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!

My wife and her migraines. . .

Well, now for something present tense. I'll give more history and background as it comes to me. My wife has had an on-going battle with migraines. I really can't remember when the last day was that she was headache free. To make a long story short, she has seen several neurologists, has a list of previously tried medications 2 pages long, and no pain medicine seems to completely get rid of her pain. Even a trip to the E.R. and a shot of demerol, won't give her complete relief. After 19 years of trying to find any meds that will prevent them, or any meds to help the pain we have ended up at the Universitiy Pain Clinic. They are surprised at her lack of responsiveness to meds, and hope they can help. We are however fighting our insurance to pay for Botox, which the doctor believes could help because she also has a lot of tension in her neck. We have also run into a problem with the insurance rejecting payment for medicine that the doctor wants to prescribe, or limitting the amount of medication they will pay for in a month.
We are going to the clinic tomorrow for a stellate ganglion block. It is a type of nerve block that. We've tried other types of blocks in the past that were not effective, but this one is a little different. After looking online and reading up on the block, it actually sounds scary. They will use light sedation and local anesthetic, but they give the injection in the front of the neck next to the vocal chords. She won't be able to swallow of cough while they give the injection. From the internet reports given by other pain clinics, they will use dye and some kind of x-ray to get the proper placement of the injection. I am very nervous even though I know she is in good hands and I will be at her side. She is also very nervous about the procedure. If it gives her relief from the headaches, it will all be worth it. The headaches have literally changed her life and her lifestyle. It really makes me sad that she cannot enjoy life more because of the terrible pain that she is in on a consistent basis. Enough for today, but I will update you to let you know how the nerve block went!