[TTurtles]

Hi Everyone, I am new here and have been looking for some info or just plain support for my drop foot.

I had major reconstructive back surgery Oct 16, 2009. L-3 to S1 at the UWMC. When I woke up from surgery I could no longer move my right foot. Oct 23, 2009 they went back in to move a screw over. Still couldnt move my foot. Oh and by the way those were my 5th & 6th back surgeries. Between the the 2 surgeries, my kidneys started failing and I bloated up, I was huge, they estimated I gained 20 pounds in just fluid, so much fluid that it was seeping out of an old scar on my leg. Then all of a of sudden the kidneys started working. I ended up in the hospital for 12 days. The medical community at the UW was wonderful, they fitted me with all the braces and gadgets that I would now need since I could no longer walk normally. I was loaded on tons of medications that I figured the Drop Foot wasnt gong to affect my life too much. They also set me up with a Bone Growth Stimulator to help with my fusion. The day after Thanksgiving my back became infected. Ended up back at the UW for another 8 days, they had to do a wash-out surgery. I came home with a PICC Line(Nafacilin) and also 2 oral antibiotics(Levaquin & Rifampin). Had the PICC Line taken out in mid January 2010. But still taking oral antibiotics. Started weaning down on the pain meds(10mg Oxycodone, top was 24 pills a day) at the end of Jan. 2010. As I weaned down, the more my Drop foot started hurting. It burns, stabs, pricks, contracts and spasms. My best definition is, if you imagine a downed live power line on the ground snapping all over, that is what is happening inside my foot.

I am down to just 20mgs of Oxy a day since March 2010. In July they finally started trying other meds. Also taking 2700mg of Neurotin a day, and 600 mg of Tegretol. My surgeon commented back in Feb 2010 why I was complaining about my foot hurting. Told him it had to be the reduction in pain meds since I did fine from Oct to Jan. He just looked at me. He had been holding off on doing anything until they knew my infection was gone. Stopped taking the antibiotics Oct 13th 2010. Have had clean blood work every month since then, which is great news. Because they were going to go back in and remove all the hardware they put in. My back feels great, best it has felt in the last 20 years.

Today my surgeons office called and suggested getting a neuro-stimulator implanted to control the pain in my foot. But I am not so sure. I wanted them to just completely sever the peroneal nerve to my foot.

Can anyone help me out, any advice??

[Rrae]

Welcome to NT!
I am so sorry to hear of this battle you've endured! You present a complex set of issues, however the good thing is - your back feels good after all the surgeries you've had.....and your kidneys are ok!

I looked up some info on drop foot to better help me understand what you are dealing with. This must be so very frustrating for you and my heart goes out to you!
I came across a 'device' that works with drop foot syndrome and wanted to first make sure this isn't perhaps being confused with the Spinal Cord Stimulator.....here is a quote from a website which explains this device....
__________________________________________________ _____________
Drop foot syndrome is often caused by a stroke or other neurological condition and it can make walking extremely difficult, but now a new device is getting feet back in action.

A neuro-prosthesis – the NESS L300 is an electrical stimulator designed to treat and correct drop foot syndrome.
"It feels like you're being shocked and you can feel the shocks going down your leg and then you can feel it controlling the muscles in your feet,”

But a wireless sensor in the heel of the shoe communicates with a cuff around the shin.

“It is actually stimulating the nerves in the muscles and the shin to be able to raise their foot up,” He also says that patient response is remarkable.

“We’ve had several patients done that have worked their way out of the unit,”

Especially in stroke patients it has brought about speedy recovery.

Some patients, especially people with brain or spinal cord injuries, may never recover using the device.

Bioness makes a similar stimulation device for the arm and hand.
__________________________________________________ ___________

Does this information sound familiar to you? The unit described above is not a SCS/Neurostimulator. I had never heard of this device until I just looked up the drop foot information.

But if your surgeon's office is recommending the SCS in the hopes of controlling the foot pain, then perhaps there is hope there. I would ask alot of questions though, for more clarity. I doubt that the SCS would be able to actually 'help' the drop foot, as the SCS usually doesn't address mechanical issues..... it would only help in covering over the pain IF the stimulation can be reached down to the foot. It is not a cure, so to speak.

I can certainly relate to the frustrations you are feeling, to the point of actually wanting to sever the peroneal nerve to the foot. This is similar to what I was considering out of desperation to my lower extremity burning pain in both legs. I wanted to get a sympathectomy and be done with it. Thank God my Dr talked me out of this, however, because it is a very drastic and final decision. And my Dr indicated that he's seen patients going to this extreem, only to end up having the pain return!.....sort of like the 'phantom limb' pain theory....and in this case there would be nothing left that could be done. There is no going back.

I would love to see you be able to get pain relief, even if the drop foot would still be in the picture. At least you could get some of your quality of life back.
Please stick around and let us know what your Dr has to say. I would love to be able to know more about the possibilities an SCS might have to offer you.

Truly Caring
Rae

[TTurtles]

Thanks for the info Rrae. Think my surgeon was just thinking on a way to relieve my pain, not so much making my foot work. I have come to terms with my foot never lifting up again. I did 6 months of intense PT. I have a great brace. Although finding shoes that fit and dont squeeze my foot has been a struggle. I am going to research the device you posted, tomorrow. It sounds similar to another device I saw on the net "WalkAide" but the it said "Contraindications
People presenting with the following peripheral nervous system conditions will NOT benefit from WalkAide:
Secondary complications of back, hip or knee surgery
Traumatic accidents to the leg
Sciatica
Peripheral neuropathy
Spinal stenosis
Post-polio syndrome
Guillain-Barre

So it wouldn't work for me. I just want my foot to be completely numb. Then I will be able to deal with my drop foot. Its so hard when every step you take hurts. My leg and foot also get super cold thru-out the day, if I am on it all day. By nite-time it is freezing and when I get in bed and it warms up, the nerves start firing, and it gets really painful,
hard to sleep

Thanks again, glad I found this site, need some support

Teri

[Mark56]

Hi Teri-

Starting with the sympathectomy, my wife and I talked at length with my physiatrist about the PAIN I had [in addition to being numb below the knees]. He looked us over and did explain that it was a drastic no return approach and would render me incapable of ambulating/walking. At least now, I can use my canes and if the distance is too far, the wheelchair.

So contrary to you, the nerve injury produced both pain and numbness, leaving it so I do not feel the ground. The cane is my sensory and support device. It is one of those "don't leave home without it" type things..... kinda like the remote control for my SCS. The SCS, as Rae explained cures nothing, but does mask the pain signals of the perpetual BURNING I was experiencing in my low back/upper legs; thus, the signal is felt through my buttocks, upper legs, and even down below the knees [believe it or not].

I hope and pray that your docs will find the solution to your personal needs, and soon!

Prayin,
Mark56z

[Rrae]

Hi Teri!
Hope you are feeling better today.....
I was thinking about your situation and heck, since your doctor is wanting to give this a 'go'..... it sure wouldn't hurt to do the trial. This will give you a good idea as to whether or not it is something you will want to pursue.

I'm not sure how far along you are in your discussions on the SCS. By now, you've probably seen that it is quite a process in getting one. One of the first criteria is getting a psychological evaluation. Has this been brought up yet? In most areas this is required as part of the insurance approval process. It in no way indicates that your doctor thinks you are 'mentally unstable' . We've all had to do this. I've seen a lot of people feel very intimidated by this requirement and that's why I wanted to mention it to you. It really is no big deal at all and maybe in your case, it wouldn't be necessary.

It would be wonderful if you could get the pain relief you so desperately are looking for. Like you said, every step you take is a stark reminder of this painful condition you are living with. At least you could have the chance of knowing if the SCS would prove successful in covering over that pain.
I hope you do go for the trial test. It usually lasts anywhere between 3-7 days.

And even if this drags on, we are always here for you to offer support. If you just need to vent, that's what we're here for.
The door is always open my friend....

Keep us posted!

[kemcancer]

Originally Posted by TTurtles

Thanks for the info Rrae. Think my surgeon was just thinking on a way to relieve my pain, not so much making my foot work. I have come to terms with my foot never lifting up again. I did 6 months of intense PT. I have a great brace. Although finding shoes that fit and dont squeeze my foot has been a struggle. I am going to research the device you posted, tomorrow. It sounds similar to another device I saw on the net "WalkAide" but the it said "Contraindications
People presenting with the following peripheral nervous system conditions will NOT benefit from WalkAide:
Secondary complications of back, hip or knee surgery
Traumatic accidents to the leg
Sciatica
Peripheral neuropathy
Spinal stenosis
Post-polio syndrome
Guillain-Barre

So it wouldn't work for me. I just want my foot to be completely numb. Then I will be able to deal with my drop foot. Its so hard when every step you take hurts. My leg and foot also get super cold thru-out the day, if I am on it all day. By nite-time it is freezing and when I get in bed and it warms up, the nerves start firing, and it gets really painful,
hard to sleep

Thanks again, glad I found this site, need some support

Teri

I am so glad that you posted this info. I just went to the walk aide website and was seriously buying the device. I did not see the contrindications,but I have peripheral neuropathy along with foot drop so I guess that I would not qualify for the device either.Also I have trouble putting shoes on my left foot do you have any tips or suggestion.I will be praying for you,thanks so much Karen

[shaypay20]

I have a bioness for sale.. pretty much brand new.. $2000.00

[CoralToe]

Hi Tturtles,

Wanted to chime in on your post. SCS can be extremely effective for nerve pain in the foot....as long as your doc has a system set up to do so. If you talk to most people with an SCS - they will tell you that their feet are not covered all that well; as issue due to how and where the stim is implanted. All of my issues were in my left foot - from swelling, and horrible lightening-type pain through my toe. My pain doc (fyi I am in the Seattle area too - which it sounds like you are) has developed a way to insert the SCS leads in a retrograde fashion, such that the electrodes sit over the nerve rootlet and block pain in your foot only. For me, depending on the program...I can get stimulation in only my forefoot; on the top; on the bottom; or my entire foot from ankle down. If you are interested send me a PM and we can chat more about this

[JavaJan]

Wow, Teri....sounds like you've been through a lot! Thank goodness the surgeries and other medical care helped with your back pain and kidney problems, but so sorry that you're having such nerve pain in your dropped foot. There are a lot of folks here with a wealth of information, so I'm sure you'll find some great input. I don't know much about your particular problem, but will be hoping and praying that you find a solution soon!

Take Care,
Jan

[L.T.]

Originally Posted by CoralToe

Hi Tturtles,

Wanted to chime in on your post. SCS can be extremely effective for nerve pain in the foot....as long as your doc has a system set up to do so. If you talk to most people with an SCS - they will tell you that their feet are not covered all that well; as issue due to how and where the stim is implanted. All of my issues were in my left foot - from swelling, and horrible lightening-type pain through my toe. My pain doc (fyi I am in the Seattle area too - which it sounds like you are) has developed a way to insert the SCS leads in a retrograde fashion, such that the electrodes sit over the nerve rootlet and block pain in your foot only. For me, depending on the program...I can get stimulation in only my forefoot; on the top; on the bottom; or my entire foot from ankle down. If you are interested send me a PM and we can chat more about this

Hi CoralToe,
I am new to this but i have questions for you about SCS. I have burning painful feet(probably idiopathic small fiber neuropathy). The SCS trial seems to help somewhat but I think I need the retrograde method that you talked about for under the feet. The SCS trial seems to be helping. I have had all the blood work done,tests,mri's,emg's and have been to many doctors for this pain. QSART test negative and i am hoping to have a skin biopsy in the next few months.
Thanks, L.T.