Are you sure you have the right person?????

  Alright so I guess I have a Pulmonary Appt on the 7^th of Oct at 1:15 p.m.!  Here’s the thing though, I don’t have any idea why nor do I have any idea what Pulmonary even means or how it pertains to me.

  Here is exactly what happened………I was sitting in the Opthamologist office waiting for the doctor to return after dilating my eyes (that was awesome and unexpected) when all of a sudden I hear my phone vibrating, now normally I would not answer the phone but I was so bored with not being able to read my magazine or book , and I couldn’t even text or use the Internet on my phone, I felt like I was going stir crazy.  Anyway, the phone is vibrating and it says unavailable….uh oh now I definitely wouldn’t normally answer this phone call for sure, ( I hate unknown calls) but I pick it up and it is the referral management office for the base and they need to make an appointment with me for PULMONARY?

  Now I am expecting referral management to call me because I need to make an appointment with a Sleep Specialist, Neurosurgeon, Endocrinologist, and a Psychiatrist, but not the Pulmonary clinic.  And now normally to see anyone on base you have to wait WEEKS if not longer, (for instance, my MRI’s aren’t scheduled until 27 Oct and the Neurosurgery clinic is scheduling in Nov at least…Now maybe I am naive but how many BRAIN SURGERIES can be going on at Travis AFB?) Anyway, they say on the phone our first available for you is 7 Oct…Ok now I am freaking out! But I can’t ask the person on the phone anything because she doesn’t know why I need to go all she knows is that I need to be seen.  This is not good news.

  So then I start asking my husband and my mom well why do you think I have to go? And what does Pulmonary even mean because since my eyes are freaking dilated I can’t even research it on the Internet.  Both my husband and my mom are in agreement (that is a rare moment in itself) that it is probably from my lab results, something had to be going on in my labs that would make me need to see the Pulmonary clinic.

  Now am I crazy for wanting at least a PHONE CALL if something shows up in my labs that makes me need a referral for another clinic?  I mean even if it doesn’t have to do with my lungs or any other ORGAN from my body, I would at least like a phone call saying this is why you need to be seen by another clinic.  This way I don’t start freaking out for no reason, or so I don’t act over dramatic and research the Internet see the worst  possible cause to need to see them and automatically think that of course that’s the reason I need to see them.   But maybe that’s just me?????

More questions than answers....

            Let me first say I know I said I would write after my Dr’s appt last week but to tell you the truth I just haven’t had the energy.  I think that my appt is a big reason why I haven’t had the energy.

            I went to that appt with too high of expectations….I went in there thinking this is awesome the Doctor is going to tell me YES you have this CHIARI MALFORMATION and YES IT IS THE ANSWER TO ALL OF YOUR PROBLEMS! I know I know what could I possibly have been thinking?  It turns out I got more questions than answers…..And it all started like this.

            My husband and I got called back into the exam room and the Dr comes in with a shadow Dr.  now this always makes me a little uncomfortable and intimidated but I was so excited to be at the Neurologist after waiting 2 weeks that I didn’t care.  First thing she asks of course is Why are you here…..I start out with the original reason I was referred to this Doctor which was because of my Shaking/Tremors/Twitching….I then stated that my family doctor had ordered an MRI prior to my visit which showed that I have Chiari I Malformation.  The Neuro Doctor then asked what the Family Dr told me about Chiari and this is where the visit went south, I stated the Dr didn’t really tell me anything she stated that I should wait until I came to this appt and you would explain it.  The only thing the Dr did say was that it was nothing to worry about.  Well, the Neuro Doc then says well she’s right, (the dr then starts speaking much faster in her doc lingo) about how my Malformation is 7 mm, and she knows docs that say don’t do surgery if the herniation is less than 3 some say less than 5 and some say less than 8mm.  Then she starts saying how my herniation doesn’t look that bad because it doesn’t look like it is pressing on anything so it really is no big deal, so back to the shaking.

            WHAT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Luckily I had prepared for just this event to take place; I was armed with my handy symptoms list as well as about 12 questions that I wanted answered in reference to this Chiari Malformation thingy as I was still referring to it.  So I actually stood my ground and said excuse me Ma’am but I did some research online (insert dr rolling eyes here) and found a symptoms list off on the Chiari associations web page and off of this list with 27 different symptoms you could be showing I have 19?  All of which are documented in my medical records, so it’s not like I found the list and started getting new symptoms!  At this point the Dr seemed a little perturbed at me and then was like you know what you want to be referred to Neuro Surgery that’s fine…..I’ll refer you, do I think you will benefit from Surgery NO! But I am not a surgeon so I’ll refer you to NS.

            We then start to go over some of my symptoms….the worst one the shaking/twitching/tremors, the dr says that that can be caused by some liver diseases, but also by some thyroid problems, she then states that some of my labs came back weird in 2009 having to do with my thyroid levels but no one contacted me and no one ever did anything about it.  She stated this multiple times about more than one test! (Awesome health care system that the MILITARY has to offer) So she was going to send me for labs, and an Ultra sound and to Endocrinology.

            Then the sleeping problem (why am I so tired, why can I sleep for 14 hours wake up go back to sleep for another 3 or 4, etc….) she states that she wants me to go for a sleep study, and to make sure I get some other test (something like MLT) and to make sure I actually see the Dr because a lot of times you will end up not seeing anyone!  Then she is getting ready to dismiss me and I am like wait a minute…..Shouldn’t I get another test of some kind to make sure that I have this thing Chiari? Or if it is pushing on my spine at all?  And then she goes Oh sure we can get you an MRI on your spine if you want?  And I am thinking SERIOUSLY? SERIOUSLY?  Umm yeah I would like to get that done that would be great!

Well to close this drama filled posting up here is how I ended up having more questions than answers:

1.      I have to get 2 more MRI’s one on my T-Spine and one just on my Spine

2.     I have to see a Neuro Surgeon (which I requested)

3.     I had to get 8 vials of blood taken to redo tests that were done in 09

4.     I had to get an Ultrasound of my Thyroid

5.     I have to see Endocrinology

6.     I need a sleep study

7.     I will need to see a sleep specialist

AWESOME! I went in thinking this is it! The Answer I have been searching for and I come out with a big list of things to do, and other things that may be wrong with me! Wish me luck!

Back and Forth

Well this isn't the Part 2 I thought it would be but I guess it will have to do.  It is 1 AM here in California and I am sitting here anxious for my appt tomorrow.  I feel like I have been walking on egg shells over the last week and a half from when I got the initial call from my Primary Doctor until now. 

  It seems all that I have been doing is going back and forth with my husband....On why he doesn't seem very interested on this disease or condition or whatever you want to call it.  Every night I feel like I am asking him the same things over and over which is just starting little arguments which are driving us apart at the time when I feel I need him the most.  Believe me I am not trying to pass it off as if he is the problem,  I know that I can get in my own head about things and I am fully aware that that is what I am doing right now.  I just wish that we were on the same page with this particular issue!

  He read my blog earlier tonight and took offense to me saying that he was ignoring the situation all together.  He stated that his not wanting to look at or hear any information about the Chiari's is because he wants to enjoy whatever time we had before we went to the Neurologist.  He just wanted to enjoy the time he had with his wife because he feels that tomorrows appt is a GAME CHANGER.  Which if you think about it...it is...Its just that Serge and I want the situation to go in 2 completely different directions.

  Where as I want them to look at the MRI do some more tests and tell me YES I am a candidate for the Brain Surgery.....Serge well he doesn't want them to do the surgery, he is concerned that I will have the surgery put both myself and my family through the recovery and then BOOM symptoms are back even worse than before.  Granted he has good reason for feeling this way as this is what happened when I received my Full Hysterectomy! There was only a 20% chance that I would have residual pain and guess what sometimes I think I am in  even more pain which has made me think the Hysterectomy was the worst decision I have ever made.  So he is worried about that aspect. 

  I on the other hand just want to know that there is a chance that I could feel better.  I tried to tell him that of course there is a chance I could get worse.  But the life that I am living now is definitely not working.  I need to do something and if I am lucky enough to qualify for this Surgery well that's what I will do............

  Wish me Luck and thanks for Reading!!!!!!

Part 1 of my story

Hello Everyone....Let me introduce myself, My name is Jessica and I am a 30 yr old married mother of 3.  I have been going in a continuous downward spiral (in the health department) for probably the last 3 yrs.  It started with my Endometriosis (eventually calling for a "full hysterectomy") in May 09.  Then everything else just started to get worse.

  I have always had headaches and migraines at least it feels that way.  But in 02 they seemed to be almost constant so they put me on Topamax 100mg and that seemed to help alot until this past year.  This past year I started getting headaches and migraines more often than not where now I am to the point where they are practically daily. Along with the headaches I have developed something with the tightening in my neck where I cant turn my head anymore with out it hurting.  I have also been having vision problems more recently where my vision is not only blurry but it seems like now I am developing a bit of a "lazy eye" as well as eye pain where it literally feels like someone is shoving a fork right through the back of my eyeball.  I also have IBS, nausea sometimes, no sex drive whatsoever...but the 2 most concerning things to me are definitely the things that I feel affect my life the most....

  The 2 things that are affecting me the most are #1 I have this "tremor" or "Twitching" it's actually both now I don't even know if this is a symptom of Chiari but I am sure as hell hoping it is.  This has wreaked havoc on my life....I literally cant sit still.  I can't cuddle with my husband or children because I kick them or elbow them spontaneously.  It has gotten much worse over time...at first it was just my hands and now it is every single part of my body....People actually stare at me which is definitley great...I mean even some people have the balls to say to me "so what up with the shaking".  The other thing that has created the most problems in my life is the being tired ALL THE TIME...Seriously all the time I am not exaggerating here at all.  I could and have slept for 3 or 4 days straight.  I can wake up at 9 take a nap at 11 wake up at 2 lay down again at 4 get up at 6 and go to bed at 7 and wake up the next morning STILL TIRED and I dont mean tired like a cup of cofee will wake me up I mean I am not able to function because my eyes are closing and my head keeps falling. 

  The tired thing is absolutley affecting the rest of my life I always feel guilty for not being able to play or go out like all of the other moms and wives.  Recently I have been having a really tough time dealing with that..I have often been thinking what if I wasn't here anymore would they honestly miss me or have I become more of a burden than a blessing to them? 

  And then finally a diagnosis came in for Chiari now I have am appointment with a neurologist for the 22nd and all I have been thinking about is all of the different scenarios that could take place.  My husband on the otherhand has decided to ignore the whole situation until we go to the Dr. So I have been very lonely the past week and a half with just my mom to talk to on the phone...So hearing from other people going through the same thing as me would be a welcome change!