Today Is The Day

I had an email from one of my followers asking about how I am doing with my Chiari Malformation and she suggested I do a post about where I am at. So here it is. For the record if any of you who follow me ever have any questions in the future I am always happy to answer any questions you may have.

Today is the Day

1. I go to my Chiari Specialist in Chesterfield, Missouri to get 30 injections, with a tiny needle, of Botox and pray to God I have no reaction from it and it is as painless as they say it is, for my pain and numbness. The injections will start at my eyes and go throughout my skull and in the back of my neck as well. It is a 40 minute process once I am in the room. 

2. I get to see if this will work and I get to stop switching meds every two weeks because my body gets used to the medicine.

3. I get to hopefully get to have less numbness in my left arm and hand and feel my face fully again. 

4. I get to hopefully have no pain. I would love for this to work and be able to go a week and more without any pain in my head and neck. 

5. I get to try something new in hopes of no side effects and pray it works. You see if it does not work Vince and I have to decide do we do more medicine or decompression surgery. Medicine sounds so easy but when you have side effects from it and it works for a few days up to a couple of weeks and the pain comes back it sucks! I never get rid of the pain in the back of my head but I can tolerate it. Its the headaches/migraines that when they come back suck. Because if we do not switch my medicine right away the pain gets much worse. In summary it has been an emotional and bumpy road so far. 

I got these images off of yahoo to show you some examples of an idea of what I have. Here is an average non Chiari person on the left and a Chiari person on the right. You see I also have severe sinus problems which helps me none when it comes to this. It is very bad to have any swelling or pressure in the head that could push the brain downward. If the brain does swell or have pressure it presses on nerves which causes double vision, numbness in places and pain as I am having with my one arm, legs on occasion, face and back of the skull pain. I take allergy meds daily but we rotate me on those also. They help in the sense it keeps me from sneezing, coughing, etc. I am still experiencing pressure in my head and neck and double vision. 

I will not even talk about my list of restrictions I am on. Lol. No lifting over 10 lbs as much as possible, definitely no hitting my head, no running, etc. Basically anything that will jiggle the brain.  I did hit my head on a cast iron pipe in our basement a couple of weeks ago and that was an instant throw-up dizzy as hell moment. It sucked! Not to mention pain all day that no medicine would help with the all over my head and a stabbing sensation behind my left eye. You get the drift. 

Anytime I hit my head its a call to the specialist and I have to really watch my symptoms closely for a few days. Make sure I am not having continuous severe pain, blood in my ears or nose, dizziness, etc. You see if I get hit to hard it can kill me, give me minor issues or paralyze part or all of me which is why I now wear a medical alert bracelet. 

On to the next photo. 

Here is another example of a Normal Brain and a Chiari Brain. Mine is at a 12 mm. 

If the brain also goes down to far it can block spinal fluid which can cause another book of issues. 

Needless to say I am watched very closely and my doctor is like a part of my family. Well not really that close but you get my drift. 

I go to Dr. Zaheer Ahmed in Chesterfield, Missouri and Vince and I like him alot. He is a very good doctor we think. 

One thing I have tried that I have noticed has helped is adjusted my diet and I have even lost weight with it. Double score. Lol! Basically I have cut back on the sugar I eat, fast food little to close to none, more water, less salt, etc. I eat healthier, more fruits, veggies, granola bars, etc. That has helped with the severity of my pain but the chronic pain is still there. But hey every little bit helps right. I have a good friend from town that has helped me  and is still helping me with trying this and that to see if it helps any as far as the food goes. 

I want to avoid surgery as much as possible. Which brings me to my next photo. 

Here is what the end result would be if we cannot find anything to deal with my symptoms. The reason I want to and most with this want to avoid surgery is because it is a major brain surgery. I could come out fine or I could come out paralyzed in some area(s) of my body or all over. It is a very serious surgery. 

Above is the photo of what they do with breaking the bone to allow more room for the brain to expand and then they put a patch in. You see there is a ton of nerves when they open you up back there that they are dealing with and having the surgery is no guarantee of getting rid of the issues I deal with day to day.  Yes I could come out of surgery and feel great but most of what I read people still come out of surgery and deal with pain day to day or other symptoms as they dealt with before surgery.  You see it is a huge risk. I have young kids at home and Vince and I are not ready to jump on the surgery wagon just yet. Plus recovery is anywhere from three to six months. 

So those that read this please do me a favor and say a little prayer that when I get these injections today that they work and continue to work and I can get them every six months and be as close to symptom free as possible. I would greatly appreciate it.