Mike Sutton

I mentioned way back that I had Guillain Barre Syndrome when I was 15 years old.  I was in a wheelchair for 6 months.  Now, 5 years later I am still trying to regain the strength I once had.  I got to thinking about my experience recently when I read an article about a basketball coach in Tennessee.  He too is recovering from Guillain Barre Syndrome.  Mike Sutton is very encouraging to many GBS patients because his experience was so severe he was on a ventilator for three months and he is now back on the court coaching.  It goes to show that struggles can be overcome.

A Date Has Been Set

I just got a call from the Mayo Clinic yesterday.  A date has been set for my surgery.  I have my pre-op appointment on March 16th and my surgery on March 17th.  From what I understand, they will be smoothing out the jaw joint on my right side and inserting an implant (titanium maybe?) to take the place of cartalige that should be there but isn't.  I know that I'm probably not being very clear in my description.  I will find out more on February 2nd.  I go back to the Mayo Clinic to dicuss things more with the doctors there. 


In the mean time I am hard at work studying for school.  I really do not want to get behind.  I found out last semester that getting homework done actually makes life less stressful... Imagine that... :) 


My pain is high again today but now I have a surgery date.  I am so hoping that this is the answer!!!


Have an amazing Friday!

Osteoarthritis

I went to the Mayo Clinic about a week ago and I got some news to share.  I spoke with the surgeon and he confirmed that I have a pretty bad case of osteoarthritis in both of my jaw joints.  The arthritis is not common in young people so it was determined that one or all of the three jaw surgeries I've had was the cause.  Dr. Keller wants to do surgery in 6-8 weeks but I have school then so we are planning for it to be during spring break in March.  I am both excitied and nervous.  I'm excited because this may get rid of my pain!  I am nervous because there is a chance that my pain could stay the same or get worse.  I am just praying for it to work!  

I've Known It All Along

I have aways known that my disability and health issues take alot of my parent's attention away from my brothers and sisters and I have tried to make it up to them. One of my sisters feeling this came out a few nights ago. Its made me think about how I impact their lives. She is frustrated that I take so much time needing to go to various doctors all the time. I feel so sad that I can't make everything perfect. I wish there was something that I could do to make things right, make things even between us. All I can say is that life isn't fair and I'm sorry for that. Hopefully things will get better soon. Going to doctors, needing surgeries, pain issues... its all stuff that I wish I could change but its out of my control. That is so frustrating for me. I am thankful that my siblings have been understanding but I understand the frustrations they have. I don't know what I can do at this point.

Recent Happenings

Well it has been quite a while since I have been online. A lot has happened so this may turn out to be a long post. Don't worry... I will include pictures. :)

Well one of the biggest things that occurred lately was that one of my sisters, Charlet, moved out. It was quite sudden and I don't really know the whole story since I was at school but she is now living with my older brother. I have to say that overall the family has been much happier. I know it is a terrible thing to say but Charlet moving out is probably for the best for both Charlet and the family. I wish Charlet the best in whatever she does!

I have gone to the Mayo Clinic in Rochester a few times since my last post. I saw Dr. Reid on December 7th. He said that he believes he has found what is causing all of my jaw pain. He believes I have nerve damage from surgery and arthritis on both sides of my jaw. The treatment for this is not all that simple though. Apparently arthritis in the jaw is more complex than other joints. I have already tried everything that he recommended so the next step would be surgery. They would shave my jaw joint to make it smooth then add an implant. They said that they would have to do both sides separately so that means potentially two surgeries. Also, the surgery could possibly make it worse. It is sounding like the nerve damage is what it is so I have to deal with that. I have to say that even though this news isn't the best news I am SO glad to finally have an answer! I go back in a few days to talk to a surgen about the surgery to figure out if I will be having it or not.

My family and I went on a trip to Duluth to see the Bentleyville Tour of Lights. It was pretty awesome! The drive was about two hours but it was so fun! We got to walk through the lights and had hot chocolate and cookies, popcorn, and roasted marshmallows and this was all for free!

The Kids

Our Family

So about a week ago, my parents held a family fun night. They told us nothing about where we were going or what we were doing. It was a surprise. Well, turns out that mom and dad rented a limo to look at Christmas lights! We had a blast!
Hmm... Not as long as I thought... Maybe that because finals are over so my creative juices are just not there now till next semester.... Go winter break!

Results

Well I went to the Mayo Clinic today. It turned out to be an all day thing. I got there at 7:15am and left about 2:30pm. I saw Dr. Kevin Reid. He was pretty nice. He listened to everything I said, he came up with a game plan, and he told some jokes. He wanted to get some tests done before we try much. He said he wanted to know what exactly needs to be done.

I got an EMG done on my face. The doctor thinks I may have some nerve damage among other things and he wants to see how much there may be. That was NOT the highlight of my visit. I went in and they sent some electric shocks into my face to see response to stimulis. That seemed to go okay. After that a different guy stuck a needle into my face in a muscle. That was painful. Really, really painful. After I left there I went back to Dr. Reid's office and asked if he could give me anything for the pain that the EMG caused. He sat down again with me and took time to talk again and gave me a perscription for a muscle relaxant and a pain reliever. Let me say that so far I have been impressed with Dr. Reid.

So now I need to go back to the Mayo Clinic on November 13th for more tests. I have to meet with the physical therapist, get an MRI, try acupuncture, and get a Nero CT. After that I meet with the surgical team and Dr. Reid on December 7th.

In the meantime I will be taking a new drug named Nortriptyline for nero pian. Hopefully it helps! I am definately optamistic right now. I feel like I have a plan, that something is being done other than people saying, "I don't know".

About 8 Hours

There is less than a day (about 8 hours) before I will be at the Mayo Clinic. I optimistic but trying to not let my hopes up too much. I really want all of my pain issues to dissolve tomorrow with the doctors finding a solution but I know that there is a possibility that they won't have an answer. I know that these types of things are really out of my control and that kinda drives me crazy. I know what I want but have no way of getting there yet! I wish I could sleep right now but it takes me forever to fall asleep because of pain.

I started a Pop Tab War in my residence hall to raise money for the Ronald McDonald House Charities. So far the West side has gotten about 2.5lbs of pop tabs. The East side has about 5 ounces... They are a bit behind.... Tsk tsk tsk! There are 2 more weeks of collecting pop tabs before they are officially weighed.

School seems to be going well. I haven't failed anything (knock on wood) and I am enjoying most of my classes. We had our midterms recently and I got them back. I passed both of them. Whew! I also decided to add an additional lesson on my own. I decided to try to learn Spanish. Not sure how that will work out with the accent but I'm going to try.

One last thing, I went to my bowling class today. I got a 300, perfect score! But the only thing is that our lane was working weird and both of us on this lane got perfect scores everytime! Everytime I get a goodscore the lanes always seem to be broken in some way! :)

Buenos Noches!