Still no answers

Still no answers on my hip. Traveled all the way up to Indy, 4 hour drive one way and left with ZERO answers! He was dumbfounded and wants more tests. This time a lovely 2 hour MRI with a large needle inserted directly into my hip joint that injects dye and lidocaine, then a consult with him a few hours later to see what it showed. Not holding much faith on this. After you have been through as much as I have, you lose all hope that anything will ever get better :( Sad, but true. So there's the update. I go back March 18th and will update then.

Neurofreak

I am officially a neurofreak. I was just dx with Trigeminal Neuralgia by my dentist. Still have to see a NL for N "official" dx but the dentists are usually the first to see patients with this b/c people believe it is a problem tooth. Had the full xrays, they spend 45 mins today doing every test you can imagine to try and prove it was a tooth. Errr, wrong. 1 in 15,000 get this so it's pretty darn rare considering Chiari is "rare" with only 1 in 1,000 having it...

This is also known as the "suicide disease" b/c it has such a high suicide rate due to the severe pain it causes. Great, right?

I just got back from a recent trip to a specialist 4 hours away for another "rare" condition with my hip. 2 surgeons and yet no one knows what the exact problem is. Going back in a few weeks for more tests. A MRI with a needle inserted directly into my hip joint and they inject dye straight into the hip joint OUCH!

Here is some more info on TN: http://en.wikipedia.org/wiki/Trigeminal_neuralgia

So hi there, it's me neurofreak.

Bring it on!

So after 3 years of dealing with constant, chronic hip pain that leaves me completely unable to move and on a cane on my bad days (although I really should use a wheelchair) I've finally decided to see a specialist :( I'm not happy that it has come to this. I've been seeing my ortho for over a year now. He sends me to the hospital every 3 months or so for a hip injection directly into my hip joint. I lay on this cold table with this giant machine over my body that I've been told is like a "moving xray". You see, they have to thread this very large catheter like needle directly into my hip joint and this guides them to where they need to be in real time. Pretty cool. I'm stuck with who knows how many needles to begin with. The burning pain that goes down my leg and into my crotch is enough for me to punch the doctor in his face. But I can't, so I lay there and cringe. Finally the burning goes away only to be filled with this very long needle catheter looking thing. Even though I'm "numb", I can feel that stupid thing going into my hip. I can feel it wiggling around. I can feel when they inject the 2 syringes full of meds. One is a steriod, the other an anesthetic to hopefully grant me some relief. I tell them I can feel it to which they ignore me and keep going.

As soon as they are done, I hobble out of there, in tears b/c of the pain. Not from the hip pain but from the shot. Now I'm not one to cry over pain, I never even felt a contraction while giving birth to my twins, didn't take any meds after my c-section with them, I made it through my brain surgery and neck surgery like a champ! I didn't even shed a tear when I had kidney stones so bad that it blocked and required emergency surgery not to mention laying in the hospital for 4 days fighting multiple infections that this caused but this pain will bring me to my knees in pure agony. Never in my life have I felt anything as painful as this. So I walk out of the hospital, waiting for my husband and kids to pick me up. As I get in the truck, still in tears, I look over at him and say "never again will I get that d*mn shot". And I swear, I will not.

So my ortho thinks I have this rare problem<--imagine that? There is only one, yes only ONE place in the US that does this surgery. Forntualy it's in my home state, about 4 hours away. YAY! But this place has only done 2,000, yes only 2,000 of these surgeries EVER. Great. I don't even have a clue as to what type of surgery will be done. I don't care at this point, I want this pain GONE or at least better then what it is. The shot only helps maybe 60%, enough I can walk without a cane but I limp and it hurts so bad still. I'm not even sure I can go through this surgery. Things I have read state "6 week recovery with intense physical therapy and 6 months before back to normal" WHAT! I can't do PT at any level, let alone intense! So this consult might just be that. "sorry we can't operate on you, you are destined for this pain and those horrid injections every 3 months for the rest of your life"

So I have a month to wait. I scheduled the apt just at the same time a HUGE reptile show is going on, something hubby and I have been wanting to go to for a long time. Might as well get 2 birds with one stone right?

Insurance people. ugh

So it's that time of year again when my husband's job decides to hunt for cheaper ins. I hate it. Those forms are long and annoying not to mention intrusive! So I fill out what they want, on a seperate sheet of paper b/c do they really expect me to fill out everything I have on 3 lines _____________ this long?

Well we get a call a few days ago that they need more info, wonderful. My dh is out on location for work and has been for the last 2 weeks (and will again next week) so he can't talk to them so it's up to me. double wondeful. So I talk to a lady who obviously is just an office person as she has no clue what I'm talking about. I told her 4 times that CM and SM were progressive neurological conditions in response to her "what is the prognosis". It's progressive as in it will never get better, ever never. I finally had to say "I'm either going to die or become paralized b/c it is progressive and won't go away. Really? give me a break, lady! I kinda like to forget that is possibly my future!

Oh and I love telling her that I had to seek treatment for depression when I was first dx. why, she asked? Hmmmmm..24 years old, dx with several incurable conditions that are progressive and will leave me in a wheelchair, paralized...na, never mind being sad, angry, upset, resentful, bitter about that, heck no, let's throw a party instead!

And then up comes my future hip surgery. Sorry, I don't know what it entails, neither do any of the doctors. My ortho says it's very rare, he's only seen a few cases when he was in med school and only in athletes (uh, never been one, sorry) so he is referring me to a specialist over 4 hours away that has only done 2,000 of these types of surgeries EVER IN THE UNITED STATES! triple wonderful. Sorry, I can't be more clear, ma'am.

"Has anyone in your family had to be hospitalized in the past 5 years or has a medical claim over $2,000?" HAHA! yea, I meet those within the first 3 months of the year, lady! A hip shot directly into my hip joint every 3 months will do that to ya!

*sigh*

To the judgemental

This is something that I wrote back in August after an incident at my local shopping center....

To the judgemental, dirty look giving people that I encounter daily in parking lots:

I know to you that I look "normal". I'm young, attractive, I wear nice clothes, I do not walk with a cane on most days nor do I need a wheelchair to get around. I do happen to have a slight limp but that's ok. I also happen to have 2 small children. I might look "normal" and have all the "normal" things that someone my age might have but I also happen to be disabled. I try not to park in the handicap parking spots but if I'm unable to find a spot close enough, I have no choice. Please stop giving me the dirty looks and the eye rolls. I'm not stealing my grandmother's handicap sticker, that is mine. My doctor gave it to me b/c I need it. Little do you know I have an extremely rare birth defect. I could drop dead right now and I'm slowly going paralized from a neurological disease that it has caused. Little do you know, I have a metal plate in my neck and a cadavar bone graph b/c I also suffer horrible, debilitating bone abnormalities. Little do you know that in 6 days, I will celebrate the 5 year anniversary of surviving major brain surgery. Little do you know that I'm missing parts of my skull that are still OPEN. Little do you know they also opened the outer layer of my brain and replaced with a piece taken from the top of my head. Little do you know that they had to shave off the back of my neck bones. Little do you know that I need hip surgery NOW but keep putting it off b/c of yet another rare problem that I seem to have.

So I may look "normal" with my long blonde hair pulled back in a pony tail hiding a foot long scar that once held 27 staples. I still bear the scar from the neck surgery in the front of my neck. Yep, that is what that 3 inch scar is that children so innocently point out to me.

I'm waiting for you to say something to me one day rather then judge a book by it's cover. I would love to tell you all of this and maybe you could see the error in your ways. Please don't assume that b/c someone looks "normal", they are. I'm strong, I'm a fighter and I refuse to let these diseases rule my life. I shouldn't lift my kids, really anything over 8 lbs is dangerous but I'm a mother first and when I have things to do and no one to help, I gotta do what I gotta do.

Sincerely,
The disabled mom that just tries to live my life like everyone else

Me

I guess I should tell you a bit about myself in the first post :) I'm 30 years old, married for nearly 9 years, together for 12. We met when we were teenagers and quickly fell in love. We also have 3.5 year old identical twin girls that are the absolute light of our lives! They drive us crazy at times but we love'em anyways. I'm also a huge animal lover and share my home with 4 dogs, 2 cats, 5 snakes, 2 frogs, and lots of fish. We live in the country, 9.5 beautiful wooded acres, huge lake, no neighbors in site and we enjoy living out our lives here. Oh, I also happen to be disabled. It's a long story but here goes.

5 years ago this past May, when I was just 24 years old, I was diagnosed with Syringomyelia. It's a lesion in the center of your spinal cord that progresses over time and can lead to paralysis and also death in some cases. In a hunt to find the cause of this, I went through a few doctors that told me it was no big deal and to come back when I could no longer walk. I didn't like that answer and decided to move on in search of a "real" doctor, a specialist in one of the diseases that causes this "syrinx" 80% of the time. 5 hour trip one way and I got my answer, Arnold-Chiari Malformation. It's a rare, congential condition where basically your skull is too small for your brain so in order to make room, your brain falls into your spinal column, blocking csf (spinal fluid) flow and thus causing it to back up and causing this lesion. The plan? Immediate, that day surgery! I was stunned, in shock, didn't know what to think. I've always been a healthy person and now they want me to go to brain surgery THE SAME DAY! While I was there, they did something called a cine mri that measures your csf flow. Mine was zero, I had no flow to my brain. This could easily cause a stroke or death. The doctor insisted I stay, I insisted I go home. At the time, I was in shock and did not realize the severity of it.

Surgery was scheduled for less then a month away. I continued to work and one day, shortly before surgery while I was enjoying a nice book outside during my lunch break, I started to feel funny. Tingling, dazed, confused almost. All of sudden, my body went limp. I couldn't move anything, I could not speak, I was paralized. Luckily a few co-workers were walking by and noticed me slumped over a park bench, called my MIL (why not 911, I don't know) and my MIL came and picked me up and took me to the ER. She explained what I was recently dx with and the severity of it. They ignored her. Several hours later, and my mom and husband down their throats, they finally agreed to give me a MRI to see if anything had progressed, luckily it did not. 13 hours later, I started to regain function and it took a few days to completely regain any normalcy. The reason local doctors said what happened??? Panic attack. Wow. I did not know a panic attack could do that, oh wait, it wasn't a panic attack in the first place! The specialist said it was absolutely a stroke like episode and I'm lucky I regained function the way that I did.

And that is why I have yet to find a good doctor where I live. I've been looking for all these years. My specialist has since moved and is now 5 states away now! I live near a very large city, 3rd largest in my state, yet no one knows what they are doing here. I have been told to make paper airplanes out of written prescription tablets b/c I don't want meds, I have been told that I should be dead or retarded <--her word, not mine. I was told that they could just laser the lesion off my spinal cord (which btw, they are not curable and surgery is merely a treatment, not a cure), I 've been told that nothing is wrong but to come back when I couldn't walk and maybe, I could be helped. Another doctor wanted to stick needles directly into the lesion and see what happens. Uh, no thank you.

Okay, this is getting really long. So I had surgery, surgery was successful in the fact that my syrinx (lesion) is now stable and has not progressed all these years but it was unsuccessful in taking my symptoms away. Just to name a few: daily headaches, blurred vision, numbness/tingling in hands/feet, chronic pain, muscle weakness, balance issues, neck/back pain, unable to open anything or even write with a pen b/c it hurts so bad, trouble swallowing, trouble walking due to muscle weakness, unable to feel hot/cold well, did I mention chronic pain? I have a list of approx 80 symptoms and I am still med free. I manage my pain with a healthy mind set, exercise (I have twins remember?), and good eating habits.

I also had neck surgery in 2007. A fusion and straightening surgery that left me with a cadavor bone graph and a metal plate w/ 4 screws. This was due to a shattered deg disc that left shards of bone in my spinal cord and also cervical kyphosis that was reversing the natural curve of the neck and causing my spinal cord to flatten out. My specialist gave me 1 year or less before it would snap my spinal cord and paralize me from the neck down.

My full diagnoses are: Chiari Malformation, Syringomyelia, Deg Disc Disease, Cervical Kyphosis, Scoliosis, Hip Impingement (need surgery for this right now), and Hypotension.

It's been a hell of a ride. My twins were delivered right in the middle of all of this. Children were not suppose to be an option for me. We went against the doctors and on the first try, with no medical help, I conceived our twin girls. That story is for another day :)