Final day(s?) of stimulator trial

So today was a bittersweet day – the leads were taken out & they took away my nerve stimulation. Obviously that’s a bummer because it was helping my headache so much. Clearly, it had to happen because it’s not a permanent system…there were wires poking out of my body. But it was SO NICE to have less pain – it’s hard to go back to my ‘normal’ headache. Pssh. What are you gonna do?

Of course it is nice to have all the cords & my little box gone.

So in the end, it seems that the stimulator gave me about 70% pain relief, except with storm headaches (headaches while the barometric pressure is dropping), when I probably get about 30%. It’s pretty life-changing. Or I should say, will be pretty life-changing. I could definitely get used to it.

I spoke to my doctor today about my back pain. We were hoping that the cervical leads might affect my lower back as well. Obviously, that didn’t happen. But the back pain remains. It hasn’t been as big of a concern as the headaches because the headaches produce more pain. BUT with the stimulator in, on the normal days (w/o storms) I was feeling limited by my back pain. I had to come home to ice & rest before I could keep going & getting things done. Which, I know, boo-hoo for me. I realize that I might be asking a lot. I figure if it could help, and could drastically improve BOTH pain issues, why not get the most out of it? So we’re going to do another trial, this time for my lower back. That way we’ll either get good results, and be able to use the stimulator for both areas, or it won’t work. If the stimulator isn’t going to help my lower back, then I’ll feel good about going on to continue looking for other options for that pain.

We’ll do this trial before the permanent stimulator implant (obviously), and see what kind of results we get!

The taking out of the leads was a little…interesting. If you’re easily queasy, click away now. You’ve read the most important stuff.

We took out the cervical leads, and that was fairly smooth. Each lead was sutured in place, and as the occipital sutures were clipped, I started feeling warm & a little nauseated. I started to fan myself & told them how I was feeling. The first occipital lead is pulled out – I’m continuing to feel like I might pass out. But I know that I’m sitting down & just one more has to come out. I figure we’re good. Then the second lead came out, and sometime in there I passed out. I came to & they were lifting me onto the hospital bed (I had been sitting in a chair, leaning forward). I had some kind of vaso-vagal response. At least I didn’t throw up!

And  after half an hour or so, I was all good. The wires were out & we were on to talking.

I’m doing well — missing the nerve stimulation but feeling more hope than I have in a long time.

Day 2 of the nerve stimulator trial

Hello again my peeps!

I’ll try to update frequently while this trial is going on – hopefully it won’t be redundant. But I want to keep you updated on my progress, especially since I know SO MANY of you have been on this journey with me.

So, I am doing really well. The headache is down to a 1 or 2 (out of 10) most of the time. Generally it hovers around a 6, so this is MAJOR. I mean, seriously. This is better than the Botox was, and I believe it will continue to last.  I can’t stop smiling.

My neck & shoulders are still sore from the procedure, but advil is keeping it under control. My back pain isn’t helped by the stimulation BUT improving the headaches so much is more important. The migraine pain was far worse (did I just say WAS?!), and I’m still hopeful that we’ll find other solutions for my back.

Thank you for your prayers and support.

Just after the procedure

Hi everyone – I just got home from the pain clinic & the finished procedure. It went well, took longer than we had planned, but I am well.

The stimulator is working, at least to some degree – I’ll learn more after the anesthesia wears off & I continue to learn about programming the device.

We didn’t get any of the back pain, but the stimulator is having an effect on my head pain.

I’ll write more soonish when I know more. My neck & shoulders are very sore from the procedure.

Thank you for the prayers and support – they mean so much to me.

A little of this and a little of that

So a few things have happened these past weeks – I’ve been kind of processing the more important things, and so nothing has been reported on my blog.

First of all, I went to see my neurologist on May 4th. We didn’t change much because I was going to see my pain doctor the next week (and the pain doc and I are working on making changes). My neurologist and I did work out a way for me to have magnesium infusions. I first had magnesium infusions back when I was inpatient at Chicago. What was fantastic about magnesium was that there were no side effects but it entirely took away my headache pain. Fantastic, right? Right. Unfortunately, I haven’t been able to duplicate the results with oral magnesium. ANYWAY, back to the infusions. I was hoping I could use the infusions for those tough-to-break migraines.

And so I found myself at the hospital, in the infusion center on the next Monday. And somehow, for some reason, it didn’t work. I went with a normal headache – not even a particularly tough one. Soooo that is probably a no go from now on.

Then Friday the 14th I had my appointment at the pain clinic. I had a horrible night’s sleep the night before and so found myself trying not to puke in the office. The great thing is that I didn’t, and just laid very still.    I wasn’t in the best of moods when my doctor came in (one HOUR later) — but we went onward and upward. We talked more about the RFA procedure, and I asked him where he was with the insurance company. He’s called 4x and said he waited on hold for 20 minutes or more each time. *sigh*

So we talked about where to go from here – he felt like if we went through with the RFA and I got 50% pain relief (best case scenario), we’d still be working on something else to take care of the last half. And so the last resort has arrived. He says that if I were his sister, he’d recommend going the route of the Occipital Nerve Stiumulator. This video explains spinal cord nerve stimulators, which are the same idea. Spinal cord stimulators came first, and then they started to be used for intractable headaches/migraines in the cervical area. We’re working on scheduling a trial, and from there the real decision making will begin. OR it might just not work well enough, in which case some other decision making will have to take place.

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In other news, we just got home from Paris a few days ago. I would’ve loved to have told you about it, but then I also am paranoid and don’t want people finding us and burgling us. So I will tell you now, after the fact. Spencer & I went to Paris – we were there for 9 days. We were able to go because he had a poster at a conference there; and after going to other very fun places in recent months, he has saved up enough frequent flier miles so that my ticket was paid for! Yippee! It was very fun, and I will post pictures/details soon.

a lengthy update!

Thanks for your great ideas on nausea. Things are improved — I met a woman recently with hypoglycemia. She has to eat a small meal every two hours. The more we talked, the more animated she got, saying that this could really help me! I thought it was worth a try. So I eat my normal meals, but eat a snack every two hours. Doesn’t help the headaches, but it does improve the nausea most of the time. Hooray!

I was talking to my sister the other day and she said it had been a while since I wrote/put up pictures on my blog. It’s true. I feel sometimes as if telling you the events of my life is a little depressing. The last five years reads a lot like this ‘We tried _____, it didn’t work. Now we’re going to try _____.’

But nonetheless, there is so much good to tell and I need to continue to update my family on my health (one of the main reasons for starting this blog), but I will also try to write about other stuff going on. Thanks for sticking with me.

What is happening now in the world of doctor’s appointments…I went in Tuesday and we were going to do more trigger point injections (in the back), but talked about it and since they hadn’t been working we didn’t do anymore. So that was good, and we just made it into a followup appointment  about the Botox. The Botox worked for two days and then…nothing. I caught him up on that and we made a game plan for both the head and the back. We wanted to attack the back first, and so this morning we did injections into my sacroiliac joints. I don’t know if you know what the sacroiliac (SI) joint is, but it’s where the sacrum (the very bottom of the spine) meets the pelvis…the bottom of the pelvis are the ilium. Anyways, it’s the biggest joint in the body (interesting, right?), and takes all your weight when you walk and sit. Which is why those things hurt me so much. So he did some tests and found that my SI joints were inflamed and dysfunctional in some way.

The injections went well – these have to be done under Xray, and while I was under there he could see arthritis in both joints (more in the left) and the left was over-rotated. And so, I am hopeful that we have finally hit on something that will help. This should help with the pain and physical therapy should help get my back into better shape. Time will tell!

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So I have two really good friends – we get together for lunch every couple of weeks. Last weekend (Wednesday to Sunday) we went to St. George, Utah. Those of you out of state are probably not familiar with St. George. The most important thing to know is that it is 4 hours SOUTH of Salt Lake City. So… warmer.

How about an update?

Well it’s been long enough! I’ve still been around, reading friends’ blogs. Just haven’t felt like blogging for whatever reason.

So you all know I’m seeing the pain clinic for back pain, but that the Dr. feels he can help with my headaches. I’ve been doing physical therapy (for my back) since the treatment plan. It’s been a couple of months of PT and I’m not seeing any results yet. But that’s not the good part.

The good part is this – my pain doc is working on the headache angle and I think we have actually hit on something.

I KNOW!

So we did some (more) nerve blocks, these in the back of my head on the right side. So those were about like the previous nerve blocks, only effective as long as the local anesthesia is working. But that led my doc to think that Botox in the same locations might work. And so last Tuesday we did Botox injections in 3 locations, around the back of my head on the right side. So he said it would probably take a few days to see any results. I waited hopefully… and then on Thursday I woke up, and my headache was much better than normal (on the right side). It still switches back and forth to the left side (where the pain is its normal bad-ness). As the day progresses, my headache gets worse and gets back to its normal levels. It also seems to be affected by not enough sleep and weather (worse before storms). So I’m still figuring out how much it has helped.

But clearly it has had some effect. And that is really good news!

Here is an overdue update on my hair…this summer and fall my hair was normal on top (blondish) and then purple on the bottom half. Here are some pictures for you…

More on the pain clinic.

So again, I have taken kind of longer than is necessary to post about my pain clinic appointments. I have no idea why. I find the whole situation a little depressing. I am frustrated by these new limits; not being able to walk much without pain, stand long without pain, and chairs I used to find quite comfortable I can now get so much pain sitting in. Blah blah – on to the hope and the plans.

I went in last Friday to hear what my pain doctor, Dr. D., had in store. What his treatment plan was for me. I brought Spencer along, for two reasons. 1, so he could hear the whole thing straight from the horse’s mouth and 2, he could ask any questions right then. So Dr. D said that after talking with everyone (pharmacist, therapist, physical therapist), he thought that the headaches were even more of an issue than the back pain. Yes, I said. Well, he believes he can help and would like to work concurrently on the headaches while trying to improve my back. I have my doubts, but I’m game. Of course I spent more than a year at this clinic, trying to help my headaches. There was no improvement, but lots of exploration. Dr. D says he ‘does things differently’ — he would like to try some injections in different parts of my head. Actually sounds a lot like what I did with the last pain clinic doc, but we shall see.

So that’s something I hadn’t anticipated, and while I’m not at all looking forward to the injections (they are incredibly painful), who knows? It just might help.

The plan for my back is this; start out with physical therapy and possibly onto injections (more?!). The problem appears to be two-fold, there is the herniated disc and in the same region, problems with my facet joints. I’m still reading up about this and learning what they are, what is wrong with them, etc. But they are at least part of the problem. How big a part remains to be seen. There are more options (which we discussed) for after PT and injections — implants and other scary type things. Those are off in the future if we can’t find pain relief from the PT and/or injections.

Sorry if this is rambling and/or doesn’t make sense – I slept poorly (again) last night.

His other thoughts about my headaches were…not impressive. My husband mentioned he seemed a little overconfident. I think that’s supposed to inspire confidence, but sometimes doctors actually make me feel less confident about their capacity to help. Also, the winking? What the heck. Ok, so his thoughts were that my medicines were that they were ‘random’ and that there were some that aren’t doing anything and we should discontinue some. Wellllll, subject the first, I feel like maybe he’s forgotten that he’s jumping into a 5 year ongoing situation. This isn’t new, and the reason the meds seem random are that they’ve been added by different doctors – most of them treat symptoms of the problem (nausea, sleep and pain) and not the problem itself BECAUSE we have tried so many preventative meds without success. The few that I’m on now actually help me. I just got off half a dozen meds that weren’t helping me. Pfft. I’m sure we’ll have more discussion on that later.
So then this last Tuesday I went to my first PT appointment. I like my physical therapist, she’s nice and she realizes that I have some idea of what’s going on. I have dealt with the back pain for a long time, and I feel like she understands the importance of my symptoms as well as my limitations. That said, we had our first session and she taught me a few very gentle stretches. I mean gentle, easy. I’m supposed to do them three times a day. After I got home from my PT session, my neck and upper back was hurting. Also, the headache across the back of my head (tension HA that goes with my back hurting) was worse. But I figured that maybe I just needed to keep at it and things would improve. This turned out to be wishful thinking, and a day and a half into it, I was still dealing with this extra pain. No relief; extra pain. Soooo I called and left a message for her Thursday, she hasn’t returned it yet. I decided on my own to discontinue the stretches and hope the extra pain would at least go away in time for my *next* appointment, this coming Tuesday. My neck still hurts quite a bit.

That’s it! That’s my update!

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On a COMPLETELY unrelated note, have you seen the Droid (phone) commercials? I’ve only seen a few hundred. They are pretty good, as far as cell phone commercials go. I was going to put a video in,  but I can’t find one that includes the section I’m talking about. At the VERY very end, in tiny print at the bottom of the screen, it says that Droid is trademarked by Lucasfilms. Lucas trademarked the WORD droid. That is pure awesomeness. Do you think that means they are getting royalties from the sales of the Droid?

Wow.

I’m totally impressed by that.

the pain clinic, round II

Hello, internets, it’s me, Emily.

So Tuesday I went to see the pain clinic – this time for my back. And things are going to be very different this time around. Hopefully that means we make some improvements! Ha. But seriously, I went to the appointment, and my first appointment was with the physical therapist and doctor, then I had an appointment with the pharmacist.

So there was a doctor there who was interning with Dr. D (my doctor), but Dr. D. himself did not appear until later on. Apparently his time is valuable. Fair enough. There was also a pharmacy intern and a medical student. Also, the physical therapist, Tami. Of course, I put on the gown right away, and if it didn’t feel like Grand Central station before, it sure did then! They tried to keep me as covered up as they could, but basically there’s not a lot to be done. So for the first hour I was ‘evaluated’ by the physical therapist. Of course this involves testing my pain, when it appears, when it doesn’t. There was a lot of poking and prodding of my back, as well as twisting and measuring. My right leg is 1 cm shorter than my left leg! How do you like them apples? Apparently, anything up to 2 cm is still considered normal. The PT felt that the leg thing combined with the accident may be causing the perfect storm of pain in my back. No mention yet on why this started last October. I’m pretty sure we’ll never know that.

So after that, I got dressed again and we talked – she warned me that PT is very different in the pain clinic. I figured. And then Dr. D made his appearance. He went over the broad strokes of things (often making mistakes, which I corrected), and said he thought they’d be able to help me. He cautioned that he was not a pain eradicator, but a pain manager. I think he was just trying to make sure my hopes weren’t *too* high. Then it was off to the pharmacist.

The pharmacy intern took me and we went to a room with a comfortable chair. HALLELUJAH! That was the best part of this appointment. We basically went over all the meds I’m taking, why I’m taking them, when I started taking them, and how much I feel like they work for me. 90% of the pills are for my headaches, so we talked a fair amount about that.

And there it is. The appointment. I felt good about it, I’m looking forward to working with the physical therapist and hopefully figuring some stuff out. I would LOVE it if we could improve or do away with the back pain with just exercises; more or different exercises. The needles, I’m hoping to stay away from as much as possible. The pills….we shall see. The one I’m on now isn’t helping and is causing side effects. Brain fog, myoclonic jerks, etc. I want off this ride!

All the people I met with (Dr. D, the pharmacist, the PT, and the therapist) will all get together and talk about my case. Then I’ll see Dr. D Friday, November 6 to go over their plan of attack.

Invisible Illness Meme

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: migraines and back pain

2. I was diagnosed with it in the year: 2000 and 2009, respectively

3. But I had symptoms since:1986 and 1995, respectively

4. The biggest adjustment I’ve had to make is: doing less – less of everything, and resting more.

5. Most people assume: that migraines are just a bad headache; I think most have never heard of someone having migraines or headaches everyday. (You’re too young to have chronic pain!)

6. The hardest part about mornings are: the pain before I eat and take my breakfast pills.

7. My favorite medical TV show is: House. Not for the medical part of it, but for the humor.

8. A gadget I couldn’t live without is: ice packs and heating pads.

9. The hardest part about nights are: staying asleep.

10. Each day I take __ pills & vitamins. (No comments, please):  18. Many of those are the same pills repeated.

11. Regarding alternative treatments: Ihave tried many and all have failed. I feel alarm bells going off when alternative practitioners ‘know’ they can help me. This hasn’t been the case at all so far.

12. If I had to choose between an invisible illness or visible I would choose: Invisible. I can choose who to tell and who not to, and I can try to look and act as normal as possible. In some ways it seems that visible illnesses are given more credence and are more widely understood. But at some point you have to realize that whatever people think about me or my pain, they can go fly a kite, because I know my body and have to live with it.

13. Regarding working and career: I feel like my life has taken a huge detour — I planned to be a piano teacher after college, and have so far been unable to realize those dreams. It is very difficult to play and would be even more difficult to teach and listen to children playing.

14. People would be surprised to know: I’m not always happy and cheerful. I didn’t choose this life, and I’m just trying to make it through the best I can. Friends and acquaintances are always saying ‘You seem so cheerful, so happy. You never seem down and I forget that you’re in pain.’ It’s just not true. And thankfully my family and closest friends know this. They know I’m not Superwoman, and I”m not trying to be.

15. The hardest thing to accept about my new reality has been: sitting out and waiting and resting. I want to be doing, be in the middle of the action, listening to loud music…you get the idea.

16. Something I never thought I could do with my illness that I did was: …this was the hardest question. I feel like I haven’t turned a major corner yet. But recently, with my back pain, I was pleasantly surprised with how well my driving vacation (to Oregon and CA) went.

17. The commercials about my illness: are annoying and make me wish more real information was being spread, instead of ads for medications. It also makes migraines seem much simpler to treat than it is for some of us.

18. Something I really miss doing since I was diagnosed is: playing the piano for as long as I wanted.

19. It was really hard to have to give up: listening to music as loud as I wanted to. Also, chocolate.

20. A new hobby I have taken up since my diagnosis is: crocheting, making jewelry, and blogging!

21. If I could have one day of feeling normal again I would: play the piano, have a fun dinner with friends, clean, go out dancing and/or to a symphony concert.

22. My illness has taught me: doctors don’t always have the answers, sometimes answers take time, everyone is struggling with different issues — we just don’t always know it.

23. Want to know a secret? One thing people say that gets under my skin is: What do you do? It’s something I just need to ignore, but meeting new people, I hate this part of the process…I have to tell them I’m not going to school, I’m not working, I have these headaches and etc….it just changes the tone of the conversation, and they feel bad for me. So not what  I”m after.

24. But I love it when people: hug me. Talk to me about their lives and their loves. Even though I have not a lot going on, I do have some things going on, and I love to talk about books or movies.

25. My favorite motto, scripture, quote that gets me through tough times is: Phil. 4:13, I can do all things through Christ which strengtheneth me.

26. When someone is diagnosed I’d like to tell them: to treat yourself kindly, to watch out for rebound headaches, do research on your own and don’t just listen to what the doctors tell you, there is a lot of comfort to be found from online communities.

27. Something that has surprised me about living with an illness is:how quickly time seems to pass me by.

28. The nicest thing someone did for me when I wasn’t feeling well was: there have been many – times my mother or MIL scrubbed my tub, times family or friends from church brought me meals.

29. I’m involved with Invisible Illness Week because: too often it is assumed that if it can’t be seen it isn’t real, it’s made up or imagined.

30. The fact that you read this list makes me feel: hopeful for the future. I hope people will get a better idea of what it’s like to walk my path and maybe try to learn more about diseases they don’t know about when they encounter them.

Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com

time out from vacation…

for another update on health.

This one is all about my back. Friday I saw my orthopaedic specialist (spell check says that should be Orthopedist) — this was my followup with him regarding the cortisone injection.

We discussed how it went, how badly it went afterward, and so then it was onward to the future. Basically he referred me back to my physical therapist. If you’re sitting there thinking, wait, isn’t that who referred you to the Orthopedist? you would be correct. But nonetheless, he says he thinks I will be best served by core strengthening exercises in neutral positions.

For the record, I was doing those before the pain started… in any case, I’ve been doing the revamped version since I got it. And somehow the pain is still here. Not only that, it is shooting down my legs more often and today even went down my arm! How’s that for a new trick.

I asked my ortho dr. about my concerns – trouble I was having walking/limping, and etc. He said better (for me) to walk correctly than comfortably (i.e. try not to limp even if it feels better) and that he didn’t have many suggestions beyond that. He recommended craniosacral therapy, but didn’t know much about it and could not recommend any providers. He said the PT could (she did). Still, doesn’t instill a lot of faith when this is your recommendation. You really think this is going to help? Hmmm…

So today I was back to the physical therapist. Thinking we were in for new exercises or something. No, she said we’ve basically taught you all you need, just keep challenging yourself to do better every week. She had the name of a craniosacro…ligist? and gave that to me. She also mentioned that going to the pain clinic was a good option.

When I got home from my Ortho appointment last friday, I could see where this was going, and just about came undone. It is looming before me — I’ve been through it once and so I can see the similarities all too well. This is becoming A Problem No One Knows How to Fix. I guess it’s been that all along, I had just hit on a kind of a solution myself for 9 years and had the audacity to think that was it.

So although I am less than impressed with what I’ve read about craniosacral therapy, I do know the people at the pain clinic well and have hopes that they could help me there.

The UNDONE feeling is just…that I don’t want more pain. If there’s one thing I don’t need, it’s more pain. Another situation to deal with, another group of symptoms to monitor, and all the while more pain. Of course everything now has to interact with migraine meds and chronic migraine needs. I woke up this morning wanting to throw plates against a brick wall and scream. I didn’t….but I still kinda feel like it.