuse me, Doctor, can you not ask me questions?  [My husband had some disc problems and he had the shots done.  No help for him, why would I want to do that? Remember I am a fixer not a manager.]  I then ask the doctor if he looked at my MRI and he said yes and there wasn’t much showing on it.  I then had to ask for him to show it to me.  When he did he pointed out the typical; the slight wear and tear on the L and T part of the spine and said nothing looked like it needed repaired yet.  He showed me the little spots between the L2 and L3; the loss of disc height and signal at T11-T12, T12-L1, L1-L2 and L4-L5.  He stated that the disc could not be causing the pain to the extent that I was complaining about.  Then he mentioned that I had a cyst in that area and asked me if I had fallen or been hit in my tail bone area.  {the cyst measured 1.2 x 0.8cm at the S1-S2}.  “Yes” was my answer, I told him about me being attacked by my step stool and yard rake.  Then he shows me what little of the S part of the spine that was on the images and he said that there was some small Tarlov Cyst showing up, but those cysts never are a problem.  He then says a requirement to continue to see him was he wanted me to go to the pain clinic and talk to them.  In the mean time I could take tramadol (he gave me the script).  He said to me –  with what the MRI was showing that maybe I needed to be put on antidepressants.  Oh, no he didn’t say that!  Being the excellent patient that I am, and the pain I was in, I was going to go to that pain management appointment.

The surgeon also sent me to the imaging center to have an x-ray of my hips.  I had been in his office for over 3 hours and standing or sitting.  Then I have to go for this x-ray and wait.  His office didn’t send the order over, nor when they finally did, was it correct.  So I’m there another 2 hours.

I get to the pharmacy and get my script for the tramadol filled, and can’t wait to take one.  And oh, it wasn’t pretty to watch me get in and out of my car.  So, I take that pill, just one mind you, and it really worked!  Honestly,  I was truly pain free for a whole of 30 minutes.  I had almost forgotten how that feeling felt.  Of course you can guess, I was so sick to my stomach and had the head spins.  Head spins are not something for me, I would not ever take another one.  Add that it slowed my breathing down so much that I had to drop my whole body to the floor just to start my lungs working again after taking a nap. (Big waste of money)

Within a week I meet this cute and young doctor at the pain clinic.  (If only I was 20 years younger, really just 10 years younger, I’d have found a reason to keep seeing him.)  He spent time with me and his nurse did not have to ask me any questions.  He did all the asking.  He even pulls up my MRI and asks all the same questions about my pain.  Where I was feeling it,  what and when?  After we talked,  he asked what meds I have tried and I told him.  He was very interested in the steroid that the family doctor had given me.  Did I mention before that they make this angel a mean person, and that they give me a rash on the top of my belly?  He explained that the shots they give people were steroid based and were fairly simple to give, but with some danger.  When he started doing his physical exam he was touching and asking what each symptom was.  Then he said that he did not think that the pain shots would help me at all.  He said that they would be a waste, because they only work effectively above the hips.  (so…. for all of you that have had shots for anything below your hips into the spine, hmmmmm, do you think your doctor told you the truth?)  Now, don’t go all berserk on me, that is what he told me.   He suggested a pain patch or lyrica.  So I walk out with a script for lyrica, and get it filled.  I only have this one filled for 10 pills.  Smart me!  I couldn’t take that one either.  My husband can tell you more about how I acted; I can’t tell you because one of the side effects is short term memory loss.  Yep, I don’t remember much, so I couldn’t tell you if it was effective or not.  They say you should take it for 10 days to get the benefits from it.  Lets see, give someone 10 days with something that will make them act strangely, and not know what the heck they did?  Oh, lets not hide her car keys either.

I called my family doctor and she calls me in a patch.  Now that was doing some help, but I was not pain free.  She added the other 2 meds to my list of ‘cannot tolerate’.  This is a list the doctor keeps and she said she had to add another column to the file.

Between the pain management appointment and my next neurosurgeon appointment, I called their office and asked for a diagnosis.  The staff told me that doctors do not do diagnosis any more.  ‘Chickuns’, was my first thought — they are too scared in case they get it wrong.  I then, not so nicely asked what my records showed, that was when I was given the name of the cyst.  Tarlov Cysts!  I then asked if they had paper work on this cyst?  If so, I could come by and pick up.  No, the doctor doesn’t give his patients information, because some patients don’t understand the information.  So I guess a patient is considered stupid from the get go by this doctor.

Meet Tarlov.
I start researching the information out there so I would know something about what was wrong with me.  Oh how wonderful it felt to read about my symptoms; not be told to get on an antidepressant.  Yes, there are people out there that have the same issues as me.  I am not alone! I am not crazy!

I go back to the surgeon and wonder of wonders I wait another hour and a half for this appointment.  When we discuss my talk with the pain doctor that shares his office; he got mad and left the room.  When he came back in he said he wanted me to see the other doctor in that practice.  “He would give you the shots”.  During this visit,  it took me longer to drive there and I was hurting so much that all I could do was leak.  Leaking now from the eyes and the bladder.  No, for my mom, if she is reading this, not Depends but another product.  The doctor once again told me to take an antidepressant and get those shots.  I told him that I would think about it and that I was not one of those people who will live my life addicted to pain meds and keep going back to a doctor to manage something.  Was he telling me that there was no fix for my problems?  His answer (and I do not lie, I’ll never forget) was “I can cut it off you if that is what you want, but I haven’t had any success with that type of surgery.”  Okkk…..  I nicely said that I would go home and think about it and call to make an appointment if I felt it was something for me to do.  Yeah, right.  I really was nice.  I was crying so much I couldn’t be mean.  I am really a very nice and upbeat person, I won’t bless you out, well maybe if you deserve it.  Yes, by the time I get home, I need help out of the car.  Had to call the husband to come get me out of the car.  Wasn’t he sweet?  Thank goodness he worked less than 5 minutes from the house.

During my research I came across a link to the Tarlov Cyst Disease Foundation.  There was a number and I called.  I had to leave a message and a very nice lady called me back.  (I will not name names unless that person reads this and asks me to include their name).  She may have saved my life.  And I do not joke about that.  I knew that I would never be able handle the issues if they were to continue and get worse for years.  Why should I live in the misery that I was faced with each day, why should my family be put through that?

While we were talking I told her everything I was feeling and she asked me other questions about my therapy and symptoms.  She asked if I was having bladder problems.  I answered that I was having leaking problems, then she also asked if I had unusual feelings in my reproductive area.  Yep to that, too.  She then said she could not give advice or recommend a doctor to me, but to call my insurance company and see if they had someone in my area listed as a specialist with the Tarlov cysts.  Suggesting that I not see another surgeon that did not list it, because I would get the same result as with the good doctor I was seeing at present.  I was to understand that most doctors think the cysts cause no issue and that the patient is either begging for pain pills or depressed.

As you can guess I yahoo’ed it and got all my info.  I then proceeded to call back a nurse advocate, from my health insurance, which I had blown off before.  I usually avoid the nurse advocates the insurance company has call you, but not this time.  I told her that I needed a new doctor that knew what a Tarlov cyst was and was not having any luck in my area.  She starts researching right then and there.  She was even nice enough to look at the Foundation’s web site and read it with me.  She came up with the same thing I did and she said that she only had one in her system.  He was in Texas.  I started crying and told her then I was screwed.  She said no, that I should call their office and make an appointment to see them.  I told her that I didn’t think that I could go out of state without my family doctor referring me and the nurse advocate said that she could handle all that.  If I could have reached through that phone I would have hugged and kissed her.  The Lord was smiling on me, my insurance would cover me seeing this new doctor 4 states away.

I do my research and discover that this doctor in Texas could do things over the phone if you want.  Not my way of doing things, what if he was an ogre?  What if he wore glasses thicker than mine?  Now, who doesn’t want to go on a trip!  So we fly down to Dallas.  Not a very comfortable flight though.  No first class for me.  I did call ahead of time to warn the TSA that I would need a wheel chair to get through the Atlanta airport.  Have you ever been to that one?  It could take you a week to find where you need to go.  But when I picked up my wheel chair I was treated like a queen!  Embarrassed because I was being chauffeured through the airport?  Not on your life.  Getting to the airport was over an hour and my xanax and patch were useless.  So another xanax later the flight finally took off.  The flight was a comical but scary one —- I post more about that later.

After landing I was in so much discomfort that I hit the hotel bed and did not move until my husband came back to take me to dinner.  He is a huge history buff so he had to go see where Kennedy was shot. Boring…..

Discussion

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  1. Pingback: #ChronicallyIllAndThankful, Day 5 | Funny Tail Bones - November 5, 2018

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