Spinal cord stimulator

[Big George]

Hello to All,

   I wanted to let everyone know I received a spinal cord stimulator, which is like a pacemaker, but sends signals down my spinal nerves to confuse the pain signals going to my brain. I had a temporary trial about 6 weeks ago, and I was able to move better, and reduce my pain medications by about 50%. I received the permanent device last  Tuesday, as an outpatient procedure. Dr. Tann Nichols, with our local Mayfield Neurosurgery group did a great job. I am limited by what I can do for 6 weeks, but I am feeling good, and am able to walk better and sit for long periods of time comfortably. My first night home was spent in my recliner, but after that, I was moving well. 

   I hope all of you are doing well, and have found great docs to help you in the trials and tribulations of OPLL!

All my good wishes for good health,

Big George

[D McCandless]

Congrats on your new hardware!

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[Brian Sherrod]

Hi George - I hope the stimulator helps with your pain and keeps it at bay for a long time. Keep us posted on how you do with it - who knows, it might be something I look into at some point in the future.

Stay healthy.

BrianS

[JAN MCKIM]

Hi Big G,

Sounds great!  Anything that will reduce pain by 50% is worth it.  How does the stimulator work and where is it implanted in your spine?  Is it operated by a remote device? 

I'm so glad that you're keeping in touch with other people with OPLL, and I hope that others will respond to let us know how they're doing and if they've tried anything new that's helpful.  I'm about the same after having a laminectomy and fusion of my cervical spine 10 yrs. ago.  Luckily, I don't need pain meds but I find that shoulder and back massages help release the tightness in those areas.  I place a Lidoderm patch on my low back at night but that's due to sciatic pain, not OPLL.

Has anyone tried Flector or Medrox patches?  Flector is an NSAID (Non-steroidal Anti-inflammatory) patch, and I think that Medrox is available over the counter.  I haven't tried either but they were recommended by someone I met in my pool therapy program.  By the way, I've found that doing my therapeutic pool exercises in a warm pool is a great way to strengthen my core, legs and arms. 

I hope to hear from others who are members of our little group, and I wish you all the best.

Cheers,

Jan

San Carlos, CA

[Nancy McInally]

I am glad the stimulator is helping you. I did the trial and it didn't help me enough to warrant having it implanted. I have so many spurs they had trouble keeping in one place during the trial. And I have a spinal deformity that causes my nerves to run in atypical paths. I had trials of both Medtronic and Boston Scientific. What brand did you get?

I am not doing very well. I have put off surgery as long as possible. My Cervical Stenosis has progressed. My left hand has lost function and my whole arm is weak. My left foot drop is increasing. Now my upper back pain has radiated to my right side also. I am having a 3 level ACDF with plate and screws June 23.

Take care,

Nancy

[JAN MCKIM]

Hi Nancy,

Wow!  You've been having a tough time with OPLL haven't you?  I saw this article in PubMed about surgical outcomes of the different surgical approaches for OPLL (anterior vs. posterior, and laminectomy + fusion, laminoplasty, etc.).  It's rather long but includes many studies of OPLL and risks of the different surgeries.  Have you had MRI and CT SCAN?  To check out the article, click on the following link:  http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4023010/

I hope that your surgery is successful and provides some relief from your symptoms.  I know it takes time to realize that surgery is necessary to prevent the OPLL from damaging the spinal cord.  Have you got support from family and friends?

Jan

San Carlos, CA

[Big George]

Nancy, I have so much spurring and fusion, my anesthesiologist pain control doc had a neck of a time placing the temporary stimulator. He could only get one lead placed, but floated it to give me coverage on both sides. Not only am I comfortable, but my leg muscles seem stronger. It is much easier standing from a sitting position.

[Pamela Brockus]

Hi Big George. I been doing ok with my OPLL. Pain as usual, but not too severe. It is good to hear you found something to help you have less pain and increased leg strength! I am curious about where exactly did they place the stimulator? Is it in your neck area, or somewhere else?

Nancy, I hope your surgery goes well, keep us updated on how you are doing.

Pam 

> Date: Tue, 10 Jun 2014 16:25:27 -0700
> From: emer...@fuse.net
> To: opll_di...@googlegroups.com
> Subject: Re: Spinal cord stimulator

>
> Nancy, I have so much spurring and fusion, my anesthesiologist pain control doc had a neck of a time placing the temporary stimulator. He could only get one lead placed, but floated it to give me coverage on both sides. Not only am I comfortable, but my leg muscles seem stronger. It is much easier standing from a sitting position.
>

[Kiwi]

Hi Big George

It's great to know there is something out there to relieve your pain and I hope it all goes even better than you anticipate!   Your positive approach to dealing with OPLL over time is pretty amazing and a shining example to us all and I'm sure your doctors appreciate working with someone like you :)     I had no idea such things as the stimulator existed and this group is very informative and supportive although some of you are struggling with so much pain and frustration.

Over the past couple of years I've managed to put OPLL to the back of my mind although I am getting slight tingling again in my left hand and a bit of tightness round the wrist from time to time so I fear the spurs are regrowing after the laminoplasty in late 2009  - but then again I can put this down to advancing years and seems most of my contemporaries have various aches and complaints as we reach our mid-late 60's!     I took a fall last week and that has jarred the body (including the replaced hip and knee!!) and the back is pretty stiff and painful at the moment but am sure that will pass - power of positive thought!   My yoga class yesterday stretched things out a bit but am sure it was good for me.

We just got home from a cruise to Alaska last month and are hoping to travel through  India for a month later in the year although my husband is fighting a post hip replacement infection at the moment so that trip hangs in the balance.   We are trying to do as much travel as we can while we are reasonably fit and able given that NZ is so far from anywhere.

Best wishes to you all and may you stay as pain free and mobile as possible for as long as possible.

Kia kaha (stay strong)

Kiwi Jane

[JAN MCKIM]

Hi Kiwi Jane and OPLL friends,

You are a wise woman, Kiwi Jane, for it sounds like you are proactively approaching life with a positive mindset.  Exercising, yoga, walking, pool therapy are some of the ways we seniors can keep active and healthy.  Also, traveling and seeing as much of the world as possible is smart because with time, any ailment can stop us in our tracks.  I had my laminectomy and fusion (C2 to T1) in 2004, and since then, I've been told that I needed shoulder surgery, knee surgery and foot surgery.  If I had had those surgeries, I would be a basket case today.  Luckily, I got 2nd opinions and discovered that cortisone shots, physical therapy, stretching exercises and better shoes resolved most of the pain and strengthened my muscles.  My husband and I both have our health problems but we're planning a trip through Europe this Sept., and some day we hope to make it to New Zealand.  Who knows, maybe we will be able to meet you in NZ.  ;-)

When I read that you were experiencing some tingling in your hand, I became concerned and hope that you will get that evaluated.  We all need to see our doctors if there's tingling anywhere because that could be a symptom of OPLL.  ;-/

Best Wishes to everyone.

Jan McKim

San Carlos, CA

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[Big George]

I forgot to mention, my stimulator is a Medtronic, and he went into my lower thoracic spine. The leads are about the middle of my thoracic spine. It feels like I'm sitting in a massage chair- subtle vibrations, but no pain. My right hip had been hurting, and I'm due to have it replaced in September.It was funny when I saw the ortho, he asked me if I had ankylosing spondylitis. I told him I was originally diagnosed with it, but my last neurosurgeon,he thought not. The ortho said I definitely had DISH, with the amount of osteoarthritis, and damage throughout my body. He could see my lumbar spine on the pelvis x-ray. When Dr.Nichols placed my stimulator, it was done under twilight anaesthesia.They awakened me to check the coverage of the leads. I can remember hearing the drill boring openings for the paddle leads- no pain, just a deep rasping noise.Just another twist in the road of life. I find it comforting to keep moving. It may get tiring, but a little rest, and keep the rust away.

Big George

[Pamela Brockus]

Big George, Some of my docs have thought I have DISH also. My hips have ossification in them too, along with most of my joints. I expect someday I will do hip replacements, but as the ortho dr's have figured out, I will probably just grow bony stuff around a hip replacement, so not going to do it till I can't take the pain in my hips no more. I have pain in my hips and thighs when I walk or stand very much. I'm not sure if my thighs hurt because of the hip ossifications or from the spine ossifications. I am very curious how you get along after the hip replacement in Sept. Please let us know how that goes when you have that done. I know there are others out there like you and me that have ossifications in joints, not just the spine. I am 54 years old, but feel like I'm in my 80's some days. 

Thanks for more info on the Medtronic stim. Good to know!

Pam

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Date: Thu, 12 Jun 2014 18:21:12 -0700

From: emer...@fuse.net
To: opll_di...@googlegroups.com
Subject: Re: Spinal cord stimulator