My Brain Surgery is Scheduled......Yes, Brain Surgery.

So, today’s blog, or should I say tonight’s blog, is going to cover a few different things, so hold on and try to keep up.  You all know that I ramble and lose my train of thought, but I usually find my way back to the original story.  Usually.

Okay, so here’s the thing, we’ve chosen a Neurosurgeon, after months and months of basically interviewing surgeons all over the dang place we finally found one that we trust, and feel completely confident with. Here. In Quincy.   I’m not going to say or post his name though, for a couple of reasons, it’s too easy for people to find crap on every person they want on the internet, or to tell me a hundred bad stories about the person because they have negative thoughts on them themselves, or they’ve heard this or that from whoever.

Here’s the thing though, I DON’T CARE.  I truly, and honestly do not care what anyone thinks about our choice, because WE are comfortable about it, and that’s all that really matters.

This Neurosurgeon covered every concern we ever asked anyone.  He covered most things before he was even asked about them, and to top it off he covered one of my main concerns that other surgeons put off as “the disease of the week on the blogosphere”.  He knew the seriousness of Ehlers-Danlos Syndrome (EDS), and what can happen if he used the wrong type of material for the dura patch, I won’t really get into the logistics about the surgery, but you can look it up here: if you want to learn more about it and recovery. 

I think one of the best things about this particular surgeon, is that he DIDN’T promise us that the surgery would fix anything.  I realize that to some people, not having a promise of a better quality of life may seem crazy.  They’d wonder why I wouldn’t want the surgeon to promise that I’d have relief after the surgery.  Here’s the thing, if he had promised me anything like that, I would have stood up and walked out of the room.  The surgery isn’t a cure, it’s a treatment.  Let me repeat that it is NOT a cure.  I think that’s important for both our families and friends to accept.  I could come out the other side of this surgery and feel exactly like I presently feel. I could have every ache, pain and every other symptom possible. 

My only expectation from this surgery is as follows; I will probably have feeling back in my face, arms and legs. Probably not complete, and possibly not at all, but I should have some. It should relieve pressure on the nerves that are currently being pinched so badly that they are causing my arms and legs to be completely useless at times.  I should have clear vision back, not 20/20 of course, because hey I have mono-vision (for those that don’t know what that is it’s near sighted in one and far sighted in the other) but it should no longer be blurry, or have double vision and hopefully no longer hazy.  The main thing I’m expecting though?  For the progression of this condition to be considerably slowed down.
Recovery will be hellish basically, I may have to relearn how to do many things, including walk.  We hope this won’t be the case but it is a possibility, and it’s one that we have to be prepared for.  I don’t care though, if there is ANY chance that I will feel better than I feel now? We’re taking it. 

Many of you may be thinking, well what’s the rush, why don’t we wait, why don’t we see more surgeons across the country, after all, there are “specialists” in New York, North Carolina, some say in Colorado, some say Texas, some say Wisconsin.  But here is the thing, there’s no guarantee any of those are realistically any better than the others, and I’ve heard both good and bad things about EVERY surgeon we’ve read about or talked to.  I think the biggest thing is that you find one that you trust to do the best for you that they can.  The reason we’re proceeding so quickly is this, I’ve been passing out more frequently, or having Chiari Drop Attacks as they are known.  I’ve tried the dangle technique, for those that don’t know, it’s dangling your arms and moving them and your legs around before standing, but it’s not happening just when I stand up.  I can be walking and suddenly fall, or feel like I’m going to and try to lower myself or sit down quickly.   I have the bruises and scrapes from just this last week to prove it. According to this surgeon and many others, once this starts happening more and more, Chiari patients have a tendency to pass out….....and never wake up.  I realize how crazy that sounds, how impossible it sounds, heck be the person and spouse that it was said to. I’m not going to lie, along with so many other things, and the fact that my passing out already scares my poor husband half to death, this was the final straw. We knew there was no more waiting. It was time.

Please don’t think that we were scared into making this decision, because we really and truly weren’t. As soon as we pulled into the parking lot and parked I told my Shawn that I had a really good feeling about this doctor.  For no reason really, I hadn’t met him or anything, I just had a feeling of peace wash over me. Once we were in his office and treated with such respect that helped, and then seeing awards on his wall where he was so highly rated in his field was amazing.  To have another neurosurgeon at Barnes Jewish in St Louis ask why anyone would come there when we had one of the best neurosurgeons in the area right here in Quincy was crazy to hear.  He took his time with us, at least 45 minutes, where others only spent 5-15 minutes with us.  He did tests that none of the other doctors bothered to do, he explained why he was doing each thing, and then took time to explain things to us after he found new things were wrong.  What new things you ask?  The fact that my left eye socket was sinking back into my head, that I was losing feeling on the left side of my face, that my knees, legs, biceps and arms in general had an increase of spasticity. Spasticity is a condition in which there is an abnormal increase in muscle tone or stiffness of muscle, which might interfere with movement, speech, or be associated with discomfort or pain. Spasticity is usually caused by damage to nerve pathways within the brain or spinal cord that control muscle movement.

The next thing you might be wondering, is well when will this be happening? The answer is, SOON. June 20th to be exact......yes I’m scared, nervous, anxious and excited all at once. ALL AT ONCE. So yeah. Anyway, that Monday morning, in exactly 3 weeks, we’ll show up to the hospital, with whatever family and close friends decide to come, and check in for my 6-hour brain surgery.  It can of course be longer depending on what he finds once he is in my head, but hopefully it won’t be. He will also be doing a skin graft from my leg we believe, although it could be my behind (there’s more there to choose from after all, lol) so that he can make a dura patch for my brain where he is removing part of my skull.  He’s using my own flesh/skin because as I previously stated I also have EDS, which means my body would reject a dura patch made from any other material, which would result in yet another surgery. There are of course risks involved in brain surgery, but there are risks involved in every surgery, and we know that going in, so it’s easier to process it.

Some, but not all of the risks are:
Bleeding, infection, blood clots, stroke, reactions to anesthesia, and death (rare). Specific complications related to a Chiari decompression craniectomy and duraplasty may include:
• Risk of head and neck pain is variable.
• Cerebrospinal fluid (CSF) leakage is the escape of CSF that flows around the brain. This usually takes the form of a squishy pocket of fluid or drainage from the incision. If leakage is suspected, apply a pressure dressing over the incision and contact the surgeon immediately. If the leak continues, surgical repair may be necessary. New closure techniques and use of biologic glue greatly reduces the risk of CSF leak.
• There is a risk of pseudomeningocele, an abnormal collection of cerebrospinal fluid (CSF) under the tissues of the neck.
• Nerve or brain damage may cause permanent disability.

Like we said, there are risks, but there are equally scary risks if I didn’t go through with the decompression.

From what we understand, right after the surgery, I’ll be in the ICU from 1-3 days, and then in the hospital for a week.  From there I’ll come home, but unfortunately have a ton of limitations, a few of which are, no driving, which truth be told I’m barely doing now since I’ve gotten worse, no lifting anything heavier than 5lbs, no housework, no yardwork, no laundry, no drinking, no sitting for long periods, I have to be laying down as much as possible, no bending, no straining at all, no prolonged coughing, no pushing/pulling. A lot of which I’m already not allowed to do, but some of the new restrictions will be hard, especially staying out of my garden that long.

As crazy as it is going to sound, the thing that I think I am the most upset about, and apprehensive about is the fact that I am going to have the back of my head shaved. I love my long hair, and they’re basically going to take the one thing I’ve ALWAYS loved about myself from me.  Yes, I know it’s vain, but I love my hair, and I love it long.

In the meantime, though, I will be undergoing a lot of tests leading up to the surgery, lab work, EKG’s, another MRI, more spinal x-rays etc.  Not exactly looking forward to any of that, but I know that it is necessary as we prepare for the surgery.

Besides surgery preparations, we went to a great get together at Shawn’s dad and Teresa’s house on Saturday, and then on Sunday we had a WONDERFUL surprise 60th Birthday Party for my dad at our house.  We have also gotten a puppy, and her name is Lulu, she’s a 1-year-old Pug and she’s amazing.
We’re still organizing the first ever Quincy Chiari Awareness walk. It’s September 17th, 2016 here in Quincy, starting at Clatt Adams Park.  We are still looking for volunteers, corporate sponsors, and people to register for the walk as well.  I’d love to see us hit our target goal our first year out!  Below you will find links to do all of those things, so PLEASE participate in some way if at all possible.  And just to be clear, this walk is NOT a benefit for myself.  Conquer Chiari is a national charity devoted to researching Chiari, better treatments, and someday a cure.  This walk is held nationwide on the same day in various cities.  All proceeds raised will go to them.

That’s all for now folks, sorry this one was so incredibly long, but it is what it is, and as always, if you have any questions/comments, don’t hesitate to ask.

The walk Facebook page is;

The even page to join in on Facebook to help us keep count is; https:/www.facebookcom/events/167649767594/

Registration link;

The link for becoming a sponsor is;

If you have any other questions please don't hesitate to contact me, you can call or email me at any time. Thank you again!!


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