And while I'm all for exposing one's bottom to a room full of strangers, I'm happy to avoid doing so if it also means I can continue to avoid any circumstance requiring a revision surgery (just a note to those of you going in for surgery at any point in the near future: your naked bottom will not be exposed. A motherly nurse will take the time to drape and cover your bits-n-pieces and no untoward remarks will be made. I hope.).I digress. In honor of my 1-year stimulator anniversary, my husband bought me a wee present (which can be aptly described as stimulating). I suppose I could insert a sexual innuendo about stimulation here, but I won't debase myself (I leave that for Friday nights). Anyway, DH bought me (drum-roll...) a Keurig coffee maker. I don't know what it is about this wacky little pod machine that makes me so happy. I feel like my very own Barrista...except with a less chipper attitude and a frumpier hair-style.
So after having lived with my stimulator for a year, I've noticed the two questions I'm most frequently asked are: 1) is it working/does it help? and 2) are you happy you had the surgery?The answer to both questions is yes. However, I think it's important for me to point out that my version of the answer to "is it working?" is likely to be different than another patient's. This is simply because every patient has different expectations. I didn't go into this thing thinking that it would cure my pain (I didn't even hope). It hasn't "cured" my pain and that's ok because I didn't expect it to. But it does help and it helps enough. Of course, it's extremely difficult to quantify just how much it's helping but, if I were forced to give an answer, I'd say on very good days, it alleviates about 40% of my pain. But those days are rare. On most days, I'd say it helps with about 30%. On bad "flare" days, it seems to be a lot less.
Even though it hasn't eliminated my pain, I'm nonetheless very glad I decided to go forward with the implant. A 30-40% reduction in pain was worth it to me. For another patient, that number may not be enough given the attendant risks. It's a very personal, patient-specific decision.
Before I sign off, I wanted to send a virtual hug (I know, I'm cheesy) to reader Lizi, who just had her revision surgery on Feb. 3rd. I hope you are healing well, my dear (not only am I cheesy but I guess I am now morphing into someone's nana). Also, Mr. B thought this picture of himself as a bitty puppy would cheer you up and help you in your recovery...
Posts
47 comments:
Thanks for the information.
Happy 1 year anniversary! I will soon hit 8 months. I totally agree with the 2 most common questions and would also add, "What does it feel like?" For me it has made a great difference in my life. If I look back at what I could/could not do a year ago the improvement is dramatic. It was worth it for me, too.
Happiest 1 year anniversary - so good to read a success story - and thanx so much for your hug Danimal - much appreciated!
Sadly I have NOT had the revision surgery!
I turned up to the Perioperative Unit of the hospital with my loved one, fasting - and we waited 3 hours and they did all the admission stuff - then my PMS, the big man himself, appeared all gowned up to tell me they had to cancel the surgery as the hospital didn't have a bed for me!
This is the price you pay for being a public patient in Australia - you are at the whim of budget cuts and finances.
I am now scheduled for surgery on 3rd March and will return to work til then. We are devastated.
Still - at least they're still going ahead with it and at least now part of my recovery time will be school holidays and not out of my leave.
Anyway, enough of my troubles - all the best, Danimal for a wonderful anniversary - enjoy!!!
Congrats Danimal! I hope you are doing well. It's nice to be able to relate to you and others with chronic pain. I too feel that I'm getting some help with my SCS, maybe 30% at most. With that and meds, I do manage each day. And as we all know, some days are just plain nasty and we have to just get through it using all the "tools" we have. Thanks for sharing your wisdom. I think you should grab a cupcake to go with your coffee from that fancy coffee maker!
Limojay
Happy Anniversary Danimal. Thanks for all of your posts and responses. They have been very helpful in helping me make my decision. I hope that 2010 is great for you and selfishly hope that you continue with this blog!
I have just been pointed to your blog and although I've not read all of it as yet, I am so pleased for you .. and so grateful for the time and effort you have put into this.
Too long a story but failed back surgery has left me not able to work .. they don't want me back till I can do the job (I'd need a medical before returning, which I know I wouldn't pass at this moment) .. I have bi lateral facet joint overgrowth which is also giving sciatic pain whenever I twist or turn and a constant burning buttock .. heh .. sounds funny, but after a while you wish it would go away .. (a bit like wind) .. Anyways .. I have an appointment coming up in March as my pain doc here doesn't do the Spinal Cord Stimulator any more and has referred me onto Sheffield (UK).
Will carry on reading and let you know how I get on!
Regards and smiles .. Saffy
I have a question for you. I am going to need a revision surgery. Right now I have 2 percanteous leads placed and not get full coverage and getting stimulation in the bowel. I have 2 options. First option is to pull the 2 lead and make into 1 lead and the 2nd option is to get a paddle. Part of me want to say heck just go for the paddle but then another part says lets try making 1 long lead. I am concerned for my job. For the first surgery I toke 6 weeks of FLMA and now they say I can't take it again for 1 year. They are going to let me take 2 weeks of vacation in a row. So my question is to everyone with the paddle, do you think that I can honestly go back to work full-time. I sit mostly all day.. I know no bending stretching or twisting which I can work around at work. Thanks to all for there advise.
I just finished reading your entire blog. It took me three days, and I've gotta tell you, I laughed, I cried, and (don't get freaked out or anything) I totally fell in love with you. You are without question, the bravest and most positive-thinking person I've ever "met." Now before DH starts worrying that I look like (geez, I almost said "Brad Pitt" and then realized that he's probably too old for you)uhhh... someone handsome, tell him there's no worries because I'm a scrawny old lady of 60. I've had degenerative disk disease for a looong time, and a couple years back, I made the mistake of having a procedure done that, instead of fixing me, ended me up in the hospital with blood poisoning, a serious injury to my back, and arachnoiditis (spideritis, to those who are cool). Lots more pain than I started with: nerve pain, weird pain, unexpected pain. It's changed me from an outdoorsy athlete type to a drugged and dopey stay-at-home type. I just finished my SCS trial (percutaneous) and it was a humongous failure. Stimulation couldn't get to the parts that really hurt; it stopped working after 3 days, but not before I discovered that you can't sneeze, look out the window, pat the dog, or poop without having to turn the darned thing down. And then I read your blog and have made some big decisions, thanks to you. So I'll end this too-long comment with a huge thank you more than words can really say. You are brave and funny and smart and a fantastico writer, and DH is a lucky man.
Erk! Can you really not cough or sneeze?
I have my appointment with the doc at the Pain Clinic at the Northern General Hospital in Sheffield on 25th March. Have a good few physce forms to fill out too.
Am hoping to progress from there to the possibility of a trial.
All I want is to be able to walk more than 100 metres without having to stop and let the pain subside a little .. to be able to sleep more than 3 hours and not wake up frozen into a position I have to ease myself out of because of pain .. and not to have to take as much medication in the (at least) day time!
My OH isn't keen on my having this as it would appear the microdiscectomy I had in 2007 has contributed towards how bad I am now and he thinks .. another operation??? Err no thanks ! I however, being the one in pain all the time, can only see a SCT as a possible/maybe at reducing the pain.
Hi everyone! Thanks for your nice responses!
Seernisse: I'm really glad for you that you feel the stim. was the right way to go. Just curious..have you had any re-programs since your original surgery? You may have noted this at some point already and, if you have, forgive me. My memory is crap.
Lizi: Oh dear..I can't believe you got yourself all geared up to have the revision and had it re-scheduled. I wish I could pat your head (or swear at someone on your behalf). Can they give you a guarantee that the same thing won't happen again on March 3rd? How are you doing in the interim?
Limojay: Hey there! Oh yes..you're right..some days are just a right bitch. I'm having one of those days today..been having a flare the past few days, actually. Certainly no fun (understatement) but def. better with the stim. than without.
RB: I'm very, very happy that this blog may have helped you in some way make a decision. And, don't worry, I promise to keep up with the posting. As long as I have visitors, I will continue to ramble!
Saffy: Hello and welcome! I'm so glad you found my blog but I also know you wouldn't be here if you weren't in pain. I am sorry to read about what you've been through..how are you managing your pain right now? I understand your OH's concerns about another surgery..I had the same concerns since I developed so much scar tissue after both of my surgeries. The funny thing is..they placed my paddles up in my thoracic region..not around where my discectomies were so there was no messing about with the old post-op area (I should note that the trial leads were in the L3-L5 area but that was OK for me, at least). Gosh-I totally know what you mean about the sleeping thing and being frozen into position. It's rare that I wake up feeling well-rested for that reason and I feel quite limited in terms of positions that are comfortable. It's either my left side or my back and it seems that lately even my left side is being naughty. Ativan has helped me with the sleeping thing. Have you tried or are you on any sleepy meds? As for the coughing and sneezing thing. With any strain including pooping), you do experience a jolt or surge of stimulation. It doesn't hurt but it is strange and not exactly comfortable...but it can be managed and you do get used to it in a way (and you can turn the unit off if you, for example, have to use the toitey).
So you will have to let us know how your appt. in March turns out...
Sue: Aw..I'm sorry to hear you are in need of a revision. I would say that 2 weeks would be pushing it. I was still very sore and in shuffle mode at the two week mark. I guess I'd just worry about you making yourself miserable by pushing yourself to get back to work full-time. How were you at the 2 week mark after the first? That may be a good measure for you, as the paddle surgery is more involved..though if you had the paddle put in, would they have to fiddle with the IPG unit as well? Or would that stay in place? I think that would make a difference. How long will it be until you hit the 1-year mark for the FMLA?
Leslie: Oh man..you just made my day. I'm in the grumps since I'm on day 4 of a real wanker of a pain flare so to read your incredibly encouraging comment meant the world to me! Far from freaking me out, you made me tear up. Really..thank you so much for taking the time to express such a nice sentiment and for making me laugh. And you should know, I have a soft spot for scrawny ladies (though 60 is so NOT old).
My heart hurts to read about your horrible back surgery and the fact that you developed arachnoiditis. ;( (how did they diagnose that, by the way?). Do you mind me asking what type of surgery you had? Was it a fusion? I'm being nosy. And I'm sorry that this SCS trial didn't help. Will you try another with different lead placement or do you think it just isn't your thing?? Did your PM mention an intrathecal pump as an alternative? Me thinks I'm asking you way too many questions...though I do have another super important question and that is..what type of dog do you have? (Mr. B actually asked me to ask you this. He's nosier than I).
I did really well on the first surgery. It was an outpatient procedure and I wanted to go shopping that day. Of course my husband said no and just toke me out to lunch. I am just really worried about the paddle. I know it more invasive and thats what really worries me. The surgeons said that they would have to fiddle with the battery with both procedures. Part of me wants to just go for the paddle and say lets be done with this and heck on my job. Then the worry wart in me says in this job market how long will it take to get another job. I don't hit my FMLA 1 year mark until December 15, 2010.
In response to your question, Yes, I've had probably 3 reprograms. I currently have two faves - one for sleep and one for all the rest of the time. The coverage is currently good and hits all the right places.
To answer your most important question first, I have TWO dogs: Jack is a chow mix (we think Chow mixed with Newfoundland). He's big, all black, velvety soft, dumb as a brick, gentle as can be, and was found living on the median strip of a highway in North Carolina. My daughter was going to school there at the time, and rescued him but couldn't keep him, so we flew him up to NH where he crawled out of his crate at the airport and sat in my lap (on the floor), as if to say, "Phew! That was a close one!" He was totally wild and ran away quite a bit (we live near woods), but he's perfect now. We've had him for 12 wonderful years and he lives the life of a pampered king.
Our second dog is Sophie who turned 1 this month. We're told she is from the streets of Puerto Rico and then a shelter in Indiana and then a shelter here in NH. She's a TerriBeagle -- she's skinny and fast like a terrier but has a beagle's coloring. She worships Jack and has given him 2 extra years of life, we think. (He was slowing down quite a bit and now he romps and plays like a pup.) Sophie's adorable and snuggly but her favorite pasttime is racing through our woods pretending to hunt. She's not the best-smelling doggy in the world.
And now I've used up all this space talking about dogs, and didn't answer any of your medical questions. I promise I will (and feel free to ask me anything -- I don't mind at all), but maybe tomorrow. I hope I didn't annoy anybody with all this dog talk!
I'm going in for my trial next week. I have to admit- I'm a little nervous. It was one thing when it was philosophical concept... now it's reality.
I have 4 degenerating discs (L2-3 through L5-S1). Sometimes I think I'm a total wimp... so many of the stories I've heard are so much "worse" than what I'm going through. I'm actually wondering why the dr suggested this to me... or maybe I'm just trying to talk myself out of this whole process.
Thanks for your blog. It's really given me some insight into what I might be getting myself into...
Beth, I often feel the way you do -- that my pain is nothing compared to the suffering of others (Danimal, for instance). And I also assume that EVERYone hurts, and that unloading the dishwasher or searching for something in a bottom drawer is agonizing for everyone, not just me. But then the world smacks me upside the head and reminds me that no, most people feel just FINE and that they're able to do the things they want to do, whereas I'm not. So try not to doubt yourself. If your pain is making your life less fun, that's reason enough to search for answers. Good luck with your trial. I hope it works for you.
Danimal, I think about you often and hope that your nasty flare has subsided somewhat. Today I was looking at sparkly nail polish and thought of you. :-)
So... trial began 2 days ago. It ends on the 17th. So far, so good.
I do have a question, though. Right now, I have stimulation all the way down to my toes. Is it the same with the permanent implant? It's kind of... distracting...
Beth, how's your trial going? Think it's going to do the trick? Just wanted you to know I've been thinking about you (and Danimal too, of course). :-)
Leslie,
The good news is that it does block a good chunk of the pain. The bad news is that the leg stimulation is driving me bonkers. I think that I'm not ready for this, but I may be someday. I'll keep taking just the pain meds and having ESIs unless the doctor tells me they can do an implant that doesn't mess with my legs like this. I'm afraid I know the answer, though.
Did the sales rep give you a bunch of programs to play around with, but they all sent weird vibes into your legs? With my trial, I had 9 programs and some were all legs, a couple were just butt (now THAT's an unusual sensation!), but really, nothing was right. I'm sorry this hasn't worked perfectly for you, but at least you gave it a try. Hang in there, B.
Beth,
Your rep should be able to block the stimulation out of your leg or maybe they need to change the amplitude. I would call the rep and ask to be re programmed. It really is worht figuring out!
Hiya friends.
Well I went to see about a stimulator trial last Thursday. The Doctor wasn't convinved this would help me as the pain only "burns" through my buttock down my thigh .. not down to my toes ..
To say I am gutted is an understatement.
He said he is not sure ... and in this situation he usually asks advice from his colleague a neuro surgeon, so is referring me onto him .. but to be honest, I've come to the point where I'm giving up.
Saffy, you waited so very long for your appointment, and then got such rotten news! I am so sorry, and so disappointed for you! If you're anything like I am, you had very high hopes for the trial. By the time my trial appointment came, I was SO excited; but almost immediately, I could tell it wasn't right. They stood me up, started the stimulation, and I felt strong tingling down both legs, but not anywhere near where I needed it (my entire pelvic bone region). Still, they sent me home with 9 different programs and instructions to try it for a week. No luck, and after only 3 days, I must have done something wrong because the leads moved out of position and the thing stopped working entirely. I had a doc appt. recently and have a new neuro drug, but so far, no luck there either.
So it feels like you and I are both back to square one. What do we do? I just started seeing a Pain Psychologist who suggested reading "Full Catasphrophe Living: Using the Wisdom of your Body & Mind to Face Stress, Pain, and Illness" by Jon Kabat-Zinn. I also went to Zinn's website and downloaded some lectures teaching "Mindfullness Meditation" to control pain. I guess I'll give them a try since I don't know what else to do.
But I'm desperate and frustrated and glum, as I know you are. I'm sick of taking drugs, and they don't work anyway. I'm seeing a physical therapist but not getting any results. Before all this happened, I was a rock climber. I have a "big" birthday coming up next month and want more than anything to climb, to prove to myself that my life isn't over. But instead, I've developed tendonitis in my arm on top of everything else. Complain, complain, complain. Sorry!
Does the Zinn book sound interesting to you at all? Want to read it together? A 2-person book club? I'd love to have someone to talk to about it. But even if you're not interested in that, please know that I'm thinking about you and sending positive vibes all the way across the ocean. Take care and hang in there.
Hiya Leslie ..
Bah .. Am just about hanging about. I feel so tired .. I guess it's just emotional tiredness.
Am seeing a Clinical Physcologist who does the whole mind/relaxation thing ... he gave me a relaxation cd to take away last week but to be honest, as soon as I put the cd on I start giggling. (I guess at least it makes me smile) I daren't tell him when I go and see him on Friday as it's HIS voice on the cd.
This week he is teaching me a tapping technique where you tap above your eye .. below your eye (in the centre) below your nose .. and in thecleft of your chin .. I am so not going to be able to do this without wetting my pants laughing !
I'll have a look at the Zinn website Leslie and let you know. :) We may get more out of it reading it "together".
Physio this afternoon, so I am going to get Norman to give me ultrasound - something nice and relaxing .. I'll probably dro off to sleep as I am still feeling sleepy from the flippin amitryptilline last night.
Saffy, I'm having much the same response to the Clinical Psych. CD I'm listening to. In the most soothing of tones, Dr. Zinn is saying, "Breathe in, breathe out... just feel quiet inside and let yuor breathing wash over your pain..." Sadly, I've only been able to listen to the CD in the CAR while driving. Ha! At one point he says, "Maybe you hear sounds... birds, the hum of a florescent light, distant voices..." and I think, "Or the sound of honking horns and revving engines..." I'm so bad.
I know what you're talking about with tiredness. Between the pain and the pills, what can we do? But today, it's warm and sunny for the first time in a long while, and I'm taking my dogs out to do some yard work no matter what. Raking a bit of the yard, sitting in the sun. I guess I'm learning to be nicer to myself for a change.
Hey, I feel like we're imposing on Danimal's space. If you feel like it, email me at LRHamilton@comcast.net. I'd love to know how you're doing. :-)
Congratulations!
Honey, you're hairstyle is not frumpy, it's "classic."
Love the pic of Mr. B.
Thank you for your blog.
I am sorry to do this in a comment but I've been doing a lot of reading on your site without commenting.
I'm the Community Manager over at WEGO Health - a community dedicated to Health Activists (people like yourself who blog, tweet, etc.) about health. We're holding our first in person Health Activist Meetup this week and I think you'd be a great person to have at the event - you're clearly an active voice in the community!
I also wanted to point you to a recent discussion on our site about Blogging Hope (it seemed relevant to your blog) - http://community.wegohealth.com/group/healthbloggers/forum/topics/health-bloggers-have-you-blog.
If you're interested in our Boston Meetup, I'd love to give you some more information. Again, sorry to do this in a comment but I think you would enjoy the Meetup. =)
Thanks again for writing.
Susan M.
susanm@wegohealth.com
Happy anniversary! I feel I would not be a responsible patient if I did not comment to include my recent failure(s) by Medtronic and the spinal cord stimulator I received in 2008. My spinal cord implant had been a happy story until a few weeks ago - I began having problems with the medical device (it had protruded); giving me the worst stinging/burning sensation at the implantation site. My 'pain specialist' doctor and Medtronic have not been helpful - they have been the complete opposite. It's as though they consider me an enemy and could care less now that the Medtronic implant is in (though failing). In addition to the shifting of the device, the battery has failed. It hasn't even been two years. I cannot impress upon others considering this life changing event to thoroughly research before going through with the surgery. I was utterly desperate after living with chronic pain for years - I would have done it differently had I known what I am experiencing now. I am hopeful that my situation stems from an irresponsible physician and Medtronic representative. I also had a blood clot form within 3 months of my surgery thus suffering a myocardial infarction, of which I am lucky to be alive. I truly hope that all who have the devices implanted have continued success.
The Doctor I initially saw re. a trial said he wasn't sure it would help. He also got quite huffy with the fact that I had read up on this procedure on the internet and knew quite a bit about it.
Anyway, he's sending me for a second opinion to a Neuro Surgeon .. my appointment is July 1st.
I've been too disappointed to come on here before now .. all I wanted was a trial, I am well aware it may not suit!
Will let you all know what happens ... and .. enjoy the summer folks.
Congratulations!
I left a comment for you last May after I had had my trial done. A lot has happened since then towards getting my permanent implant. On June 17, 2010 I had my surgery. I'm not even a whole one week into recovery. I could really use some support. For me, post-op has been much harder than I had anticipated.
Is there any advice you can share with me on how to survive the first weeks? Or potentially not make mistakes and how to care for myself?
thank you Danimal for this blog!
~Amanda
Hi Danimal & Amanda,
Just wanted to reassure you, Amanda, that it really is worth it! I've been through recovery twice now - implanted in August 2009, lead migration then revision surgery in March 2010.
The recovery is NOT fun - but just take it easy & listen to your body & be kind to yourself and it will be worth it.
I now have 90-100% pain relief during the day - and I'm back at work fulltime - without medication. At night I do get breakthrough pain& have to take something - but even then it's half the dosage I was on before.
If my leads move again it will mean a laminectomy to install surgical leads, but I'd do it tomorrow if it had to be done - I am SO grateful for the relief.
Read back on Danimal's blog for an inspiring account of recovery. All the best.
It is detrimental to health is not properly treated, chronic pain because of the magnitude that expands on the human body that makes people suffer from this pain sacrificed many things, and even when the pain is too attempt suicide, therefore, we must caution those who prescribed medicines can be dangerous if they purchase addiction to drugs.
I am concerned that Danimal has not updated her blog and we don't hear from her except in comments... and then, not since February...
I diddled and dawdled and have never done anything except facet-block-like injections... I don't know exactly WHAT they are as my PM (anesthesiologist) is always rushed and perfunctory. He threatens me by saying that he doesn't care, he's willing to leave (I always go on Friday afternoon). My neurosurgeon had nothing better to suggest. It seems that not a lot has been tried. I am at the highest dose of oxycodone, short-acting medication, of anyone in my PM's practice and he is now talking about reducing/eliminating it. I fear this greatly... even though I have to admit that it doesn't do much good and maybe I do have "opoid induced hyperalgesia". Who knows... all I know is that I never dreamed I would be 60 and feel 30 and be shocked every time I get up and feel this terrible, burning, agonizing pain. I can do so little. I really only feel comfortable lying in my bed. But I know that's killing me as surely as anything else. My blood pressure and weight have gone through the roof and I now may even have symptoms of diabetes. My teeth are falling apart because I could not possibly sit long enough to have anything done. Plus I don't think pain meds would help any more and I can't face tooth repair without pain relief. It's all such a mess and all so much not what I expected. I have a grandchild coming and don't even care. If I could just get rid of this pain... If anyone cared enough to look into it, try to figure it out... I don't know. Future looks grim. I envy anyone who can walk, move, do anything without agonizing pain. I want to be someone else. I don't want to be this way.
Let's hope she is busy doing GOOD things.
Margaret, your Doc doesn't sound very sympathetic .. can you not change to another?
You can't live your life in this way and there WILL be someone out there who can help you.
I've just been for my second opinion re. the SCS and i truly thought he would say "No" .. I'd even kinda prepared for it in my head.
He as the kindest, most understanding Neuro Surgeon I have come across.
He said I'm far too young (49) to live the life I'm living .. that life is wretched and if this could help, even a little, then he is more than happy to go ahead with the trial.
I still have to see a Physcologist as he says, I have to get it right in my head that it wont get rid of the pain .. and it may not even mask it totally ..
I also have to see a Nurse who will be my first point of contact before and after the op ...
We're getting there!
Saffy x
The thing about me is that I have only lower back pain. No leg pain. The stimulator seems to help best with leg pain and very little with lower back pain.
BUT -- I have discovered something else. It's so simple I can hardly believe it: losing weight and strengthening my core muscles. (Stomach/abdomen, butt, pelvis -- the whole "girdle" that holds up your back.)
I won't go into how I discovered this, and how disbelieving I was at first, but extreme physical therapy is helping immensely. I was lucky enough to get a physical therapist who is also in chronic pain and whose MRI looks worse than miine. He is also whip-thin and wiry-strong. As long as he stays that way, he can manage his pain by simply ignoring it.
And so can I. It's starting to happen gradually as I use isometric exercise for wtrengthening. I am now waiting for the approval of the neurosurgeon so that I can go back to the recumbent bike and other cardio and regular (not siometric) exercise, since it's easier.
Right now I am squeeeeezing in my corre muscles whenever I stand up (it's the only way I can stand or walk at all) and whenever I thinkk about it while lying in bed. And, amazingly, the pain is going away in my back. I have muscle pian, sure -- my stomach, butt, and sides hurt like hell; even my arms hurt from tightening them. But my BACK pain, for which I've been looking for a solution for long, is partly going away and partly -- somehow -- becoming endurable.
I am now SO glad that I did not get the Medtronics implant. It would have been a terrible mistake, since I would have made my leads slip out of place at the very least, and hated having this device in my body as well. I might have had an infection, clot, or heart attack as Walkandlistentoyourheart did. And both the Medtronics rep who would have been mine, and my doctor, would have been just as rushed and perfunctory as ever.
This way my body is intact and ***I**** (not a frakkin' doctor or rep) am in charge of my healing. I'm getting better! Pray for me that my new x-rays and MRI show that I can continue to work on my core strength and continue to improve.
I don't even care about pain meds any more. I go through the day and literally have to be remminded to take them. My next goal is to reduce or eliminate them as much as possible.
All I can say is, try becoming strong again. Leslie, were you the rock climber? You must have had great core strength. Can you get it back? Do you think it might help you, or is your pain somewhere else?
I feel LUCKY now that I have lower back pain, since I know so much of it is due to that slackness is my pelvic "girdle". I'm like a hugely pregnant woman, with my weak belly and abdomen hanging down and pulling on my back. My son's business partner broke the vertebra just above mine, and he says that when he misses his workouts for a week, he can feel the pain coming back.
Anyway, that's my update and positive message for people with chronic pain in the lower back due to whatever. Core strength and weight loss. I'm easily and happily (safely too) eating around 1000 calories a day and the weight is falling off. I eat old-fashioned, cooked oatmeal, fruits, vegetables, yogurts, and supplements. And it's working. I see a future nnot without pain, but with pain that is manageable, and on my own terms, in my own hands. Let the doctors and Medtronics reps do their thing. The day will come when I don't need them any more.
The thing about me is that I have only lower back pain. No leg pain. The stimulator seems to help best with leg pain and very little with lower back pain.
BUT -- I have discovered something else. It's so simple I can hardly believe it: losing weight and strengthening my core muscles. (Stomach/abdomen, butt, pelvis -- the whole "girdle" that holds up your back.)
I won't go into how I discovered this, and how disbelieving I was at first, but extreme physical therapy is helping immensely. I was lucky enough to get a physical therapist who is also in chronic pain and whose MRI looks worse than miine. He is also whip-thin and wiry-strong. As long as he stays that way, he can manage his pain by simply ignoring it.
And so can I. It's starting to happen gradually as I use isometric exercise for wtrengthening. I am now waiting for the approval of the neurosurgeon so that I can go back to the recumbent bike and other cardio and regular (not siometric) exercise, since it's easier.
Right now I am squeeeeezing in my corre muscles whenever I stand up (it's the only way I can stand or walk at all) and whenever I thinkk about it while lying in bed. And, amazingly, the pain is going away in my back. I have muscle pian, sure -- my stomach, butt, and sides hurt like hell; even my arms hurt from tightening them. But my BACK pain, for which I've been looking for a solution for long, is partly going away and partly -- somehow -- becoming endurable.
I am now SO glad that I did not get the Medtronics implant. It would have been a terrible mistake, since I would have made my leads slip out of place at the very least, and hated having this device in my body as well. I might have had an infection, clot, or heart attack as Walkandlistentoyourheart did. And both the Medtronics rep who would have been mine, and my doctor, would have been just as rushed and perfunctory as ever.
This way my body is intact and ***I**** (not a frakkin' doctor or rep) am in charge of my healing. I'm getting better! Pray for me that my new x-rays and MRI show that I can continue to work on my core strength and continue to improve.
I don't even care about pain meds any more. I go through the day and literally have to be remminded to take them. My next goal is to reduce or eliminate them as much as possible.
All I can say is, try becoming strong again. Leslie, were you the rock climber? You must have had great core strength. Can you get it back? Do you think it might help you, or is your pain somewhere else?
I feel LUCKY now that I have lower back pain, since I know so much of it is due to that slackness is my pelvic "girdle". I'm like a hugely pregnant woman, with my weak belly and abdomen hanging down and pulling on my back. My son's business partner broke the vertebra just above mine, and he says that when he misses his workouts for a week, he can feel the pain coming back.
Anyway, that's my update and positive message for people with chronic pain in the lower back due to whatever. Core strength and weight loss. I'm easily and happily (safely too) eating around 1000 calories a day and the weight is falling off. I eat old-fashioned, cooked oatmeal, fruits, vegetables, yogurts, and supplements. And it's working. I see a future nnot without pain, but with pain that is manageable, and on my own terms, in my own hands. Let the doctors and Medtronics reps do their thing. The day will come when I don't need them any more.
The thing about me is that I have only lower back pain. No leg pain. The stimulator seems to help best with leg pain and very little with lower back pain.
BUT -- I have discovered something else. It's so simple I can hardly believe it: losing weight and strengthening my core muscles. (Stomach/abdomen, butt, pelvis -- the whole "girdle" that holds up your back.)
I won't go into how I discovered this, and how disbelieving I was at first, but extreme physical therapy is helping immensely. I was lucky enough to get a physical therapist who is also in chronic pain and whose MRI looks worse than miine. He is also whip-thin and wiry-strong. As long as he stays that way, he can manage his pain by simply ignoring it.
And so can I. It's starting to happen gradually as I use isometric exercise for wtrengthening. I am now waiting for the approval of the neurosurgeon so that I can go back to the recumbent bike and other cardio and regular (not siometric) exercise, since it's easier.
Right now I am squeeeeezing in my corre muscles whenever I stand up (it's the only way I can stand or walk at all) and whenever I thinkk about it while lying in bed. And, amazingly, the pain is going away in my back. I have muscle pian, sure -- my stomach, butt, and sides hurt like hell; even my arms hurt from tightening them. But my BACK pain, for which I've been looking for a solution for long, is partly going away and partly -- somehow -- becoming endurable.
I am now SO glad that I did not get the Medtronics implant. It would have been a terrible mistake, since I would have made my leads slip out of place at the very least, and hated having this device in my body as well. I might have had an infection, clot, or heart attack as Walkandlistentoyourheart did. And both the Medtronics rep who would have been mine, and my doctor, would have been just as rushed and perfunctory as ever.
This way my body is intact and ***I**** (not a frakkin' doctor or rep) am in charge of my healing. I'm getting better! Pray for me that my new x-rays and MRI show that I can continue to work on my core strength and continue to improve.
I don't even care about pain meds any more. I go through the day and literally have to be remminded to take them. My next goal is to reduce or eliminate them as much as possible.
All I can say is, try becoming strong again. Leslie, were you the rock climber? You must have had great core strength. Can you get it back? Do you think it might help you, or is your pain somewhere else?
I feel LUCKY now that I have lower back pain, since I know so much of it is due to that slackness is my pelvic "girdle". I'm like a hugely pregnant woman, with my weak belly and abdomen hanging down and pulling on my back. My son's business partner broke the vertebra just above mine, and he says that when he misses his workouts for a week, he can feel the pain coming back.
Anyway, that's my update and positive message for people with chronic pain in the lower back due to whatever. Core strength and weight loss. I'm easily and happily (safely too) eating around 1000 calories a day and the weight is falling off. I eat old-fashioned, cooked oatmeal, fruits, vegetables, yogurts, and supplements. And it's working. I see a future nnot without pain, but with pain that is manageable, and on my own terms, in my own hands. Let the doctors and Medtronics reps do their thing. The day will come when I don't need them any more.
Oh my gosh. Sorry for all the duplicate posts. but the page kept saying that I had entered the special word wrong!
The first one contains everything I wanted to say. I thought maybe the probleem was that the post waa too long so I broke it up.
Hi all .. Thought you would like to know that the neuro surgeon I saw on September 4th has agreed to put me forward for a SCS. I see the Nurse Specialist on 8th November and the Physcologist on the 16th .. any tips you can give me as to what happens at these appointments, especially the Physcologist, would be greatly appreciated.
Saffy :)
Saffy,
When I went to the Physcologist it really wasn't a big deal. He really just sat there and talked. Asked how I would feel about having somthing in my back and would that bother me. He also asked what I expected from the surgery. Just making sure that you not wanting to run a marathon or anything like that. In general it really was just a waste of time. Just a step that you have to do to please the insurance company. I hope that this helps!
Thanks Sue.
I'm having my procedure done on the National Health Service here in the UK. I am covered by BUPA Private Health but they don't cover anything that isn't a "cure" or guaranteed to bring you back to 100% health, so in my case the SCS isn't covered.
It's been a long haul, but my General Practitioner has been a huge help and said she would write letters every two weeks until I got something moving.
Am all set for November .. My husband is going to come in with me - he doesn't usually.
Sorta scared now ..
Saffy,
Don't be scared. Be happy that this is the begining of the new you. Just remember that you will still have bad days but the good days will out number the bad ones!
Greetings, all. Hope you are all doing well. I'm glad I found your site.
I had my stim "installed" 5 weeks ago today. I've been doing fantastic until recently. The pain reduction for my low back and sciatica is around 90 to 95%. However, my pain around the upper incision and partial laminectomy has increased over the past week or so. My lats feel like I've done about 30x too many lat pull-downs at the gym; T8, where they did the partial laminectomy, well, doesn't feel right; and it feels like someone punched me in the ribs about 4" or so below my right arm. I knew things were going too well.
I went back to work in my office a week and a half after surgery, with a one hour commute each way. Now that I think about it and read more on-line, I wonder if I ramped up way too fast.
Anyway, thanks for your posts, it makes me feel more "normal" :o). Hope you're doing well, D, and all others.
I have good news ... great news in fact ... My stim trial has been given the GREEN light! Not sure when, but the team have a meeting on the 14th December and it will be discussed and hopefully, scheduled from then.
Please join my blog too .. http://saffy2010.blogspot.com/
First, thank-you Danimal for your extraordinarily helpful blog.
Second, does anyone have any thoughts on what my wife should do under the following circumstances? Five months ago she had an implanted percutaneous Medtronic neurostimulator in her left buttock. The unit is causing her pain, both from the unit itself and also pain around the unit and down her left leg when the unit is turned on.
Oooooo my word---I am soooo soooo glad I found your blog!!! I hope your still doing the blog--I don't know what made me think to look for a blog about all this junk--however--once again I am so happy I did!! I would love to exchange emails--I am totally going to read your entire blog. I have the stim. implanted in my right upper hip--noticed u got to pick. Nice!! They never let me!!! O do I have some stories and also have those dark days....weeks...months!!! I was an educator for 12 years and added 2 MAs once I received my BAEd however--have since had to give that career up because of my pain and will b starting the 3rd year of school starting w/o me!!! However---those lil' 2nd graders can b pretty demeaning and standing from 8-3 was simply not an option for me. Ok ok---no more until I c if u at-least still have the blog and will respond to my ramblings!!!! Lol!!
PS--my Medtronics rep is awesome as well--we just text one another!! Lol!!! Within--mints if she or he is not in a surgery.
Thanks---
WenDee Riffe 41 year old wife and mom of an 18 year old son with a stim just like u!!! Wooohooo---found someone with same issues and pains!!!
Remember~~~your GREATEST wealth is HEALTH!!!!
Post a Comment