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Tarlov Cyst Experiment? An Open Letter to Other Rare Patients

Tarlov Cyst Experiment?   An Open Letter to other Rare Patients 6/4/2019

As I finally am able to sit outside without baking, I realize I have a lot to be thankful for.  First, and it may seem weird, is that the neighbor’s dogs are not barking non-stop.  They are trying to get the tiny one outside more, but that dog is evil.  It scratches anything around, snaps at everything, and sounds like a cat in heat when it gives up on barking to get their attention.  I think it is an older dog, and is being forced outside because they have a young girl living there, or visiting, with a baby.  Yep, I bet that dog is not nice to the baby.  Then, they have a second dog they are trying to use as a guard dog; with no one to train it when to bark or not bark.  So if you sneeze it barks, you move it barks.  You get where I am going with this?  Yep, I am incredibly grateful for the quiet.  Second thing I am grateful for is, the weather.

I am sitting on the swing and when the breeze hits me, I get a chill.  No not a cold chill but a pleasant one.  This will be the first time in over 2 weeks, that at noon, it is not in the 90’s on my deck.  My container garden is even pleased.  A big shout out to the LORD for this breeze and no demanding sun. 

Then, as my third thing I am going to be thankful about is, this disease.  Go, Tarlov Cyst Disease!  Now, that is not to mean I am happy about it.  NO!  I am sitting in the swing, on the deck, and just had my morning melt down.  I bawled very quietly since we don’t want the dog to start up.  But I had a fairly good night of sleep.  Medically induced of course, but it was sleep.  Rest?  Not much.  The outside dog got started at 4:45 and would not shut up.  So I had to get on a music app and turn this laptop into a concert hall; I played opera!  Yep, you know the dog shut up and did not bark as long as the tenors were singing; the sopranos not so much.  He didn’t like the women.  So I opened my window, moved the laptop to it, and turned the volume up.  I could hear the dog settle down.  Who knew?!!  So, by 5:30 I was able to rest some more. 

Anyway, past that drama, why do I say I am grateful for this monster?  I have written about how it has made me more compassionate and boosted up my flagging faith many times.  But, this time, I want to cover the part about it being rare.  Being a rare disease, there is not much information out there for doctors to study and learn from.  Since we know that medicine is a science and science is all about studying, learning, trial and error; then I am one of those tests.  I went into the surgery aspect knowing that less than 1000 people may have had the exact surgery as I was opting for.  Common sense dictates that if this was the case, than it was a trial and error with the chance that things would have unexpected and maybe negative results.  Go back and read my posts on recovery. [ How Long Should Recovery Take?  and The Question of Recovery ]

So, taking in the above paragraph, I consider myself a test subject.  And that the rest of my life will be part of that test.  I am data!  The procedure was a little different than what  the other two doctors do.  There are multiple ways to handle these cysts [and they are all trial and error, might I inject].  After my personal research I opted for the dissections.  I might have been a candidate for fibrin glue, but the way my body handles chemicals I nixed that choice.  Who wants to try something his body might reject and might make things worse?  Since my journey has begun, even that procedure has been refined and more subjects (patients) have had results that help the doctors determine if you would be a good candidate.  Then the doctors that just manage the pain are realizing that each body will respond extremely different to the medicines that are out there.  Some countries have removed some of the medicines being prescribed due to safety issues.  So, even that is a learning step.  There have been great strides into thinking the EMF of our cell phones and wi-fi may aggravate our spinal fluid, thus have an effect to the level of pain and body responses to that pain. 

Think on this for a moment.  I am blogging.  That puts my responses, to the life I am living, out there for a student of medicine to be able to read.  That student is learning.  That student might be a surgeon, a pain doctor, or even another Tarlov Cyst patient.  They can take the blog, and read and ponder my comments, and maybe come up with a solution to better the existing treatments or even to have a light bulb go off and say, “I wonder …!”

Think on this also, if you have a rare disease there is not much information out there on what could be tried.  It is not as simple as a tooth ache.  A tooth can be filled, capped or even removed.  But just as we are learning how poisonous the mercury fillings of the past were to our body, then anything a doctor and patient is willing to try is a learning tool.  Who is to say that what you go thru will not help the next patient or become fodder for the next big solution? 

I read, on blogs, about how upset some people are that they let a doctor try something and then they were not 100% cured.  They rant and rant.  Ummmm, you are a rare person, get over it.  Seems harsh?  No, it is a bit of growing up and accepting that medicine is science.  No one can give you 100% of anything.  Just as trusting that a flu shot will keep you from getting the flu.  If you believe that then you are uneducated.  There is not just one flu out there, and it is an illness that changes with each individual body.  Each body attacks organisms differently.  So, saying the flu shot will keep you from getting the flu is just plain propaganda.  It is a feel-good solution just as taking a piece of candy as medicine each day would be. 

Therefore, if you have a rare disease and have tried something then keep records and records.  That is study data.  Become a scientist.  Then, when you get discouraged, think about how you are helping the next young journeyer.  Be communicative with you doctor; send letters; blog;  even provide you information to research groups.  With my disease, there is no existing research group now or, believe me, I would be lined up.  Not for drugs, but for supplying thoughts and actions.  Even my history is available.  Think about it, with the treatment I have agreed to, I might provide the doctor with some insight that will help him help someone else. 

Do I get mad at that man for trying to help me?  Sorry for the next word, but HELL NO!  At least he was willing to try something.  At least he was willing to believe me!  At least he was giving me hope!  I can never blame a doctor for being a caring man and seeing a need for someone who has a rare disease and trying to fill the gap!  Just think, he could have been like 90% of the other neurosurgeons and say you just need physical therapy and let me put a miracle drug in your spine.  He could have done all this knowing the label on the drug container says not for spinal use. 

Yes, I spend time crying; yes, I have pain and unexplained issues that pop up and scare me.  Yes, I get frustrated.  Yes, I question everything.  But I am an accepting person.  And I am hopeful.  I tossed pity out the window a long time ago.  I pity no one, never myself; and only have pity for those that cannot speak for themselves.

I will close with this one thought:  If you have a rare disease or react differently than what you would have expected, do something about it.  Be the help for the future!    Turn your frustration and anger into a positive.  You are only harming yourself and maybe the next person to have an illness such as you have. 



One thought on “Tarlov Cyst Experiment? An Open Letter to Other Rare Patients

  1. I always tell my doctors I am happy to be a learning tool. I am unusual, I am rare, learn from my case.Learn from me and then go teach your students!


    Posted by Xunae | September 3, 2019, 4:47 pm

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