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Leads or paddles ... How do I decide? Please help - lots of questions!

Hi.

I have come to the end of my pain management journey and have now been told by both my PM and my NS that the only course left for me is a SCS.

A little background ... For some reason my body takes a very long time to metabolise medication. This means that I can only take a small amount of opioid meds before my body gets overloaded. It reacts by giving me massive migraines that can't be treated. It also means I can't take meds such as Lyrica or Gabapentin because even a children's dose of the medication is too strong.

Anyway - my problem is that I have to choose between the two types and I have no idea how to do that. My PM will do the trial so that's not a problem. My PM has suggested I choose the leads because they can be removed if there is a problem. My NS does the paddles. I am seeing both of them next week.

* What are the the questions that I should ask?

* Why did you choose the path that you went down?

* If you got to choose again - would you make the same choice?

* Is there anyone out there who has had major complications (apart from infection) with either type?

* For those who have had infection - have any of you ended up with permanent damage as a result?

I know I am asking a lot but I am so confused and conflicted right now. I haven't had a good run with my surgeries. The things that have gone wrong are virtually unheard of so both my NS and I have come to the conclusion that I need to be prepared for the unexpected before I have any further surgery done. (My husband thinks I have the luck of a Lottery winner - just at the opposite end!)

Cheryl
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1

Comments

  • RickilalasRRickilalas Posts: 559
    edited 05/08/2013 - 7:41 PM
    Cheryl
    This information is from my experience getting a lumbar SCS and having both lumbar and cervical trials.
    I am a lot like you also what can go wrong will go wrong but we have to keep trying.
    When you have your trial they will use percutaneous (perc)leads which are slipped up into the spinal canal and left floating in a way because they are not attached. When you get the implant they can go a couple of ways. They can use perc leads that float which is not good for coverage and they can migrate very easy which is not good. They can do small laminectomys and attach perc leads so they stay in place. We have one member who had it done that way and she has good results. My lumbar unit was implanted and both my PM doc and my surgeon wanted paddle leads placed with laminectomys for me. They both stated they had better luck with paddles staying in place. If you go to a SCS company like medtronics web site you can find pictures of the leads not a lot of difference. Its my belief the position of the leads and how they are attached is more important then the leads themselves

    I am 2 1/2 years out on my lumbar implant with paddles and no problems and great coverage.
    I was told by my PM that some PMs will do the perc leads and the implant without any laminectomys ( I hope I am spelling that right) so that they keep the money in house without thinking about what is best for the patient. I don't know about that for sure but my PM did the trials and my spine surgeon did the implant. I was not able to have the cervical implant because there was not room for the leads to be placed in the normal way. Maybe some day I will get it done.

    Infection can be a major problem. Mel on here had a thread when she was having her implant. She had a infection which she was fighting and we have not been in touch , I don't know how she is doing. At one time they thought I may be getting a infection.
    They hit me with major antibiotics and said if I did have a infection in a few days they would have to remove the complete implant and leads then wait for six months to a year to try again.
    VERY important for a trial and implant to keep it dry and clean until fully healed

    I would ask if needed could the paddles be removed as easy or as safe as the perc leads could be removed. I can only think of two reasons this might come into play. One would be if it didn't help and or became infected later and two would be for test like a MRI.
    The only draw back I have had from my implant was no MRIs. Everything was going good then I had a stroke and had four or five CTs. Then spine acted up and I needed three CT mylos had surgery and then had to have three more CT mylograms.
    Way to much radiation I have been told and I have to wait awhile before anymore can be done. If I knew this ahead of time I would have passed on the CTs after the stroke because recovery was quick and no side effects.

    This is a lot for people to make a decision on in a short time period. You have to trust your doctors as to what is best for you.
    Then the trial has to work for you also. I like to say this is a tool to help but it is not a cure , many get good to great results and several do not. My personal opinion is that the skill of the surgeon and the skill of the rep who will do your programing and reprogramming can make or break this chance of pain relief.

    Another question would be what brand and how good the support from the reps in your area is and also what is the cost of a replacement remote control. My company has given me a remote for no charge. We have been told on here some company's charge $1200 for a remote replacement or less for a repair. Seems like a lot to me. I can meet a rep and get one free or they will mail me one when needed. They are almost like a TV remote control and will not last forever.

    Last comment
    On the infection issue I was told what makes it a problem is a infection can get onto the leads and travel right into the spinal canal making it dangerous and hard to treat.. My surgeon did my implant and sent me home from the hospital as soon as I was awake. I wasn't happy about it, most stay one night but he wanted me out so I did not get a bug..I understood it after he explained it.
    Good Luck. I hope it helps you. I can't even think what my life would be without pain meds and my SCS.

    Feel free to ask anything else or PM me. The trial is simple read the post I left for Ms Pixie and the post for MelW plus under this thread other are many more post with really good information. I will not kid you the trail is uncomfortable for less then a hour but the implant is worse then what the doctors say. Plan on doing nothing but laying in bed the first five days after the implant in pain. I hope they can find some kind of pain meds for you for that. I hope more chip in here so you get more information without over loading you. Take your time and think it through.

    Rick
  • CherylCCCherylC Posts: 185
    edited 05/04/2013 - 11:09 PM
    Thanks for all of the information Rick. I think there is a lot to sort through. I take heart from the fact that people like yourself are willing to share with me. I am hoping that I will be able to come up with a list of questions to take to both my doctors later in the week.

    Regards
    Cheryl
  • lbfrndflllbfrndfl Posts: 38
    edited 05/06/2013 - 8:35 AM
    Just my experience, but the leads can be an issue if you are active, they can move or in my case even break. After 9 years of having leads replaced 3 times I switched to paddles sewn into my spinal column. Much more invasive procedure but I have had no problem with them since 2008. Whichever way you go, good luck.
  • RickilalasRRickilalas Posts: 559
    edited 05/06/2013 - 2:08 PM
    Your post on leads was the point I was trying to make.
    Perc leads left floating are going to be a issue. We have a member here that had the perc leads but her doctor also did laminectomys to attach the leads which has worked well for her. She travels and plays golf.
    No matter what the paddle leads must be placed in with laminectomys and attached. This looks like the best way to go for me for stability and constant coverage.

    Then again no matter which leads you get you must be careful and allow them to scar in for better results in the long run.

    I hope your new ones work out. Oh and yes the surgeons skill and the extra length of leads they place in and loop at pivot points helps also
  • The leads aren't left "floating" in the spinal canal. Percuntaneous leads are anchored in multiple locations to keep everything in place. The key to implanting percuntaneous leads is to make sure a proper restraining loop is used and the patient refrains from strenuous activity for 3 to 6 months after the surgery so the leads can properly scar in place. I have had my Medtronics SCS for 4 1/2 years now. I have percuntaneous leads and they haven't moved at all since my implant.

    I'm very active. I do gardening, mowed the lawn on a couple of occasions, play golf, and have even done Zumba with my daughters.

    Either lead will do the job. One big difference between the leads is that the paddle leads will consume less power because the signal is directed in one direction where the percuntaneous signal is 360 degrees.

    B.
  • RickilalasRRickilalas Posts: 559
    edited 05/07/2013 - 12:08 PM
    Back
    Some people have had perc leads left floating. These were done without a surgeon.
    Some times leads are called surgical and non surgical leads because of the way they are implanted.
    Your leads were placed with laminectomys right?
    I was using your example of perc leads being placed and anchored in. If I remember right you had perc leads with lamenectomys that were stitched in place so they did not migrate before scarring in right? l have met people that used loose or what I call floating leads that were placed without laminectomys and can only be anchored where they enter the spinal canal. They have not had good results because of migration.
    My point was either lead used should work if anchored at the site by means of laminectomys
    Are you saying I have it wrong? Show me if I am. It seems some times no matter what I say, you do not agree with me. My question would be if no laminectomys are done how could a lead at the electrode end be attached and not migrate?

    I gave three examples of the way leads can be used
    Perc leads floating because they are only attached at the place of entry to the canal. No laminectomys done. Just like the trial leads are placed.
    Perc leads with laminectomys so leads can be attached at the electrode area. ( perc leads but also called surgical leads when placed with surgery and stitched in place at he electrode end)
    Paddle leads placed by laminectomys only and attached in place.

    If I understand you, you are saying perc leads will scar in if not attached at the place where the electrodes are, at the end of the leads. How?

    Cheryl
    Has you can see there are many opinions on his. I did a lot of research before I made my choice of going with paddles. My surgeon was very heavy into the trials and test of SCS units before they were a regular treatment for pain relief. I was part of a trial of bone growth stimulators with this same surgeon before insurance covered them. The results were all good. The VA and most insurance co do cover them now.. My surgeon spent a lot of time with me on both SCS stimulators and Bone Growth stimulators which both turned out with very good results. He did trials with several company's and does not recommend one over the over when asked which is best. He did install a medtronics scs on me when it came down to it but I truly think the BS is just has good but it appears the remotes are costly at a later date. My PM wants to try a BS scs on me with leads at another level to see if it would cover my left foot better then the medtronics does. To me it would not be a fair comparison because those leads will be at another level which changes everything.
    Plus I will not give up my medtronics unit because it covers all my pain from the waist down except for my left foot which could be caused from issues above my paddle to start with.

    Just spend time and ask your doctors what they feel is best for you. We have to learn to trust them. The information I relay is from my experience and the many conversations I have had with my doctors and reps. Yes I did meet with reps from other companies also. If my doctor did not make a choice for me I would have used medtronics because in my case their reps just seemed to have more information they would share with me.

    Another question to ask is how many electrodes will they be using. 16 was the most when mine was done. That could be two leads each with 8 electrodes or one paddle that has two lines to it but on stick with 16 electrodes evenly spaced on it. Some times doctors want to use a paddle but can not because there is not enough room for it. There are smaller paddles and leads with fewer then 16 electrodes but the more electrodes the better chance of getting better coverage and the more programing the rep can do.
    A example of this is on a paddle or lead they can change one electrode to negative or positive polarity and then mix them up using two or any combination of the other electrodes. I did not do the math but I was told with 16 electrodes they can make aprox 44 million different combinations. This is why your rep who will program you is soooo important.
    Again Good Luck and I hope we don't confuse you any.

    Rick
  • I didn't have another Laminectomy to implant my leads. My leads are at the base of my thoracic and the top of my lumbar spines. The doctor who did my implant is a pain management doctor. I've had laminectomies all the way up to my L3 vertebrae which is where my leads are anchored in, right below the L2 vertebrae. What happens after the surgery is scar tissue will form all around the leads holding them in place. That's why they do an impedance check right after surgery and several months later to gauge how much scar tissue has built up around the lead. That's the reason why it usually requires so many programming sessions in the beginning to get things right.

    B.
  • RickilalasRRickilalas Posts: 559
    edited 05/08/2013 - 7:47 PM
    Your making my point. Your leads are attached if I understand you at the entry level to the canal and not at the end of the leads where the electrodes are. Correct ? If so they are actually floating or maybe a better word would be laying in place until they scared in. The loops and attachment you mention sounds like the loops outside of the spine between the spine and the unit. Yes extra lead material is left there for motion. I am talking about motion only inside the canal and floating inside the canal.
    My surgeon and PM stated that if they were not attached ( the electrode end) that they were floating.
    Now I know the area is tight and just tissue inside the canal may hold them in place until they scar in.
    My paddle was placed with laminectomys and the paddle itself was stitched in on two levels to help it not migrate. Paddles done like this still have issues and need reprogramming several times until full scaring in just like yours. Even attached movement can cause them to move enough to throw off the programming. It was about a year before mine were really set.
    Its interesting and in no way anything against you but before doing my SCS I had several PMs in a pain clinic, and then moved on to a PM starting his own practice and my spine surgeon all said when a PM does a scs implant with perc leads he is doing it for him not the patient. $$$$
    All of them from different places said the normal procedure for us is the PM does the trial with perc leads then a surgeon does the implant with with surgical leads or a paddle. Then the leads or paddle are attached just below the electrodes and above the electrodes to hold them in place. It looks like most of the members here have had a PM trial and a surgeon do the implant.
    If it wasn't important I wonder why there doing it this way.

    My cervical trial was done with perc leads like all trials. One exception was they could not get into the canal any where above my lumbar area. My leads went from L2 L3 to C3 C2 area. They were stitched in at the lumbar entry point. Would you say these are attached or floating in that aprox. 30 inch area.
    I hope you understand what I am saying. This also makes a large difference in recovery time.
    Perc or non surgical leads are simple like the trial. Paddles require laminectomys to attach which
    changes a simple procedure to a almost major surgery. In my case the first two laminectomys were done and the paddle placed, a test done with coverage not being good. They decided to do two more and move the paddle up which gave me coverage from the waist down and also some lower back coverage. This is not a easy surgery and takes time to get over but very much worth it.

    I see the difference between the ways ours have been done. I also wonder which unit you have.
    I am about three years past implant I use mine pretty much 24 hours a day and only have to recharge
    around every two weeks. I think I read where you have to recharge every three to four days, is that right.

    Regardless of the differences I am happy that yours works for you.
  • Did you see the doc yet and get a date?

    Good luck

    Rick
  • Thank you both for all of your help. It has been good to read thoughts from both perspectives and has given my a lot to think about.

    Rick - am going to see my NS this afternoon. Have a lot of questions for him. Not likely to get a date straight away regardless of which method I choose but at least will be able to get moving on the approval process. Will let you know how it goes.
  • RickilalasRRickilalas Posts: 559
    edited 05/09/2013 - 3:40 PM
    CherylC
    The wait for my insurance co to approve my trials was a joke. My insurance co sends these out to contract doctors to review and find any reason to turn it down. My lumbar was first the doc turned it down and said I needed to have PT, injections, several months of pain management and or surgery before a implant could be considered.
    We sent back in again what was in my file on his desk the records that showed many PT sessions over the years, to many injections, years of pain management and at that time three spine surgeries.
    He had to give in. Took about six weeks. Trial went well and then we applied for the cervical trial
    The same doctor turned it down with the exact reasons for the lumbar non approval . My PM had to resubmit everything again and remind the doctor that we just went through this weeks before.
    Approved in less then three weeks this time.
    I at that time made a complaint to my insurance co and at least they approved the implants
    right after the cervical trial.

    You may be asked to go to a psych evaluation. Some are waving it now but most are still having one. They just want to make sure you know what this is and that you will be having something implanted in your body. Mine was 45 mins long and did not even get into anything mental.
    Others have been given a full evaluation. Either way do not worry about it Just blame Mom for everything LOL

    Good Luck I hope the SCS helps you. Back and myself at least agree that it can help.
  • Saw my NS yesterday. Talked a lot about the risks (some are very scary). Have decided to move forward with the approval process - I can always stop it if I decide I don't want to do this. Next step is a cervical and thoracic MRI to make sure there is room for the leads. NS and PM are working together to make this happen. Apparently I will need to have one more doctor on board.

    NS wants to take a conservative approach and go for perc leads with the view that he can always go in again and switch to paddles if there is a problem. Apparently PM is pushing for me to have the paddles straight up (funny - I thought they would be the opposite way round). Anyway - I don't have to decide straight away which is a relief.

    Apparently they will keep me in the hospital for a week when I have the trial. Here in Australia there are not happy about letting you out in the real world with "wires hanging out of your back" (surgeon's words).

    Next step is to get an appt with my PM to discuss the trial.
  • Hi
    Us here in the States don't worry about wires sticking out LOL. We just attach a Xbox. Where the wires come out is where they also place the test unit and cover everything up pretty well for safety. Infection is dangerous and they told me to keep it dry and clean. I did great except for the last day doing things I knew I should not but wanted to test it good. It is odd how the differant countries handle the same medical procedures. I hope the end result is the same but it makes me wonder why we all do not do it the same. Just interesting to me. I was sent home after my implant just hours after surgery with four laminectomys . That was too early but five days seems so long. I hope its five days that you can get up and around to see how it works in real life. Are there any infection issues in your hospitals?

    That is a interesting choice your PM made in my mind but the system may all be differant where you are. Its also funny they were giving you a choice before they know what you have room for. Not having room for a paddle is a very good reason for perc leads.
  • Laughing at the thought of you attaching an Xbox ... Gives a whole new meaning to the Xbox Kinnect!

    Am hoping that during the trial I will be in a position to check out the things that give me the most grief. It all depends on which hospital they have me in for the test. If I am in the neurosurgical ward at Greenslopes there will not be much of a chance. If they transfer me to the rehab centre at St Vincent's I will be able to use the Physio equipment and the test kitchen to simulate my normal experiences.

    Re the choice ... I'm not sure whether I will be the one who makes it in the end. With my history, both my NS and my PM want to err on the side of caution. Trouble is they have not yet agreed on which way will be the safest and most effective for me. I guess it will all become clearer once we have more information.

    Can't believe they sent you home so quickly! This would never be an option for me because they can't send me anywhere until they have my pain meds under control. This has proved to be a very tricky thing in the past and usually has me stuck in the hospital for anything up to 2 weeks at a time. I have an extreme sensitivity to opioids and they have to work towards getting a balance between the amount of pain I can stand and the amount of meds I can tolerate without overdosing. So far I've managed to overdose on morphine (last surgery) and OxyContin (the one before that). It really sucks because my body doesn't like to metabolise drugs - that means things can go really bad, really quickly.

    Re infection ... My NS and PM both like to give a course of very strong antibiotics straight away so as to nip any potential infection in the bud before it gets a chance to take hold. They also want me to be monitored closely in case anything goes wrong.
  • Hi
    I posted another note for you the other night and it looks like it did not make it.
    Your right the doctor should make the choice of leads for what is best for you.
    I understand why the PM wants a paddle and the NS wants leads for you.
    He knows what you go through and wants to lesson what ever he can.
    In that case the perc leads would be the easiest on you for recovery and they could
    be replaced with a paddle if needed . The paddle implant is pretty painful.

    I do not know if you guys have issues with infection in the hospitals but we have had a few problems
    with some that do not react well with the antibiotics very well. In a way I was not happy going home
    Like that but in another way I am glad he did it to avoid a possible problem.

    Well I hope this works for you. I am surprised they even talked about leads before a MRI to see what room they have. If you have not already done it go to one of the sites like medtronics and check out the leads. They have pictures of them just so you have a idea.

    Good Luck
  • Approval from my work cover insurer hasn't come through yet but the PM gave instructions to book me in for the trial. He said we could always reschedule if we need to but, given the fact that I have no base line pain control, he would prefer to get me in as soon as possible. Paperwork from PM arrived in the mail today. The consent form is very confronting - it lists the risks in a way that's pretty hard to ignore. Keep looking at it but can't quite bring myself to sign it yet.

    Really wish my husband could be home with me right now. He works on the other side of Australia and can't get back until July. Not sure I can face going through this procedure without him by my side.

    Pain levels have been through the roof this week. On a roller coaster ride between Endone and its associated side effects. Between the pain in my back/legs and the opiate triggered migraines, life is pretty hard at the moment. Don't know how much more I can take :(

    Feeling very vulnerable at the moment ...
  • RickilalasRRickilalas Posts: 559
    edited 05/16/2013 - 2:40 PM
    CherylC
    The possible complications that can happen sound real bad. The chances of anything is real low.
    It is a surgery but the trial only places leads in your spinal column . The chances these leads could do any damage is very low. I would bet that the chance of being in a car accident going to the hospital for the trial would be way higher then the procedure itself.
    What is your main concern?
    When clinical trials of any procedure are done they have to list any and everything that happened during the trials if a trial had 200 people in it and one had a headache they list headaches has a possible side effect.
    Infection is the worst side effect I have heard of anyone having. Your in the hospital where they can watch you and its my guess this is why your country does have you stay. Even with a infection it should be caught quick enough to be dealt with. Worst case is infection with full implant which could put a person in the position that the implant and leads would have to be removed and then treat the infection.
    Again figure out what bothers you and ask the doctors office to explain the risk to you and the chance of anything happening. You should have a rep you can call also to ask anything also. Of course their answers may be very one sided.

    For me the benefits of this procedure by far outweighs any of the side effects and in your case not being able to use the regular pain meds makes this the last option doesn't it? Do you or have you been old you have any spinal cord damage?

    Rick
  • Hi Rick

    That's a question that's been going around and around in my head. Best I can figure is simply fear. For each one of the last 5 procedures I have happily gone in believing that everything was going to be great when I came out the other side. Sure - I knew that there would be lots of pain to deal with but I truly believed the end result would be worth it. Somewhere along the line I have lost that confidence.

    The things that have gone wrong have been virtually unheard of and definitely were not on the list of possible risks. The cage that was put in during my TLIF on L4/L5 (Nov '11) was a tight fit but somehow it managed to slip through. It caused a lot of scar tissue in front of the spine and needed to be removed and replaced. The plan was to do that via ALIF (Oct '12) and at the same time fuse L5/S1. Scar tissue caught my aorta and so after tearing the aorta twice the vascular surgeon had to give up before he could clear a path for the NS to put a new cage in. The old cage was removed and a little bit of the bone was cleaned up in the hope that some bone may grow so now I have no cage and no bone - just a couple of rods and some screws holding it all apart - God help me if the hardware fails! A recent myelogram has also shown that the new cage at L5/S1 is sitting slightly off centre and causing a minor 'disc' bulge.

    Even having the myelogram caused some very unexpected problems in that the dye caused the lower half of my body to twist up so badly that I thought my legs were going to break. The doctor said he has never seen this kind of reaction before. Tha little episode had me in the hospital for a week and on crutches for nearly 6 weeks.

    The last two surgeries have also seen me almost die from drug overdoses because my body doesn't metabolise the drugs properly so it builds up on the system too quickly. I love the morphine - really cuts the post op pain but apparently it doesn't love me in the same way :(

    My NS has come to the conclusion that I attract risky outcomes and so now he no longer talks in terms of 'minimal risk'. instead he says "for most people the risk would be xxx but we are mot talking about most people'. So now we look closely at the risks and give thought to how I / we will handle it if the risk materialises. After the discussion we had last week about wonderful things such as 'epidural heamatomas' and the like it is a little scary to sign off on something that could very well cause one.

    Re spinal cord damage - thankfully no. Just pressure on the nerves, nerve damage (courtesy of TLIF surgery), dropped foot, and uncontrolled pain.

    Like everyone on this forum - some days I go down and find it really hard to get back up again. Yesterday was one of those days. Today I am taking some affirmative action so I am feeling a little more in control.

    Saw my GP this morning and have been referred to a different NS for a second opinion. I just want to make sure that there is nothing mechanical we have missed before taking this last step. I even managed to get an appointment scheduled a couple of days before I see my usual NS again. That way I will at least stop second guessing myself all the time.

    Have decided to still go through with the trial though. Just will hold off any final decisions until I have got another opinion.

    Thank you for talking to me. I keep getting stuck inside my head at the moment and its a scary place to be.

    Cheryl




  • RickilalasRRickilalas Posts: 559
    edited 05/16/2013 - 7:03 PM
    Cheryl
    OK I can understand your fear now. Its always good to get a second opinion or third or fourth.
    I went to a nuro to see what could be done for my lumbar pain. He looked at my X-ray that I brought in and in less then five mins with no questions to me he said I needed surgery right away.
    He went out to the nurses station and I heard him tell some one to schedule me for surgery with
    Dr. X. The person he was talking to said he isn't available he's on vacation. The Dr then said no he is coming back on Saturday and can do me first thing Monday morning. Now I was thinking this is not right this nuro sees me doesn't ask questions doesn't want to try anything but schedule me with another surgeon in their practice who has not seen me. I left and said I would get back to them.
    My second opinion took several months to get in. It was at a teaching hospital so a resident Dr. did the work up and all the paper work. I was with him for a hour then he checked my reflexes left and got the
    Ortho surgeon. He comes in and agrees I would probally need the lumbar surgery but he wanted to try PT and meds first. Then he asked me what was wrong with my neck. I said nothing that I knew of.
    By just looking at me he felt something was wrong. He did x-rays of my whole spine that day then ordered PT and all three areas of the spine for MRIs. My profile pic is from that MRI.
    His office calls and says come back in and stop PT. He said I did need surgery ASAP but for my neck not my lower back. My cord was so compressed its a wonder I could walk.
    OK long story but just wanted to show why second opinions are a good thing.
    After surgery my surgeon told me two things that really bug me. 1 was if I had waited one to two weeks more I would be paralyzed. 2 if they did my lumbar surgery first when the tubed me for the airway they would have paralyzed me then. I believe in second opinions.

    In your case during the second opinion I would ask about the troubles you had. Is it your anatomy is
    different or could it be skill that caused your issues. Maybe it was just the procedure they used on you
    that made things happen. Its not normal. I am a strong believer in the old fashioned way of doing fusions. Just looks to me that the issues increase with the newer procedures. I have a friend right now that has two of three levels which failed to fuse with a newer procedure. Now they need to go in and fix it the old fashioned way.

    I did not have the problems you had but none of my surgeries went the way they should have either.
    We have to pick the best surgeon we can through research and any means then we have to put our trust in them.

    The SCS trial is nothing like your prior surgeries. Its fairly quick and sometimes its just uncomfortable and then a few monuments of strong pain and then its done. In the next few days you will know if its for you or not.
    I really see why your one doctor wants the nonsurgical leads now to avoid any problems.
    This trial will probally only take about 30 to 45 mins to do with no problems and again nothing like a full surgery.
    Ask around and make sure these doctors do several SCS units and your not one of the first for them.
    I strongly believe the success and failure of the SCS program is by the experience of the doctor and the programmer.
    Its a great tool when it works.

    Take your time other then pain there should be no rush on this.

    Rick
  • You were so lucky that the ortho picked up on the neck issue. Maybe fate put you in his hands because that's where you needed to be.

    Both my PM and my NS are highly recommended. My NS is still scratching his head as to why things went wrong - up until me he was able to talk about risks and honestly say that, while he had seen some things happen with other doctors he knew, they hadn't happened with him. He tells me I broke his perfect record. He would like nothing more than to fix me but each surgery brings more risks. I trust him and think he is doing everything he can for me. I just want to make sure we aren't missing anything. Another set of eyes may be able to see something that has been missed.

    My PM did a series of RFAs on me prior to my first fusion surgery and has done many SCS implants. I know I am in good hands. He is one of the top PMs in Brisbane. I just wish there was a medication based solution that worked for me - then I might not be here looking at the end of the line. I read all the stories on here about the meds people take and can't believe I envy everyone - I mean, who would wish for a life filled with opiates?

    Maybe part of my problem is coming to terms with this being the end point. Up until recently I believed that I would get better, that I would be able to walk without a brace and stick, that I would be able to go back to work (I loved my job!). In the last couple of weeks I have been hit with some reality checks that have been pretty hard to swallow.

    I wish my husband was home. He doesn't understand a lot of what I am going through but I always feel safer when I am in his arms.

    Once again Rick - thank you for taking the time with me. Talking with you is helping me to sort out the mess in my head.
  • Hi
    Anything I can do to help just ask.
    Are you under a time frame or could you wait until your husband is home?
    Its a hard decision for you and no one can make the choice for you. You do sound like you have real good medical support and they are looking out for you. Your lucky too.

    Did they ever mention a pain pump. They use a dose about 1/300 of a oral does. Could you handle that.
    I would start with he SCS but the pump would be the last chance item unless they can fix what is causing your pain.

    You are a very good example that we are all different, some more then others but everything works different on many of us.If you could I would wait for your Man if not I would try the scs because it may help you with the pain and stay drug free. I would not be here if I could not have pain meds. I have a high tolerance and they already worry about how much it takes for me.

    You know yourself better then anyone else. Go with your heart.

    Rick
  • Approval from work cover came through so I am having the trial done next Thursday. Would really like my husband to be home but have to be realistic. If this works then I will need more surgery to do the permanent implant. It would be better to have him home for that. He has had so much time off over the last 18 months so he could look after me that we don't want to push it too far. He is on standby though in case anything goes wrong.

    NS mentioned the pain pump but said its not an option for me because of the intolerance to drugs. He thinks I would end up in the ICU within about 12 hours.

    Did the SCS help you to lower your reliance on meds?

    June is looking to be a pretty horrid month ... 5-7 days in the hospital for the trial, a couple of days at home then another two weeks as an inpatient in the rehab / pain management program. Really getting over the whole 'hospital' thing!
  • Cheryl
    Glad to hear your going for the trial it isn't a real bad procedure to go through.
    My case is maybe different then yours. I damaged three or four nerve roots which may or ,any not ever get better. I also have spinal cord damage at C6,7 which can cause all kinds of issues.
    When I first had my scs implanted I did cut way down on meds but over the years and another
    lumbar surgery my pain meds use is higher . The combination of the scs and the meds gives me a life.
    I do know of one woman who the scs helped her stop all pain meds. It is possible.
    I thought they may have considered the pain pump with you because the dose is so much less then oral meds but maybe even a small amount is to much for you.

    I hope the trial helps, you should know in the first few days.
    Dont stress out on the implant if they do not use paddles its almost like your trial with the exception of the pocket they make for the unit to be implanted in. Just a short incision.

    Good luck
    Rick
  • It is my understanding that the prec leeds can be attached at the "top" and sometimes even along the length as they withdraw the "needle" used to place them.
    I am told this is done with clamps that attach it to the membrane that surounds the spinal cord. I belive it is called the facia.MAYBE other types do not but Medtronic ( wich is the one I searched as it is the one I am getting) does.Or aty least my surgen assurs me he does:)
    I just watched it on you tube the other day :) I bleive the clamps slide up the leed to be attached.To sugest they are just free floating in the epidural space it not accurate.At least not from the info I have been able to find :) http://professional.medtronic.com/pt/neuro/scs/prod/injex/features-specifications/index.htm


    Placement and allowing the body to encapsulate the leeds seems to be MUCH more important than the type of leeds used.

    Also they now have perc paddles that go in rolled up, kind of like a breast implant that is installed via the armpit.

    Jester in Ja's court :)
  • RickilalasRRickilalas Posts: 559
    edited 08/14/2013 - 8:04 PM
    Cheryl
    Did you ever have your trial.
    Results?

    Rick
  • Hi Rick

    Trial was a success (sort of). Leads migrated as they turned me over so coverage wasn't great but there was enough to convince me this could help. St Jude Eon Mini with paddles inserted at T8/9 was done July 24. Coverage is from the base of my spine down and is helpful but completely misses my biggest problems areas in my lumbar spine and SIJs. Neurosurgeon wants to add another paddle and I am considering it but, given the problems I have with pain an agreement post op I am not quite ready to face another procedure just yet.

    Seems my usual run of luck is continuing ... Unit was working fine until a couple of days ago. Have had a lot of burning from the leads but just put that down to healing. Now I am sure I have either a loose or a defective lead. Unit is not working properly and has now started giving me random severe jolts that are so bad they almost drop me to the floor. I have also discovered I can generate these jolts by just lightly tapping the IPG with my finger. Am seeing the rep on Monday to check it out.

    Have finally settled on a better med routine though. Turns out that Fentanyl is my medication of choice. Am on 25 mcg patches with 200 mcg lollipops for breakthrough. They also used Fentanyl at 500 mcg per hour in my PCP post op. The result was much better. Actually got through recovery without any life threatening episodes - definitely an improvement!

    So far I can say that the SCS has been helpful. I can hold out longer before needing the breakthrough meds but I now realise it isn't going to get me off them. I was really hoping that it would help me improve my ability to walk but that's definitely not the case. In fact when I have it on, unless it's turned down so low as to be useless for pain relief, it interferes with the connection between my brain and my feet so it has actually made it harder to walk. When I mentioned this fact to my pain management doc he just said - "yeah, that can happen" - great! Am hoping that my brain eventually gets used to it and sorts it out. Until then its a combination of walking stick, crutches or wheelchair depending on the day, the distance and the terrain.

    Cheryl

  • RickilalasRRickilalas Posts: 559
    edited 09/02/2013 - 5:26 PM
    hi Cheryl
    Glad to hear you got your implant. Your a lot like me if something can go wrong it will.
    Oh well not much we can do about it.
    It sounds to me that maybe one of your leads is not tight. I am not familiar with your unit but many the leads plug in and then a set screw secures it in place maybe a loose screw?

    I do think the added lead may help you and it would be much easier then the original surgery.
    Odd coincidence I am looking at adding a lead also but my unit is full so it will mean another unit. I hope to find out this week on Friday if a ok for a trial was given.
    I have full coverage that can be adjusted from my ribs to my feet but the leads high in my back about T7 have started to bother my left ankle and over stimulates it and backing down the adjustments we can not eliminate that ankle so a possible.second unit that would have just one small perc lead which will probally migrate each year and need replaced would be placed in the lumbar area. I hope to get a trial on this. It sounds good but I need to see it work before I think much about it. So your plan on a second lead may be a good one after all.

    I would wait and see how this goes for awhile because the coverage will change over the next few months has everything settles in and scars in. Remember you will need a few reprogrammings before this is done.

    With your med issues this is important therapy for you and I hope it works out.
    It is also good to see you can do the patch and you can go way up on that if you need another small.surgery. I use a 75 still even with the SCS.

    Well Cheryl good luck with this and keep me up to date, looks like we are on the same road now. I wrote a post before the weekend but evidently it didn't post.
    Talk with you soon

    Rick
  • TerriPTTerriP Posts: 303
    edited 09/06/2013 - 9:28 AM
    they are all anchored in. The recovery is not bad, and it's working great good luck
  • Saw the rep about the problem with the unit. Told him I could replicate the problem by simply touching the IPG and his response was "well don't touch it then" - helpful ... NOT!

    Neurosurgeon ordered X-rays to see if anything showed up but nothing did so now I'm heading back into surgery. Not sure how big it will be - could be a matter of just replacing an extension lead or could end up with replacing the whole unit ... Hope my run of bad luck changes and its just something small - really don't want to have another big surgery at the moment :(
  • Cheryl
    It's so unfair that you need to go through this. The rep made a statement that doesn't surprise me. They are doing so many of these now that they can't train help quick enough..
    These reps need better training. I can't believe if you can touch it and cause the problem they would even think of leaving it alone. Something is wrong with the unit or the leads where they connect. I Hope they get you taken care of and soon.

    Terri
    Sounds like yours is doing great. I Hope it helps you. Mine has been great but I have a new problem with a ankle. In the morning I am going to trial another unit from another company to compare the coverage. This has been hard to set up but it's getting done. I will have more to say later.

    Rick
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