SCS Trial - Unplugged

My trial is over and I'm unplugged now. I'm a little surprised at how much the Stimulator helped. Some of my problems aren't painful but are annoying nonetheless. Muscle twitches are back and are more unnerving then having the stimulator turned up a little too high. The burning and stinging has returned and I'm back to walking on a river bed of rocks (tender foot).

The stimulator did not reach everything. The deep pain in my ankles was never touched. I talked it over with my Doctor and I have decided to move forward with the permanent placement. This is not to say that I'm doing hand stands right now. I wish I didn't have to go this route. I will never be drug free, at least that's how it was explained to me. What the SCS does is buy me time. I'm still relatively young and hoping I have a lot of miles left on me. The SCS will permit me to keep the doses at my current levels or maybe a little lower. If I opted not for the SCS, I will have to go on the extended release stuff. The problem with that solution is, it doesn't touch the burning/stinging and the tender feet.

SCS Trial - Day 2

I survived the first night. Had a little Princess and the Pea thing going on the morning (slept on the external unit). I did leave the stimulator on all night at a very low setting. My left leg was real good (no pain) this morning but my right leg hurts like the dickens (this might be because of the pea).

I shut off the lead for my right leg. I just couldn't deal with the stim in my butt. The left lead seems to have better placement because it only stimulates below the knee. This is my worst leg and I am getting some relief there. According to the video, its possible to adjust the pulse width and rate.

I met with the Rep in the afternoon where I was granted more control over my stimulation. The Rep also moved the stimulation to a different contact for the right lead. It seams I'm wired a little different then most folks and have to be stimulated a little lower than normal. With the afternoon and the evening to play with the stimulator some more, it's definitely much more rewarding when you get to adjust all 3 values and create your own programs so to speak. I have no way of saving my results. So far I have created 2 laying down settings and a walk setting.

SCS Trial

Got my trial Medtronic SCS this morning. So far it's providing a little relief. I'm taking it slow so I can get used to the feeling. I'm able to control the amplitude separately for each leg or together. I watched the video they gave me, so now I'm a little disappointed. I only have control over the amplitude and not the pulse width and rate. So far the stimulation is from my butt to my toes. I don't really like the stim in my butt right now. I will say, this thing is really positional, so if you go for a trial, be prepared for some tweaking as you change positions.

The lead placement this morning smarted a little, but I survived. Now my back feels like someone kicked the crap out of me.

Post-op Fusion, 2 year(s) - Hardware Removal, 1 Year 2 Months

I'm finally at the 2 year mark since my Fusion surgery. It's safe to say that the surgery was quite successful in that I have minimal amount of discomfort in my back. I still get flare-ups in the SI Joints but I never expected that problem to be corrected. In fact, I would say that the SI problem is a little worse but not by much. I finally have a diagnosis for my nerve issues, Arachnoiditis.

Arachnoiditis is a debilitating condition characterized by severe stinging and burning pain and neurologic problems. It is caused by an inflammation of the arachnoid lining—one of the 3 linings that surround the brain and spinal cord. This inflammation causes constant irritation, scarring, and binding of nerve roots and blood vessels.

The predominant symptom of arachnoiditis is chronic and persistent pain in the lower back, lower limbs or, in severe cases, throughout the entire body. Other symptoms may include:

• Tingling, numbness, or weakness in the legs
• Bizarre sensations such as insects crawling on the skin or water trickling down the leg
• Severe shooting pain (which some liken to an electric shock sensation)
• Muscle cramps, spasms, and uncontrollable twitching
• Bladder, bowel, and/or sexual dysfunction (don't have this symptom)
  

If the disease progresses, symptoms may become more severe or even permanent. This disorder can be very debilitating, as the pain is constant and intractable. Most people with arachnoiditis are unable to work and have significant disability. Thankfully, my condition is not severe enough to prevent me from working. I've tried numerous nerve medications (Lyrica, Neurontin, Cymbalta, Topamax, Sevella) on the market and unfortunately have discovered that I'm quite sensitive to these type of drugs.

I press on taking Oxycodone for the daily pain and Zanaflex to calm the muscle spasms to a low roar. I'm scheduled to have an SCS Trial in October.

Post-op Fusion, 1 year 10 months - Hardware Removal, 1 Year

It's been a year since my hardware removal. I learned some things about my surgery last year that was a little disconcerting in that I had a full revision done at the L4/L5 level. I guess its not that big of deal because my back is very stable. My nerve issues have somewhat worsened over the last 6 months. I had an EMG test earlier this year that indicates that I have significant nerve damage to the nerve roots exiting my spine. My PM Doctor is trying to be optimistic, but is now laying the ground work that this may be as good as I'm going to get. My right leg now causes me a moderate amount of discomfort.

• My ankle stings 24/7 with it being very minor in the morning and getting more severe by the end of the day.
  
• Still have some numbness in the big toe and a little bit of burning in that toe occasionally.
  
• Numbness and stinging on the top of the foot

My left leg just plain sucks to have. Its very frustrating, cause that leg exhibits all of the same symptoms that my right leg has but more extreme.

• From the arch forward, approximately 75% numb
  
• Numbness and stinging on the top of the foot
• Numbness deep inside the ankle
• The ankle gets very painful as the day progresses (about 6-8 on the pain scale)

As stated above, my PM Doctor wants to be optimistic that my nerves will get better. Today, he made the suggestion that I might have to consider going the route of a Spinal Cord Stimulator. My biggest problem is that I'm having difficulties taking the nerve prescriptions out there. They have adverse effects on my memory and mental state. It should also be noted that I hate having to take opiates to control the pain in my legs.

Post-op Fusion, 1 year 5 months - Hardware Removal, 6 months

It's been some time since my last update. Not much has really changed, or I should say that progress is measured very slowly. My right leg only causes me some minor discomfort.

• It gets a little achy in the evening.
  
• Still have some numbness in the big toe
• Numbness on the top of the foot
• Numbness deep inside the ankle

For the most part, I don't notice it after a while. My left leg is a different story. Its very frustrating, cause that leg exhibits a lot of the same symptoms that my right leg has but more extreme.

• From the arch forward, approximately 75% numb
  
• Numbness on the top of the foot
• Numbness deep inside the ankle
• This ankle gets very painful as the day progresses (about 4-6 on the pain scale)

My Doctor still seems optimistic that my nerves will resolve over time. I suspect the window of opportunity is starting to close now. I've tried several prescriptions out there but so far nothing has seemed to help. Lyrica helped a little but caused my ankles to tighten up so bad that its starts to become painful to walk. My most recent attempt was Cymbalta. I think it really was helping, unfortunately I had a case of undiagnosed BPH (enlarged prostate) when I first started taking the drug. Cymbalta is a Serotonin-norepinephrine reuptake inhibitors (SNRI) and is not recommended to be taken if you have BPH. Sometimes I think I'm dammed if I do and dammed if I don't. I'm back to my tried and true Oxycodone to provide me relief.

I don't want to sound like a complete whiner here, cause it should be noted that my back is doing great.

Post-op Fusion, 1 year - Hardware Removal, 2 months

The title says it all, as I have finally reached my 1 year anniversary. Basically my back is 85% better with bouts of SI Joint Dsynfunction and an achy back (I still have pretty severe arthritis that fusion does not address) sometimes. The SI problem is a little worse then prior to my surgeries, but is manageable. Since my hardware removal, my right leg is finally recovering. My right ankle is a little weak and very similar to the discomfort I felt when I hyper-extended all of the ligaments in that ankle many years ago due to a motorcycle accident. All in all, I believe my right leg will fully recover with the exception of some minor numbness. My left leg is a different story, where I have suffered some nerve damage that has resulted in daily pain in the left ankle and of course some numbness. The pain in my left leg is much less than what I endured in my back and legs prior to my surgery.

All in all, my surgery was a success. Its unfortunate that I exchanged one problem for another but it is a risk we all take when under going this type of procedure.

I hope anyone considering a fusion weighs the risks and realizes that after this surgery you can come out on the other side with new problems.