As I'm sure many of you are aware, there is never a dull moment in our house, specially when it come to medical things. My husband says that it's like it comes in waves. We go through a few months of chaos then a few months of calm and it's set on repeat! This time is different though... this time it's him.
Michael started having headaches again several months back. I noticed him complaining of the more, but he told me I was crazy. Back around Christmas I even started tracking them and then told him I thought he should call the doctor. He, of course, refused.... "I'm fine...." is what I got. The last (roughly) three momths he's had a "haziness" about him in addition to the headaches, and he said a few times it was like he felt "out of his body". Again, I said PLEASE call the doctor.... again, he refused.
These headaches have progressed to almost a constant 5/10 headache and a numb feeling in his fingers. Several days a week it comes with the "haziness", inability to focus, and the headache becomes "a headache that puts all migranes to shame", and at times he has trouble putting his thoughts into words coming across somewhat choppy and confused. Mike is also dealing with some tremors in his hands and balance issues that come and go.
Wednesday May 30th, it all came to a head and he finally gave in... his symptoms caused him to be nearly unresponsive for a short period of time. He was unable to speak or move, and just looked at me as if he was terrified and trapped in his own body. When he came out of it his symptoms were pretty bad and even scared him. From May 30th to now has been a whirlwind of appointments with the family doctor (who thought he was having strokes!), neurologists, and now a neurosurgeon.
One week ago today (June 21st) the neurosurgeon told us that his CINE MRI series of his brain, spine, and cerebral spinal fluid confirmed that Mike has
Chiari Malformation with Syringomyelia.
In layman’s terms:
Chiari Malformation happens when for some unknown reason, the cerebellum begins to herniate through the base of the skull into the opening of the spinal cord, “jamming things up” so to speak. Mike’s also has cerebral spinal fluid (CSF) building up IN the spinal cord . He has the CSF building up (Syringomyelia) from his T2 to his T10 vertebrae currently. This is what’s causing his tremors, numbness in the hands, tingling in the hands, and it’s also now causing the debilitating headaches – the headaches that Mike describes as “headaches that put any migraine I’ve ever had to shame”. Essentially they are spinal headaches. Chiari does not always present with this CSF buildup, but when the CSF is collecting abnormally on the spinal cord and there is a Chiari it is typically the result of the Chiari blocking CSF from flowing through the brain properly.
Our options are not easy to choose from...
He can leave it alone and do nothing. There is no medication to treat this disease though and medications to treat symptoms don’t eliminate the symptoms, only lessen them so he’s not AS miserable. The problem with leaving it alone is that the CSF can slowly continue to build up in his spinal cord causing progressive numbness, weakness, and could eventually even lead to partial or complete paralysis. No one can tell us how fast it would progress, just that it is a progressive disease.... no 2 people progress at the same rate or the same way. We really don’t even know how long he has had this disease other than we have copies of his MRI reports from 2001 and it was specifically noted that he had no chiari at that time.
He can have a surgery that is not guaranteed to work. They take out a piece of the lower skull to access the cerebellum and somehow use a synthetic type of material to “lift” the cerebellum back where it belongs, give it more space, and alleviate the herniation. They would also literally open up the lining to the spinal cord up near the brain and “clean it all out” to make sure there isn’t anything in there that’s contributing to the problem. All of this will allow the CSF to freely flow the way it should. It may or may not alleviate the CSF that is built up in his spinal cord, it doesn’t always go completely away. They may be able to insert a shunt into the syrinx to drain it, but they won’t know until they get in there and see it all. The surgery may alleviate some of his symptoms or all of them, but the damage that’s been done by the syrinx to the spinal cord is IRREVERSIBLE... so the numbness, tremors, and tingling he feels in his hands will not go away regardless of surgery. Surgery MAY keep it from progressing. Some people have the surgery and there is no change in function at all. In addition... even if the surgery does work and he feels better, the Chiari could come back and he could find himself right back in the same place. Again, they can’t tell us IF this would happen or if it does how long the period of relief would be. Everyone is different.... no one knows.
Risks of the surgery are scary... it’s brain surgery! It’s not an easy thing. The surgeon could make a mistake and knick the cerebellum or spinal cord causing anything from stroke to paralysis. Scar tissue could form inside the lining to the spinal cord causing it’s own damage. He could come out of it paralized, unable to swallow, unable to speak.... Yikes! There are just no guarantees. Infection is always a risk also – with any surgery. Recovery is long and painful because of the way the surgery is performed. He would spend at least the first day in the ICU and then spend 4-6 additional days in the hospital depending on how he does and his pain level.
There are no easy answers or decisions.
We are asking for prayers for guidance to decide whether or not to go through with the surgery, and Mike is asking also for prayers for courage to "pull the trigger" if surgery is the right thing to do.
Thank you for your love and support!
