You are all helping me understand the full range of possibilities, realities, and need for clear continuous communication regarding the process and healing from SCS, and I THANK YOU! Waiting on my end for the go ahead scheduling call that means insurance and docs have cleared the way for my implant. Golfing? KZL, really? Wow, if you can overcome the surgical pain that would be just too cool. Gosh, if clearance to golf with its twisting swings can happen for you, well, really, it seems dancing with my wife or skiing for that matter might not be off the recovery road map.

Among my hopes, dreams, goals is dancing [skiing, well, I will leave that one for the docs to allow or restrict], reducing the opiates, returning from Never Never Land and resuming work if that is a reality. I have so much hope!! The lot of you help me find and touch it. It feels good.

Hugs all around,
Mark56

I was really surprised when she (my doc) said I could start golfing, too. I was anticipating not at all this year. From day one she was telling me she saw no reason why I could NOT do the things I did before.....maybe not to the extreme that I was doing it though. (My husband and I would golf anywhere from 36 to 45+ holes on some days and if it were the weekend, we'd get up and do it again the next day.) Now, I decided to have the paddle implanted so I could be more active. I'm not so certain she would have said I could if it were just the leads that were implanted. She is a firm believer in not letting pain control her patients lives so she really is a great supporter of helping you gain that control back. My advice to anyone looking for a surgeon is to find one who has the same ultimate goal as you do so you both are on the same page. She takes her time for all the questions and 'tweeking' sessions I need. She truly is a patient advocate which I think is rare these days to find in a doctor/surgeon.

One thing I do know is that I am so tired of letting this thing called pain take control of my life!! Obviously, I am not going to go and golf like a crazy women but dang it, I WILL start golfing again by the end of the summer!!!! Even if it is only 9 holes. I am ready to live again!! I am only 37 years old and have a lifetime ahead of me. I will NOT accept a life of pain and watching from the sidelines! I WILL participate and live a full life!! And God willing I will have all of you right beside me participating and making a full life for yourselves!

Hey KZL- I am so glad you have that clearance to go for the golf.... just don't overdo. Trouble I had post lumbar surgery was the temptation to overdo and it tended to take me down. Gosh, if you can golf, then I may be able to really get to the dance floor with my wife. I would love the other stuff too, like skiing, hiking, biking, but baby steps are OK with me. I want this to work!!

I, uh, tried saying essentially the same thing the other day, but it seemed to go into the nether never to be seen again. Maybe sun spots. But this message is essentially the same one as before.

Enjoy those rounds! Fore!
Mark56

hello Mark

the only way you can lose a post here is either if you time out (which can be avoided by checking "remember me" when you log in
or
if you did not click the submit button when trying to post. this sometimes happens if members use the Preview Post button and then forget to go further by clicking Submit

if any post is ever removed by a moderator, you would be PMd about it. No posts are ever totally deleted, and they have to be moved by the mods to the admin forum so we have a record there. There is no post by you there.

hope that may provide an answer to your mystery of a missing post.

I appreciate your post Chemar, and, maybe I goofed somehow. But I had about three posts this week which, when I clicked submit, went the way of my posts I guess, followed by the post will not appear until approved by a moderator message. Kind of a mystery, but I figure just one of those things. Anyway, I see my follow on post to this thread made it! Thank you all for helping make this a valuable and useful place for all of us folk.

Much thanks,
Mark56

kxlrogue-

yes - you are "way in" recovery mode.

This is my first reply to anything on any internet site-so am not certain about formatting, etiquette, etc. Been dealing with SCS for 5 years, and in addition to my strongest, strongest recommendation to have any scs implant done by a neurosurgeon who has this as the core or at least a focal part of his or her practice; I would suggest that you get acquainted with the manufacturer's rep, or whoever is the designated person from ANS, Medtronics, etc. who does programming of implants for users. For ANS, the person selling gear to the hospital/surgeon is that individual. My Rep is a young guy who has hung in with me thru a whole bunch of drama, and along with the surgeon who did the implant, is responsible for "giving me my life back, altho because of brain damage the seems to have come out of an initial implantation from a surgeon not meeting my 1st recommendation: so I should rephrase it "getting part of my life back". That however has nothing to do with the gear as far as I know.

My experience has been that as long as I feel stimulation and am getting any kind of relief, I am more than likely ok, and sometimes even when this is not the case.

1st, give your mind and body and spiritual person as much time and rest as possible. My son is a surgeon, not neuro, and he told me that healing at my age, circa 60, would take a year. After the initial healing period of 3 to 4 months, it took me a full year to catch on to just how to use the thing and to recognize when to ask Chad (the rep) for a tune-up. I've gone from a high of 175 mcg. fentanyl/48 hours and 24 mg of hydromorphone to 50 mcg. fentanyl and 20 mcg. of hydromorphone.

I have regained some thankfulness for life. I wince to write that, but for you folks who have lived with severe, intractable and crazy-making pain, I know you will understand.

I close with the above, and saying to all "may God's blessings, and the peace of Christ "which surpasses comprehension" be with you, upon you.

dougp

ps- I don't do any damn smilies!! Except low key cornbelt style :-)

Thank you Dougp for you input. Its good to hear someone who has the SCS for so long. Ive mine just 3 months now and like that I too have some relief. Your information is very good. I have a great Rep too who seems to 'get me' which is great. So plenty of tweaking sessions.

Its interesting that you should say to give yourself at least a year to heal. I suppose we wouldnt generally think that way. Especially if you get relief and feel you are getting 'back to yourself' within weeks or months.
Its a matter of taking it handy and slowly.

Jackie

I'm actually wondering .. my doctor said the stim would do nothing for my back pain only the leg pain? Yet some of you guys seems to be getting stimulation in the lower back too?

I have a program that does cover my lower back and legs.
However, even tho the electrodes can be programmed to cover the lower back area, doesn't necessarily mean it will alleviate the pain in lower back.
Depending on the source of the lower back pain (ie: disc degeneration vs. muscle pain)....
I find the stimulation to be quite soothing for muscle pain in that area, however, since I have degeneration issues going on in my lumbar spine, the stimulator doesn't really cover the type of pain that this generates since it is more of a 'bone pain' thing.
Sometimes the stimulation in the lower back actually irritates the pain.
It just kinda depends on what 'mood' my back is in on any given day

Hi Saffy

Yes some do and some dont. I dont get the relief I thought I would. I have Failed Back Syndrome, so after 5 operations nothing worked so the SCS was mentioned. But I also have burning, stabbing, tingling pains in my legs. So when I had the SCS implanted I said to my Dr that in order for me to get the pain relief in my back I have to turn the stim up really high and this sometimes is worse than the pain itself. He said to me that it 'generally' is very good with helping with the neuropathic pain in the legs but not always successful with the back So I was a bit disappointed. But having said that I do get great relief with my legs especially when Im lying down or sitting down. Unfortunately when Im walking I dont get as much relief...but that should be rectified Im sure in time once I have the reprogramming done and the actual leads are scarred in. Some say that could take up to a year for the scarring in. So I suppose its a waiting game and everyone is so different too. We all experience pain in different ways and have different feelings. So what works for some might not work for others and so on.

But its good to get as much information as you can and be educated about the whole process

Jackie