Since I last posted, there have been many good days and some that I would have to call difficult just because of an increase in shocking. It's not as bad as it has been in the past, triggered only by a few things instead of the whole list of things. I guess the thing that makes it difficult for me is that I try to figure out why it is happening again after weeks of comfort and good pain control from my meds. Is it that time of the month? Is it an impending sinus infection or cold? Have I had too much caffiene? Am I more stressed for some reason? Not getting enough sleep? Are my medications losing effectiveness---if so, where do I go next? Does this increase in pain mean it will only keep getting worse or settle down again without upping my med dose somehow? The only one of these things that has ever been sort of proven in my case has to do with the medications wearing off. That situation is well-documented in my case and in the things I have read about trigeminal neuralgia, so I assume it's that. But I still wonder and suspect these other kinds of things as possible explanations. Sometimes I picture the inside of my head and imagine some big old artery pulsing away in there, provoking my innocent cranial nerve #5 which is just minding its own business...and I get back to a place of questioning my decisions and wondering if I am doing the right things. Maybe I should have tried harder to change my diet or take more vitamins, or stick with acupuncture longer (oh, what a great unexpected choice of words!), or meditate, or try the upper cervical chiropractic treatments, pray more, or just live with it until I really can't stand it anymore. I know of people and have "met" people online who suffer more than I do and have for many years. What is that all about?
Having said all that, let me say that the many good days have included some great bleacher sitting and visiting with Columbus parents who have become good and caring friends, a couple of good part-time days at work being a real hospice social worker again, hanging out at home with the kids and Jeff, reading with my goddaughter Clara, and finding the best purse ever at Kohl's. I'll post a photo and that story sometime soon--if I can remember that.
Oh, and still waiting for the date from Froedtert...
Saturday, January 31, 2009
Thursday, January 22, 2009
Hungry Visitor
My friend Sarah, who grew up in Portland, Oregon but has lived in central WI for the past 16 or so years, still gets a bit intimidated by the wildlife that lives near our place. She is especially freaked out by birds, especially Sandhill cranes, which make some interesting, loud vocalizations pretty much all spring and summer long. I remind her that they really are just communicating to one another and it has nothing to do with her, but the sound and its close proximity just sends shivers up her spine. So, today I thought about Sarah when I was notified subtly by Chance that something was wrong outside and looked out to see this visitor to the only bird feeder that I am keeping stocked this winter. He (I'm sure I saw little nubbins on his head where his rack used to connect) just calmly hung around, nibbling up as many black oil sunflower seeds as possible. He got rattled by a few close flying chickadees who probably did not appreciate him horning in on their food source (if you are groaning, that was a good pun!), but he stayed about 25 minutes. I know there are far too many of his kind around, and I have not appreciated their presence in two particular vehicular introductions in the past year or so, but today I am feeling kind of attached to him. Maybe by feeding the birds we are making his winter just a bit better, too.
Plus I love the thought of sharing these photos with the family hunters who saw not a single deer this year on their annual trek to the woods. Maybe they should leave a trail of bird seed next November...
Monday, January 19, 2009
nothing new really
Life goes on...Liz has finals and is zeroing in on her last 2 behind the wheel sessions with her driving instructor. Laura is planning out her outfits and awaiting the big ski trip for Catholic Schools Week. Jeff works, even in the bitterest cold, and continues to donate time to the fire department for just about anything. I have been spending a lot of time on the really user-unfriendly site of Jeff's insurance provider, trying to determine simply whether Dr. Kopell is an in-network provider for them. Can't find him anywhere in the provider look-up system, but I see many of his colleagues. Can't get ahold of a real live person on the phone to just simply ask either. Tomorrow I will try again. I'm just trying to figure out if I should stay on my COBRA plan or switch to Jeff's coverage...simple really.
I have always felt for people who don't understand all of that insurance paperwork and detail. In hospice I saw and spoke with so many who had no idea what it all meant or even where to start, and the mail just piles up...and they are so sick or so worried and worn out from taking care of the person who is ill. That was one of the ways I knew I was helping them. Social workers are not shy about diving right into those problems and helping them sort through their questions and get some answers. However, there have been many times through this whole thing that I have felt frustrated by all the written information coming into my mailbox in addition to the inability to get information! I should say, though, my insurer, Security Health Plan has really been easy to deal with and very very helpful. I have a case manager named Lori who calls regularly to see how things are and to provide encouragement or information, or to make some connections, or to make things go smoother.
Work has called. I can work again, very part-time, between now and surgery time to help out. A social worker has resigned and they are pretty short-handed. I am interested in trying again, with really specific social work duties for a limited day. The return to work form is on my neurologist's desk, so when that's done, I'll go to the office again. Of course, it makes me nervous since when I returned to work before (Aug/Sept) my pain blew out like crazy, but I want to work some if I can.
My surgery date should be set soon. They did call last week with an earlier date than had even been hinted at in the consult visit, which caught me off guard, but also because it was on my birthday 2/24, I just couldn't accept. I'll admit I did have a quick flash of the irony of possibly dying on my birthday and got spooked by that, but then I quickly snapped out of that kind of thinking and acknowledged that I don't want my surgery/hospitalization to interfere with Liz's 16th birthday 2 days later. So the schedulers were patient with me and agreed to go back to the drawing board to get it coordinated for a day in March.
I have always felt for people who don't understand all of that insurance paperwork and detail. In hospice I saw and spoke with so many who had no idea what it all meant or even where to start, and the mail just piles up...and they are so sick or so worried and worn out from taking care of the person who is ill. That was one of the ways I knew I was helping them. Social workers are not shy about diving right into those problems and helping them sort through their questions and get some answers. However, there have been many times through this whole thing that I have felt frustrated by all the written information coming into my mailbox in addition to the inability to get information! I should say, though, my insurer, Security Health Plan has really been easy to deal with and very very helpful. I have a case manager named Lori who calls regularly to see how things are and to provide encouragement or information, or to make some connections, or to make things go smoother.
Work has called. I can work again, very part-time, between now and surgery time to help out. A social worker has resigned and they are pretty short-handed. I am interested in trying again, with really specific social work duties for a limited day. The return to work form is on my neurologist's desk, so when that's done, I'll go to the office again. Of course, it makes me nervous since when I returned to work before (Aug/Sept) my pain blew out like crazy, but I want to work some if I can.
My surgery date should be set soon. They did call last week with an earlier date than had even been hinted at in the consult visit, which caught me off guard, but also because it was on my birthday 2/24, I just couldn't accept. I'll admit I did have a quick flash of the irony of possibly dying on my birthday and got spooked by that, but then I quickly snapped out of that kind of thinking and acknowledged that I don't want my surgery/hospitalization to interfere with Liz's 16th birthday 2 days later. So the schedulers were patient with me and agreed to go back to the drawing board to get it coordinated for a day in March.
Friday, January 9, 2009
The GOLD Standard
The reasons I am going to have the MVD (microvascular decompression) surgery are as follows:
1. This procedure does not damage the trigeminal nerve as the two other radiation based treatments do. It's a question of having facial numbness instead of pain. The MVD leaves the nerve intact.
2. The MVD has been used the longest to treat TN and is considered "the gold standard." It has an approximately 90% success rate initially and 5 years out the success rate is still as high as 70%. Success is defined as no pain/no medications.
3. Because the radiation based surgeries cause damage to the nerve, doing an MVD after one of those is not as successful (for instance, if the gamma knife worked for 1-2 years before symptoms came back). Also, a patient is allowed only to receive two gamma knife surgeries--too much radiation otherwise...
4. I'm young for this disorder. At 42, I hopefully have many years to live and since this is a chronic condition, I want to do the thing that has the most chance of success for the longest period of time.
5. The medication route is not working for me. I am now on three medications for this, at high doses according to my neurologist and the handfuls of pills I swallow 3x a day. The meds have made me less than myself. Aside from the sedating effects and the memory and cognitive interference, it's hard to describe how the meds subdue me --- in terms of my personality, motivation, self-esteem, humor, and all of that. There are some other med options to try eventually if needed in addition to what I'm taking, but let's not forget that I am not working, have a safe zone of about 15-20 miles from home that I can drive without nodding off, and also there are longer term side effects of anti-seizure meds that concern me.
This is not the most concise or well put-together posting, but thinking about this (as I have done for months now) turns me in circles. I am not thrilled about having this surgery because it sounds really difficult to go through. I'll write about it another time, and hopefully you will not read that post while you're having your breakfast. But -- Jeff and I really do think I need to do this surgery for the best chance at getting my regular life back.
1. This procedure does not damage the trigeminal nerve as the two other radiation based treatments do. It's a question of having facial numbness instead of pain. The MVD leaves the nerve intact.
2. The MVD has been used the longest to treat TN and is considered "the gold standard." It has an approximately 90% success rate initially and 5 years out the success rate is still as high as 70%. Success is defined as no pain/no medications.
3. Because the radiation based surgeries cause damage to the nerve, doing an MVD after one of those is not as successful (for instance, if the gamma knife worked for 1-2 years before symptoms came back). Also, a patient is allowed only to receive two gamma knife surgeries--too much radiation otherwise...
4. I'm young for this disorder. At 42, I hopefully have many years to live and since this is a chronic condition, I want to do the thing that has the most chance of success for the longest period of time.
5. The medication route is not working for me. I am now on three medications for this, at high doses according to my neurologist and the handfuls of pills I swallow 3x a day. The meds have made me less than myself. Aside from the sedating effects and the memory and cognitive interference, it's hard to describe how the meds subdue me --- in terms of my personality, motivation, self-esteem, humor, and all of that. There are some other med options to try eventually if needed in addition to what I'm taking, but let's not forget that I am not working, have a safe zone of about 15-20 miles from home that I can drive without nodding off, and also there are longer term side effects of anti-seizure meds that concern me.
This is not the most concise or well put-together posting, but thinking about this (as I have done for months now) turns me in circles. I am not thrilled about having this surgery because it sounds really difficult to go through. I'll write about it another time, and hopefully you will not read that post while you're having your breakfast. But -- Jeff and I really do think I need to do this surgery for the best chance at getting my regular life back.
a quick summary
The consult in Milwaukee with the neurosurgeon went well. I want to go into more detail about things, but cannot right now. The bottom line is I am planning to have microvascular decompression surgery (MVD) early this spring (date yet unknown) for what we feel is my best chance at getting rid of the TN pain and the need for all this medication.
Anyone who knows me can imagine that it's really not as simple as what I just wrote in a couple of sentences. There is a lot to consider and a lot of factual and statistical information I will share here soon, as well as a look into this weird combined feeling of relief and fear.
Anyone who knows me can imagine that it's really not as simple as what I just wrote in a couple of sentences. There is a lot to consider and a lot of factual and statistical information I will share here soon, as well as a look into this weird combined feeling of relief and fear.
Tuesday, January 6, 2009
quiet
This is the best kind of day...one where there is no absolute to-do list but one that is productive by taking care of things in the house that have needed doing for a while---watering the high plants, getting the "junk drawer" project taken care of, laundry, unpacking, paying a few bills, talking to the dog...
It's a general puttering around.
A day like this allows me to just think a lot and today that is really good. I am within 24 hours of seeing the neurosurgeon at Froedtert, and I think mentally I am just getting ready for that. Thinking through the questions I need to ask, preparing to fill out the 6 pages of pre-appointment paperwork they sent, and getting my mind as still as possible so I can accept whatever I learn there tomorrow. Up until today I have been spending a fair amount of time exercising my "what if" thinking and wondering about all the possible scenarios that could play out. But today I really do feel at peace about the whole thing---I am not worried. Nervous, yes. Curious, yes. Hopeful, yes. But not worried. I know that this doctor will provide information and medical advice and we'll go from there. Getting ahead of myself just leads to anxiety and there's no room for that right now.
It's a general puttering around.
A day like this allows me to just think a lot and today that is really good. I am within 24 hours of seeing the neurosurgeon at Froedtert, and I think mentally I am just getting ready for that. Thinking through the questions I need to ask, preparing to fill out the 6 pages of pre-appointment paperwork they sent, and getting my mind as still as possible so I can accept whatever I learn there tomorrow. Up until today I have been spending a fair amount of time exercising my "what if" thinking and wondering about all the possible scenarios that could play out. But today I really do feel at peace about the whole thing---I am not worried. Nervous, yes. Curious, yes. Hopeful, yes. But not worried. I know that this doctor will provide information and medical advice and we'll go from there. Getting ahead of myself just leads to anxiety and there's no room for that right now.
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