My Journey of Thoughts

I'm taking a few moments to reflect back on this journey of mine, with this ugly disease.

First and foremost, I have the most awesome husband and kids in the world.  Thank you, Gary for always taking care of me!  Jennifer, Justin, Lauren and Kent, you are all wonderful and take my pain very seriously.  You are always a huge help when you are around and even when you are not, I know you are praying for your mama.  Words cannot describe how much I love you all.

2nd, I am very tired of doctors.  Neurosurgeons especially.  If I had one wish, it would be for neurosurgeons to think outside the box and believe those people who really hurt and I don't know, maybe listen to them.  The only one I trust is Dr. Feigenbaum.  I have learned that there are so, so many people out there hurting, there needs to be someone who will listen to them.  My disease seems mild, compared to others I have read about.    

3rd, this disease is a life changing event.  I never thought I would be someone who is considered disabled, but now I am.  Because of this disease, I had to retire with disability.  I was very lucky to have been able to collect full benefits.  I haven't been able to travel.  Just to go shopping I have to lay down in the backseat of my truck, so I'm not hurting when I get to where I need to be.  My hobbies have been placed on hold.  Here I am retired and I cannot enjoy my hobbies.

4th, we have our first grand child coming in December.  A little girl.  I am bound and determined to get better for her, because this grandma will do anything it takes to be able to spoil that little girl.

Pre-Op today

Had my Pre-Op today at the Pine Creek Medical clinic today.  You don't need an appointment, I would suggest you go early.  We were there around 9:00 am, not very many people were there yet.  When we were leaving, quite a few more people were there.  The standard stuff was done to me; bloodwork, urine analysis, nasal swab (not sure what that was for), I just went with it.  I had an EKG and chest X-rays.  That was about it, but by the time that was all over, I was burning with pain. About a level of 10 or more.  Of course I forgot my pain pills.  The biggest blessing was Gary drove me and I got to lay down in the backseat of my truck.  Thank goodness for Gary.  There is no way I could drive into Dallas and home again without pain levels so high I couldn't imagine!!

So Pre-Op is finished, it just makes surgery seem that much closer!

My Gift

A sweet, dear friend gave me a gift the other day.  She was in a store and saw a cross made out of clay, and best of all it is zebra striped.  She said it caught her eye, because she knows that the color for rare disease is the zebra stripe.  You place the cross in your hands while praying, what an awesome way to feel closer to God.  It is so nice to have a friend that pays attention to your trials and troubles with this rare disease.

The hubs

I just wanted to say a few things about my husband, Gary, as he has had to travel this journey with me.  He is a champion, this page is going to sound gushy but that is the only way to explain him.  He realizes I shouldn't be alone in this horrible disease, we are in it together.  Even though I feel the pain I can tell he wishes a hundred times over that he could take the pain upon him, himself.  Gary has talked me through so many melt downs that I cannot even count. He can tell by my face each and every day the pain level I am experiencing.  He knows before I'm willing to admit that it is time to go lay down.  He has gallantly taken on the housework and all the yard work like a trooper.  I don't have to do anything unless I want to.  I do love to tinker in the gardens, but will stop when the pain starts.  He has an office job outside the home.  He calls me often during the day to see if I'm ok.  Even over the phone he can tell when I'm about to have a melt down and quietly talks me through it.  Words cannot even express how much I love this guy.  God broke the mold when he created him.  Gary was raised right by a wonderful mother and father.  Gary, I love you and I'm not sure what I did to get a guy like you.  Only God can see our lives and he knew I would need someone strong and caring.

Surgery is a Go!

Talked with Laura at Dr. F's office today.  She actually answered the phone, didn't need to leave a voicemail.  Surgery is a go on September 12th.  It will be at 10:00 with arrival time at 8:00.  It is in Dallas, so the drive won't be bad, just 40 minutes.  In Texas, 40 minutes is just around the corner.  She is also sending me a packet of information.  I asked about pre-op and she said it is done over the phone.  I think that is a little strange.  I can't wait to sit again for more than 15 minutes at a time.  I know I will need to be patient during recovery and I will. :)

Tentative surgery date

Laura with Dr. Feigenbaum's office called me yesterday and said insurance approved my surgery.  She has a tentative surgery date of September 12th for me.  She has to double check with the stomach surgeon to make sure he is available on that date.  I sure hope he is.  I'm ready to get this over with and see if it works:)

Walk

It was kind of a nice morning here in Texas so I decided to go for a walk.  I went about 1.5 miles, probably .5 miles too far.  It was nice to get outside.

Some Good News

Laura from Dr. F's office called and she is going to start working on my file for surgery, Monday, August 13th.  Hopefully surgery will be soon to follow.  They have to go through my stomach, since the cysts are in the pelvic area.

The Beginning

I'm hoping this blog will help chronicle my journey with Tarlov Cyst Disease, and if someone with my condition stumbles across this blog, maybe it will help them in their journey also.

First, a little bit about me. I'm a 54 year old female, living in Ponder, Texas. Ponder is a small town just north of Ft. Worth and west of Dallas. I have the most wonderful, thoughtful husband that I could ever imagine. We are empty nesters. We have two beautiful daughters, who have found the greatest guys ever. Our oldest daughter is pregnant with our first grand baby. We find out at the end of July if it will be a boy or girl. It's like Christmas all over again. I wish I were a great writer, like some of the bloggers out there, but I'm not. I just want to get my story out there and hopefully connect with other people who suffer from this rare disease, to bring a shoulder to cry on, or just listen to your fears. Like most of you, I have never heard of Tarlov cysts, let alone all the ugliness it brings not only to yourself, but to those around you. I believe my problems started back in 2006, when I threw my back out and tripped over our dog and landed straight on my rear all in the same day. This was my first experience with epidurals. I had three in a row, two weeks apart. This was prescribed by a neurosurgeon. Actually first was the always prescribed physical therapy,that seems to make things worse. I also had an MRI, I would love to have access to that MRI now. Did it show a Tralov cyst then? I won't bore you with all the other details of my life, with many epidurals, painmeds and such. We will fast forward to 2010 - 2012. My job requires sitting all day at a computer. I started noticing pain once again coming back. I went back to my pain management doctor and he ordered an MRI. The MRI showed disc bulge at L4 and herniated at L5 /S1. He said the only step from here was surgery. I took my MRI to one of the top neurosurgeons in North Texas (at least he thinks he is). He basically said surgery would not help me. I felt two inches tall for basically wasting his time. So, another round of painful physical therapy and epidurals. This is when things start to go south. I decided to have spinal decompression on the DRX9000. You pay a ton of money for 15 sessions. At first things were great, I was feeling better. But, after about session 5, I started noticing that it was a little difficult to raise my leg to put my sock on. After a few more sessions I couldn't raise my leg at all. I talked to the doctor and just increased the force of pull on the machine. After about two more sessions, I could barely walk after getting off the machine. I told the doctor I could not do this anymore. I did get a partial refund. By the way, the doctor did look at my MRI. I believe the decompression is what started the irritation to my cysts.

What are Tarlov Cysts?

Tarlov cysts (hereafter referred to as TCs) are also known as perineural/perineurial, or sacral nerve root cysts. They are dilations of the nerve root sheaths and are abnormal sacs filled with cerebrospinal fluid (hereafter referred to as CSF) that can cause a progressively painful radiculopathy (nerve pain). They are located most prevalently at the S2, S3 level of the sacrum. The sacrum is a fused triangle-shaped bone comprised of the five sacral vertebrae forming the base of the spine. The five lumbar vertebrae are located just above the sacrum, and the four coccygeal vertebrae are just below the sacrum forming the coccyx or tailbone. Perineural cysts can form in any section of the spine; a number of patients have cysts at more than one location of the spine and a number have cysts at multiple locations. Some patients have cysts at all sections of the spine, including cervical, thoracic, lumbar, and sacral. My viewpoint: There are nerves coming out of your sacrum. The bone before your tailbone. The nerves have fluid going in and out of them daily, from your brain. Sometimes a nerve will get clogged and fill up like a balloon. The balloon also has nerves running through it.! Making surgery very difficult. That is why there are only a handful of surgeons that will touch them, for fear of severe damage to the patient?  


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