I have been wearing the glasses for about 1 1/2 weeks and am encouraged with how I am doing! My headache is still there, but it has gone down a few degrees and that is wonderful! It is making the headache so much more more tolerable! The bad thing with the timing, though, is that the Botox shots were to begin helping the middle of this past week as well. That means that we won't know definitively that it is one treatment or the other that is helping or both at this point. I have a follow up with the neurologist the beginning of March, so we will see where we go from there. I am scheduled for the next set of Botox injections the beginning of April.
The thing that has not really improved is the ringing in my ears. Irritating, yes, but I can deal with that if many of the other symptoms improve or (dare I say) disappear!
Interestingly, I brought Tanner up for the eye testing as well since he regularly has headaches and has some of the other symptoms they have found typical with this eye problem. He definitely had it. The doctor said that he was "off the charts" and will need to wear glasses as well. The negative for him to start with is that he will need to wear his contacts for his regular correction and also wear the glasses for this focusing issue. They are working on designing glasses that will correct for both and are also in the process of developing contacts for this problem as well. So him wearing both will probably be temporary.
Riley said to me the other day that "I don't look as bad as he thought I would with glasses." I'm not sure if that is a compliment or slam but I had to laugh regardless. Funny kid!
Saturday, January 19, 2013
Tuesday, January 8, 2013
Tuesday
I have continued to feel quite overwhelmed with life. I just can't keep up!
Last week Wednesday I met with the optometrist that is partnering with my new neurologist, an eye surgeon and someone else. It was quite interesting because they are studying how the eye focuses. If the focusing isn't working quite right, it can irritate the optic nerve, which then can cause irritation to another nerve which can cause headaches and neck pain. This might be an underlying problem to the others that I have had. I failed the test pretty badly, so they are pretty confident that they can help me with the current headache, at least to a certain extent. The treatment is pretty simple and painless--glasses! They have lenses that are made in Norway.
So next week Wednesday or so I will start wearing glasses. They told me to wear them from the moment I wake up to the moment I go to bed and that I should see improvement after 4 days. Another experiment so we will see how that goes!
I really apologize that I haven't been communicating with anyone! I am so overwhelmed and home and work and so my communication with others has been almost completely non-existent. I am attempting to shorten my office days a little bit in an effort to get on top of things physically but that isn't working so well yet, either. One day at a time. I have been so blessed, so when I get frustrated with all of this I really have been trying to focus on how blessed that I am and we are as a family to have me at least partially back!
Last week Wednesday I met with the optometrist that is partnering with my new neurologist, an eye surgeon and someone else. It was quite interesting because they are studying how the eye focuses. If the focusing isn't working quite right, it can irritate the optic nerve, which then can cause irritation to another nerve which can cause headaches and neck pain. This might be an underlying problem to the others that I have had. I failed the test pretty badly, so they are pretty confident that they can help me with the current headache, at least to a certain extent. The treatment is pretty simple and painless--glasses! They have lenses that are made in Norway.
So next week Wednesday or so I will start wearing glasses. They told me to wear them from the moment I wake up to the moment I go to bed and that I should see improvement after 4 days. Another experiment so we will see how that goes!
I really apologize that I haven't been communicating with anyone! I am so overwhelmed and home and work and so my communication with others has been almost completely non-existent. I am attempting to shorten my office days a little bit in an effort to get on top of things physically but that isn't working so well yet, either. One day at a time. I have been so blessed, so when I get frustrated with all of this I really have been trying to focus on how blessed that I am and we are as a family to have me at least partially back!
Tuesday, January 1, 2013
Happy New Years
Yes, it is past time for me to go to bed, and that is the next step I will take! I can't believe that another year has passed!
Kyle gave me a shot Sunday night right when he came home from church and then I went to bed. I woke up feeling much better which we were all pretty thankful for! It put some fear in all of us, but particularly the younger two kids. They, of course, assume that the next step is the hospital so it was good for them to see me okay the next morning. But then I should say it was a pretty good for all of us!
I went to the neurologist on Monday and had the new treatment done. I am not supposed to feel any effects for about three weeks, and the next treatment will be the beginning of April. The doctor said that often the second treatment is more effective than the first. Tomorrow I have to head up there again for an eye test that is part of a new study. Hopefully I will know more about that after the test is done. So enough for now!
Kyle gave me a shot Sunday night right when he came home from church and then I went to bed. I woke up feeling much better which we were all pretty thankful for! It put some fear in all of us, but particularly the younger two kids. They, of course, assume that the next step is the hospital so it was good for them to see me okay the next morning. But then I should say it was a pretty good for all of us!
I went to the neurologist on Monday and had the new treatment done. I am not supposed to feel any effects for about three weeks, and the next treatment will be the beginning of April. The doctor said that often the second treatment is more effective than the first. Tomorrow I have to head up there again for an eye test that is part of a new study. Hopefully I will know more about that after the test is done. So enough for now!
Sunday, December 30, 2012
Sunday
Oops! I spoke to soon. I know that I have been pushing the last few weeks, but overall it has worked with minor consequences sometimes. But it hugely caught me today. I woke up early to a pretty strong headache. A nap this afternoon didn't take care of it and I tried a medication I had used in the early days of headaches with no results. What a vivid reminder of some not so good days. It isn't nearly as bad as I have had over the years, particularly for a while before the chiari surgery and then later for a while before the shunt. However, it is an unpleasant reminder that I had better start being a little more careful in how far I try to push myself.
Thursday, December 27, 2012
Thursday
Well, I see that I have neglected my blog for a while! This season has been so busy that I really couldn't keep up with the basics. But now it seems that things are slowing down and we can all catch our breath. What an incredible blessing, though, to be home through this season and participate in so many of the Christmas things that I missed last year. It seems like I spent most of December last year in Baltimore. It is a nice place and there are great people there, but it sure is nice to be home.
So I went to the neurologist locally last week. They had an opening and I asked to be on their call list. It went very well. As the she began asking my medical history and I briefly explained a small portion of it she interrupted me with a look and the statement, "you know I am only a small town neurologist." Thankfully, after I explained that I am simply looking for a local neurologist that would help with certain things she seemed to be very willing to work with me. So now we are waiting for authorizations for certain treatments and really hoping that I might be able to get it in yet before the end of the year. That probably won't happen, but it would be nice for insurance deductible reasons. We'll see.
It seems that I have gotten slightly stronger over the last little while. I still really need rest in the afternoon, but I have not been as miserable the day after overdoing it the last few times. Big improvement!
I have so much to be thankful for! 2012 has been a challenging year and we pray that 2013 may be a little less eventful! :)
So I went to the neurologist locally last week. They had an opening and I asked to be on their call list. It went very well. As the she began asking my medical history and I briefly explained a small portion of it she interrupted me with a look and the statement, "you know I am only a small town neurologist." Thankfully, after I explained that I am simply looking for a local neurologist that would help with certain things she seemed to be very willing to work with me. So now we are waiting for authorizations for certain treatments and really hoping that I might be able to get it in yet before the end of the year. That probably won't happen, but it would be nice for insurance deductible reasons. We'll see.
It seems that I have gotten slightly stronger over the last little while. I still really need rest in the afternoon, but I have not been as miserable the day after overdoing it the last few times. Big improvement!
I have so much to be thankful for! 2012 has been a challenging year and we pray that 2013 may be a little less eventful! :)
Thursday, December 6, 2012
Thursday
I am a little slow posting again. Although Tuesday I came home feeling decent considering the travel and big day, it hit me like a ton of bricks yesterday! So I really only got the basics done yesterday. Today is better although it is slowing me down quite a bit again later this afternoon and this evening. Hopefully tomorrow will be better--it just seems to take a few days to recover sometimes from a busier day.
The news from the gynecologic oncologist was quite positive. The "mass" is still there. However, he has renamed it from a concerning abnormal cyst to the hydrosalpinx. I had misunderstood, evidently, that both were there. His theory is that the hydrosalpinx was caused by the abdominal infection I had a few years ago. So chances are that it has been there for a while and we just didn't know it. Since it has not changed in size since they started monitoring it in March, he feels that it is stable. As I've said before, under normal circumstances he would have removed it right away when it was found but because of my abdominal surgical history the risk is higher having surgery than not. So I will need to have ultrasounds every 6 months indefinitely to be sure it doesn't start changing. I asked if we could go once a year, but he didn't find that acceptable. :)
The appointment with the neurologist was honestly disappointing. Our appointment ran 2 1/2 hours behind schedule so when the doctor rushed in he was obviously behind schedule and in a big hurry. This was the first time that I felt that we didn't have a "good" thorough appointment at JH. (I had always worked with a neurosurgeon before, so although I had met this doctor once before, I hadn't worked with him). He hadn't looked at my record at all prior to coming into the room and didn't know what was going on. After discussing my case for a couple minutes, he decided that the goal should be to improve the headache and the symptoms like the noise sensitivity, etc. He decided that I should try something entirely different to see what happens. He decided that we needed to try Botox injections in my head and neck. I honestly am skeptical that this will be a solution, but I will probably try it just to see.
We are still so thankful that I am doing so much better than I have for years. When we think about where I have been, with indescribable head pain, I have come a long way. Yes, it would be so wonderful if I could get better yet, but we continue to remind each other of how far I have come.
Since the injections would be repeated, we are working on getting a neurologist in the area to work with me on that, hopefully to follow the protocol of JH just to give it a fair shake.
At this point, I am really tired and my head is a little more irritated than usual. I am a little overwhelmed with all that is happening, as many moms may be at this time of the year, but I think that makes my head more irritated. So we will just take things one day at a time! Please don't be upset if I am not communicating as well as I should be, though!
**By the way, my dad is doing amazingly well! It will take a bit more time to fully recover, but we are so thankful that the Lord spared his life!
The news from the gynecologic oncologist was quite positive. The "mass" is still there. However, he has renamed it from a concerning abnormal cyst to the hydrosalpinx. I had misunderstood, evidently, that both were there. His theory is that the hydrosalpinx was caused by the abdominal infection I had a few years ago. So chances are that it has been there for a while and we just didn't know it. Since it has not changed in size since they started monitoring it in March, he feels that it is stable. As I've said before, under normal circumstances he would have removed it right away when it was found but because of my abdominal surgical history the risk is higher having surgery than not. So I will need to have ultrasounds every 6 months indefinitely to be sure it doesn't start changing. I asked if we could go once a year, but he didn't find that acceptable. :)
The appointment with the neurologist was honestly disappointing. Our appointment ran 2 1/2 hours behind schedule so when the doctor rushed in he was obviously behind schedule and in a big hurry. This was the first time that I felt that we didn't have a "good" thorough appointment at JH. (I had always worked with a neurosurgeon before, so although I had met this doctor once before, I hadn't worked with him). He hadn't looked at my record at all prior to coming into the room and didn't know what was going on. After discussing my case for a couple minutes, he decided that the goal should be to improve the headache and the symptoms like the noise sensitivity, etc. He decided that I should try something entirely different to see what happens. He decided that we needed to try Botox injections in my head and neck. I honestly am skeptical that this will be a solution, but I will probably try it just to see.
We are still so thankful that I am doing so much better than I have for years. When we think about where I have been, with indescribable head pain, I have come a long way. Yes, it would be so wonderful if I could get better yet, but we continue to remind each other of how far I have come.
Since the injections would be repeated, we are working on getting a neurologist in the area to work with me on that, hopefully to follow the protocol of JH just to give it a fair shake.
At this point, I am really tired and my head is a little more irritated than usual. I am a little overwhelmed with all that is happening, as many moms may be at this time of the year, but I think that makes my head more irritated. So we will just take things one day at a time! Please don't be upset if I am not communicating as well as I should be, though!
**By the way, my dad is doing amazingly well! It will take a bit more time to fully recover, but we are so thankful that the Lord spared his life!
Tuesday, December 4, 2012
Tuesday
I will try to update more tomorrow because I am pretty tired right now! But it is good to be home! We flew back in today.
Overall things went well. Our younger two kids were happily surprised that we actually came home the day we said we would. Usually we have been delayed. So that was a happy experience for our family to have! :)
I will leave it at that for now!
Overall things went well. Our younger two kids were happily surprised that we actually came home the day we said we would. Usually we have been delayed. So that was a happy experience for our family to have! :)
I will leave it at that for now!
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