Fusions and Foul moods

Saw the Neurosurgeon yesterday for a follow up on the Chiari surgery. Everything looks good other than the muscle spasms which he says are not unheard of, even if they are not "normal" for two months post-op. I can't really complain, the neck doesn't stop me doing anything - it just gets annoying and sore. So no new news on the Chiari front - follow up in 3 months.

We did discuss my back however :-( He had said my degeneration was bad enough to be surgical but I never had the chance to discuss his thoughts on how to fix. Was kinda busy with the whole brain surgery thing. So, yesterday we sat down and discussed my low back. The MRI he is going by is almost 2 years old but he is suggesting a fusion of the L5-S1 based on my pain, limited abilities and past attempts at non-surgical treatments. He wasn't pushing the surgery but in the way I have come to know as Dr. Sullivan - he listened and said it was up to me to decide when and if I have surgery. He gave me the risks and his stats on outcomes and left it up to me.

I did have the MRI also last night that the pain clinic Doc ordered. Now I wait for him to call me and schedule the injection. I am hoping to avoid surgery and recovery during summer. I did take a peek and the disc looks bad. It is dark, thin and jagged. It was easy to see why I hurt even though I am no radiologist.

More of the waiting game now and this (or maybe just life) has me in a foul mood lately. I find it harder and harder to see a life for myself, one that doesn't hurt anyways.

Plan in place - well sorta

Saw the pain clinic Doctor yesterday. I saw Dr. Chiodo at U of M and he was a nice man, short on words but seemed genuinely concerned for my well being (for the most part). I have no reflex in my left ankle which shouldn't surprise me, it is the one that gets the pins and needles and numbness most often. In fact at times this foot doesn't move when I tell it to. He said my DDD has caused a nerve root to trigger muscle spasms in my back (gee that's just what it feels like) but since it is a nerve causing it, no meds will help. So - steroid injections it is. AFTER I get a new MRI. The current MRI is a year and a half old and things are MUCH different. He wants to know what he is dealing with and I am glad to get the new MRI as I am curious and I would rather he have a clue what he is dealing with. Sadly, this means I must wait for relief. His answer to my question of how do I get by until was for me to avoid the position that triggers the spasms - ummm - yeah that would be vertical :-(

So MRI ordered for next Tuesday, which is cool because Ann Arbor is an hour and a half away and that is the same day as my Neuro follow up. So, I will stay in the area and visit my Mommy in between appointments :-) I did address the fact that the last steroid injection was like I was in hell. They did "sedate" me but I felt everything! It felt like they were burning my nerves in the back of my leg. Now that I have been through a surgery with a Doctor who knew how to monitor me, I can tell this Doc that I need more meds than a normal person and he can verify this with my Neuro. The Neuro Doc told me he has never seen anyone need more meds during a surgery than me. He tried to look up my records but they wern't there yet so he will contact the Neuro and go by what they gave me. YAY! No torture during the procedure :-)

So, in the meantime - I am just stuck being a couch potatoe :-( I want my life back!

Found another four letter word - FEAR

Well the cold has finally let up for the most part. I still have a slight cough and some stuffiness but nothing like it was thank God! Back is still an issue, seems to be getting worse everyday :-( It is so bad, yesterday was my birthday and Dave offered me a nice dinner to which I had to say no, I just couldn't do it. I did enjoy my day though. I watched a movie with a good friend - Blindside - GREAT movie! We had banana splits with the kids followed by a few games UNO. Dave got me a massage and pedicure for next Thursday plus new PJ's! YAY!

I decided yesterday to try a hunch. A long shot but I remembered one physical therapist saying he hated Soma, he said it caused rebound muscle spasms. Since that is what it feels like is going on in my back (well, more like a charlie horse than a plain spasm), I decided to try stopping the soma. Surprised to say, my neck doesn't feel a ton worse. I can feel a tad bit of stiffness but nothing major. No changes on the back but we shall see. If he is right, it will take a few days to notice the difference. If it isn't helping me, I don't need it anyways. One less med in my system is a good thing.

Now - on to the fear. I guess I have this thing with four letter words. Fear is the latest. I find myself very scared of the results of my surgery at times. So many horror stories, sometimes it is hard to believe that ALL my Chiari symptoms are gone - yet they are. This morning I noticed an odd one returning and it has me scared. It's a silly one really. It wasn't even on my list of symptoms. For the past year and half, I have had this sound in my left ear - like there is water in it. I assumed it was from my ear surgery 13 years ago. I had a cholesteotoma and had a tympanomastoidectomy with two new hearing bones. Funny thing is - the day after surgery I noticed the sound was GONE. Seems it was spinal fluid I was hearing, not an odd symptom of Chiari - just one I didn't know was one of my symptoms. So - here I am this morning - I touch my ear and I hear that sound. Faint, but it is there.

My heart sank in my chest almost instantly. Damn Chiari I thought. I am going to be one of them I thought. It is never going to end I thought. I will never get my life back I thought. How fast I forget what I have learned. God has worked so hard teaching me to trust Him in this and I throw it all out the window from one stupid noise in my ear. It took my over an hour to realize it could be the fact that I have this major cold thing going on. It could be the spinal fluid just shifting. It could be NOTHING! yet I was so quick to assume the worst. So quick to give in to the fear. Fear has no place in my life! Silly human!

I feel for the poor mortals

I have been cocky when it comes to my health. Not my conditions, my regular health. I *NEVER* get sick! I am talking the flu and colds. When I do get them, it is usually fast and furious. A few horrible hours and then I am back to normal. I have never understood horrible colds or the flu that lasts days. I have not experienced them. Until now.

I am still VERY sick! I live on Nyquil. This cold has kicked my butt and taken my name for sure. When I cough, my head hurts so I am living on Nyquil. The gold standard for colds, you'd think after all these years they could make it taste a little better. At least it works. I am weak, my chest and head hurt and I am a big baby! Cranky, needy and just not fun to be around. Now I get it! Dave even said he has never seen me this sick in the six years we have been together. Not sure if the surgery itself has made me more prone or the steroids but either way - being sick SUCKS!!!

Finally heard from the pain clinic. I have an appointment Tuesday at 5:00. I am glad I get to talk to the Doc before the injection, even if it means waiting a few. Of course I say that now since I am so sick I can't do a thing so the back isn't an issue.

Trying not to get down. Trying to remember this is a season. Trying to hold out hope that it gets better.....

UGH - get me a tissue!!!

As if I don't have enough health crap going on, I now have a fierce cold. Stuffy nose, congested in the chest, sore throat - the whole deal. I haven't had a cold this bad in years but this doesn't surprise me, having been on prednisone for more than a month.

Made it through an hour of church Sunday, 1/2 hour more than the last time I tried so I guess that's progress. Sad part is that it was my back that made me leave early. It does end right? I am at the point where just taking a shower brings on one of the back fits and I am DONE for hours :-( Still waiting for the Doctor at the pain clinic to review my file so I can get in to see them. It cannot happen fast enough. I REALLY want a new MRI of my lower back, the last one was 1 1/2 years ago and things are VERY different now. The pain is way stronger, the weakness and tingling is new and now the pain is higher up my back. The plan is to get one at the 3 month check-up, MRI's of my entire spine and that should suit the Neurosurgeon until the back surgery. He wants the MRI to be within 6 months of surgery. If the steroid shots do not work, I will not make it until fall for surgery. I have NO quality of life as is. I cannot do anything. I can't even sweep a room :-(

Had a super nice surprise yesterday. My oldest son is staying with us for a few days. This may be the last longish visit we get before he goes off to basic training. Daniel is a Chaplain's Assistant in the Michigan National Guard. It sure is nice to have them all under one roof again.

Not EVERYTHING is Chiari

Just rambling now. When you have a disorder as odd and invisible as Chiari, with symptoms wrecking havoc on virtually every part of your body, it is easy to blame everything on Chiari. For so long, I blamed all my symptoms on a multitude of oddities. I had an "excuse" for every symptom since the Doctors didn't seem to have a clue, now I am the opposite. How does one balance it all? Yet again, that word is this blog.

Yesterday I woke up feeling like a truck hit me. My back hurt, I ached all over, was exhausted and had hot/cold flashes all day. Of course I said it's recovery or Chiari related. How easy it is to blame the disorder. Until my 11 YO, who didn't know of my temperature issues complained of the same symptoms. So, a simple bug and here I was blaming Chiari. Not a big deal, just made me wonder. Does it ever go away? Will I ever have a day where that word doesn't enter my head? It must, I did have a few hours where my neck felt normal. First time since surgery where I couldn't feel any pain or any trace of surgery. So it must - right?

I believe in Vampires

Odd title for a Chiari blog written by a Christian but it is the truth, in a fairy tale kinda way. If you are only interested in Chiari info, don't both reading more - this isn't about Chiari for once - it's about life as I see it. Or at least one aspect of it.

When the Twilight series first came out, I resisted. It's vampires after all. For one I am a Christian and for two - well, I grew up on Dracula and there wasn't anything sexy or romantic about those movies to me. My amazing hubby reminded me that I was a youth leader at the time and to connect with teens, one must understand them. So - we rented Twilight. I wasn't expecting much honestly. What I ended up with was falling in love with vampires and annoyed at the Christian community. How the Christian world had let the vampire world corner the market on a movie of what it means to be a man and be in love was beyond me. I was annoyed. Edward LOVED Bella. The deep, primal Love that I believe can only come from God. How do I know? Well, I have it. I HAVE that fairy take love. I am safe with Dave and for us gals, isn't that what it REALLY boils down to?

Sure we have to work at our relationship but I honestly have a man who would die for me and I have no doubts. The vampire world portrayed that so well and so many Christian kids would never see the movie because - well, it's a vampire movie. So sad.

I struggle not to get sucked into two worlds I am surrounded by. One world is a wicked world, ruled by the flesh with no signs of God and no submission to Christ. The other is this bubble that has their children NOT interacting with the outside world for fear of contaminating them. Being a woman who is one giant ball of contradictions, one would think balancing raising my children to be IN the world but not OF the world would be easy, but it's not. I struggle daily. So, I bit the bullet and decided to let them all watch it me. I think we can learn a lot from the series.

Both Jacob and Edward love Bella to the point of she comes first, family means more than anything and learning to be who you are sometimes means hurting the ones you love. Imagine if that movie had both Edward and Jacob as Christians? Talk about impact!