CHRONIC STIMULATION: Quick Hello...

Wednesday, July 29, 2009

Quick Hello...

I just wanted to type a quick hello to say I'm still around! DH and I are on vacation at his grand-parents' shore house and, until today, the internet here consisted of going into a corner of the house and..ahem...relying on neighbors (if you will). Not that I countenance that sort of thing. Fortunately, a wireless router was purchased and now..here I am! I'm hoping to update tomorrow but now it's time for sleepy!

7 comments:

mishl said...: Hi - just wanted to say thanks. Had my neuro stim (actually my 2nd as the 1st broke --grr) implanted 2 weeks ago. I have waaay been over doing it & think that is why today I feel major crappy and in lots of pain. I have the dreaded "failed back syndrome" --long boring story. Anyways, thanks for the reality check that at 2 weeks post op I am kinda supposed to be still not doing much (today cleaned house & went to mall for 2 h+ hrs -- dumb!). But again -- thank you and I hope you are doing well.; July 30, 2009 3:37 AM
Danimal said...: Hi Mishl! Thanks for visiting. I'm so sorry to hear that your first implant broke. And I hear you on the "dreaded" FBS..we can be FBS buddies.

Cleaning the house only after 2 weeks?! You naughty patient! I know it's difficult not to be able to move around but your body also did just go through a lot and it does need time to heal. Try to take it easy if you can..particularly since you've had problems with system breakage. Are you taking anything for the additional pain?

Also..what type of system do you have? Surgical leads and paddle or percutaneous leads? And what brand? (I'm always curious about this).

Well, I hope you start to feel better. It's a slow road but you'll get there!

Danimal; July 30, 2009 1:22 PM
mishl said...: Hi. Thanks for the reply. Its Medtronic. Surgical leads -- 1 the first time, this time there are 2. They also replaced the battery -- as it'd been 4.5 years they figured they may as well. mine is in my right hip.

They gave me oxycontin 5s (take 1-3 every 4 hrs) at discharge -- plus valium for the spasms. But at the 1 week check up he switched it to vicodin. WHICH IS NOT WORKING (sense any frustration there?) =) I have called now 2 days in a row, but the nurse (I think) thinks I am either a wimp or a drug addict. As I was taking a higher dose of pain meds pre-op, I am confused. If I don't get a call back by noon - I am calling my pain specialist, despite fact that will REALLY make me look "drug seeking".... anyways... I was curious, is vicodin post-op really "standard"? My scs is working great on my lower back & hip (where my pain lives) -- drops it 50% at least -- but its the upper back tunneling through the muscle part that is my current big problem....

This is long -- sorry. But it really is great to talk to someone who has been here/done this.

Thanks.; July 30, 2009 1:46 PM
rsmontani said...: Two Weeks is too soon! I didn't do much of anything for 8 weeks until after my surgery (and according to my wife, I don't do much anyway, LOL).

I was way too afraid of one of my lead getting pulled out of place.

Anyway, I have FBS too. The worst part for me is my back surgery worked, until my daughter pulled my arm when I was bent over. She was 4 at the time, and had my arm hanging down while I talked to her. She grabbed my arm and lifted her feet very quickly. I was only 10 months post surgery when I got my arm yanked. The rest is history.

She is 9 now, and I have never told her this story. I never will. I don't want her to have this over her head. She was only 4 years old.

I love my eon mini about as much as I can love a spinal cord stimulator. It works well.

I found out from the St. Jude rep that it is hackable with my remote. I am not brave enough to mess with the remote and try to hack into it myself.; July 30, 2009 8:12 PM
rsmontani said...: Hi Danimal

I had my 3 month anniversery(?) on 7/24/09. Everyting was going good till yesterday.

I really hurt my back for the first time in 3 months.

All it took was a deep twist of my waist and I knew that my pain would be back with a vengence.

I am ok if I don't move. That is a major improvement over how I used to be.

I have the stim set on high, and my legs are dancing by them selves. A high setting makes normal walking feel like walking in a swift running stream or maybe feels like trying to walk in a pool of waist high water.

I am majorly PO'ed at the situation, but seeing as I can not take this out on anyone or anything, I am just going to do some biofeedback and see if I can get to my endorphin induced happy place.

It seems that my stim can work well even if I hurt myself, but I am upset that I just can not do anything that I planned to do this weekend.

Why couldn't this wait until Monday so I could call off of work. LOL.; August 1, 2009 9:31 AM
Danimal said...: rs! First off, congrats on your 3 month anniversary! That's wonderful! But what in the heck did you do to your back to bring on such a nasty flare? What kind of twisting were you doing? Were you just turning around to look at something or were you bending over to pick something up? My fingers are crossed that you are feeling better today (and I'm bummed for you that you had to change your weekend plans. What a stinker!). I guess this is a good reminder for all of us that healing takes awhile and that it is ok (and probably wise) to even be overly-protective of our bodies as we go through the process. I had a pretty bad flare a few months back when I ran after Mr. B. I thought I'd be ok but..man was I wrong.

I completely understand you not wanting to tell your daughter about how you re-injured your back. That would be a lot for her to bear, given the fact that I'm sure she sees how much pain you're in.

Let me know how you're doing if you can!; August 6, 2009 7:54 PM
Stuart said...: Danimal,

Just wanted to know if you are still viewing and answering blogs on this site.

SR; May 6, 2010 7:33 AM

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About my Chronic Pain

My experience with chronic pain started a long time ago. I won't include all the sordid details, as I don't want to put you to sleep (although, given the fact that many CP patients can't sleep..maybe you would actually like that??). Anyway, here's a wee summary:

My pain started when I was 16 as a nagging twinge in my right hip. I saw an orthopedic guy (total jock..he was the team doctor for a local pro sports team). He diagnosed me with bursitis of the hip. I noticed, when I walked and put my hand over my hip, I could feel a little "pop" against my hand. The pain wasn't bad..it was manageable but it was there. However, it got a little worse when I was 17 and, by the time I was 18 and a freshman in college, I was having back pain which traveled down into my legs.

I went to a new orthopedic surgeon, a much better one, in fact. He ordered an MRI which showed a rupture at L4-5, congenital stenosis, facet syndrome, and disc dessication at L3-4 and L5-S1. I tried a number of conservative treatments (PT, ESIs) but had my first big surgery that summer (1998). I had a bi-lateral laminotomy and discectomy.

Unfortunately, the pain didn't resolve and, as time went on, I noticed more pain in the front of my legs. Another MRI showed that L3-4 had ruptured. At that point, I had the choice to fuse L4-5 and L3-4 or have the same surgery I had before, but on L3-4. I opted not to do the fusion and went with another bi-lateral discectomy (that was in 2001). I had 2 awful discograms right before I made that decision (but I guess all discograms are awful).

I'm glad I chose not to have the fusion, as the second discectomy didn't do much for the pain.

Following the second surgery, I was diagnosed with "Failed Back Syndrome" and significant epidural fibrosis. I underwent a smaller procedure called 'Lysis of Adhesions' but that didn't help much either. My scar tissue is obnoxiously tenacious.

That was a pretty dark period in my life. I'm sure you've been there. The crying spells...the listening to sad music..the not getting out of bed. It was directly tied to the fact that my pain was so out of control. I wasn't taking any pain meds at that point and was in college...but was missing classes and unable to go out and binge drink on the weekends (look, I went to a big Catholic school..what do you expect?!). It royally stank. But, I finally changed pain management doctors and that helped a lot. My new doctor decided to put me on long-term opiate therapy and things got better. She also gave me an anti-depressant for a year or so which helped to pull me out of that dark time.

Over the next couple of years, I tried Codeine, Vicodan, Oxycontin and Dilaudid (synthetic morphine). I ended up settling on MS Contin with Morphine Sulfate for break-through pain. I also tried a host of other non-narcotic meds including the ever-popular Neurontin (I think that one gave me memory problems but I can't recall for sure...har har).

In 2003, just prior to starting law school, my doctor switched me to Methadone (and MSIR for break-thru), because the MS Contin wasn't cutting it. She also put me on Nortriptyline for nerve pain. The Nortriptyline was a tremendous help. It took me 4 years and some seriously painful moments to complete law school, but I did. I had a lot of disability accommodations and was at an incredibly supportive institution..which helped to an enormous extent.

During law school, I had to switch to a new pain center, as my old pain doctor retired to only hospice care. I was lucky to find an amazing new pain center right near my house.

2 weeks before I sat for the bar examination (in February of 2008), my new pain doc. ordered an EKG for me (a number of the meds I was taking, including Methadone, can cause a rare but fatal heart problem..so my pain doc. wanted to ensure that I was ok with those meds). I had the EKG, thinking nothing of it, only to be told that I had the freaking heart problem!! It's called Prolonged QT Syndrome. I won't explain the specifics but, suffice it to say, the side effects are heart attack. Obviously, there was no fooling around with that one. Both Nortriptyline and Methadone can cause the problem but the Nortriptyline is known as a bigger culprit. So..off of that med. I came...in a very short amount of time. The whole process was a four letter word, particularly as I had to do it right before the bar examination. Luckily, once I was off the Nortriptyline, my EKG went back to normal (and I received a thank-you note from my heart).

I made it through the bar exam (16 hours in two days..the worst pain I've ever had. Much of the exam was taken on the floor, with a pillow). Anyway, I passed the exam..I have no idea how, but I did. When I got the letter that I passed, I stood on my doorstep and let my shoulders slacken into heaving sobs for about 10 minutes. It was an amazing, wonderful relief.

Since having to come off the Nortriptyline, however, my pain has been a great, hulking beast of a thing. Relentless and quite nasty, really. Much worse than before. Because of my experience with the QT Prolongation, certain meds. are now off limits to me. Quite frankly, however, the whole experience scared a little pee-pee out of me in terms of medication side-effects. I'm not as excited to try new meds. now.

So, my pain doctor suggested a referral to a larger pain center for a neurostimulator consult. I met with the doctor there and he thought it was a good idea so I had my first trial in August of 2008. I had a second trial in early November of 2008. I then switched to a neurosurgeon and ended up having the permanent implant put in on January 16, 2009.

And now, here I am, recovering and writing about it all...

So, there it is. Remember when I told you I wasn't going to bore you with all the gory details? Well, I lied.

Specifics about my Neurostimulator..

I have a neurostimulator made by Medtronic, Inc. It's the newest, thinnest model and is called the RestoreUltra. It has 16 electrodes and is rechargeable (which means it comes with external recharging equipment that I must use every one to two days as the battery depletes). I have 2 "specified" leads implanted with a connecting cable. The RestoreUltra is 2.1 inches in height, 2.1 inches in width and .4 inches in thickness.

I chose to have surgical leads placed as opposed to percutaneous leads, so I had a neurosurgeon perform my surgery.

I also chose to have my battery implanted in my lower abdomen as opposed to my lower back/buttock.

I have posted pictures of my battery placement and of all the equipment that comes with the RestoreUltra in the main portion of this blog.

Who are the People in this Blog?

To protect privacy, and because I'm a nervous lawyer-type, I use pseudonyms in this blog (I don't even know if that's the correct word..but you know what I mean). So here are the people I mention from time to time (or a lot of the time..).

DH- this is my Dear Husband or Damn Husband..(depends on how he's behaving). He thinks the whole "Dear Husband" thing is super corny and has snarks about it.

Mr. B- my adorable and yet sometimes unabashedly misbehaved black Labrador retriever. He is 4.5 years old. His real name is Brodie. I suppose he won't mind if you know that.

Blue- My Medtronic Representative. She's awesome. She has crazy blue eyes. She answers all of my emails within the day..usually within the hour...often within 20 minutes...sometimes even within 10 minutes. You get the idea. She's pretty darn cool.

Dr. R- The anesthesiologist who conducted my 2 trials. A good guy..a little brisk in manner but he knew what he was doing.

Dr. A- The neurosurgeon who ended up doing my permanent implant. I heart Dr. A. He's amazingly sensitive and an all around fantastic doctor.

Reading Therapy : Books for a Body in Pain

I am Currently Reading:

I have a serious fondness for books. This fact may seem as though it has little to do with chronic pain but, in regard to my chronic pain, it's really quite relevant. For me, escaping into a wonderful book is tantamount to really good therapy.

One of the greatest challenges for patients in chronic pain is cultivating the ability to forget. Why is this? Because, chronic pain is relentless. It offers a constant, visceral reminder- one we wish we could ignore but one we simply cannot. However, we can do things to distract ourselves and, over time, we can learn to forget, even if only for a few moments. Reading good books has helped me to forget for many, many moments. For this reason, the little cabinet next to my bed is never without a book and I never let too much time pass between visits to a book-store or library. I also never feel guilty about spending money on a book (but that's ok because I feel guilty about plenty of other things, which more than makes up for that).

So this will be the space where I list what I'm currently reading (and listening to, as I like to borrow books on cd from the library for the car). For fellow bibliophiles, I'd love to hear what good book you've discovered as of late!

I JUST FINISHED READING:
The Girl who Played with Fire by Stieg Larsson

I AM CURRENTLY READING:
The Little Book by Seldon Edwards

I AM CURRENTLY LISTENING TO:
Nothing at the moment!

CHRONIC STIMULATION

Wednesday, July 29, 2009

Quick Hello...

7 comments:

ABOUT ME

About my Chronic Pain

Specifics about my Neurostimulator..

Who are the People in this Blog?

Archive

Labels

Helpful Links

Reading Therapy : Books for a Body in Pain

I am Currently Reading:

What Gender are You?

How Old Are You?

What type of chronic pain do you suffer from?

How long have you been suffering with chronic pain?

What Traditional Therapies Have You Relied on to Manage your Pain?

Which Complimentary Therapies Have Helped you Manage your Pain?

Disclaimer

Followers

Google Calendar

CHRONIC STIMULATION

Wednesday, July 29, 2009

Quick Hello...

7 comments:

ABOUT ME

About my Chronic Pain

Specifics about my Neurostimulator..

Who are the People in this Blog?

Archive

Labels

Helpful Links

Reading Therapy : Books for a Body in Pain

I am Currently Reading:

What Gender are You?

How Old Are You?

What type of chronic pain do you suffer from?

How long have you been suffering with chronic pain?

What Traditional Therapies Have You Relied on to Manage your Pain?

Which Complimentary Therapies Have Helped you Manage your Pain?

Disclaimer

Subscribe To

Followers

Google Calendar