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Posted 11/22/2012 8:28 PM (GMT 0)
Hi all my dear HW friends,

I have finally consented and am now in very high favor of trying the SCS.  I have a trial on the 5th of December and, if things go well, will hopefully have the procedure before the end of the year (insurance you know).

I have a couple of questions, if you don't mind.  First, I got a letter from my insurance company saying that I may be needing DME and where to get it.  What DME might I need for this type of procedure (trial or final implant)?

Second, I called my PM to let them know because I have an apt scheduled on the 12th, where I was supposed to have trigger point injections.  Despite asking for the NP, I got the "lovely" nurse who is all knowing!!!   Anyway, I told her of the procedure and she told me I had to come in for my regular appointment (despite the procedure) and that I could NOT under any circumstances get any pain meds from this DR.  I even asked if she actually thought I could get by without anesthesia and she snidely said I could be sedated, but NO PREscriptIONS.  Now I have been communicating between all of my doctors the whole time, but I did refuse to allow my PM to do the trial because I want it done by the neurosurgeon who will be doing the procedure (if it works). 

I am very scared about needing additional pain meds after the procedure.  I don't know about the trial because I don't think that will be so bad and (as the psycho nurse said....my regular pain meds will cover that).  I'm just scared about the final implant and there is NO WAY I can imagine going through a "real" surgery where I have to be cut and expecting my regular pain meds to cover it.  Any ideas?????

Also, I have to stop taking Ultram (I take ultracet) 7-10 days prior to the procedure.   I have been taking this med four times per day for as long as I can remember.  Will I have withdrawals from it if I stop cold turkey??? Do I need to call the NS and ask what the deal is on this one and ask if it will be OK to cut down instead of stop completely because of the time I have been taking it? 

Lastly, the medtronics rep said they have a wonderful PM they work with about 45 minutes from my home.  I love the community where she works (very upscale) and the rep said she would recommend me to her if I was unhappy with my current PM after the implantation.  With the HORRIBLE experience I had with the last second opinion PM, would you go ahead and try to get in to talk to the PM before doing the procedure?  I just want to make sure I don't get thrown out of a facility for taking meds to cover surgery pain or have all of my meds stopped simply because I opted to try to help my pain by having an SCS implant.

I know this is a lot to ask in one thread, but it is obviously on my mind quite heavily.  I need you guys for advice because so many have already been there, done that.  

Thanks for reading, even if you don't take the time to respond. And, thanks soooo much for those who can give me a little insight into this whole thing.  It happened soooo quick!.  I'm still a little shell shocked (does anybody even know how long it takes to get back to normal from the surgery?)  Thanks guys!   I know I can count on you as always!

 

Posted 11/23/2012 12:21 AM (GMT 0)
Hi RetiredMom....

Glad you have a date for the trial - and I really hope it helps you! I can tell you have lots on your mind.... this reminds me of when I went in for the pump trial.... that's when I came to the forum here and I had even more worries and concerns than you, lol....

So, I'm sure those w/ the SCS will give you great advice.... but - having had the pump trial - it's *similar* to the trial/implant of the SCS (in terms of worries/concerns) - so I'll give your questions a try.... and if I get it wrong, lol - someone can correct me!

First - that nurse DOES sound *lovely* (NOT!!).

I'm not sure the avenue of this.... but I would surely have this communication worked out before you do the trial. In terms of extra pain control, if needed. For instance, even though the psych nurse said your regular meds would cover the pain, my question would be - "If I SHOULD needed extra pain control, what do I do?".

For instance, I absolutely needed IV pain meds for when I had the pump implanted for my trial. It hurt like h***.... because they obviously make an incision!! I'm assuming that even during the SCS trial - an incision is made to implant the leads?? (someone can answer that....). If the answer is yes -- I'd definitely want a *plan* set in place for extra pain control.

Same thing for the permanent implant.... they are making an incision!

Re: Ultram.... I would give a call and ask about this. You may be ok, since I *think* you have other meds on board.... but I would ask if you should taper down or stop completely.

I definitely remember your awful experience w/ the one PM. That being said -- I would still give the new one a shot. You never know.... she just might be the answer to prayer, you know?? That's what happened to me, a long time ago. I saw about 3 HORRIBLE doctors in a row (during my search for a PM)... and then I finally found my wonderful doctor/clinic.

Anyway - I understand completely ALL of your concerns. Those are just my thoughts.... like I said, those w/ an SCS might have more input. But I would definitely get the pain control issues worked out. Let them know that - yes, you understand that you won't get a script for anything... but what if you need pain control after the incision? etc etc.

Wishing you terrific success!! Keep us updated for sure.... --Tina

Oops - had one more thought.... re: the DME -- is this basically just getting a complete physical?? I know for the pump trial - we had to do a psych evaluation - which basically was to ensure you know you are going to have something IMPLANTED in your body, etc... and have realistic expectations.
Posted 11/23/2012 4:00 AM (GMT 0)
I can only tell you from my trial experience so it may be different for you. I had my trial done on a Thursday. I was fully awake with some mild versed and fentynal pushed via IV. The area that the wire was sent thru was numbed and a small 1/4 inch puncture was made. Two punctures were also made where the leads were anchored in place. I cant remember how far up the area was numbed. The wires are pushed into place by a device called a tunneler. Its an uncomfortable pushing and pressure going under the skin and fatty areas but not in itself painfull. You need to be awake so they can turn the unit on and test where you are feeling things. Afterwards they will take you to the recovery area and your rep will show you how to hook things up and you are ready to go.

I had lots of muscular pain just from the area that the wires went thru, the tunneler does a number on your back. I did not have any pain from where the wire come out from the skin. My back was covered with tegaderm, they dont want anything getting near that little puncture area. I went back to work on Monday to my normal duties (office type work), just no lifting. I did not need any increased pain meds after the trial.

The permanent placement I was completely out for. Since they had the placement xray from the trial I didnt need to be awake. I felt great till the next day, then all of the locals wore off. I was not a happy camper and needed alot of extra meds.

As for the pain meds after surgery. For the permanent it was expected that my PM take care of any scripts I may need extra ecevn though the NS was doing the surgery. Is your PM dr not recommending the SCS? If they are it shouldnt be an issue. Some surgeries my post op pain management has been temporarly transferred to the surgeon, but the SCS was so short of a time that the PM dr preferred to handle it.

The only thing I can think of for DME is if they expect you to need something like a walker or shower seat since you will have some restrictions. For the first month or so after the implant you will not be able to do much bending, twisting, lifting etc... I did use my walker for the first 2 weeks and then a cane for another few weeks.

I will try and think more about my trial, I think my brain is on turkey and sweets overload right now. But I do wish you luck with your trial!!!! I love my SCS! It has covered alot of "issues", not nearly as much as I had hoped but alot. Everytime I get dissapointed in my high pain levels while using the SCS I turn it off for a few hours and get back to a baseline pain level and I say WOW what a difference.

Hugs,
Shell
Posted 11/23/2012 5:18 AM (GMT 0)
Hi RM,

I'm glad to hear that you have the trial set up, and are going to give the SCS a try. Like anything else, it may not work for you, but there isn't much to lose for trying, and there is a whole lot to gain! Just remember that it may take some playing around with the settings & programming to find what works best for you. I'm not sure how long your trial is (mine was a week, but i've heard of people having it in for only 2 days, which in my opinion is way too short). Don't hesitate to call your rep and have him reprogram the stim if you need to! Also, be aware that the permanent device usually provides better coverage than the trial one (yo will also have more control over the settings).

As for the surgery itself, I was asleep for both my trial and my permanent implant. I do know that some doc like to do the procedure awake so they can get feedback from the patient, but all my adjustments/programming was done in the recovery room. However, keep in mind that my experience may be slightly different though, as my leads are in my face, not my back, and my battery is in my chest.

I was definitely sore after the trial, but it wasn't too bad. I don't think I needed to take any additional meds, or if I did, it was a very minimal amount. I was a lot more sore after the permanent implant, and did need some additional meds, but only for a few days. I bounced back pretty fast (but again, keep in mind that my battery and my leads are in a different location than yours will be).

As for scripts for pain meds, my doc didn't mind me getting a script from the neurosurgeon. I don't have a pain contract like many people do, as I use my pcp for my pain management z(although I did have one when I saw a PM years ago). However, my doc wrote the neurosurgeon a letter, and spoke with him prior to my surgeries in regards to my pain management post-op, as I have a rare genetic liver condition that makes my metabolism of pain meds "complicated," so the meds that I can take are very limited, and the dosage also needs to be adjusted.

All in all, I love my stim. It's by no means perfect (I've actually had issues lately with feeling that it is not helping as much as it used to, but then again, when I turn it off, I certainly know that it is at least helping some, as the pain gets much worse). However, if you were to ask me in retrospect whether I would still have the implant put in, my answer would be "most definitely, yes." I've had my stim for 2 1/2 yrs now.

Best of luck with your trial, RM! Let me know if I can be of any more help!

Skeye
Posted 11/23/2012 6:10 AM (GMT 0)
Again you guys have come to my rescue. I am very glad to know there have been some positive results from some of our members. I'm praying I will be one with positive results.

As far as the PM goes, I'm going to insist on speaking directly with the DR (or NP) at the next apt and go from there. If there is ANY problem, then I will have time between the trial and the permanent implant to see the new PM for an "interview" (assuming the rep does what she says she will do).

I understand I will be slightly sedated during the trial and then completely under during the permanent implant. I am going to INSIST there is adequate pain control after the permanent implant because I do not believe I can possible deal with the pain of surgical incisions (they tell me the longest will be about six inches) without additional meds to cover the issues. I do honestly hope to wean myself off of the other meds over time, with my Dr's help, of course. That is the goal, but I DO understand that it is slightly unrealistic for the near future. Perhaps in 6 months or so we can make some "real" changes, but I'd like a chance to heal as best I can before I have to deal with withdrawal issues or whatever extra I have to deal with in that area. I also understand that the trial may not work at all, but I am going to do my best to be open minded and give it the full 5-7 days before making my mind up completely about how well it worked.

Because each day is different for me, it will be difficult to honestly calculate the amount of pain relief unless I am able to get out of the house for a few hours on at least one occasion during the trial. That is when things get really out of control in the pain area now.....mornings, evenings, sleeping, and anything that causes exhertion.

Again, thanks my friends for the info. If anyone else has anything they would like to add, please do so....especially things I may need to consider before this all gets done. It's going to be a challenge for a while..

God bless!
Posted 11/23/2012 12:47 PM (GMT 0)
Can't offer any help as I am in the UK. But I just wanted to wish you the best of luck with this trial. I pray it works for you.

My opinion, for what it's worth, is that by trying this new PM you have nothing to lose. I would hate to have to deal with that awful nurse, I would be I'll every time I had to phone the office. I can only imagine she has never suffered pain in her life! I don't think you can assume that you won't need extra pain meds, I think you need to have a plan in place in case you do. It seems silly that the NS who is doing the op is not allowed to issue a small amount of meds, just to cover he post op pain. Surely your PM would understand that?

It's taking time for me to understand just how difficult it is for pain patients in the US. They really make life difficult for you, don't they. Can't you phone again and just refuse to speak to this nurse, just to make sure you have some pain meds there if you need them, and at least know it's 'legal'!

I really hope this works out for you, I will be waiting anxiously to hear.

Hugs

Jane
Posted 11/23/2012 2:13 PM (GMT 0)
Thanks Jane, I appreciate the concern. I won't be calling again though. I'll wait until I see them on the 12th. I have plenty of meds on hand just in case. I have just kept them when I didn't need to take all I had. I also have the old ones from when I have changed scripts. I don't share meds or anything like that, so I have them in the safe.

I will keep you updated, but it will be the 5th before the trial and then the 12th before my PM apt....just keep me in your prayers please.
Posted 11/23/2012 3:05 PM (GMT 0)
I have to add that my trial was on a Thursday and I went to work on Monday, the leads were removed the next Friday. Even with the leads in I was able to go about my day, which is recommended so that you are seeing how the SCS helps with your natural pain spikes. The muscular pain was bad, but just remember that pain will go away, try to let it interfere with your gauging the effectiveness of the SCS.

I am almost 5 months post op from my SCS. The upper inscion is 3 inches and that area is pretty good pain wise. The battery unit area is about 3 inches for me as well, that area is a bugger though. The rep, NS and PM dr have all said that due to my weight (lack of proper padding) that I may have more irritation than someone that has some fat. Never thought my weight loss would cause things to be more difficult,lol. It is getting better but not sure how far that will come.

So far I have not been able to decrease any meds, in fact I have had some recent increases. Again, as I said and Skeye mentioned also, sometimes I feel like the SCS isnt doing anything to help, but if I turn it off for a bit the baseline pain levels come back.

My main gripe with the SCS is that in order to run, jog, do Zumba I need to turn the unit off due to the jarring (even though the leads are anchored, scared in place and I have been released for everything). During those activities the spinal cord moves and comes closer to the leads causing the increase in stimulation, sometimes very painfull. This even happens when I do steps. This was something they said would decrease over time. However now they are saying this is typical and probably wont change much. Maybe someone farther out can address this????

Just know that we are all here for you. Whatever you need! Take care.

Shell
Posted 11/23/2012 3:31 PM (GMT 0)
I don't have any experience with the SCS but it looks like you got a lot of good thoughts/suggestions about it from others:)

Ultram (plain Tramadol) or Ultracet (Tramadol plus Acetaminophen) should ABSOLUTELY be tapered down slowly as it can cause seizures if stopped abruptly...

I would be asking your Dr. why they need you to be off this medication before the surgery?

As others mentioned...I would be contacting your Neurosurgeon and your PM Dr. directly to MAKE SURE they speak with one another about how best to handle your pain management...

Before my last cervical fusion which was very complicated (8 hours throught the front and the back)...my Neurosurgeon actually had me take MORE of my pain medication the day before the surgery and the morning of. He believes the less pain someone is in before/during/in recovery of a surgery....the better they will recover and get better faster...

I was actually loopy the morning of my surgery where my family, friends, and even my Pastor was all standing around praying with me before I went in...I was on a daily dosage of 60mg of Oxycontin and he had me take an extra 20mg that night and then when I woke up that morning....

Anyway...my point with sharing this is that I would be questioning why they want you going off your Ultracet...and make sure that if it's a must...then you taper very slowly!

I think you are right to demand that your pain management be worked out with the Drs. before either of these surgeries..

I will certainly be praying for you and that this works well to help lessen your pain...

Hugs (( ))
Posted 11/23/2012 3:57 PM (GMT 0)
Hi RM I sure hope the trial works and gives you the results you are wanting. You will never know until you try it out. Oh, I tell you, that nurse must be one miserable person to be as hateful as she is all the time. I just don't know how you have held your tongue. I have a big mouth when it comes to something like that. She is so unprofessional.

I think that is real interesting what the tech told you about the other group. Its sure something to consider. I would wait till after the trial to see it goes and then schedule an appt. You never know this may well be the PM dr you have been looking for.

I remember other folks that had the implant done and they said the same thing Shell said a lot of muscle pain. It was something that never entered their mind and they just were not prepared for it, took them by surprise. They complained of that more than anything.

Keep us posted on things....Susie
Posted 11/24/2012 12:11 AM (GMT 0)
Hi RM-

I had my trial done this past June at the VA hospital. They used the light sedation with versed and I don't remember anything until they asked me about where I felt the device working. The only real pain I had with the trial was my lower right side just above my hip was sore. Kind of like a slight muscle pull. They told me while in recovery that was normal. It did last the whole time I was using the trial unit, but completely went a way when she removed the leads.
I am still on hold for my permanent implant due to blood issues. I was supposed to have it done on 11/11/12.

Hope it works great for you! It sure helped my rib pain on both sides and can't wait to get the all clear to have it permanently implanted. The buzzing sensation was way better than the pain.

Take care,
Bill
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