SCS Surgery - Recovery Question
 

First of all I want to say hello! I have been a lurker, reading posts and information about SCS and their use for RSD/CRPS. I have RSD/CRPS in the right side of my face, both hands, left arm and left leg (I think it is spreading to the right leg).

I had two St. Jude stimulators implanted at the end of June, cervical and thoracic. The cervical is great, but I am having issues with the thoracic one. It has migrated a bit and when it's on I feel a great deal of pressure on my lower back and I also get some shooting pains :( November 2 I am scheduled to have the leads on the thoracic stimulator replaced with paddle leads and they are also going to move the battery as it has caused a lot of discomfort where they first placed it (hip/buttock area).

To my question, I know everyone is different on this, but I am just curious about how others have done with these as far as time away from work. I had the first two put in at the same time and missed a week and a half of work. I think I should have stayed home a little longer. This time I am having one done (and the battery moved) and think I should go ahead and maybe take that extra week but I feel so guilty.

Thanks for your thoughts!
Nanc

Hi Nanc! I am interested to hear responses to this as I'm having my permanent implant coming up and I am someone who likes to get right back into things, but I don't want it to impact my recovery either. It can be hard to know how much time is enough, especially when life is waiting.

Good luck with your upcoming surgery, I hope it fixes things for you!

Hi Yellow!

Thanks and I wish you luck on your upcoming procedure as well!

Inapposite
 

But I will try nevertheless. I was not gainfully employed, but wanting to be..... that was my goal as I approached the healing of my T8/T9 implant of paddles for lumbar and leg pain. 30 June 2010 was the permanent implant date. I was continued on the pain management meds until early August of the same year, at which time I began the horrible process of withdrawal from pain meds..... all of them. Depression and anxiety set in October of that year, and was quite a hurdle. By January 2011, I was at last truly ready and working hard at locating work outside the home. Two weeks ago, I began to work at the position I secured in my profession. It feels absolutely GREAT to be needed and wanted again, practicing my profession and doing well by those who employ me.

Back to when I could have, would have been able to really go to work in my scenario- I call it January 2011, and I worked very hard at seeking employment, even starting up a group of similarly situated people so we could mutually assist in the "get a job" economy. The group grew to take in all of the churches of our area, and now all but one of us have employment, and the remainder is the favored candidate for a job that will open very very soon.

This example is maybe NOT what you wanted to hear or read, but it is life in my neck of the woods. Now as to the withdrawal from those pain management meds..... my pain management doc and surgeon agree I am kinda unique there, but I had a passion to get away from the chemicals, not knowing what they would do to me in the long run [I had been on them since April 2005].

Yup,
Mark56:)

Thanks for your input Mark56, appreciate it. Also, sorry for what you have had to go through.

I have so many allergies that I cannot tolerate majority of the pain meds, which is good and bad. Good that I will not become addicted and bad that I do not get any relief. After so many PM docs, I finally found one I like and these stimulators were a last resort...we tried pretty much everything! I do need the pain meds when the breakthrough pain gets unbearable (they only take the edge off), but I cannot take anything when I am working which makes for a very tough day!! It takes all I have to get through the workday.

Anyway, it has been a tough road and I have to keep believing it will get better...eventually!

Thanks for listening.
Nanc

Hello Nanc!
 

Glad you decided to start posting! This is such a wonderful forum.
I'm sorry about the ongoing problems you are faced with. It sounds as tho your medical team has a good plan in place and you are determined to make this work.

The fact that you've had this done before works in your favor because you know what to expect. I'm assuming you will have a laminectomy (removal of a small piece of bone) if they are going to put paddle leads. This is a more in-depth procedure which will certainly require more recovery time. Surely your employer will support you in this, as it IS a back surgery nonetheless! Pretty serious stuff....
You'd be setting yourself up for a more successful outcome, I believe, if you take some additional time off - less chance for complications.

I wish you the best! Please keep us updated. It's always amazing to me when someone has TWO units! Hopefully this will give you much more pain relief.

:hug: Rae :hug:

FionaB a good Twins Source!
 

While her pain is not face centered, she has twin units installed, and her posts would be good to view, and even sending her a Private Message would elicit help for you Nanc. She gets it. She cares. She is cool and helpful.

Prayin,
Mark56:grouphug:

Hi Nanc,

I have "the twins"...a lumbar SCS and a cervical SCS. For me, it took several weeks before I felt able to resume normal activities, but then I have other health issues to deal with.

I, too, have allergies to many meds. even pain meds. What I found works for me for pain is Dilaudid suppositories along with a Phenergren suppository. Phenergren is great for the nausea I get from Dilaudid. Not the greatest way to take meds. (have plastic gloves and KY jelly at the ready), but since they do not go into the gut and are absorbed through the rectal area, no allergic reactions for me. If you do try these meds. this route, make sure that you lay down for half an hour after taking them so they absorb into your system, as moving around or having a bowel movement will negate their effectiveness.

Good luck!!
Fiona

Hi Fiona!
 

Blessed to have you and the Twins chime in for Nanc. You are inspirational and a warrior to have among us sharing your walk with other twin prospectives!! Here is hope and prayer that life is well with you!

Prayin,
Mark56:hug:zzzzzz

Hi All! Thanks for all the kind words and tips.

Rrae – I have enjoyed reading this forum. I have found so much useful info in it. The dr and St. Jude said they would not have to remove any bone from my back, they said they can use the same path that they used for the other leads. My husband is great and my biggest supporter. He is the only one who truly sees the pain I am in every day and who knows what I am going through (to a point). Others just don’t get it; if they can’t see it then they don’t think it is there. So, work is tough in many respects. That is why it is nice to find a place where people do get it.

Fionab – thanks for the tips on the meds. I got to where I couldn’t tolerate Dilaudid, gives me terrible headaches. I take the nausea meds and then two Demerol, it still upsets my stomach! I felt that the pain meds never helped my pain much, they only make me sleepy. If they would take the edge off and help me fall asleep, I would be happy with that! Did you get “the twins” implanted at the same time?

Mark56 – as always, thank you too :)

Thanks again to all!
Nanc

Having a CS installed in my neck Nervous,Pls Help
 

Hello, My name is Albert
I had my neck broken and some damage to my spinal cord. Im fused at C1 to C3, C4 to C6 and C7 to T1. Then they opened up a space in my neck to free up a nerve that was being crushed. The Nerve had been crushed for over a year. I'm having server pain in my neck and down my right arm and hand, no feeling in the right hand at the ring and pinky fingers, you can poke it with a needle and I cant feel it. Will the Nerve come back? My Doctor recommend that I get a Cervical Stimulaor install. Does this device work? He stated that they would place wires into your neck and send shock waves into the spinal cord at the neck area. If it works he said that they would install the stimulator permently. Has anyone had this device implanted and does it help with pain?. What are the side effect if any? Please Help!!!
Albert

It does help manage pain
 

Alberto- A GREAT BIG WELCOME to a new inquirer! Ok, now that the greeting is out of the way, let's try to delve into your questions.

Firstly, Fiiona will be a GREAT help to respond to cervical issues when she chimes in, as she has two units, one in upper body.

Secondly, SCS technology is a potential marvelous help for managing pain with big emphasis on MANAGING. It is not a cure all. For some, pain meds still accompany the use of the SCS since for them it does not adequately cover the full scope of their pain. For me, I manage dealing with all of my pain with just the SCS and a seat cushion I use since it is a lower body trouble we address thusly.

Thirdly, SCS cures nothing.... again it is not a cure, but a system to help manage pain. This I say for your benefit because my nerves in the lower body were severely damaged in a 2005 car wreck, the surgeons I was first sent to see said "I cannot help you." We should have gotten all five together and they could have sung it in parts kinda like Barbershop Quartets, but then I digress, SO, I was injured in April 2005, and by January 2006 when my first big back surgery occurred, the nerve damage had become permanent. Emphasis on forever. Now, of course, I was given hope by my neurosurgeon and physiatrist who both said nerves can regenerate over time at the fantastic rate of 1 millimeter per day..... so they said "give it a year, and we will see if you notice improvement in the lower legs. NOPE. Numb. But, I can handle that if I have decent pain management which is surely the case with my Boston Scientific. I feel blessed. I use a cane to walk due to total lack of propreoception in the legs. I do not feel the ground.

So, Alberto, the answers are generally applicable to your situation as far as pain management goes, and those nerves..... well, as my doctors told me, just wait ans see whether they regenerate after we remove the problem causing the issues in the first place. That began in 2006. I am still waiting.:)

Blessings on you my friend,
Others will chime in with their experiences,
Prepare to be bombarded,
All the best,
Mark56:grouphug:

Hello Alberto!
 

I see you've started a new thread - I'll bombard you over there :D

It's great to have you

Rae
:grouphug:

Up and coming...
 

Hi All, I too have been lurking ( ok, just found this place yesterday and liked what I was seeing). I have had sciatica for the last 3.5 years, with the usual PT, lumbar injections (6), steroids (oral), 2 surgeries, etc... you know the drill.

Two days ago my dr. recommended the SCS. He called it the dorsal column stimulator, but I think it's the same thing. I will be going in for a consultation first on Dec 30. then hopefully I can get a trial started soon after that.

I have read a lot of the feedback on the NT site and it has really been helpful to me. I will continue on reading and maybe, with enough experience, be able to chime in as well.

Nanc good luck with everything!!

Take care everyone
Carol

WELCOME Carol!
 

It's great to have you!
Please stick around and let us know how your upcoming appt goes!
Yes, the SCS is called by several different names.

Welcome to the crew! We're a friendly (and a bit crazy :p)
bunch!

Rae
:grouphug:

Suffering after SCS surgery
 

I am new to NeuroTalk and posted this to the general site, then saw this series of threads. I had an SCS implanted at the recommendation of neurosurgeon due to severe hip pain which I was told was going caused by an entrapped nerve in my left hip. Surgery was May 2 which involved drilling the bone to get the spinal cord to implant the leads. Unfortunately the pain from that surgery has gotten worse over the past several months. It is mostly in my back where they drilled and goes into my left side/rib area. The pain has me in tears most days. Most days I cannot even make myself a simple meal or do simple household things or walk my dog. Surgeon said "we corrected one problem, but probably created a new one". Last treatment was facet joint injections at T10, 11 and 12 on Nov. 1. Was told facet joints are inflammed. The injections did not work. Now told by surgeon "pain is most likely permanent and hey at least we fixed your hip and there's nothing more we can do for you". I am desperate to find relief and get off pain meds. Am seeking second opinion. Has anyone experienced this after having an SCS implanted with drilling of bone in thoracic spine?

Concerned with you Suzanne
 

Hearing those words "Well hey, we did one thing, but that other thing, it may be permanent. The nerve will grow back at about a milimeter a day so give it a year." Such words were crushing to me when I learned the nerve pain and ancillary damage effects would be a forever thing in my life. I so feel for you.

Mine not being a HIP situation, I cannot speak specifically to the matter for you, but were I to learn such information from a neurosurgeon, I would next be back in front of my physiatrist to ask " are there options??" Why would I do this? Because the trust I have in my physiatrist/board certified pain management MD is tremendous. He tells me like it is. You have not mentioned a physiatrist in your situation, but maybe if you have a someone in that arena, you may visit with them for a second opinion.

You and I have shed tears of pain, and I am very concerned that you NOT be left with a hopeless and helpless perspective of life. Talk to a pain doc, that's my vote.

Prayin for ya,
Mark56:grouphug:

Hello Suzanne!
 

It's great to have you here!.....except I'm so sorry you are left in this pain :(
Mark certainly knows his stuff when it comes to surgeries and all types of pain. I agree that it is WAY unacceptable to be told what you have been told! :mad: oooo this angers me!
Definately go for another oppinion! You should not be left hanging in the brink like this, and made to believe that you'll be like this forever. This guy needs a swift kick in the britches!

How is your SCS working? It sounds like you've been given paddle leads via laminectomy. I'm just wondering if your leads are where they should be or if something has gone wrong with them. Do you think the SCS is the culprit for causing this increasing pain, or could it be something else? My first instinct would be to suspect that the lead(s) have somehow been compromised.

Hang in there, you will get answers. It just takes the right person to dig for clues.
Please keep us posted

Rae
:grouphug:

Hi Carol,
Welcome!! I am also a newbie. Signed it to get more information or helpful hints on the placement and surgery of the SCS. I already did the trial and I talk to the neurosurgeon on Monday December 12th for the date of the surgery. It seems we have all been through the same drill--injections, pills, therapy and on and on and on........ And after years of pain we end up with the SCS. I guess we can just keep reading others experience good or bad and take all the information with us when we see the doctor.
I have received alot of feedback--and a big THANK YOU to Mark and Rrae--you guys rock :D

Hi Nanc
 

Wondering how your Dr visit went today. Did he come up with any ideas regarding your thoracic?

Rae
:hug:

My visit was postponed until this afternoon, they lost power with the storm. Will let you know later. Fingers crossed!

Thanks for asking...

Nanc
:grouphug:

partial update
 

Well, I went to the dr and he thinks that this new pain down my right leg is muscular. He wants me to get an x-ray of my hip/pelvic area, but it was too late to get it when my appt was over so I will get it Monday morning. I go back to see him next Friday. He told me to try heat to see if it would help any since I cannot tolerate any anti-inflammatories.

He didn't think it was sciatica pain because it didn't go below my knee. I know I hurt like crazy after my examination :(

So, hopefully I will have a better idea of what is going on next week.

Thanks...Nanc

But Nanc!!
 

HEAT IS an inflammatory?!?! Why not cold? My physical therapist and doc do cold for inflammation....... They told me heat brings more blood flow to the sore spot........ but your doc is your doc, and knows you situation far better than I do.

Prayin for ya,
Mark56:grouphug:

Interesting point there, Mark56. I do remember when I had my shoulder surgery PT tried heat (not ice), but RSD had set in and I could not tolerate it. My dr was thinking heat would "loosen" the tightness...who knows though?

I guess I will see. Thanks for the info, definitely something to think about...

Nanc

Yep, ice is a no-go with RSD. Some doctors will say it's ok to use on non-RSD limbs, but generally it seems better and safer just to avoid it all together. If you do have tightness, heat should help. The physical therapists where I go say that heat and ice can be used interchangeably for pain, and it's up to you whichever you tolerate better- no one option is better. Except initially after an injury you should use ice... But anyway, I hope that your pain is just muscular, Nanc, and that it gets better soon! Make sure you rest it well! :hug:

update....saw the dr again...
 

So I had my visit yesterday with my dr and St Jude. The dr addressed the pressure in the left side of my back, that is increased by the SCS, and the new pain I am having on the right side and down my leg. The pelvic x-ray didn't show anything. He is going to try a medial branch block on the right side and radiofrequency ablation on the left side. He thinks the radiofrequency ablation would help me be able to use the SCS, the the extent I should be. First treatment is Jan 3.

The St Jude rep gave me some different programs on a completely different frequency that doesn't seem to increase the pressure, we will see how that does.

PM and family docs both want me to see the neurologist about the increased migraines.

Nanc