Spinal nerve stimulator implant

Leave it in the hands of the neurologists

My sweet Diamond.. Reading this brought tears to my eyes. I am 35 years old and feel that same desperation, depression and defeat.  You have a pretty complicated case. The most outstanding part of your post is your perseverance. Your persistence for wellness and knowledge. 

Few questions for you but first - you are welcome to inbox me. I will give you my personal info (as I would for any of our extraordinary, magical members here).

 - What was your injury?

 - How far and wide have you traveled/ sought help from a neurosurgeon/neurologist/spine doc?

 - Are you only seeing a P.M. and family phys currently?

*I have the St Jude DR Burst Neurostim but keep it on a "continuous mode" that constantly sends pulses/vibrations/shocks (similar to a vibrating massage chair) rather than "bursts" of these sensations. This mode isn't ideal always and forever considering it will run the battery down much quicker resulting in reopening the battery incision - however, frankly, my dear, I don't give a damn.   As everyone and all cases are different with different levels of pain relief or lack there of, in my circumstance, I am unable to carry a child with an implant turned on... in which case I wouldn't dare consider as I already have a 14 year old divine daughter and I wouldn't risk the increase in pain level by turning off the unit. It can be removed! These units aren't permanent - although that is the intent - so don't be afraid to accept the offer if/when/already given by doc. 

*They can hurt. Possibilities when operating and implanting such units are endless. My unit was a savior at first. My nerve pain in my legs decreased by prob 80%... Unfortunately, my body quickly became p****d off and picked up new and more intense/confusing/frightening pains. I robbed Peter to pay Paul. Traded one evil for another (as it seems currently). Persistence and a damn good relationship with my neurosurgeon (like calling his team every damn day) has been the major factors to keep from removing the implant. 

*Currently I face debilitating pain in my L5-S1 as they have newly prolapsed and compressed. So another surgery is imperative and the stimulator just can't handle that level of pain. It also is designed to handle more nerve pain - in which it does help the burning, lava rushes followed with ice cold rushed down my legs; needles wherever they feel like showing up but always shooting out of my feet arches; hot fire poker jabbing into my SI Joint then out my groin area; muscle spasms that look like "charley horses" in my shin; right foot contracting inwards; huge boulders crushing my lumbar spine/back or someone pushing down on my head to crush the discs...etc. Sound familiar?

*YOU should, without any hesitation or doubt, refer to a NEUROSURGEON. Immediately. Tomorrow. MORNING.

*You should have no incontinence nor bladder issues. 

*I would  be imobile and I would be suicidal without high level/ pain med regimen PLUS the stimulator: Morphine XR 15mg x2, Percocet 10 mg x2, Ultracet x2, Neurontin x4 daily. I have managed 4 back surgeries in 20 months creating a s**t-ton of scar tissue - and that s**t is painful. 

*You have the right to call this "procedure" a full on surgery... most of us need a laminectomy, paddle in the dorsal spinal column, inserting 28 wires (called leads) and 2 incisions. Mine took roughly 45 minutes. I was able to go home post op - 4 hrs. I did NOTHING as directed being I am "woman hear me roar" for 2 full weeks. 

*I have had my unit reprogrammed 3 times in effort to find relief. Some never have it reprogrammed finding relief on the first program. Some never find relief. 

*My battery burns sometimes. Located in my back lower left side and in little fatty area, it bulges most  uncomfortably. Take great care of your incision/wound as my battery incision popped 2 stitches creating an opening susceptible to infection. Picking up an infection can lead to the starting over.

Diamond, my greatest advice without further info of your story is to FIND ANOTHER DOC. Find about 2-3 new doctors if needed. They certainly aren't gods - although they may believe so - but your life at 30 needs a physician willing to join your army, fight in your corner. It breaks my heart to read how in depth/seriousness of your health situation without a team of fighting docs. 

Please respond with anything. I am willing to give you any info, doc's email, advice and prayers. 

Ellebe

Find a neurosurgeon or top notch pain management physician. Research them to find the best in your area. My PM will sit and answer any and all questions. They are so important to your team. Good luck . It took me several years to find the right Dr. I'm 55 and didn't want to go for a triple fusion. The Medtronic spinal cord stimulator implant trial is doing very well at this time.

I was always taught that important neurological complications such as bowel/bladder problems, foot drop were emergencies and that the patient needed to be seen immediately by a surgeon lest these nerve issues became permanent. So, I am having a hard time understanding why your doc sat on these issues for so long?  Nerves do regenerate, but you need to get what's pressing on them off.  You really do need a consult with a neurosurgeon ASAP.  Nobody your age should be considering a lifetime of catheterizing themselves....omg...

After you recover from surgery, if you still have pain issues, a spinal cord stimulator can be a good choice to get you off medication so you could get pregnant and carry the child.  I read an excellent study in which that is just what they did, placed the SCS, weaned the patient off all her drugs, she got pregnant and she used the SCS throughout the entire pregnancy, labor and delivery with no ill effects.

Diamond, I found this FB group that may can help give some advice, too..