Spinal Cord Stimulator Trial

The spinal cord stimulator trial. So glad it’s over

I have some reflecting to do about our week of stimulator trial hell. Sorry for the repost, but the other one got lost on my end.

What a miserable week for Nick, dealing with the two wires piercing through his skin, the giant box taped to his back, the screwy programming of the actual unit, and the realization that it isn’t the saving grace we have been imagining for the last year.

We spent an entire year building up to this. We got a first opinion. We got a second opinion. We got a THIRD opinion. We’ve had many appointments just discussing the stimulator, have talked to other patients, manufacturer reps, and done lots of reading on the internet.

The results are disappointing, yet somewhat intriguing. It produced a pleasant sensation, just not where he needed it. Our experience with this damn thing kept us guessing all week, and ended with Nick yanking it out himself because the surgical site was getting infected.

The jury is still out about whether he will get it permanently installed or not. It helped a little to distract his brain from the phantom and nerve pain, but it didn’t actually help with the pain because he couldn’t feel it where he needs it: in his butt, hamstrings, and especially his feet (you know, the feet that aren’t there, but still haunt him daily). A week later, he still can’t decide if that mildly pleasant sensation and half-assed pain diversion is worth going through with having the surgery and getting the device permanently implanted. The surgery involves general anesthesia and a partial lamenectomy to remove bits of his spine to make room for it. Ugh, another fucking surgery.

In the meantime, his phantom pains are OUT OF CONTROL again, particularly at night. He’s sleeping like shit unless he takes pain medicine, and some nights that doesn’t even help. A sleepless Nick = a grumpy, irritated Nick. Thankfully the last few nights he has taken enough medicine to sleep soundly through the night, and put his cheapy vibrating TENS unit on his stumps prior to falling asleep to help distract him.

To me, him taking an extra pain med at night is worth it to assure he is rested and energized the next day. For him, he’s trying to take as little pain medication as possible with the hopes of getting off it all together some day. And that was the point of the spinal cord stimulator, but it’s clear the stimulator can’t replace good ol’ oxycontin for an injury as severe as Nick’s. A bummer for so many reasons.

Double whammy pain

Nerve pain is a serious problem for people with spinal cord damage. Phantom pain is a serious problem for amputees. Nick’s got both.

Today is day 4 of a super gnarly phantom sensation onslaught. Constant, day and night, no letting up, his left foot has been giving him intense and often unbearable sensations of pins and needles. Constant. But this evening he had about an hour without them, for the first time in four days, so we are just hoping this is a move in the right direction. Finally.

It’s odd, most people with spinal cord injuries experience a lot of pain. This is the exact opposite of what most people would think. No feeling, no pain, right? Wrong! It’s a really fucked up situation because I think most people feel like they could deal with the aftermath of their injury so much better if they weren’t in so much pain all the time. I know that’s how Nick and several of his friends feel.

And I know most amputees get that way without receiving a nerve block 24 hours before losing their limb(s). Nick and I didn’t learn about that option that has been proven to prevent phantom pain until months later. How awesome is that? All this pointless suffering caused by the feet he no longer has could have been prevented!

Pain. That’s the life of an injured man, I guess. But it still fucking sucks.

Wednesday May 30, 2012

Last night a friend brought over a piece of cloth called Farabloc that was specifically designed to treat phantom limb pain. He’s been wrapping his left stump with it as much as possible all day.

This morning we spent 45 minutes using touch therapy on his stumps. I brushed them with a bristle brush, iced them, poked them, and rubbed them with a towel. We used to do this last summer, but stopped. An email yesterday reminded me that this is a good method to retrain his brain that his legs stop at the stumps; that his feet aren’t there.

Prior to his Project Walk session today, we booked Nick a last-minute Acupuncture appointment with a traditional Chinese doctor. He’s seeing her again tomorrow too.

He did a 30 minute guided meditation specifically for phantom pain on the way down to Carlsbad in the car. He’s been doing this twice a day for the last week, along with specific affirmations throughout the day.

Oh, and he’s been wearing his electrical pulse thingy (TENS unit) on his leg almost all day long for the last few weeks.

After Project Walk, our 90 minute drive home was painfully silent. Nothing is working.

Tonight we have already spent four hours separately researching various options to try next. I’ve made an appointment request to see a therapist who specializes in coping with trauma and chronic pain, and uses hypnotherapy as one of the tools to help her clients. I’ve also requested an appointment with a therapist who specializes in a technique called Biofeedback. This procedure helps to reassociate brainwaves… or something like that.

I’m pooped. Emotionally exhausted. Tired of what this phantom pain is doing to our lives.

To those who have reached out to help us: Thank You!!

Tuesday May 29, 2012

These phantom pains are infuriating.

Hey, do us a favor. If you know someone facing an amputation, have them do research on getting a nerve block prior to the operation. We’ve read that having a nerve block for 72 hours before the amputation can greatly improve that persons chances of not having severe phantom pains. Please share this info if the situation ever arises in your life.

…because phantom pain fucking sucks!

Friday May 25, 2012 – phantom pain

On the quest to crush Nicks phantom pains. They’ve been so bad lately that Nick has expressed he can’t live this way much longer. It doesn’t help that most of the research he’s done says the pains never go away, especially if they are still present six months post-op.

So, we will sit still no longer. There must be a solution, and it most likely lies within Nick. Phantom pains are basically a perception of the brain. If Nick can change his brain and the way it perceives the signals it’s receiving from his stumps, then we believe he can beat this.

Having that belief is half the battle.

Wednesday morning he saw a world renowned psychotherapist in La Jolla who specializes in hypnotherapy techniques and energy healing. I won’t mention how much that cost.

Nick had a strange experience and left with a recording of the session, a book, two audio guided meditations, and a host of daily homework assignments to release the pain. I believe he has been armed with some powerful tools to begin the process of rewiring the way his brain works after the trauma. For few hours after his session he said he felt like he was floating.

Today he saw a shaman, and I got the chance to sit in on his session. We didn’t know what to expect, so we weren’t technically “let down,” but it isn’t something he’s likely to run out and do again. She had some important messages for him, but nothing new or earth shattering.

The most important thing she told Nick was to give thanks for each pain-free moment he is consciously aware of. He says he’s been doing this, but a friendly reminder sure doesn’t hurt.

Next step will be to continue the homework and daily affirmations, and seek a skilled acupuncturist who has experience with phantom pains. Apparently there is research about needling specific points on the ear to produce results.

We’ve also got a reiki master in our arsenal who comes highly recommended. Will be seeing her as soon as she gets back from vacation.

Everything is going so great right now except for the excruciating pain. We must find relief for him. He just can’t take it anymore!

Wednesday April 25, 2011

Dude!  Nick had the biggest breakthrough today – it brought me to tears.

He took 36 steps with only one crutch! He was walking with one crutch!

!!!!!

Seeing him walk while only relying on one crutch gave me the crisp visual of a Nick Fener with no crutches. It’s coming soon. I can feel it.

The elation of a mega breakthrough was quickly muffled by another phantom pain attack. In fact, it’s after midnight, and he’s still being attacked. He’s quietly battling it as I type, trying to “make it go away.” Knowing he’s in such excruciating pain is one of the most sickening and helpless feelings ever.

What a roller coaster of a day.

 

 

5am

Wide awake at 5am as Nick finally decides to get out of bed and walk around.
We’ve been awake for hours because of intense phantom pain.
Burning, electrocuting, cramping, shocking, completely intolerable pain on a part of his body that’s not even there.

He has no feet!!

I can not describe the frustration and bewilderment we’ve been experiencing because of this. Poor Nick.
I don’t say that often, but when he has these random attacks I feel terrible for him. I hurt for him. It’s just like being attacked. A mental mugging leaving him emotionally battered and physically exhausted. His body wretches and tightens with every pulsing pain, making it harder and harder to relax or fall back asleep. The longer it goes on, the more the intensity compounds.
It’s a dirty, dirty trick that we refuse to see the good in.