Thursday, January 23, 2014
Tuesday, January 21, 2014
Just wanted to give everyone an update on what's going on. Had my appointment with the surgeon today and my brain MRI came back clean, no tumors. I was glad to hear that but we are going to have to surgery. I have what's called a Chiari Malformation but he still doesn't think that's the cause of the cysts or syrinx in my spinal cord but he wants to go a head and do the brain surgery on that anyways. The two cysts in my spine are very large and advanced and he's almost sure that a surgery on them would leave me with some paralysis. He's not sure if doing the surgery on the Chiari malformation (CM) will allow enough pressure to be released so that the cysts will shrink but he feels because of the overall risk it's worth the shot. The CM surgery has some risk too but not as much. My surgery is scheduled on February the 5th at 7:30 AM. He said afterwards he will give it a couple of months to see if they start I shrink in size and if they do then we may not need the spinal surgery for a while. Basically the CM surgery will be removing some of the bone from my skull and first vertebra to hopefully allow for some room for spinal fluid to flow and allow the body to possibly fix the problem itself. As it is now there is so much swelling and pressure there isn't enough room for the fluid to flow to allow the body to possibly heal itself. His fear is that since I've had this from birth that my body may be beyond the point of healing the problem on its own. He said it's really hard to tell because the spinal cord is so unpredictable.
I'm optimistic either way. I'm a pretty tough cookie. Unfortunately this will do nothing to relieve the pain I'm having which is worsening daily. I'm currently averaging 45-55mg of oxycodone daily and it's barely having any affect.
The recovery will be at least 6 weeks. I'll be in the hospital for 4-5 days. The biggest risk is infection in the brain since it's opening the skull and cutting into the protective brain membrane.
All in all I'm doing ok and trying to keep as busy as I can stand. Thank you all for the love and support you've given.
I'm optimistic either way. I'm a pretty tough cookie. Unfortunately this will do nothing to relieve the pain I'm having which is worsening daily. I'm currently averaging 45-55mg of oxycodone daily and it's barely having any affect.
The recovery will be at least 6 weeks. I'll be in the hospital for 4-5 days. The biggest risk is infection in the brain since it's opening the skull and cutting into the protective brain membrane.
All in all I'm doing ok and trying to keep as busy as I can stand. Thank you all for the love and support you've given.
Monday, January 20, 2014
I wanted to take a few moments and write about a couple things that I hope will open your eyes and heart and give you some awareness. One is about something that has become a very large part of my life and caused significant changes. The other is something that could alter or improve that.
A few weeks ago I was diagnosed with a rare spinal disease called Syringomyelia. I don't expect many, if any, of you to know what that is, most doctors don't even know about it. It's a rare debilitating disorder that attacks the core of the spinal cord with cysts that are incurable and barely treatable. My form is from a congenital birth defect and is fairly advanced. In three months time I have gone from being perfectly normal and healthy to walking with a cane, not being able to tie my shoes and experiencing high amounts of pain 24 hours a day. My spinal cord is swelling and crushing the nerves in my spine. It's painful, debilitating and can lead to crippling of the limbs and paralysis.
Not much is known about this disease. Very little research or awareness is being done and many times patients have to teach their doctor what it is and how best to treat it. This, as expected, has changed my life forever. It's caused me to stop and rethink my goals and plans in life and begin to set new ones, and although one could become very depressed with this news (and I certainly have had my down moments) it is teaching me more everyday to appreciate the simple things in life. To slow down and enjoy the present. To learn that life isn't what is thrown at us but what we make of what is being thrown at us.
Now this brings me to my second subject and something that sparked the idea for this article in the first place. It is the right of every human being to be able to choose and use the best treatment available to them. We, along with our families and physicians are of course the best at knowing what is the best treatment for bodies and the illnesses we might face. It is not a politician, body of elected officials or any other spurious group that claims any authority over us.
Cannabis, among many qualities, is one of the best treatments for my disease. It not only has proven to be a great pain killer with no side effects, as opposed to the many side effects of life long treatments with prescription narcotics, it has also shown in study to help promote new spinal tissue growth which over time could possibly begin to heal the damages done to my spinal cord by this disease.
Now I am not a new advocate for the legalization of cannabis, I have supported that for many years. I am not a recreational user and never have been but I also see that as a personal choice and not of some bureaucrat who has no authority to control your life. I am now though, faced with this in a personal way. To make the decision to use a treatment for pain that will cause damage to my body as I continue to use it and only offer moderate relief or to risk imprisonment if I choose to use a medicine that will offer a safer treatment for my condition.
A few weeks ago I was diagnosed with a rare spinal disease called Syringomyelia. I don't expect many, if any, of you to know what that is, most doctors don't even know about it. It's a rare debilitating disorder that attacks the core of the spinal cord with cysts that are incurable and barely treatable. My form is from a congenital birth defect and is fairly advanced. In three months time I have gone from being perfectly normal and healthy to walking with a cane, not being able to tie my shoes and experiencing high amounts of pain 24 hours a day. My spinal cord is swelling and crushing the nerves in my spine. It's painful, debilitating and can lead to crippling of the limbs and paralysis.
Not much is known about this disease. Very little research or awareness is being done and many times patients have to teach their doctor what it is and how best to treat it. This, as expected, has changed my life forever. It's caused me to stop and rethink my goals and plans in life and begin to set new ones, and although one could become very depressed with this news (and I certainly have had my down moments) it is teaching me more everyday to appreciate the simple things in life. To slow down and enjoy the present. To learn that life isn't what is thrown at us but what we make of what is being thrown at us.
Now this brings me to my second subject and something that sparked the idea for this article in the first place. It is the right of every human being to be able to choose and use the best treatment available to them. We, along with our families and physicians are of course the best at knowing what is the best treatment for bodies and the illnesses we might face. It is not a politician, body of elected officials or any other spurious group that claims any authority over us.
We should never allow that to happen but in fact, that is exactly what we have done.
Cannabis, among many qualities, is one of the best treatments for my disease. It not only has proven to be a great pain killer with no side effects, as opposed to the many side effects of life long treatments with prescription narcotics, it has also shown in study to help promote new spinal tissue growth which over time could possibly begin to heal the damages done to my spinal cord by this disease.Now I am not a new advocate for the legalization of cannabis, I have supported that for many years. I am not a recreational user and never have been but I also see that as a personal choice and not of some bureaucrat who has no authority to control your life. I am now though, faced with this in a personal way. To make the decision to use a treatment for pain that will cause damage to my body as I continue to use it and only offer moderate relief or to risk imprisonment if I choose to use a medicine that will offer a safer treatment for my condition.
Wednesday, January 15, 2014
Travis Maddox Medical Expense Fund
Well I don't know where to begin. First of all I am so thankful and greatful to our dear friend Danae for setting this up. True friends are really hard to find and she's about as true as they get. For those that know me personally know I'm not the type to ever ask for anything. I tend to be a little stubborn that way. I tell myself I'm not asking for me but for my family. I'm thirty five and have a wonderful wife and four kids and have worked hard my whole life. I enjoy working and have been told I'm a workaholic. Guess my story begins with my whole life having bad headaches and pains. Usually I just tuff it out through those times and deal with it. I had been to doctors in the past but usually they would say I have a strained muscle or I'm over worked. In Oct of 2013 it began to get much worse. The back pain became severe and shot down my arms and I had a lot of numbness and started to notice difficulty with dexterity in my hands. Again I went to the doctor only to be told I had simply pulled a muscle in my back and should be fine in a few weeks. It never got better. It became very severe at times bringing me to tears. On January 2nd I was running the closing shift at my job and sneezed very hard and began screaming out in pain and ended up on the floor. My wife took me to the ER where they did a MRI and discovered that I had Syringomyelia. Of course I had no clue what that was but I knew from how the doctor was talking to me that it must be serious. Within a few days I was seeing a neurosurgeon and it seemed the news only became worse. I did have a Chiari Malformation of the brain but unlike most cases this was not the cause of my SM (sryingomyelia). He said it was a birth defect and I've had the cysts so long in my spine that the vertebras are growing around the cysts. The worst cysts was in my cervical spine area and is so large it is beginning to rupture. This he said is why my pain is so rapidly worsening and why I am daily losing the strength and the use of my body. I have my first surgery coming up soon and most likely several more after that. The pain I am going through cannot be fixed. It is something I will have to learn to live with and the loss of strength as well. Because my condition is so advanced I stand a very good chance of having some level of paralysis the doctor tells me. I cannot work anymore and most likely never will. I am on a 5lbs weight restriction until further notice. My long term outlook isn't great. I am daily accepting this. I've already lost the ability to do so much. It's difficult not being able to pick up my children anymore or ask them for help for simple things like tying my own shoes or picking something up for me. They are troopers my kids, doing their best to understand this rapid sudden change and helping in every way they can. I know my life will never be the same and the goals I had for it are now changing. But I have not lost hope and I'm horrible at giving up. I am looking at this as a new adventure with new and exciting challenges. The one thing that does excite me is that I will be able to spend a lot more time with my family.
The reason this fund was started was to try and help us get through this. Yes we have insurance for a while still and things like disability will kick in eventually but even with all that there are still expenses that can be difficult to cover. We live like most people pretty much from paycheck to paycheck. I'm already in need of home medical equipment. I can't stand long enough to really shower and I can't get out of a bath tub. I now use a cane to walk and soon will be in a wheel chair. I don't expect people to pay for my problems but those that are able to do a little it would be nice and lessen the stress a little for my family and it doesn't just have to be money. Your thoughts and love and friendship mean so much that no price can be put on that. Thank you all so much. I never dreamed I would be going through this but having a wonderful wife, family and friends is making all so much easier.
I love you all so much.
Travis
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