Okay. I kept saying that anything goes, so I tried some Healing Prayer with my parents and a great bunch of ladies (plus a very healing man). My Dad has some great power. For the first time in a while, I had about an hour of no pain that was not drug induced. They say that prayer is very healing, and I can say for sure that it is. I think I had a "spiritual massage". I can't think of a better way to describe it.
Going through this process, and specifically writing it all down, has brought some very great memories to the front of my mind. I can't imagine how I would have made it through the process without my parents. If I offend anyone that is not my intent. We had some jokes that helped take my mind off the seriousness of the situation. I don't think until now that I realize how major that time in my life was and what it would do to the rest of my life. Since my original surgery was to "remove a blond root", I have decided that this time I am getting an upgrade.
I got the surgery "packet" of papers today. It is amazing how little information they give. I can't take aspirin, ibuprofen, etc. for five days prior to the surgery, but they don't tell me what pills actually contain these products. Even though they have the entire list of my current medications. That means I have to make yet another call to their office. Plus, how much torture do they want to put you through? "DO NOT EAT OR DRINK ANYTHING for at least eight hours prior to arrival time". Which, thank goodness, is 6:30 am.
Another day down - so, another day closer. I will keep posting and hope that this helps others to know that they are not alone in this process. I found some great information on Arnold Chiari today. Now that is becoming a little more visible, more facts are available. A few specifics for those that don't know what it is:
Chiari Malformation is a serious neurological disorder where the bottom part of the brain, the cerebellum, decends out of the skull and crowds the spinal cord, putting pressure on both the brain and spine and causing many symptoms.
Affects more than 300,000 people in the US
Causes a wide ranging, diverse set of symptoms. Research has shone that 95% of patients experience at least 5 symptoms.
Diagnosed using combination of MRI, neurological exam, physician's judgment, and other tests; patients often go 5 or more years before being properly diagnosed.
57% of 300 surveyed Chiari patients were told at some time that they were suffering from a mental or emotional problem.
The most interesting thing I have found is that Duke University has identified more than 100 families where two or more members are affected by Chiari. It does not mean that the family of everyone with Chiari is carrying a Chiari gene, just that there is a genetic basis for Chiari. Their study is ongoing.
Way too much info and it is getting a little tedious, so off to bed I go.
Tuesday, June 30, 2009
Monday, June 29, 2009
June 29, 2009 - 16 days to go
I don't know why I thought it was a good idea to blog about it when typing increases the pain. My hope is that someone else will get some relief from a similar problem.
Another day of work. It is difficult to make it through the day without taking multiple breaks because of the pain. I am curious to see if there is an increase in productivity with some pain relief. It would be nice to want to work out, clean house, play with the kid, etc. but I never have the energy. I can't convice myself to walk on the treadmill. I tried to jump rope for a bit, but it started bothering my arm. Of course. So much for my girlish figure. I guess that has been gone for a while now, thanks to age, kids and lack of willpower.
I didn't take the percocet last night and will not do that again. I don't feel like I slept at all. I'm sure the ladies at work are tired of hearing me complain. I don't blame them. They all have plenty of their own problems to worry about without me trying to add mine in.
The ANS rep dropped of shells of the battery packs they have so I can make the best decision. I figure that because it is going to be below my collar bone, smaller is better. He recommended that I tape it on and walk around with it for a while. Not sure that I want to do that, but I may just to make sure I am comfortable. Since we are skipping the trial (since it is in the cervical spine and apt to move more)I don't get to change my mind later. There is a substantial size difference and I will be going with the ANS Eon mini for sure.
Off to bathe the munchkin and then to bed with us both.
Another day of work. It is difficult to make it through the day without taking multiple breaks because of the pain. I am curious to see if there is an increase in productivity with some pain relief. It would be nice to want to work out, clean house, play with the kid, etc. but I never have the energy. I can't convice myself to walk on the treadmill. I tried to jump rope for a bit, but it started bothering my arm. Of course. So much for my girlish figure. I guess that has been gone for a while now, thanks to age, kids and lack of willpower.
I didn't take the percocet last night and will not do that again. I don't feel like I slept at all. I'm sure the ladies at work are tired of hearing me complain. I don't blame them. They all have plenty of their own problems to worry about without me trying to add mine in.
The ANS rep dropped of shells of the battery packs they have so I can make the best decision. I figure that because it is going to be below my collar bone, smaller is better. He recommended that I tape it on and walk around with it for a while. Not sure that I want to do that, but I may just to make sure I am comfortable. Since we are skipping the trial (since it is in the cervical spine and apt to move more)I don't get to change my mind later. There is a substantial size difference and I will be going with the ANS Eon mini for sure.
Off to bathe the munchkin and then to bed with us both.
The Next Step
At my first appointment with the pain doctor, he told me flat out that I was too young to get the implant and that we had so many other options to explore first.
So begins my experience with pain management prescriptions.
We started with one that I have blocked from memory. It was no help at all. Then on to amitriptyline. Wow...what a great thing. It took most of my pain away. We decided to try Lyrica for the remaining pain. I noticed a slight decrease in the remaining pain, but was experiencing weight gain. We decided that if the benefit was not that great, that it was not worth it. However, the pain increased when I stopped taking it.
I went back to the PM doc and decided that if I knew that Lyrica worked against my self control around chocolate, that I would be fine. I was aware enough to resist. But... No benefit from restarting the Lyrica. So it was time to try the next one. Cymbalta. I would never recommend this to anyone. The side effects I had were more than I care to mention. Plus, now, the amitriptylene is not working.
Next step, stay on the amitriptylene and add hydrocodone. No good. Stop hydrocodone and start with percocet. No help but at least I can sleep.
The final decision, to implant a neurostimulator in my cervical spine. I have been working on this for the last couple of weeks and am scheduled to have the procedure in just over two weeks.
I am ready to quit the meds and hope that the implant gives me enough relief that I can bear it.
The one thing I can say is, the information the doctors give regarding the implant it only about half of what you hear when you visit with the neurosurgeon.
Now that I have the background information out there, I can begin a true blog about the process and what it is like to live with Chronic Pain that is unresolved with decompression surgery.
So begins my experience with pain management prescriptions.
We started with one that I have blocked from memory. It was no help at all. Then on to amitriptyline. Wow...what a great thing. It took most of my pain away. We decided to try Lyrica for the remaining pain. I noticed a slight decrease in the remaining pain, but was experiencing weight gain. We decided that if the benefit was not that great, that it was not worth it. However, the pain increased when I stopped taking it.
I went back to the PM doc and decided that if I knew that Lyrica worked against my self control around chocolate, that I would be fine. I was aware enough to resist. But... No benefit from restarting the Lyrica. So it was time to try the next one. Cymbalta. I would never recommend this to anyone. The side effects I had were more than I care to mention. Plus, now, the amitriptylene is not working.
Next step, stay on the amitriptylene and add hydrocodone. No good. Stop hydrocodone and start with percocet. No help but at least I can sleep.
The final decision, to implant a neurostimulator in my cervical spine. I have been working on this for the last couple of weeks and am scheduled to have the procedure in just over two weeks.
I am ready to quit the meds and hope that the implant gives me enough relief that I can bear it.
The one thing I can say is, the information the doctors give regarding the implant it only about half of what you hear when you visit with the neurosurgeon.
Now that I have the background information out there, I can begin a true blog about the process and what it is like to live with Chronic Pain that is unresolved with decompression surgery.
Information Overload
Hello everyone.
I decided it was time to add my own voice and opinion on Chiari and Chronic Pain since I can't seem to find anyone quite like me and I know there has to be someone.
When I was 15, I was diagnosed with Arnold Chiari Malformation I. I had been through so many different attempts to fix the numbness, tingling and pain I was feeling in my right arm. I also had horrendous headaches all the time. I thought it was normal to take Tylenol, Aleve, Advil, etc. multiple times a day. Finally, we went to a Neurosurgeon and was diagnosed with ACM. In 1994, at the age of 16, I had decompression surgery. I had complete faith in my doctor and my family was there for me. Going in to the surgery, I had no fears. After the surgery is another story.
A week in ICU and another couple of weeks in different levels of recovery. Finally, one month after leaving home (we had to go to Washington State from Idaho because my dad was in the military), I was deemed recovered enough to go home. My brother and sisters were wonderful about having to stay with friends while Mom and Dad were with me. Not anything I would wish on anyone, but thank goodness we did it.
Still in a neck brace, I was out of school for another couple weeks. My headaches (other than the occasional nerve "jolt") were gone, I could walk in a straight(er) line and the numbness and tingling were gone. The chronic pain, however, was not. It was not bad enough to worry about. I had so many other things to get on with. Too much time away had taken a toll on my social health. I am quite the talker, and didn't deal well with only having my parents and siblings to talk to. I feel for them as well - I'm sure it was no picnic to deal with me.
The pain didn't really start to bother me until a few years down the road. In 2003, it got bad enough that I decided to see my family practitioner to see what he had to say. After a couple of half-hearted attempts by him, he told me it would be my "cross to bear". That didn't sit well with me. Not that I don't have faith, I just figured that if God created intelligent people that could heal, it was for a reason.
Then, in 2004, I got pregnant with my son. It was time to put my pain on the back burner and focus on this new time in my life. After having him and getting the whole parenting thing under my belt, my pain increased. I had changed family practice docs by now and decided it was time to try again. My husband found an article about a new method for treating chronic pain - Spinal Cord Stimulation. I took the article in with me and he referred me to a pain management doc...
I decided it was time to add my own voice and opinion on Chiari and Chronic Pain since I can't seem to find anyone quite like me and I know there has to be someone.
When I was 15, I was diagnosed with Arnold Chiari Malformation I. I had been through so many different attempts to fix the numbness, tingling and pain I was feeling in my right arm. I also had horrendous headaches all the time. I thought it was normal to take Tylenol, Aleve, Advil, etc. multiple times a day. Finally, we went to a Neurosurgeon and was diagnosed with ACM. In 1994, at the age of 16, I had decompression surgery. I had complete faith in my doctor and my family was there for me. Going in to the surgery, I had no fears. After the surgery is another story.
A week in ICU and another couple of weeks in different levels of recovery. Finally, one month after leaving home (we had to go to Washington State from Idaho because my dad was in the military), I was deemed recovered enough to go home. My brother and sisters were wonderful about having to stay with friends while Mom and Dad were with me. Not anything I would wish on anyone, but thank goodness we did it.
Still in a neck brace, I was out of school for another couple weeks. My headaches (other than the occasional nerve "jolt") were gone, I could walk in a straight(er) line and the numbness and tingling were gone. The chronic pain, however, was not. It was not bad enough to worry about. I had so many other things to get on with. Too much time away had taken a toll on my social health. I am quite the talker, and didn't deal well with only having my parents and siblings to talk to. I feel for them as well - I'm sure it was no picnic to deal with me.
The pain didn't really start to bother me until a few years down the road. In 2003, it got bad enough that I decided to see my family practitioner to see what he had to say. After a couple of half-hearted attempts by him, he told me it would be my "cross to bear". That didn't sit well with me. Not that I don't have faith, I just figured that if God created intelligent people that could heal, it was for a reason.
Then, in 2004, I got pregnant with my son. It was time to put my pain on the back burner and focus on this new time in my life. After having him and getting the whole parenting thing under my belt, my pain increased. I had changed family practice docs by now and decided it was time to try again. My husband found an article about a new method for treating chronic pain - Spinal Cord Stimulation. I took the article in with me and he referred me to a pain management doc...
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