I have a problem.

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jhearne

Buckeye
Joined
Jul 14, 2007
Messages
1,365
Hey guys, this doesn't belong in the Semi-Auto section but keep it here, I talk to you guys the most in this section anyways.

For the longest time I have always had issues with headaches, mild to severe every couple of days at least to every day I'd have one. In High School I played trumpet and would experience a severe pain in my neck, about where it meets my skull and it would last for about 7-10 seconds and go away, though I was straining to play too high of notes for too long. I was lead trumpet and just went on and the problem went away when I went to college and moved to concert band and ultimately stopped playing trumpet and focused on Bass Guitar.

The pain stopped in 2004 when I graduated then, now about 2 years ago the pain has came back and flairs up when I cough or laugh. I can't go see funny movies because the pain is just too intense to be worthwile my time to pay and see it. Sucks because I love comedies. Well I've been going to my local Doc and he thought it was because of stress, at the time I saw him I was going through a divorce and it made some sense. I didn't remember my episodes from high school in band and never thought to make the connection. I went back to my Doc because I tend to get Sinus Infections during the seasonal changes to Fall and Spring. I also reminded him about my neck pains as I've still been getting them with minimal stress levels in my life lately. He had me scheduled for an MRI this Tuesday.

Wednesday (9/23) I got the results and today I got my copy of the pictures and Radiologist report. I have what's called a Chiari Malformation and a Syrinx. Both conditions are rare and the Chiari is congenital, meaning I've had it since birth. The CM went undiagnosed for 23 years and was the cause of my headaches and neck pains. Chiari is where part of your Cerebellum, more specifically the Cerebral Tonsils descend into and through your Foramen Magnum (the hole in your skull where your Spinal Cord meets your Brain Stem). The normal amount to be considered to have a Chiari is 5 millimeters. Mine extends past the FM by 2 CENTIMETERS! This causes the flow of CerebroSpinal Fluid (CSF) to be irregular and obstructed, normally if flows unblocked up and down your spine and into your skull, inside the Dura (a membrane that covers your Brain).

The Syrinx I have is the second problem and more serious issue. It's essentially a Cyst inside my Spinal Cord. Mine is between the C2 and C6 levels of my spine. (see MRI Pictures below) If left untreated the Cyst can grow and cause minor to severe permanent nerve damage and even paralysis, among other unpleasant symptoms I don't show signs of yet. The Syrinx is a more common term for Sryingomyelia. 90% of people with SM also have CM. The other 10% get SM from some sort of trauma to the spine or neck.

I am to go see my local Neurosurgeon to discuss whether or not I need the surgery and from what I've seen, read, and discussed with other Chiari patients, I'm probably going to NEED it. The surgery (this gets a little graphic) consists of mainly the removal of part of the skull around the Foramen Magnum to decompress the Cerebellum in an attempt to restore proper CSF Flow. In some cases the C1 and C2 vertebra are shaved to some degree and sometimes there is a patch grafted to the Dura (this part can lead to more complications as it can become infected or leak)

The GREAT news. This IS NOT life threatening. It's more an obstacle for 99% of people with CM/SM, it can become debilitating, I can become limited in what I can and can't do. I may not be able to fire a firearm again, though I did hear of one paralyzed CM patient (waist down) who does Trap Shooting on a regular basis....so I'm optimistic there. I'll be out of work for a while, up to 3 months just to recover from the surgery and even more in therapy to regain strength in my neck (they cut through the muscles to get to the spine). The main focus of the surgery IMO is to shrink or eliminate the Syrinx. 50% of the patients who undergo the Decompression Surgery see an elimination of the Cyst(s), 45% see it shrink dramatically and the remainder see it's growth and development halted. 80% of the patients surgeries are considered successful, while 20% go on to need repeat surgeries or give up on fixing it and let the disorder(s) run their course.

The BAD news. There's NO CURE. If I do have the surgery, there's a risk that it can get as bad or worse than what I'm experiencing now. If left alone I risk severe nerve damage or paralysis.

Thanks for reading guys, there's more light than darkness in this tunnel I'm in. I'll still be on the forum but I doubt you'll be seeing any How-To's in the future. I have zero qualms against anyone's wish to take on a How-To for the SR9 and post it here for others to see. I know everyone's looking forward to the Ghost How-To but I don't see myself being in a capacity to write up a how-to much less want to go shooting or even be able to purchase the upgrade. Brain Surgery ain't cheap, thankfully I'm almost ready to put my house on the market and I'll have a great deal of financial burden off my shoulders. I'll keep you guys up to date on my condition as it comes.

Here's the best pictures I was able to find of the MRI photos I got today.
The Chiari Malformation is in Yellow and the Syrinx is in Red. The hole for the Foramen Magnum is the Blue line....as to where I understand it to be.
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0007.jpg

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0109.jpg


Take care and God Bless,
Josh
 

welder

Buckeye
Joined
Sep 2, 2007
Messages
1,813
Thoughts and prayers Josh. I sincerely wish you the best possible outcome, as I'm sure we all here do. God bless you.
 

Cheesewhiz

Hunter
Joined
Feb 8, 2008
Messages
2,114
Josh, I wish and hope that it turns out well for you, I will say something tonight before I go to bed. You are a good guy and I always look forward to your posts.
 

tguil

Single-Sixer
Joined
Jul 17, 2006
Messages
134
Good morning, Josh.

I'm so sorry to read about your problem. I see that you are already taking good steps with your post on the ASPA website. Those folks should have some good suggestions for you. I am quite sure that you will pursue resolving this major medical problem with the same thoroughness that you use in resolving minor issues -- like the problems with the SR-9.

Today we have a wealth of information available to us though the internet. I have two friends who had very serious medical problems who found the "right" place to go through using the resources on the web. You are apparently a darn smart young man and I am sure that you would do the same.

Simply put. Find the best "docs" that you can. Go to them regardless of the distance and do what they suggest. Now-a-days most "docs" do not want to do surgery unless/until it is absolutely necessary.

This most certainly is a "life-changing" condition. Please continue to keep us informed as to how you are doing.

Take care.

Tom
 

graygun

Hunter
Joined
Sep 24, 2008
Messages
4,000
Sad news...I also didn' t realize you were so young. I pray the procedures are successful.

I believe God can heal although the how,when,why of it is cloudy to me. I believe Jesus healed and that He's available via the Holy Spirit today.

Doctors can do amazing work but your systems do the healing. Along those lines,there's an oral capsule available that's supposed to be able to increase production of your own stem cells. It's called Stem Enhance and its made from some type of kelp. I don't know if or how well it works.

Well,nuff said...hang tough!
 

jhearne

Buckeye
Joined
Jul 14, 2007
Messages
1,365
Thank you so much for the well wishes and the prayers guys, I asked on ASAP's forum about a neurosurgeon in Houston or Dallas and found 3 great NS's very quickly. All have years of experience one in particular more than the others but his experience with Chiari is unknown.

Dr. Robert Grossman, 52 years, and was one of the 2 NS on duty when JFK was shot. He is the uknown in Chiari treatment, I'd have to ask him personally about it. (Houston)

Dr. Stephen Fletcher, didn't find out how long he's been practicing, but it's over 20 years I'm sure, he looked like he was around 50, he specializes in Pediatric surgery though. Not sure if a Pediatric NS would take an adult case. (Houston)

Dr. Richard Jackson, don't know much about his history, though he specializes in upper spinal injuries and disorders involving microsurgery. He seems to have a good general experience with Chiari as well. (Dallas)

I'm sure I'll find a couple more candidates, but I won't stop looking until I find the right one. I'm still unsure that I'll actually need the surgery, but from what others have responded in regards to my MRI's on ASAP, I'm most likely going to need it. Mainly to correct the Syrinx.

Thanks again guys, I'll probably use this thread to update you all with.

Graygun, I'll be sure and ask about the Stem Enhance, and what they think of it in regards to post-op care....I really hope I am able to heal quickly without complication, average down-time for the surgery to recover is anywhere between 3 weeks to 3 months! Even after your able to get around, you're still no where near ready for most everyday tasks. A lot of patients have had to give up working and go on disability. I certainly hope that's not the case with me, I'd like to be able to return to work in some capacity, I do actually like what I do lol.

Hope to have some news from the local NS this week, will keep you all posted as I can.

Josh
 

wixedmords

Blackhawk
Joined
Aug 5, 2006
Messages
903
I wish you best of luck Josh.

Think positive. I am glad you found the cause of your issues.

Lets get this thing fixed.

Wixed
 

hawkeye

Bearcat
Joined
Mar 29, 2009
Messages
20
Josh,

I want to wish you well. I know you'll come out this OK because you're armed with knowledge.

Take care Josh.
 

jhearne

Buckeye
Joined
Jul 14, 2007
Messages
1,365
graygun":2cnfdzk8 said:
What kind of work are employed in?

I work at my Grandfather's Machine Shop with him and my father, I can machine some, CNC and manual, but I handle inventory, shipping (small and large freight/motor freight), a little bit of AutoCAD - 2D/3D, tool orders and managing the company website, basically everything that everyone else doesn't do around the office. The shipping has some heavy lifting (50-150 lbs) but I am a little underdeveloped in my upper body, this is a symptom of CM, but I can't say for sure if I wasn't trying hard enough in my school's athletic program, or I was just set back by my disorder.

Josh
 

sparks701

Bearcat
Joined
Mar 27, 2009
Messages
95
Hope everything works out for ya Josh, I really enjoy reading your input on the forum.
 

jhearne

Buckeye
Joined
Jul 14, 2007
Messages
1,365
Went in and talked to a Neurosurgeon today, went well, but didn't convince me that he's the one I need to have it done. He did say that I'll need the surgery, and that I will have a hard time finding a NS that disagrees.

He does about 3 or 4 of these a year max for atleast the past 10 years, some NS's that do more work see over 100 surgeries a year....and have done them for many many years now.

Will be looking into my out of town options now, thanks for the replies guys, will keep you all informed.

Josh
 

tguil

Single-Sixer
Joined
Jul 17, 2006
Messages
134
Sounds like you might want to check with Mayo Clinic. It's a long way from Texas but it seems to be "the" place for many special/difficult medical conditions.

Tom
 

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