Hello all - new to forum
 

Hello everyone! I've been lurking for a week +, and decided to post about my pending SCS trial to take place 10/31 (18 days away)! I've had back pain for many years since I was a teen, and developed left leg pain approx. 7 years ago. Always have overdone more than I should -- lifting, moving, etc. Had a fusion (L4/L5) in June 2009 which worked OK for about 18 mo. or so, then all the pain quickly came back just as before. Have had numerous epidural steriod injections over the years, with three this year, to no avail (of course). Only had a day or two of relief per shot. This year's MRI shows scar tissue encasing the fusion site and below. So, now I'm thankful to be awaiting my trial. My days, for so long, have been a struggle to get to work -- concentrate during work, and get home to rest. I'm hoping and praying (family/friends too) that I will get a bit of relief and some of my life back. Everyone I see socially asks how my back is...so frustating to know that the back pain has become who I am.
I'm excited to read everyone's posts and the support that all of you share! :)

Hi and welcome! I know exactly what you mean about the pain defining you to others. It can be a sad and scary thing. I really hope that your trial goes well for you and you experience significant relief!! I also hope that the next 18 days go by quickly, it can be very hard to wait, I know. I just finished up my trial today so if there are any questions that I can answer for you, the experience is very fresh in my mind :) But there are also a lot of people here with a lot more knowledge than myself, and they are excellent resources- so you have come to the right place!!

Welcome Vivster!
 

It's great to have you!
I know what you mean about our 'issue' becoming our identity :rolleyes:
Not quite what we signed up for!
There's plenty of FAITH to go around here, that's for sure!

I'm excited for you that you are going to have the chance at possibly getting this device that could potentially give you a better quality of life, and allow you to be more comfortable at work.
When you got those injections, did you get temporary relief at least? If so, that's a good sign. It shows that those nerves 'want' to respond.

If you have any questions about your upcoming trial, don't hesitate to ask.
There's plenty to read here

Please stick around and keep us updated.
We're behind you all the way!

Rae
:grouphug:

Thank you for the welcome :)
 

Hi Yellow -- I've been glad to read your "journal" during the trial. Hopefully, I can try to get into work, to see how well the trial helps while sitting in my office chair. Work would be great if I could lay prone all day. ha :)
My one concern is being able to keep the hygene up to a tolerable level....lol I've thought of going in to a quickie hair place for a shampoo and dry. My trail is for ten days, which seems long, and I am concerned too of the need of help just to do stuff around the apartment. My oldest will help, and the youngest will, but not without letting me know how she feels about it. :rolleyes:
Thank you too Rrae :) I did have a day to so of relief from the injections. Those were three seperate wonderful days of relief! The nerves are being squished from DDD too. Another ? (question) Is there a possibility that we can hurt ourselves more, and not know it (because of the covering/disguising) of pain? Has that happened to anyone?
My dream is to be able to get up and ride a bike again - or even dance without pain! Dreams can come true :wink:

As for washing your hair, here's what I did. I had had a tunneled epidural catheter in for 6 weeks shortly before the trial, and I couldn't get my back wet during any of that time, so I came up with this idea then. I took a garbage bag every day and cut holes in the top and sides. Then I put my head and arms through the holes and I used waterproof tape to tape around them so water couldn't get in. I also wrapped a towel around my waist underneath as extra protection. I got in the shower with it and washed my hair. I never had a problem with water going down my back and it's a way to do it without having to bend your back. So that was just my experience :) Then outside of the shower, of course, I did sponge baths to keep my body clean.

Vivster!!!!!
 

You have ARRIVED! Welcome!! So, how about the idea of returning to activities known before SCS...... before PAIN?!? KZLRogue on this forum, just search her posts has resumed golfing and karate. She is an Army veteran and was very much into things physical before pain got the best of her. I have resumed bicycle riding and have resumed the practice of my profession. My wife and I have not taken to the dance floor much.... but we have taken a bit of a spin once [my legs are numb below the knees due to permanent nerve damage] and that was both special and a blessing. We will try again I am sure.

So, do I think I will resume alpine skiing, an activity I enjoyed for 35 years before injury? Nope, probably not.... Hiking and hunting as I did in wilderness areas.... probably not. Am I blessed nevertheless?? ABSOLUTELY!!

Thank you for arriving here and participating with us! We will wrap around you and support your forthcoming Trial. Prayers will come your way. Advice whether you want it or not [we do tend to tuck hints in here or there, like Rrae's ever present Grab Thingies, or dry shampoo, or BLAST [avoid bending, lifting, stretching or twisting during the Trial]...... you know, stuff which would be good to know, also, like don't drive during the Trial...... AND do ENJOY the relief SCS can produce if it is going to be right for you.... oh yeah.

Prayin here,
Mark56:grouphug:

Thanks for responses
 

:) Thank you Yelllow for the shampoo idea. ha - after using "dry" shampoo for a couple of days, my hair feels and looks worse that if I had left it alone (even tho it smells better).
Mark - I truly hope that I can ride a bicycle in the future. It would be nice for a change from walking.
My trial is 14 days away! I've only told a couple ladies in my office about the trial. They are more concerned about who is going to take care of my boss while I'm gone. I know everyone at work is tired of seeing me walk funny, or watch me use my grabber to get things. Oh well - gotta take care of myself! Thank you again for sharing your experiences :hug:

Counting Down!!!!
 

Go for it, Vivster!!!
:rocket: [well, at least there is a rocket smilie]
Mark56:cool:

Received pre-op call
 

Was happy today to receive my phone call from the surgery center. I'll need to get some "Hibiclens" soap this week for my last two showers. lol :D Now to continue to be patient. I'm enjoying reading everyone's past posts regarding their trial and especially about not -bending, lifting, twisting, etc.
Been reminding my youngest that I can not bend any longer to feed her kitten, and clean his box. I just can't do it anymore :( but, still live the little thing anyway.
I pray everyone here has a great eveningHave a great weekend!

Hi Vivster, I really would not recommend the dry shampoo at all. It made my hair feel worse than it did when it was grungy and it doesn't even work for my dogs. Also beware of the microwave hair wash stuff too, it was pretty yucky. I did talk to my stylist afterwards, of course, and he said I should have made an appt. He said they could have gotten my hair washed while supporting my neck and that they had done it before. I do have a lot of thick heavy hair, and really understand where you are coming from. I used body spray from Bath and Body to help keep it fresh, but my trial was only seven days. I did cheat and got into a low bath on about day 5 and sat on my feet to keep my dressing dry and that did feel good!

Here is to hoping that your trial will go well and that you will find significant relief.
Good Luck, Lisa

An 'Ah-HA' moment!
 

Gee Whiz! I never even thought of that! Getting a good hair wash from the salon! That is GENIOUS! Classy too!

Geeeze, i coulda had a V8.

All these talks in the past of how to keep hair clean. :rolleyes:

Well Huh!!
 

And I was going to come out as an advocate for dread locks as an alternative to washing..... you know, they provide environment for a lot of flying thingies and the crawly things every now and again, and in some circles they are the stylin deal. Who would not want an excellent excuse to have dirty hair all of the time? Just imagine all of the stylist fees and time it would save while avoiding the chemicals of the salons and all..... hey, if I get this out to Al Gore, do you suppose I might get a GREEN award or something like that???

Well, I think Yellow will be much better off lying back with head supported in a salon sink for treatment and the ahhhh of having clean hair. Besides, who would not want a V8?

Yup,
Mark56:grouphug:

Hello :)
 

Hi Vivster :)

Just reading your post is like reading some of mine!!! Im sorry you have been having such pain, but unfortunately, I know exactly what you mean. I too had fusions and they didnt do me the slightest bit of difference if anything I was worse afterwards. I too have plenty of scar tissue to be getting on with, which brings its own problems!!

I hope you have success with the trial. I did and I find it great for the pains that shoot down my legs. Its so relaxing it feels like a massage!.....unfortunately I cant get it high enough for my back problems but even what I have is a bonus. You will feel a different if it works for you. We will all be thinking of you and praying that it does!

Take care

Jackie :)

Hi Vivster. I hope that this goes really well for you, as we all do!

http://i297.photobucket.com/albums/m...rs-crossed.gif

May all be Well
 

Hi Vivster- Just writing to pray that all will be well with your Trial.
Mark56:grouphug:

Dry Shampoo
 

Just saw a segment on the TODAY last week that said the best way to use dry shampoo is at night when you go to bed. And, if you can pull it into a pony tail. Brush it in the am and the white will be gone and the oils absorbed. I've never been happy with dry shampoo but maybe using it at night might help. Haven't tried it yet but maybe it helps??
Sandy Kay

So many shampoo vibes...
 

Thank you Lisa, Rae, Jackiey, Marc, Joan, Yellow and Sandy -- I've got a smile reading everyone's posting :p Going 10 days without a good shower-shampoo is going to be a real struggle for me (and co-workers). I think the longest I went was six days, and I could have made dreds. Oh well, my boss will have to get used to a spritz of good smelling body spray, (she has allergies) ha
Today is - five days and counting to my trial. I do pray for relief! My family is ramping up and deciding who is going to do what while I'm not able to... BLAST. ?? Bend, lift____ twist (too many pain med today).
I'm so thankful for you folks who have been through this, and post your experience. The only people who can sincerely understand and support have already been there.
Blessings :hug:

Well said, Vivster
 

:Tip-Hat:
Moi:)

Hi Vivster
 

Hi Vivster,
I've been meaning to say hello over the last few days but today is the first day this week that I have switched on the laptop, I usually use my iPod.
Some of your posts are exactly like reading my own. You only have a few days to your Trial and please God you get some relief for a week. Did you say what type of SCS you're planning to get? Mine is a Medtronic one and unfortunately it's not working for me and has to come out but I am getting a different one.

The washing thing over the trial was a huge challenge for me too as I like to shower wash my hair everyday. I don't like that spray stuff for hair, my scalp got terribly itchy so it was pointless. I liked Yellow's idea of a rubbish bag and tape it up so no water gets it. I managed to knell down beside the bath tub on the outside and just barely bent my head over and my sister, my husband or my Mam washed my hair for me. For the other bits I knelt in the bath tub with just enough water and a sponge it did the trick. I did need some help to get out of the tub because I was petrified of slipping.

You only have a few days and I pray that it all goes well for you, you've nothing to worry about, the doctors and especially the nurses do their best to look after you and they think of the little things to make you as comfortable as possible.

The very best of luck and i'm sure you'll be back to let us know how you're getting on and oh yeah what type of SCS you'll be having if you would like to share that.

I too have some surgery coming up this weekend but I'll talk about that on another thread.

All the best,

Sophie :) :hug::hug:

Hi Sophie :)
 

You are so sweet to wish me well on the trial. I'm having a medtronic SCS. The programmer/representative has been so helpful, and gave me a couple of local ladies names and phone numbers who had the same trial with the the same doctor. The rep also met with me and my oldest daughter to go over any questions. I'm still concerned that the unit will be back "there" for ten days, and irritation/infection. Just some slight anxiety right now.....
I thought I would try small amount of water in the tub to splash on me as well. I could pretend that I'm camping (just without the campfire - or smores). I might try Yellow's idea with the trash bag, if I get enough courage up. :)

Good luck with the trial. A student nurse tried to wash my hair in the sink at the hospital but didn't rinse it properly and it drove me MAD. First thing I did when I got home was kneel on the floor with me head over the bath and get my daughter to do it with the shower attachment.

The baptiste dry stuff is just wrong! Again, itchy scalp.

I'm one of those who don't feel clean without washing my hair every day. It took me two days at home then I was in the shower. I didn't wasn't the stitched areas and I dabbed myself dry, but my doc said that was fine .. Just no long soaks in the bath till the stitches were out.

Am back in on 10th November for a pre op and to meet another Neuro surgeon who will be doing my paddle lead .. And hopefully, after that, it will only be a couple of weeks before my op.

Past .. I was swimming in the sea less than three weeks after the op.

Saffy my friend!
 

Hoping here your paddle goes well and soon!! Hair stays clean..... AND that you are able to swim the channel after all heals up!! How's that for a challenge?

Hoping all is going well with your Tootle,
My little white Zoom car is in the shop with a major meltdown..... :(
Prayin for your paddle,
Mark56:grouphug:

Remind me to tell you about the time I once used a pair of underwear to brew coffee in while camping. Mind you, this is years ago.......and the undies were clean. Hey, a coffee drinker will go to ANY means to get the brew if the coffee filters were left at home.

Mark, I'm so sorry about your car :(

But that underwear story cheered me up!!
 

You truly DO know how to put a funny spin on a camping story Rae!!!! I just don't have a thing to compare!!

The harmonic balance wheel on the front of the engine flew apart while at idle destroying the top of the engine. bent alll 16 valves, tore up the cover plate, killed the brand new timing belt, the head had to come off. Warranty will take care of all but a $100 bill and I get it back on Monday...... so Zoom I can go again.... hoping the engine holds together...... it is amazing how bad it was from an at idle running of the engine as it self destructed.

Wow,

Now, about that coffee...........:D:D:D:D:D:D:D:D:D
Mark56:grouphug:

So that's how mechanics keep their job security - install self-destructs in the engine. brilliant.

Yes, the coffee saga....I neglected to mention that we were up there near your neck of the woods in the high altitude - two grown adults hovering over a campfire with a pair of men's briefs and a pot, frantically trying to get it to BOIL.

Medtronic too!
 

Hi Vivster,

I have Medtronic so feel free to ask me anything, even PM me if you like. Unfortunately my Medtronic hasn't worked too well for me, especially the back pain but it has helped the left leg. I have the constant tingling buzzing sensation but I've gotten used to it now so that doesn't bother me. I charge up religiously every 4 days and it can take from 2 hours to 6 hours but it's mostly around the 5hrs, I find it quicker when I'm resting so it makes better contact. To charge the charger unit the bit you plug in doesn't take along at all, the technician said to just leave it plugged in all the time but I'm a fire-fighters daughter and I couldn't leave an unused anything plugged in for no logical reason.

I think I mentioned in my last post, I used knell in the bath with some water and a sponge, then I'd knell beside the bath bend my head slightly and someone would wash my hair. Even after I could shower I needed help drying off my legs and getting dressed for a few days, I also have one of those grabber things and they're fantastically helpful!

When did you say your date is for? It won't be long coming around!

Wishing you the very best hun

Sinéad :hug::hug::)

Grabby Thingies
 

Yep Viv, as Sinead says, those things are famous around here, and I think Rae got 30 or 40 of them on sale, so she might even be able to cut you a bulk deal!!

Now as for coffee at high altitude, it is pretty darn hard to get water to boil up there. Hope it was worth it and no one had to wear those things afterward :o)

Sinead!!!!!! Prayin for you kiddo, you know that!!
Mark56:grouphug::smileypray::smileypray::smileypra y::smileypray::smileypray::smileypray::smileypray: :smileypray::smileypray::smileypray::smileypray::s mileypray::smileypray::smileypray:

my pick-up stick(s)
 

Always get a smile reading posts (good one and difficult) :) Thanks Sinead for hair washing ideas. So many times I leave my feet/legs wet to air dry. :D Guess I could use my grabber to dry myself (?) The person who invented the grabbers was a smart person, who must have needed one themselves.
I would have enjoyed a cup of underwear coffee Rhae. I really need my beans in the morning. Mom used to boil water and let the grounds sit for a while and pour off. She called it okie coffee. (being an okie, I guess she knew) Marc - so glad your car will be back up and running soon!! So you can zoom again.
For me - waiting until Monday - 10/31. No trick or treating for me though. All good with maybe a few treats! :winky:

Ahhhhh, and Viv
 

We pray your 31 October brings to you a feeling of gratifying help, release from the monster of pain, a beginning on the long road to being YOU again! Prayers without ceasing,
Mark56:grouphug:

Thank you Mark :)
 

I found out Friday that my trial will be with a St. Jude model. I hadn't talked to my doctor for months, so I guess he uses either brand. I've gotten loaded up on groceries. Thank you for your prayers, it really means so much... I'll check in tomorrow before 630 :)

Sending you lots of prayers and good vibes for tomorrow, Vivster!!

That's right Vivster! We're behind ya all the way. :hug:
You are well prepared for this and I know you'll be just fine!

We'll certainly be anxious for an update!

:hug: Rae :hug:

Good luck for tomorrow
 

Hi Vivister,

Best of luck for your trial tomorrow, all will go well and after the first day or two you'll feel you can do more but don't just in case. Have you anyone at home to help you to do normal stuff, once I see something that has to done ill do it. I've even used my grabber thing to put clothes into our front loading washing machine, take it out again and with my foot move the basket along the floor, then sit at clothes horse and put them on to dry! Seriously I wouldn't know how to do nothing!

My turn for surgery on Tuesday unless I get cancelled again but I'm not budging from this hospital bed until they help me feel better.

Night night

Sinéad xxxx :)

Prayer for you Sinead
 

Hope you get rest :) Sinead. I too do things when I shouldn't, which explains why I'm in this place. Lol Thank you all again.

Wonderfully
 

Hi Viv- The big night, as it were!!! Tomorrow, here is prayer that all goes wonderfully!!

Yup,
Mark56:grouphug:

Hi Viv,

I hope today went well for you.

Chat soon

Sinéad xxxx :)

Hi Viv

Hope your doing well. First week is difficult. My friend was mad I didn't warn her.
Let family and friends help out. Sending a GENTLE HUG your way.
Sandy Kay