Hello All, Newbie Here with Muscle Pain after Stimulator Implant. Seeking your thoughts.

Darnme2000,

Just a quick note to welcome you to the board.... I'm sorry, though, that you are dealing w/ chronic pain. I don't have the stim unit - but there are a few people on here that do... and I'm sure they'll be along soon.

Again, welcome... and I look forward to getting to know you better. Take care --Tina

Hi Darnme, and welcome. I've had a stimulator for nearly six years now. I do get pain in my back, partly due to spread of the Complex Regional Pain Sydrome (for which mine was implanted) and partly due to deep scar tissue (or so my technician believes) causing irritation to the rest of the tissues through the area.

What do your doctor and/or tech say about it? Has anyone done a 'diagnostic' on the stim to make sure that it's functioning properly - that there's no current leakage or any accidental stimulation of your muscle there. Have you had an x-ray or scan to make sure the leads are intact?

I wouldn't go ahead without checking with your doctor or tech, just because I don't know exactly where your stim unit is or where your leads run and I don't want you to go out and risk shifting them, but I wonder if massage is an option for you?

Laura

Good morning Darn Me

I wanted to pop on and welcome you aboard. Glad you found us but sorry you are having all this pain. You will really enjoy the members here, many caring individuals who all share in some sort of chronic pain.

Hope you can find some answers to help relieve some of your pain.

keep posting with us and let us know how you are getting along.

Suzane

Hi Darn and welcome to the chronic pain forum. I am sorry that you have to be here but so glad that you found the forum.

It sounds like things are not going so well with the SCS unit. That seems to pretty much be the norm with so many people once they have the final implant done, sad to say. If you will use our search feature here at the forum and type in SCS units you will find a good deal of information concerning the SCS units. I wonder if it is normal to implant the leads so high up like they did in the thoracic area, have not heard of others having them that high up for the level of coverage needed in the low back. As far as your dr not doing much that is normal, those guys have no clue about the workings of the units and they rely on the reps to handle it. Seriously, the drs do not know that much about them, your rep should be your new best friend. Considering the length of time since surgery I would think things would be working better-some say as more time goes by it gets better. I really feel bad for you, we have seen this happen so often. Personally speaking, I think they need to do a lot more work on these units and fine tune them better than they are now so when the final implant is done they do what they are suppose to, as it is now that does not seem to be the thing happening for people and thats wrong. There is a lot of money made off of them and sometimes this drives drs more than anything, greed. We have a lady here at the forum that had one implanted and it has never worked from day one and her dr will not remove it. They say they can't remove them because too much scar tissue builds up around the unit. A real no win situation.

I am glad that you have been referred to pain mgt and that is a good move for you. He is trained to handle people that suffer with pain, that is his specialty. He should be able to help you in that department. I would sure give him the opportunity to see what he can do to give you some much needed relief.

Please take care and keep us posted on how you are doing....Susie

Thanks everyone for the Welcome. The unit does help some for my low back which is what it was intended to do. Not as much as I had hoped but am happy for any help. The thing it did the most was to reduce the burning and tingling sensation that radiates out from the L4-L5 incision towards my left hip area. The left hip area still has what seems like a deep aching pain to it and I still have pain that radiates down my legs to my feet but it has given minimal relief there also, some times more than other times.

What frustrates me the most is the newly created pain caused by the implant site of the probe.
Today I went to the PM Doc. Not sure how satisfied I am with him either. He works out of the same office as my Ortho doc. But today he seemed clueless as to why I was there until I refreshed his memory again that it was for the Neuro Stim implant site giving me the worse pain and not for my low back. I ask him to take Xrays and he did. We compared them to the ones taken 2 wks post op and didn't notice any difference in how they looked. If a problem is there though it could have been there from the get go and is undetectable. He increased my Oxycontin extended release to 20 mg every 12 hours, Renewed my Neurontin 600 mg 2x daily and told me to come back in 7 weeks. At that time if I'm showing no improvement he is going to send me to another PM doc to see if there is shots he can give me in my mid thoracic area. I don't like taking the Oxycontin but there isn't a quick release med I can take that would knock the pain down when I stand and have the sudden increases. So it appears keeping continuous pain relief meds in my system is the plan for now. One benefit of the Oxycontin is that it does somewhat help my hip area some.

I was surprised they implanted the probe as high as they did myself. I even asked Doc on one visit why. He said that is where the nerve bundles start separating that goes to the legs and they are totally separated by the time the reach the lower back and come out of the spinal column to go down the legs. It may also have something to do with the fact I have pain that runs down both legs so to cover both they had to put it higher. Where do most people have the probe implanted?

Susie, I agree with what you said in your post about some doctors and the cash flow it gives them. I honestly have a lot of respect for my doctor. I think the truly thought it would give me more relief and I don't begrudge him for the problems I'm having. The only problem I have with him now is the fact he didn't chase after finding out what is causing my new found pain. I honestly believe he doesn't have a clue. And that could go hand in had with them not knowing all they need to. I would think however he would have some knowledge of the cause of the muscles tightening and the pain level shooting up. Whether it be related to the actual implant or the surgical incisions they had to make in order to do the implant. I do hope in time there are more improvements.

One thing I have failed to mention in my other post is that I am type 2 diabetic and that may be part of the problems with the healing process and extended pain.

Kathy, One thing I have found that helps my hip pain for a little while is, I stand at the bottom of steps and place my left foot (my hip pain is on left) up on about the third step, Then I lean forward and I stretch the Hamstring for a count of 5 and then relax. I repeat that several times. I hold on to the stair rail to stabilize myself. Sometimes when I'm hurting a lot it really helps me to take the edge off the pain.

Susie, Like I said Dr. doesn't have a clue as to what is causing my current pain but he and Rep are both aware of my Type 2 Diabetes but it has not been mentioned as a factor in my heal process. I think it may not have been given consideration because I believe I was told 3 or 4 months to heal. I'm taking Metformin for the Diabetes. Once current Dr. gave me a steroid pack to see if that helped reduce inflammation and on the 3rd day it shot my blood sugar up to point vision burred on me and when I finally got to where I could check sugar levels it was 460 and that was about 30 minutes after blurring occurred. Needless to say I didn't finish the steroid pack and it took several days for levels to get back to normal, blurred vision cleared by next morning.

I'm not on a Muscle relaxer now but was on Soma for a while and it didn't seem to help. The Tightening of the muscles is not the norm in terms of spasms I am used too. I don't even recognize it as a spasm just a start tightening up and as it tightens the pain ramps up. It gets to the point is so tight it almost feels as though someone has put duct tape across the incision area, if that makes any sense to anyone. I have always considered muscle spasm as a real quick grabbing of the muscle and then somewhat fluttering feeling. Am I wrong or it there more than one type of spasm?

I had the pain going down the back of my legs and pain in the pads of my feet before and after original surgery on L4-L5. Pain down legs doesn't seem as bad now as it was prior to first surgery but was still present. Currently problems with feet are getting worse. I've started to have sore spots at the base of some of my toes. Foot Doctor concurred on the Neuropathy in the feet. I have been put in orthodics and diabetic shoes and still some days I have to use cane to get around because of sore spot in feet. The Neuropathy was there before I was diagnosed with diabetes. Diabetes may have had a factor in it but if it did was because I didn't know I had it. Neuropathy developed during time we were trying to take conservative approach to addressing the L4-L5 disc bulge that was causing the sciatica down back of both legs (left side was worst). Wasn't diagnosed Diabetic till a few years later.

I was conservatively treated for over a year before 1st Dr. finally decided to do surgery. I went thru 3 sets of spinal injections and 1 Sacroilliac injection (which was extremely painful in itself). I was even in a Thoracic Brace for the last 6 months prior to surgery trying to keep pressure off the disc by keeping the spine aligned. When wearing brace I did get some relief. I don't think it was until he saw how the bulge was impacting the spinal cord on a mylogram that he decided to do the surgery. In hind sight I think we waited too long before doing surgery. When Dr. came out of the operating room he told my wife there was more damage there than had showed up on the MRI's or Xray's and said he was glad he decided to do surgery. Said I also had Ankylosing Spondilitis and Degenerative Disc Disease. He's a highly respected Neurosurgeon in this area and I still have faith in him for his skills. In fact he is who I will probably go back to see for a second opinion if things don't calm in the coming months. I would have went back to him for followup treatment once things flared up again but insurance had changed by then. I still may bite the bullet and go to him again.

Present Dr. diagnosed this time as Failed back Syndrome. When requesting pre-approval for implant.
Initial back problems began in 2002. L4-L5 surgery in 2003.

Having quite a bit of Depression/Anxiety now over all this and seeking counseling for it. My memory fails me a lot of the time so I have to look back where I have things written down sometimes to give answer. You may have noticed I may seem confused about a answer at times. I keep a journal now and that helps. Sometimes I lose focus and may jump around on ya so bear with me. I have to read and re-read then write and re-write to send intelligent message... There is some humor at times with it though and I try to make light of things some times to stay in good spirits. Thank God for spell check.

Hey you,

I don't know anything about the SCS (other than what I've been educated here about)... so I told you that I can't help you there, lol. But I do want to give you a compliment. I like how you are new to the board - and already trying to support other people. That says a lot about you. Also, I think for as much as you are going through - you seem in pretty good spirits.... another quality that I admire. Ask anyone who knows me - and I often use laughter or my deranged sense of humor to get me through the tough times. I figure - I can laugh or cry, lol. Sometimes I do cry.... but I'd much rather be laughing!!

The point of all of that - I'm glad you joined us!

Just so you know.... MANY of us here suffer from depression/anxiety.... and many of us have memory issues - so no worries! I no longer go to counseling (simply for a lack of time....but I've spent many hours w/ my therapist, lol). But I would be a mess w/out my anti-depressant. It's as crucial to my well being as food and water (just ask my family and they will tell you!). I don't mean to make light of that.... because it can be really difficult at times and I'm the first one to find myself in a dark hole at times. But talking here about it helps.

All the other stuff - the SCS, diabetes, etc. - I won't even pretend to know about.... but I'm glad we have people on here that DO.... that's the great thing about our forum.

I hope you get some rest tonight, with as little pain as possible. And keep posting! I'm glad you are here. --Tina

Screaming Eagle, Thanks for the Welcome and the Tip. I tried it and it is very helpful. I still didn't see the original post I made. Know me I may not have submitted it after I wrote it.

RetiredMom, Thank you for the Welcome. I am already finding out I have landed in a very good forum with kind and understanding people.

Momto8kids/ Tina, I really appreciate the kind words. This has been a long rough road for me to travel the last 10 years. I have great respect and compassion for anyone going thru what each and every one of us are going thru.
Some of our Ailments may differ a lot but we all have a common problem and that is the pain we deal with daily.

I've always tried to keep a positive attitude that things will get better but finally broke down several months back when it hit me I can no longer do what I used too and more than likely will never be able again too. I still get on the Roller-coaster at times with my Depression/Anxiety and have ups and downs but I now recognize the need to accept where I am at this point and time and try to make the best of a bad situation. Some things I used to do I now have to figure out a different way of doing them and not give up trying. The point is to keep trying and having a good sense of humor is definitely a plus to be able to make light of a bad situation laugh at yourself really helps. I have several issues I haven't begin to talk about on here but in time probably will and may list them on the Signature at some point.

As for trying to help others, I think it is something each and every one of us should do. Not just on this forum but through out our life in general. If you have something to offer a stranger then offer it. You never know what they might offer back to you that you really needed and didn't even know it.

All of you have made me feel very Welcome. I look forward to getting to know you all and helping each other in the future.

Hi Snowbunny, Thank's for the Welcome to the forum.

Pain is actually doing pretty good for the moment. You all will probably think I'm all screwed up cause I just got up from sleeping about a half hour ago. But if some of you all are like me, my sleeping habits are very irregular anymore. When I take my meds they make me sleepy so I sleep a lot. And then I have a tendency to waste a lot of time sitting here on this computer and stay up later than I should because I'm not sleepy when I should be.

Hey, nuff about me this afternoon. How are you doing? Was looking at your signature and realized I'm going to have to learn what all these abbreviations are people use to describe what their ailments are.

Nice making your acquaintance.
I hope you and everyone else on the forum have a great day and weekend.

DarnMe, sleep is a big problem for a lot of us. I sleep when I can, I no longer have a real schedule with normal sleeping hours. My sleeping habits went south about three years ago. I usually lay down around 5-6 am and then awake & up by 9am the latest. I sometimes nod off while sitting here at the computer in the afternoon for a bit, lol.

I have to laugh and believe its one of our best medicines. I have learned how to do a lot of things a different way and hope for the best outcome, lol. The things I can no longer do, I figure there must be a good reason for me not to be doing them.

You mentioned acceptance, yes, that is one of the hardest things we have to deal with I think. Coming to peace with the new life is a hard thing to do and it does not come fast or easy. But, once we can make peace with it, life does get much better I think. It did for me, I stopped all the second guessing I was doing and I was able stay with one plan of action.

I have a 6 yr old grandson that keeps me busy. I spend as much time with him as I can. He is aware of some things I cannot do but we don't let that get in our way. He is into bowling and just loves it. I cannot bowl anymore so I go and be his cheerleader. He wears me out but I love it.

I hope you have a low pain week take care.