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!

Here are my wonderful kids at an amusement park(I'm still working on getting the pics up), and yes, one of them is the one who has birth defects! We were learning something new about him on a regular basis for the first year he was with us. We learned about his scoliosis the day he was born, which was also the day we met "Dr. Grim." When he was just 2 days old, he had a ecocardiogram done because they heard a heart murmur. The doctor who read the film said his aorta was constricting and looked like it was going to completely close itself off. Life Flight arrived shortly to escort him to Primary Children's Hospital for further evaluation. It turned out that his aorta had merely redirected itself down the right side of his body, his left side is the location of his chest wall deformity. So what was the murmur? His PDA valve on his heart never closed on its own. He eventually received an operation to close the PDA, so it is no longer an issue for him.
We found out that he only has one kidney, and we knew that he had an abdominal hernia when he was born. The hernia was repaired when he was 10 days old. Those first 10 days turned out to be very interesting. How? Well, every time we changed his diaper, we had to change his clothes because they were soaking wet. It appeared that he was peeing all over his clothes, though we weren't sure how. You wouldn't believe how many people gave us advice on what we needed to do to keep him from soaking his clothes. He was our 2nd boy, so you would think we would know how to handle it, but we still kept hearing, "You've got to make sure the 'plumbing' is pointed in the right direction." No matter how often we told people that we had tried that, we kept hearing it. The other interesting thing during this time was his umbilical cord wasn't drying up like it should. Well the day that he was scheduled for his hernia repair they did an ultrasound. The amazing thing was, they could not see anything at first. Then they caught a quick glimpse of what was causing him to soak his clothes, and it dissapeared from view again. I know the medical term they used to describe it, but there is no way I can spell it. In short, his bladder was connected to his belly button, which obviously caused his wet clothes and his cord to not dry up and fall off. The surgeon repaired this at the same time as the hernia. I have to admit that I was beginning to question my own ability to put a diaper on a baby because it just didn't make any sense!

Wow this is only the beginning! I have so much more on that son, and on my wife! Life has been anything but dull for us, I hope it is interesting to you as well! Keep checking back for updates!

A little bit of our history. . .

I don't even know where to begin! I should have started this 6 1/2 years ago when I met my wife! I love my family! They are my life, I would be lost and lonely without them.

Just a little background: My wife has been suffering from severe migraine headaches for about 19 years. She has tried everything, but she still has headaches. These headaches often keep her from being able to do the things she would like to do.
I also have a son that has congenital scoliosis and chest wall deformities. We were rather surprised when he was born because the doctor had not noticed anything on the ultrasounds. We were given a very grim picture by the attending pediatrician, he told us that he might never crawl or walk and that he may also have mental problems. He is now 4 and he runs and plays with his brothers and friends! We have been so blessed to live near one of the best pediatric hospitals in the country, and have access to a form of treatment that will give him a better and longer life!

I hope to continue with more info and updates, stay tuned...

Here it is!
Well, I've joined the masses. I will now be able to blog to my hearts content! I hope that my blog, as I get it going, is helpful to others. My family and I have experienced a lot, and I hope that our experiences will benefit others!