Frustration...

I'm going to vent for a minute... I am frustrated about a lot lately, my job, my blog not looking the way I want it too, my fantasy football team, and the list goes on. My biggest frustration at the moment has to do with my wife and all she has been through the last 8 months.
I really don't know where to start, but most people who will read this know some of the background already. She had a neuro-stimulator placed that was supposed to help her headaches. They did 2 trials to see if it would work before the permanent implant. Unfortunately something went wrong in both of the trials, but one of them yielded results that made us believe that the permanent device would help. The problem is that the doctor who did the trial is not the doctor that did the permanent. To add to the problem the doctor over-seeing the permanent implant has a reputation of being good, and that rep has gone straight to his head. This kept the doctor who did the trial from being able to give any input as to what worked in the trial. She has had the permanent implant surgery done twice now, and the leads are still not in the right place and the device is still not helping her. The thing I really have a problem with is that my wife is awake for the first part of the surgery to ensure that the leads are put in the right place, and during that time she could hear the impatient comments of the arrogant doctor. It is very discouraging that someone who has gone into the medical profession to help people isn't willing to take the extra 5 minutes to make sure they are helping.
Yesterday Nikki began to have excruciating pain coming from one of the areas of surgery, for no known reason. Now getting doctors and clinics to work together again just to get an x-ray on a Sunday seems impossible. We're the last people who want anyone to have to work on a Sunday, but when Nikki is so miserable I just want to do what I can to get her better.
It really breaks my heart that she has to go through so much, and there is nothing I can do to help! I can help with dinner, housework, and the kids, but I can't fix what's wrong with her, and I can't even make her feel better. I really just wish that there was more I could to help her to feel better. I still hope that we can find a way to get this device to work. It will probably require another trial, and a trip to Denver to have one of the best perform the permanent implant, but in all honesty, anything would be worth getting Nikki the relief she deserves.

What to do...

Wow, time flies!! I can't believe it has been so long since I posted anything. Nikki got a blog going and I wanted to make mine look fancy, but I haven't had any success. I thought about starting to blog again, but I'm not sure whether I should keep this blog, or just blog on our family blog. I don't want to just let this die, and it would be cool to have my own background(if I can get it to work), and my own songs etc... I am afraid that I can't keep this thing interesting on my own. I know that if I blog on the family blog that between Nikki and I it will be updated often enough to keep it interesting. I just don't want 2 years to blow by me again!!!

In case you were wondering, the Botox was short lived and really didn't give any long term benefit, in fact, shortly after I wrote that it was ineffective, even after more injections. So much has happened in the last 2 years I don't know where to start... Nikki has tried a lot of things, all of which, not much help. Skyler continues to have his surgeries every 6 months and not complaining for the 5 1/2 months in-between. Skyler and Nikki are both so tough and really an inspiration any time I hear myself complain. I realize that I don't have much to complain about!

Another Migraine update

Well, we're 1 and 1/2 months out from the Botox injections. We still don't have to go to the Pain Clinic 2 times every week! I think that she has seen results from the injections overall. She still has a daily headache, but most of the time they are not as intense. She has been able to spend more time out of bed and do more. Sometimes she does too much and then ends up paying for it later. This has been wonderful compared to what she's been dealing with, and I hope that she can at least maintain this level of relief, if not get even better. With physical therapy, pain clinic, psychiatrist, and neurologist visits, she keeps a busy schedule. We are also goiong to counselling to deal with all of it. Our oldest son also sees a counsellor for his mood disorder and sees a psychiatrist for his ADHD.

When I think of all the trips we make to the doctor and counsellors, I am very thankful that we have insurance. I just wish it covered all of the expenses. We still have our co-pays plus 10 - 20% of the bill, and persriptions to pay for. It adds up fast, and can get very discouraging. Don't get me wrong, I am happy to make payments for my families health and happiness. It's just a lot of money that we don't have. I plan to update the blog again soon, I am going to put a school paper I wrote in English 1010 that gives my opinion on miracles still happening today, I just have to get it from my home computer. Stay tuned...

Botox update

Well, I think the Botox helped a little. It really seemed to help with the intensity of Nikki's headaches, but she still had daily headaches. She had a lot of neck pain that I think helped to cause her headaches. After about a week we noticed that the Botox that was injected above her eyes had seeped down and is now causing her eyelids to droop a bit. She looks really tired all the time now because of it. She has said that it is a struggle for her to keep them open.
One thing that was funny about this whole Botox situation was when we went to the physical therapist last Friday. She asked Nikki to raise her eyebrows, and I didn't see them move. I was sitting next to her so I didn't have a good view, but they did move a little. Then the PT asked her to scrunch up her nose and eyebrows, then turned and asked me if Nikki was able to do it before Botox, because they weren't moving at all. The Botox apparantly has worked as far as paralyzing the muscles, but I wish it was helping her pain more.

Brief migraine update...

Well, our insurance company finally approved Botox for my wife, and she got the injections yesterday. The doctor injected the Botox in to several trigger points and nerves, hoping to relieve the stress and tension, and hopefully give her some relief from her chronic headache pain. He told us that it would take 1 to 2 days for the medicine to take full effect, so we are waiting to see. She has had a very sore neck, which is where the majority of the injections were, and she has still had some headache pain yesterday and today, but I am hopeful that she will see some benefit from this.
She is desperate for something to work because she feels like she is missing out on so much of our 3 boys' lives. She has, since school started, been asking the boys to tell her 3 positive things about their day at school and she logs them in a notebook. After they tell her 3 positive things they can also tell her anything that upset them, or that they didn't like. I enjoy seeing and hearing her make such an effort to be an active part of their lives. Their grandma bought them the new Lego Star Wars game, and it has been a great opportunity for all of us to do something together that we enjoy. It has been fun to work together as a family to complete the levels and find all of the extra items.

More Migraines

We went to the Pain Clinic again today and saw a physical therapist. She taught Nikki, my wife, some stretches to relax and loosen the muscles in her neck. It was amazing to me that the physical therapist knew which muscles would directly affect the headache based on where the pain in her head was. I can also see how these things that she is learning could help. The therapist explained that the part of the muscle that is spasming is actually just a few fibers in the muscle, she referred them to the trigger points. She also explained that stretching the muscles was important, and that it needed to be a gentle stretch. The reflex of the muscle is to relax when it is gently stretched. If it is stretched to much it can aggravate it even more. Which is difficult to find the middle ground, especially when those muscles are directly affecting the headache.
We got what I thought was encouraging news from her doctor at the clinic. We have battling with insurance to get Botox approved to help with the spasticity of her neck muscles, and her nerves that affect her headache pain. The insurance company told the doctors office that they should have a decision by this afternoon, but we never heard anything. I'm guessing that we will hear on Monday. The doctor said that once we do the Botox we shouldn't have to come twice a week anymore! We would only have to come in occasionally for nerve blocks using local anesthesia to supplement the Botox, sine they can only give the Botox every 3 months.
I have to say that I really like Nikki's Doctor at the pain clinic! He always has so much care and concern for her. It seems like it can be tough to find a doctor that genuinely cares and can express it. But I feel really good about this doctor. I know that Nikki is in good hands, and that he truly has her best interest at heart. Overall, everyone at the pain clinic is very kind, compassionate, and understanding.
I intend to get some posts up about my other boys too, but this is the pressing issue for us at the moment.

Migraine follow-up

Well, now that school has started again this is going to be very difficult for me to keep up with. The stellate ganglion block my wife got took her headache from a 9.5 to a 5 on a pain scale from 1 - 10. The only problem was that she had the pain of 9.5 back within a couple hours. She did seem to have a couple of decent days after that. They have since tried putting local anesthetic in the trigger points in her neck and around her eyes. This has seemed to help, but the medicine around her eyes caused them to swell a lot. Her eyes were hurting, which I think contributed to a headache. They have also tried a sphenal palatine ganglion block, where they try to block the nerve below your eye and just to the side of the nose. They go in through the nose to get to the nerve. It didn't seem to help at all. The clinic is now having us come down twice a week to see if they can help her. She will be meeting with a physical therapist on Friday, and we are hoping the insurance will finally approve Botox. She has met all of their criteria, and we gathered all of the info proving it. The clinic was going to submit the appeal in hopes that we would have an answer by Friday! I could say so much more about this but I have to leave for class. I'm going to add a link in my favorite links list that gives information on drugs and their side effects. I think it is very good information for anyone taking or frequently changing a lot of medications!