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Archive for the ‘appointment’ Category

Under Pressure

We kept it fairly under the radar, but I had an appointment with a neurologist here in town a few weeks ago.  Throughout the summer I’ve had a smattering of headaches and some point tenderness at my surgical site.  My OB thought it warranted a trip to the neuro just to make sure there was nothing going on with the Chiari.

Thankfully, the neurologist doesn’t believe for an instance that it’s Chiari related.  Instead he believes they are probably pregnancy induced and exacerbated by not being able to take any typical migraine meds for them.  He started me on magnesium and riboflavin supplements as a preventative measure to see if it was deficiency related.

The supplements haven’t seemed to make much difference but it’s become increasingly apparent to us that these headaches are weather related.  I had suspicions early on that was the case.  After 2 horrible headaches in the last week, on days with almost identical weather patterns, my suspicions are pretty well confirmed.

It seems as though I get headaches when we have a change in weather blow through.  Especially when we have high winds bringing in a storm front.  My guess is that it’s the change in barometric pressure that is triggering the pain.

Perhaps they’d be easily managed with my normal meds, but for now I’m trying to combat them with fluids, tylenol, sudafed and a pain pill (per the approval of both my OB and neurologist) when they get bad.  Hopefully fall will make its final appearance soon and these weather changes will stabilize.

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On July 20, 2009 I went to my NP to get the results from my MRI.  As I drove across town I had fears and anxiety about what I’d hear.  With the symptoms I was presenting his concern, although unlikely in his opinion, was multiple sclerosis.  Since I have familial history it wasn’t a complete shot in the dark.

There was no way I was prepared for what I heard.  It was that appointment where he told me about the chiari malformation.  He also said that he knew very little about what it was, what it meant and what the prognosis was.  All he knew is that someone who got “paid more money”, i.e. a neurosurgeon, needed to talk to me about it.

After leaving the office that day, I sat in the parking lot stunned before starting my vehicle.  I had been preparing myself for something I was familiar with.  Not something that I’d never heard of.  Worse yet, not something that my doctor couldn’t even tell me much about.

When I looked at the calendar yesterday, I could hardly believe it has been a year since that appointment.  What an amazing year it has been!

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Surgical Follow-up

Tuesday of this week, we made the jaunt back down to the University of Utah for a CT scan and a follow-up appointment with the neurosurgeon.

Thankfully, everything looks fantastic.   The head CT shows that surgery has completely restored the flow of spinal fluid in/out of my brain.   Dr. Schmidt has concluded the to surgery to be “perfectly successful” and was pleased to see me doing so well.   He feels there is no need for physical therapy at this time, just some light stretching and massage to relieve the lingering tenderness and stiffness in my neck.

Personally, I feel really good (especially after fully recovering from the swine flu).   Without a doubt, the most miraculous aspect of all of this is my constant headaches are gone.   My energy is still low, but every day I continue to see improvements.

It’s hard to believe that as of today, it has been 6-weeks since the surgery.   This six weeks has flown by so much more quickly than the six week span between the initial appointment in Salt Lake City and the surgery.

We will be eternally grateful for the friends and family who have volunteered their time to come to Utah/Idaho and help out —  my sister Krystal, my friend Kristin, Cris’ sister Jessica, his Aunt Renee and his Mom — simply saying thank you seems to fall incredibly short in terms of letting them know how much their help has meant to our family.

As I’ve said many times in the last 6 weeks, especially in the last 3 days, we have much to be thankful for this Thanksgiving.

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More Opinions

(Opinion #2)

Last week, Thursday I met with the neurosurgeon here in Idaho Falls.  At first he was very friendly, easy going and seemed genuinely concerned about my case.  About 5 minutes into the consultation my appointment with Dr. Schmidt at the University of Utah was brought up and his demeanor completely changed.  I had hoped he would be more open to the idea that I had sought a second opinion but it seemed as if he was offended that HE was the second opinion.  Due to scheduling, it just worked out that I didn’t get into him first.

The appointment with Dr. Greenwald didn’t set well with me at all.  He focused solely on the headaches and blew off all of the other symptoms.  Even the lack of spinal fluid flow to the back of my brain.  His recommendation was to see a neurologist and do a complete work-up on my headaches and try to find both a preventative medication and a rescue medication that worked more efficiently.  After all, they were “just migraines”.

I was upset that he didn’t seem concerned about the other symptoms.  Dizziness, blackouts, visual disturbances, etc. seem to be pretty important symptoms to just glance over.  At least in my opinion.  But I was somewhat concerned that I had tunnel vision in regards to surgery and perhaps I should listen to his advice and meet with a neurologist.

(Opinion #3)

Fortunately, the neurologist’s office had a cancellation yesterday and called me Monday afternoon to see if I could take the appointment.  I took it with some hesitation and debated canceling it to save myself the trip across town.  I’m glad I opted to keep the appointment though, because Dr. Garland reaffirmed the need for surgery and validated that my other symptoms shouldn’t be overlooked.  Much of his concern centered around the occurrence of blackouts that has recently developed.  His opinion was that new symptoms like that were progression of the Chiari and a direct result of the compromised spinal fluid flow.  He felt like I might have a history of migraines but the constant headaches now are certainly Chiari related and need to be addressed through decompression surgery.  In his opinion, it would be ridiculous to do a work up before surgery–a waste of both his and my time.  His hope was that my headaches would be completely resolved post decompression, but if not to contact his office in 6-8 months (to give myself sufficient time for recovery) and we’d discuss options and possibly a different course of treatment for them, then.

So 2 out of 3 doctors recommend surgery.  I feel better knowing that more than one professional feels strongly about the condition and needing to treat it.  There are still fears but no questioning the decision to schedule the decompression.

Onward we continue to march…

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The Long(er) Version

My head is still reeling from the appointment on Wednesday and I’ve been trying to make phone calls to let people know what’s going on.  Hence the delay in getting this up.

We met with a neurosurgeon at the University of Utah on Wednesday. I really, really like the doctor and felt very comfortable with him from the beginning of the appointment.  Although running slightly late for my appointment, he spent an hour in the exam room with us for the consultation.  He pulled up the MRI images from July and showed us exactly what was going inside this big brain of mine.

The Chiari malformation is crowding the spinal column and severely impeding the flow of spinal fluid in/out of my brain.  This crowding and obstruction of fluid flow is the cause for the headaches and the other symptoms.

He never faltered on the recommendation to do surgery. After his examination and looking at the MRI from July he immediately recommended it. According to him, I am a textbook case and he feels that I would highly benefit from decompression surgery.

To look more in depth at the cerebral spinal fluid flow, he ordered more in depth MRI’s.  Fortunately for us they could literally get me in right then.  While on the phone with our insurance company for pre-authorization I hurried across the medical building to the MRI department.  An hour and a half later I was dressed once again and discussing with Cris the next step.

Before the appointment, and on the drive down to Salt Lake on Wednesday, we had discusses what we would do IF he recommended the decompression surgery.  Although both of us are scared at the though of brain surgery we had agreed that if it was recommended we wouldn’t hesitate to have it done.  Neither of us wants it to progress to the point of permanent damage and we’re both concerned about how quickly is has been progressing lately.

To save us some phone calls we made our way back to the nurses’ station in the Neurosurgery Clinic to talk about scheduling surgery.  After another wait in the waiting room, we were brought back to an exam room and told that Dr. Schmidt was finishing up with a patient and would see us again to go over the day’s MRI images.

The new images further solidified his recommendation. Not only is the flow of cerebral spinal fluid severely compromised due to obstruction into the spinal column, there is NO flow at all into the back of my brain. When I move my head to look up or down the Chiari forms little pegs and “stabs” into the spinal column and cord.  If it’s not operated on and the pressure isn’t released, it has the potential to cause permanent damage and possible paralysis.

Surgery is set for Friday, October 2nd (6 weeks from today) down at the University of Utah. I will be in ICU for 24 hours post-surgery and will most likely be in the hospital 3-5 days total.  After my release he recommends that we stay in Salt Lake a couple of days to allow me to rest before attempting the 4-hour drive to Idaho Falls.

Recovery will be tough and long.  I am looking at 4-6 weeks of very limited activity afterward.  Full recovery could take months to a year.  It all depends on my body and how quickly it heals itself.

The neurosurgeon feels confident that the decompression surgery will provide fantastic relief and a vast improvement in my quality of life.

But frankly, it’s still brain surgery.  And that is scary.

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On the Road

And away we go…

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Pivotal Day Ahead

When I made the appointment three weeks ago, it felt as it would take forever for August 19th to arrive.  I felt like I couldn’t make it the three weeks to the appointment.  As I sit here tonight in the silence of the house I wish that I could stop time and not move forward to tomorrow.

I’m scared that the neurosurgeon will want to go ahead with surgery.

I’m scared that on the other hand, the neurosurgeon will want to treat the symptoms instead of surgery.

I don’t want to have my head cracked open but I don’t want to live doped on pain medications for who knows how long.  I want to feel better. I want to fix the problem instead of managing the symptoms.

I don’t want to worry about the headaches interfering with plans; I don’t want the vision disturbances to make me hesitant to drive; I don’t want the dizziness to become dangerous.  I don’t like how the symptoms are progressing.  It scares me (and many of you).

As anxious as I am for some answers and some directions, I know that tomorrow is a huge day for us.  Just as the initial diagnosis was life altering, I feel there is much hanging in the balance tonight, waiting for the pendulum to swing in one direction or the other.

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