Back in 2007 some of you witness my trial unit experience. I realize that it is a couple of years later....wow, how time has flown bye. I can't believe how fast it has gone bye, but since I have gotten the perm unit I've had some ups and downs. More downs then ups......it hasn't been a great experience like I originally had said when I was going thru my trial.
Since I had gotten the unit implanted it worked okay, but not as great as the temp unit allowed. I was never able to put on the sock and shoe as I originally wanted too. Wearing pants is not an option either. It has been very hard to say the least. The bad thing is that the stim unit worked up till about just over a year ago. Last March 2008, I started noticing how the unit would get very, very hot when I would try to recharge the battery. Keep in my mind for those of you who aren't aware of the placement of the unit itself.....it is in my butt! It would shift around, move and it protrudes from the skin. Having it in keeps me from sitting properly and laying flat in bed. I actually have to sit or lay at an angle or on my side. This is very uncomfortable. I started to complain to my doctor about it. He sent fme for blood tests to rule out any infections. What a fight that was as my WC case worker wouldn't approve the testing. She denied it and boy was the doc mad! He was like thank god you didn't have a infection as that would have been deathly! Oh my god!!!!! I've gone back to my PM doc several times who told me his office was no longer responsible for my unit. What?! So you have to wonder who is responsible? What happens if I had to have my battery changed? There really is alot of what or who would be responsible questions in reference to this.
At one point I had to sit down with the Medtronic rep who told me that my unit had to be tweaked, checked and updated yearly. I was never told that when the orginal doc place it in...he just said there you go have a good life! I was also referred to another Neurosurgeon which was a joke. In fact, he scared the every living you know what out of me. He was like the unit doesn't work no problem we will lie to WC and they will replace it no charge. Sign these papers and you will have the surgery the next day. WHAT???!!!!!! I have never taken advantage of WC and refused to start now on his behalf. He scared me so much that I hopped on my scooter and sped right out of their office. I refused to let him even touch me...all he could do was in the hour I was in his office he was on the phone speaking about other patients for 40 minutes of that hour. What about patient privacy....HIPPA? He was also really big on patting himself on the back as being the number one doc for implanting those stim units. As you can see my frustration in reference to this. It has been a very long year dealing with this situation.
My fight hasn't ended since I first began speaking to my PM doc in reference to my stim unit. I met a new doc who said that the placement of my unit was implanted incorrectly. Great! The original doc put it in too low and didn't make the pocket deep enough. He could honestly see how much discomfort I was in and offered to put a new unit in.....one that was smaller and placed just below the belt line. Wonderful, I was all for it, but then something went wrong. WC was willing to pay iin full for everything, but the doc/office got scared and said they wouldn't. It really became a fight cause they said that the hospital refused to allow the surgery. Huh! That was a new one to me. As fate would have it I started to fight with the doc office because now the doc has changed his tune. At this time I am now waiting for approval to have the unit removed. Yes, I said it removed. I just can't deal with the pain, the discomfort of it anymore. It isn't giving me the coverage it once did in the beginning. The unit is actually not being used as much. Please don't get me wrong I am unable to bend, lift, carry, pull or anything else so it doesn't mean the leads have moved at any time. I want to be comfortable and just maybe this will help. It is a shame, but I have been dealing with the pain for so long it really doesn't matter.
So for all of you considering the stim unit...read my thread on the stim unit trial. It did work, but the aftermath is very important to understand. The docs will say it might work for a day, a month or maybe a year, but you have to understand the timeframe. I did have high hopes, but now the decision to have this done has been a hard one. You must do what is best for you, but figured I needed to tell my story to show what happens later.
Hopefully, my experience will be helpful, informative and resourceful. In the end I hope you all have a pain free day!
Ben
Last edited by Scrufysdad; 05-25-2009 at 04:59 PM.
*hugs* So sorry you've gone through and are going through wc heck. I'm so glad they are far, far in my past!
The one thing most people don't know is tens,scs, blocks, only work on pain that is SMP, sympathetically maintained. It does not work for SIP, independent pain. All of our pain eventually goes SIP which is why no one is able to say how long it may "help." Most times and for most people, the scs only leads to full body spread. This is what I caution people against and the fact that this is the most invasive procedure which is a no no for rsd'ers.
I'm glad you have written your journey here for everyone. I hope it helps someone or several someones. :-D
So sorry to hear your story. Thanks for sharing with us all. I sincerely hope that you get that thing out of you ASAP. How can doctors, hospitals, WC, etc be so cruel? Do you have a lawyer for your WC case that can perhaps help you?
How about a lawyer for medical malpractice? Maybe not now, but for when all this is over. Just to make them squirm and maybe give yourself some satisfaction.
wow i am so sorry you are going thru this hun. but thank you for sharing your story. my doctor told me he would not push this procedure on me cause he said the leads can come loose and that for alot of people it will stop working after about 2 years so he said its up to me if i want to go that route. but he feels if the meds are working we should stick with the current plan until they stop working. hearing your story has made me decide a 100 percent that i will not go that route...i had thought about it but now hearing your story i will not be going that route so thank you so much for sharing it...and please keep us posted on your journey with this cause i'm sure everyone here cares about your well being cause i do...and i hope only the best for you and i'm hoping getting it removed will make your life easier..i do think you are making the right decision cause you sound miserable with having it in..so please keep us posted and i will be thinking about you and sending good thoughts your way!!!!!
Tara
Hey there.
Boy can I ever commiserate with you; can't BELIEVE I let Medtronics rep talk me into putting this thing in my body...have had to argue with my doctor that it didn't work down to my elbow where my pain was the worst ... he sends me to Cleveland Clinic to "make sure" of whatever...I don't even care anymore...but he was satisfied when they told him & me that they wouldn't be able to get any better coverage than he did so then what does he want to do AND I let him do? A lead wire revision...ok, you guessed it...it didn't work - so NOW he's sending me to a ortho surgeon because he thinks it needs to be attached higher on my vertebre or something...and yes,this is workmans comp so when can I say ENOUGH already. I beginning to believe that doctors see WC somewhere & just send you another place that can take more of their money and that my friend is a load of crap...I am so appreciative that wc has been there for me but at some point I should be allowed to say "enough"....anyways,good luck to you...sincerely hope it all works out for you and you get feeling better soon.
Ben it's so nice to hear from you again! I do remember your trial and then you just kinda faded away. I'm so glad you let us know how it really is to have the perm stim unit. I've always feared everything you said but the drs have a way of wrapping you into it. Thanks for the great info Ben I'm sorry it hasn't helped you as it should have. Good to have you back
eunie
Hello my friends in healthboard land. It's been a couple of months, I think. It has been a whirlwind around my homestead. So far I've been fighting with dr's offices and w/c to get some approvals. Seems everyone is fast to make a buck, people in both places like to stand around pointing their fingers that it was the others fault to why things aren't progressing along. Geez, its aweful when you are in pain and just want some relief, any relief! Of course, how can one really differenciate the RSD pain from the normal pain created by an object?
scioladyohio, everything you have written is my setiments exactly. When can you say when? W/C holds so much over our heads and makes it diffilcult for us to say no. With so many of my case workers they made me sit tight holding my tongue so not to cause a ruckus. Of course, they have paid for everything so no complaints about that end. It is really the stress of being told when to jump, how to jump, where to jump. I have friends/family who think I lie when I say I have no say to W/C. So much frustrations is placed on us which causes yet another problem....irritation of the RSD.
This will be my update on the removal of the unit. So far the fight has been going strong for weeks and finally "I" was able to get something done. Let's not give credit to those W/C people or dr's who sit around feeling like I am more of a nuscience then being helpful! Anyway, now I sit for a surgical center to call to schedule my surgery. Wonder how long this will take? No matter what I am closer to my agony being removed so I must wait. Once I get more information I will let everyone know, but keep in mind the stim unit is going to be finally removed. Yippee!
I appreciate everyones thoughts and yes, I will stay informed once the date is set. Take care and I hope everyone has a pain free day!
It happened late yesterday. I didn't expect a call till Monday because with the holiday I was told all dr's offices closed. That was to be expected, but when the surgical center called, they said book the surgery NOW......it was very unexpected. Nevertheless, I'm so happy! HAPPY HAPPY JOY JOY!!!!! As my wife always says....kinda hokey, but it works for this situation. LOL
Keep your eyes peered to these here boards cause I'm going in on the 15th for the removal! All of you guys are so helpful to me and I want to thank each one of you. I know that I end up MIA for awhile, but I always come back for support. That is the best thing about this board and the people who post on it. Everyone ROCKS!!!!
So continue to watch and as it comes up I will be either post on this thread or possibly start a new one so everyone can see the update! I'm still thinking mode....THINK, THINK, THINK. LOL Seems like I have tons of time for that!
I'll be in touch and I hope everyone has a pain free day!
Ok my healthboard friends tomorrow is the day! I will be metal object free that means that the stimulator will be removed. When I contacted the Medtronic company I asked them what do I do with the unit, hand held controls and the recharging battery.....hence they said keep as a souvenier. Isn't that interesting to know they don't get it back, of course I wouldn't expect anyone to reuse such an item with OSHA standards. This is great, whoo hoo I will be lighter and won't have to worry about being patted down anymore at airports. That was always a thrill to experience! LOL Also, I will no longer set off the metal detectors, microwaves will no longer start as I walk by and I will be able to have MRI's again instead of just Xrays! This is exciting to say the least.
Although, on a serious note my nerves are beginning to flare up now. I had to get permission to take the Oxycontin in the morning before the surgery or I'd be out of control due to the lack of that major narcotic I so am dependent on. Even though I am going into a outpatient surgical facility (I highly wish I was going into the hospital instead) they are putting me out entirely. NO twilight going on. They say they just pull the leads out and wallah its done, my fear is that after 3 years what has attached, become apart of those pesky wires? What is going to happen to the pocket in my "butt" where the control unit was put? Will it still be hollow or will they leave it open for me to place my wallet into or maybe my cellphone? Will it eventually close up? Tons of questions which I know no one can really answer, but I'm offering some pre-surgical humor. Please understand that with humor there is still some truth to my questions. Well, no matter what I am nervous because when they work around the spine area anyone would have fears. The wife and I had the talk of what to do if something goes wrong. That is also the worst, be all end of all dicussion to have.
To all of you guys I will post when I can after the surgery to give you the update. Keep fingers crossed for a great surgery, prayers always welcomed and I will keep in touch. Hope everyone has a pain free day!
Ben
I'll be thinking of you! I know it will go well and you'll be healed back up in no time. You did make me giggle though. lol The part that got me was the "pocket". I'm entirely too visual and I actually pictured that in my head. ROFL
I wish I had some answers, serious ones to give you. All that I know is that after 3 years it won't be a Wa-La! removal at all! Who do they think they're kidding? There IS scar tissue built up around the leads and most likely the unit as well. We can only hope it's not a lot of scar tissue and it won't be a lot of trouble to remove the dang thing.
Good luck tomorrow. I was telling my husband about all of the people having SCS removed and he said maybe it was just as well his didn't work in the first place. Sounds like they are nothing but trouble. Or at least become that way even if they start out helping.
Sunny
Good luck tomorrow. Re: what you said about giving you the SCS as a souvenir...I had my pump redone a few months ago and asked if I could have the old one since we'd been buddies for the past 9 years and he said that they had to send it back to Medtronics to have it tested. Some government organization (can't remember which...FDA??) required it. I'm interested to find out if you really get yours. I would think the same "rules" apply, but who knows?
Sunny, I'm with you and your husband on that one. I'm SO glad my SCS trial didn't work. Small blessings, right?
Here I sit slightly lightheaded and possibly having the best sleep I've had in years. It is done, completed, removed! I really can't believe it is actually out of my body. Right now I am going to keep this simple cause I am still a little drug from the anethesia. The dr did give me back the stim unit for my collection. As he put it he liked to keep them as a rememberence of his patients. Not this time....so weird looking at that unit and it also had on of the leads still attached. They say it looked like a fishing wire, but it is much thicker then that. My wifes equates it too a rats tale by the thickness. Ok, some might find this disqusting, but that is the best way to describe it.
If my writing is off, I am sorry. At this time I have two incisions one going down my back along the spine and one going across my butt. They put staples in, but I don't know how many. Guess I have to wait till Saturday when my wife changes the dressings. The bummer part is I can't take a bath for a week.....pee uuuuuuuu! My wife says she is going to dowse me with Lysol before getting into bed everynite. LOL
Ok guys I am way too tired and thanks for reading. Gotta go lay down, but I will write some more tomorrow. Hope everyone has a pain free day.
OMG!!!! I am so sorry that I haven't posted sooner. Having this surgery isn't what I expected it to be at all! When I had the stim unit put in I don't remember the site being as sore, swollen or even painful; but this time I am in agony. My PM dr had to open me up in two places: one on the spine and the two on the butt area. Can you say I have "22" staples all together? Of course I can't see what is behind me, but my incredible wife has had to change the dressings so that is how we found out that information. She was shocked to say the least. The worst part is that I am in terrible pain, of course no other pain meds were given....how can you top Oxycontin to control the pain? LOL After the surgery though my wife was trying to do everything, I couldn't remember a thing, but we did have an emergency when I couldn;t stop bleeding so back to the dr's office we ran. My PM doc is such a "teddy bear"...so soft spoken, kind, empathetic.......one thing he forgot to give me though when I checked out of the surgical center was an antibiotic. My wife was STUNNED!!! We never even thought about an antibiotic, but it made sense...the guy opened me up and NEVER prescribed me anything so here I am going 24 hours without nothing. I freaked, stat infection, I'm going to DIE!!!!!! NO No no...but I am sure most of you can relate to my anxiety? So he gives me meds for that, I immediately start to take them. I can't move, I can hardly get into and out of bed without some help. It is a huge struggle for me. The guy won't be able to take out the stitches till the end of the week and I havne't been able to take a shower now since last Wednesday. Pee UUUUUUUUUUUUU !!!!!!!!!!!!! Oh how I yurn for a hot shower.
On top of everything else with me, my poor wife having to deal with everything else from the house, the dogs, the jobs, outside interferences she wasn't feeling too well herself either. She went to the dr to find out she was a fraction away from having a major heart attact. This has been a turely trying time for us. So with her out of commission cause the dr told her to do nothing but sit or lay down it is impossible to have two people down for the count. Life is giving us a run for our money so to speak. Since this is the first time I was able to sit at my computer I wanted to give everyone a update on my surgery. I'm very glad it is out of me. The pain is more intense then I expected from the surgery and the RSD. Dealing with life issue doesn't help at all, but once again makes one stronger.
So with all that said it is time for me go cause I am in pain sitting here. I hope everyone has a great day and pain free one at that.
Ben
Oh Ben,
I've been reading this all and just praying for you and your wife that this would all be over soon and both of you would feel better -that the surgical pain would be there but that it wouldn't be as bad as I kinda thought it might (I'm from a clinical background) and you see - I've got one of these gosh-awful things in my back for almost 2 years now that hasn't worked at all for over a year now and all I want is for it to be out - I think my leads come loose and wiggle around at least once a month because a get that horrible shock that you got when you were getting "fitted" and they woke you up to see if they had the lead in the right place and they didn't....well mine "migrated" once and I made the mistake of letting them revise it and also was STUPID enough of allowing them to put a second lead in at that time - what did I know but to believe the physician - he was a Pain Management doctor after all and he promised me he'd make it better for me - I've not been below a 5 since then and that is so rare I've mostly forgotten what it is like - my average pain level is more like an 7-8 and most days it's higher - I'm in a wheelchair a lot of the time and I use the strongest opioid they give out (the ones for cancer patients so I'm Black Label use so what happens when work comp settles and I am on Medicare?) I just don't know what to do. I force myself to walk at home and try to do a few things every day just so that I don't loose the use of my body but I'm starting to spread full body now and I'm terrified. Ben - I'm so happy that you have that terrible thing out of your body - but I am so scared to go through what you have done - that's the worst part about knowing what to expect. I truly pray for you and that you and your wife will heal together - get plenty of rest and try to not do anything more than you have to. If your hip is not an RSD/CRPS area first ice and then heat will help - otherwise - just heat - you are in my thoughts and prayers and I promise that where that evil piece of metal and plastic came out will get better quickly -- one last thought though - you did make me giggle with the thought that we'd have a secret money pocket in our hips for life!
Take care and have a pain free day, week, month soon! You DESERVE it!
Lissa
Ouchy ben, I pray for the very quick recovery of your butt. Coming from someone with crohns, It could be worst lol I will try to not let you get too many icky thoughts in your head about that. Reading these boards are wonderful for us sorta newby's that the dr's haven't put through hell YET, and a little scary. If i wouldn't have read about heading pads I swear they are the most wonderful thing since sliced bread, but now every time I go into the Pain Clinic I"m so scared he is going to say lets try this or that, since my last shot didn't go over so well. Now I have Big open sores on my leg that they looked at today. Gave me that Silver crap to help them. Got the good looking PA that my mom always flirts with lol. So I got out of PT today, that was the only nice thing. I have to go next week to talk to that guy about the sympthetomy-thing-a-ma-I-Wont-do-if-hell-freezes-over. Should be fun. But I'm doing what I'm supposed to. You and your wife are in my thoughts and prayers Ben get healthy quick, your humor is missed
Thank you so much for the quick thoughts of prayers. Well, it is another day in "paradise" in my house. Yesterday was the day for the removal of my staples. Yahoo!!!!!!!! Of course, it didn't come without some turmoil though. What a rough patch for us to endure coming up to this day. It was welcomed with wide open arms from my end. I had two dr's appts yesterday (Thursday) one with my PM dr and the other with the surgical center dr. First off let me explain that over the last 3 months my PM dr has cancelled my appts shifting me around week after week till finally I got to see him. During the shifting I kept telling his staff it was very important for me to see him since I was considering surgery and having it. Eh....they don't care, but I do! Then let's add in the surgical center calling me 5 times from Wed afternoon to Thursday morning telling me that my appt has to be changed because the excuses they gave me were the dr is leaving early, has an another appt, has a meeting, needs to catch a boat (yes, this is true) and I stopped them on the 5th call. My original dr who performed the surgery was on vacation (figures), but I got a dr who retired from the practice, but came back to fill in. DUH!! No matter what I was seen by both offices.
The PM dr was slightly upset that I didn't confer with him and felt that I should have left the unit in me. OH WELL!!!! He tried to make it lilke it was my fault for not coming in sooner to see him. I had names of the people who called to cancel, but no one by the names I have works for them. So basically I pulled it out of thin air. Persoanlly, I don't let it bother me. I know that my decision to have this removed was a good choice and by the looks of things it seems to be the general concensus of the healthboards posters as well. Thanks for the support. All my staples are GONE, but it didn't come out without hurting. I wonder what do the drs actually do in their offices? I mean the dr didn't remove the staples at all, but his assistant. Isn't that great?! Nevertheless, they are out, gone, thrown away, never to be seen except on my facebook page. It will live on by that! LOL
So I sit here my friends typing away to bring you up to date on my situation. Once again I do thank you for your input, words of advice and prayers. Hope each one of you has a pain free day!
Ben
Re: Ben & the stim Part 2 
