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Posted 4/13/2008 3:35 PM (GMT 0)

New Developements !!!!

When I arrived for the trial stim, mt blood pressure was through the roof and apparently stayed that way during the trial. After completing the trial, I decided to have the problem checked and was advised by my family doc not to submit to any surgical procedures until he had my blood pressure under control. When I went for a consult with the pm doc, he acted as if my blood pressure was not an issue and we should continue with the procedure. In addition to that he said that after the stim placement, no medication would be prescribed for break through pain. When I reminded him that the stimulator only helped with 30 to 40 percent of the pain, he acted as though I was some kind of dope hound even though I have never had any narcotic pain medication from him. I am somewhat perplexed at his behavior and maybe my behavior in response to him. My family doc says I need a 2nd opinion. My adjuster with WC advises that if I have concern over the tratment plan, they would pay for the 2nd opinion. So, looks like my trek just got considerably longer. I am sure I am not the only one out there who has experienced issues with doctors, but it sure seems that I have had my share and someone else's. Since I am also experiencing dull aching in my left leg, left arm and left side of my head, I will see a neurologist. As for the other issues that started all this, I will find me a pm doc for a second opinion on the diagnosis and treatment plan.  

Posted 4/13/2008 7:34 PM (GMT 0)
Hello All! I have a thread on SCS but have gotten very few responses. Now I know why - I should have read yours before posting mine. duh! Anyway, I am now very curious, nervous, anxious about my SCS which I will receive 24th of April (trial). My neighbor had similar issues that I did such as numerous spinal surgeries to relieve back pain, which didn't provide much relief, and then the CP problems. This my 3rd year enduring CP and I'm ready for any hope of improvement. Once she had the implant she is a different person, she walks around in her yard, drives, plays with her dogs and is a much happier person all around. Her face even looks better, less wrinkles because she was always in pain. I really couldn't believe the difference in her. I want what she got!!!! I am confined to a wheelchair due to my CP in lowerback, rt hip & thigh, and my mission is to WALK to the bathroom.

I wish the best for each & everyone of you relief from pain in what ever means it takes. We are all different indivuals so what might not work for one may work for another.
Posted 6/19/2008 6:13 PM (GMT 0)
Hello All

I am going to get a trial stim in a few weeks. He wants to put in a permanent if it helps pain. I had a vaginal total hysterectomy about 16 months ago. Appartently the inguinal nerve root was severed. Oh my...the pain. I am on 4000mg of neurontin aday and 75 mg of elavil daily. I need to come off of at least some of the neurontin. I work in a factory, doing production line. As the day goes on...the pain worsens.I no longer go to the E.R. any more because the doctor told me the morphine is not helping my nerve pain..just my whole body to relax. I have been working with this and I just cry sometimes at my breaks. I have to work.We just would not make it financially and also I need the insurance for doc and meds. I am so afraid of getting this neurostimulator. I am so afraid of any surgery.. the pain gets so bad, that it feels like my appendix are bursting. Doctor said it is like a contraction, when it gets real severe like that. Other wise, it is alot of burning, stinging, like someone is scrapping a ice pick across my stomach..I hate living like this..so I guess I will get it done..I'm just so afraid. Sorry for going on and on..I just want to make sure this really does work ? Any tips would be great ? thanks for listening...Geeja
Posted 6/19/2008 7:58 PM (GMT 0)
Hi Geeja!

Welcome to our family here. I'm so sorry for your suffering. Have you considered a second opinion? Maybe a university/teaching hospital? Might be a good idea just in case there is something better for you out there.

We're here to talk whenever you need us.
CHutz
Posted 6/19/2008 8:11 PM (GMT 0)
Hi, Geeja,
I don't know anything about stimulators other than what has been posted by others, but wanted to welcome you to the forum. You have so much to bear right now. There are some threads on here I think started by lassieuv when she was considering a stim. She went through the trial, as I'm guessing you will. But Chutz's suggestion is excellent, in that getting a good second opinion from some experts at a teaching facility would at least let you know if there are other options.

I take 1600mg of neurontin/day and I know from my cousin who's a pharmacist that's a mid-level dosage, so you are at the top end. I'm surprised you can still function safely on a production line - please, do keep yourself safe. Have other pain meds been tried - other opiads that might not be so sedating? I'd certainly ask for any and all options from a pain management specialist as you're pursing the stim and/or other treatments. One thing I wonder is if you could get an external stimulator unit like a TENS (I have what's called an intraferential stimulator - similar to a TENS). That might be another thing you could use, temporarily, to help manage the pain.

I wish you the best. Please share whenever you need to.

PaLady
Posted 6/20/2008 3:20 AM (GMT 0)
Hi Guys,  I also am waiting for the paddle surgery.  My doctor said the only way to stop lead migration is to have the paddles sutured either to the ligament or to the actual bone of the facets.  I will have the small laminotomy and the generator placed in right upper buttock.  Still don't have a date yet but wanted to wish you both good luck and think postive!  Keep us posted.

Posted 6/28/2008 9:09 PM (GMT 0)
Hi All!  I'm getting the trial on Monday, thank you all for such helpful advice!  This is actually my first post here too!  I was a Cert Vet Tech, I'm 30, and have been dealing with this, which will be, 5 years this August.  So, I have a really good understanding of medicine in general, but I'm amazed at how much more you learn, when you are dealing with it!  I worked up until my collapse at work, last year, and found that people are VERY clueless when it comes to chronic pain, even in the medical field!!  The term "chronic pain" is just a term to them, that's all you hear about, but NO ONE knows for sure until they go through it!  I take pride in what I do, and it was the hardest thing for me to realize that I can't.  I'm with a man that has similar problems, and I can't tell you how great it is to have someone to understand how you feel, not that you would wish CP on your worst enemy!!  LOL!  Anyway, thank you all, and I look forward to getting some relief on Monday!
Posted 6/29/2008 12:17 AM (GMT 0)
Hello, Dragoness,
Welcome to the forum, although it sounds like you've been reading for awhile but just didn't post. I'm glad you did, as the stimulator question comes up a lot, and it's good to learn about different experiences. I've never had one, but would still like to learn how it goes for you.

Let us know how the trial goes, and we're here for all kinds of chronic pain support issues. There seem to be a lot of us with connections to the medical field, but you're right until you see (or rather "feel") this from the inside out, I don't think you know what it does to your life.

Looking forward to hearing more from you, although I'm certainly sorry you have to deal with this, especially at such a young age.

PaLady
Posted 6/29/2008 11:52 AM (GMT 0)
PALady, thank you!  I will definitely let you know!  Your kind words, and the words of others are greatly appreciated!  Helps a lot when you can discuss things with people!  I have read more than posted, that is true!  And yes, I wish no one had to go through such a thing too, as I said, I wouldn't wish it on my worst enemy!  I've haven't been through as much as some of you, but I think because I'm "young" they don't want to make matters worse!  Instead of them even considering the fusion, which I don't want anyway, they want me to get the artificial disc if this isn't going to work, but I see there are many more options still yet to find!  Like the fact that I wasn't offered to try a pump yet!  I don't know if my doc is trying to scare me or what!!  LOL!  But, again, thank you!  I go in tomorrow morning, early!  I'm looking forward to at least the trial, I'm nervous, but I'm SO ready for a little relief, even a little is good, I've been finding myself getting a lot more pain as time goes on, and I want to enjoy some of my life!  I was in the Junior Olympics, I was very athletic, I promised myself at a young age that I would be in shape and going to the gym, playing sports, whatever, until I died!  But obviously things change!  Good luck to everyone, and I will be back to let you know what happens!  Thanks!
Posted 6/29/2008 2:32 PM (GMT 0)
Dear Dragoness,
Now I really understand your name - the Junior Olympics, what an achievement! But makes it perhaps even more painful emotionally for you to lose all that ability.

Just remember if the trial doesn't work there ARE many other things. And some treatments are designed for long term pain management (like the stimulator), but others, such as the surgical options, may be able to fix some of the problem. I'm 58 and just had a double lumbar fusion last Sept. Unfortunately, it didn't help the nerve pain in my legs and feet, but I might have waited too long. My spine also was too affected by DDD to make me a good candidate for a disk replacement.

If the trial doesn't give the desired results, maybe you can get to a major teaching hospital, if you haven't already.

Look forward to hearing from you, and wish you all the best tomorrow.

PaLady
Posted 6/29/2008 7:17 PM (GMT 0)

PALady, thank you SO much!  You don't understand, or maybe you do, just someone to give a little guidance that has been through so much as yourself, really, really helps!  Thank you!

Well, Dragoness Warrior, I kind of got that from the fact that I love my protectors, the Dragons, and I have always been a fighter!!  LOL!  So, yes, I felt this more emotionally, especially after it happened, because I had ALWAYS since a very young child, very active!  Even my father was a champion weightlifter, racecar driver, and sports affiliated too, I followed right in his footsteps!  I developed even more anxiety, which I have had under control, thinking positively, making sure I don't have those worthless thoughts about myself, it takes a lot, but it means a LOT to be positive, you have to KNOW that you are going to get better, screw that the doctors told you you'll never be 100%, I'll take 99, that's fine with me!!  LOL!  But I don't want to see myself as a young cripple, or even an old one at that, I swore to myself, that would never happen, and I'm doing what I can not to be that old/young cripple!

I don't like the fact that my muscles are flabby now, I have a pot belly that I never had before, and I can't exercise at all!  I've tried, believe me, I've tried!!

Now you've had a fusion, I'm happy for you, as long as you're happy!  But what I was wondering, is how is the back pain, I know it didn't do much for the nerves, but sometimes a little is worth more?  I have talked with docs about that, but they say that it lasts maybe 10 years and it's permanant, whereas the artificial disc isn't.  My life is so up in the air, I just want to be informed before my doc suggests something!  But I'm really optimistic about tomorrow, just nervous, but again, I will definitely let you all know!

I can't go to a teaching hosp because they won't see me with a case!  I don't want to get into that, as I'm sure you understand, but I just don't like that docs, taking the hipocratic oath, decide that they don't want to help you because they COULD be supeonaed (sp?).  I understand that it takes from their other patients, but there are now ways around that, such as a video deposition on the docs part, has anyone been through that before where the doc refuses to even consult you because of that?

Thank you again PALady, your kindness is very much appreciated!!  I live in PA too!  LOL!  Thank you and I wish you and everyone a lot of luck, mainly to be painfree, I think that's our ultimate goal together!!  Thank you, everyone!!  Good luck to you all!

Posted 7/7/2008 5:05 PM (GMT 0)
Well, I am on the last day of my trial, and I'm still unsure about if it's helping me or not!  I feel a difference, but I'm not any more mobile!  Has anyone experienced that?  I need a little guidance, from anyone, that can help, what should I be getting out of this?  Should I be more mobile right now?  Am I expecting too much from this thing?  I'm very confused and unsure if I want to get this implanted and I really need some advice, so anyone that can help, please, put in your 2 cents!!!  I really need it!!  Thanks all!!  And good luck to everyone!

Posted 7/7/2008 5:40 PM (GMT 0)
You may want to try the other stim brands to see if they help you more than the one you did the trial with. Some people say one brand works better for them for some reason. Another thought is that the leads aren't placed correctly or a different lead type would work better (uni-polar, bi-polar, tri-polar, ...). Also it can take people a little bit of time to become more mobile after getting a stim so it may take more time for your body to get adjusted and loosen up. Just some thoughts. Don't do anything if you aren't 100% sure it will work for you. Talk to your doc and see if you can do another trial if needed.

Best wishes
Posted 7/7/2008 6:05 PM (GMT 0)
Miami, that is GREAT advice, thank you! I do have to talk to him today, I have to get it removed. The only thing with him, is that he only uses one brand, the MedTronic brand. So, I don't think I can ask him to try a different one?! Don't know, I will bring that up though, very good option!

So some people don't get mobility back right away?! Hmmm, that's SO good to know! Because I was worried! I wasn't able to do anything more than I had with it in, but the darn thing was so uncomfortable, it was SO hard to tell if it was working for me!! I don't get that, they create pain by doing the trial, then say, oh, is it helping?! LOL! I know, I have to distinguish the two types of pain, but golly, that's hard!! LOL!

Yes, and thank you, I'm not going to decide until I am 100%, as you said! I refuse to be cut open and decide later that it stinks and I don't like it! LOL! I do feel it helps a little, but I guess I have to talk to the doctor and see what HE was expecting from this, and compare it to what 'I' was expecting, then compare all that to what I've experienced!! I just can't wait to get home and get a shower!! LOL!! I said to the rep, maybe after I get it out, go home and get a shower, maybe I'll have better insight!! LOL!!! But, really, is it true that people find that AFTER the trial is taken out, that increased pain arrises, or comes back, and they find that they need it?!

Thank you very much for the advice, and I thank all that put in their 2 cents as well, I need the input, it really will help my decision!! Thanks!!

Good luck to you all!
Posted 7/8/2008 12:08 AM (GMT 0)
Dragoness,
I really wish I knew more to help on this topic, but I'd urge you to search all the old threads dealing with stimulators on this forum. I think it's a topic that's come up a lot, and you may find some old threads with still relevant info. I do seem to remember someone saying if you're not absolutely certain with the trial, then don't get one implanted - and that sounds like what you're thinking, too. After reading about the mother's story about her daughter's infection, I'd be even more leary, unless it was nealry a miracle worker!

PaLady
Posted 7/8/2008 6:18 PM (GMT 0)
PALady, thank you!  And yes, that story was a little horrifying, I felt SO bad for her!  And I will go and look for some older threads, thank you!  But I did talk to my doc yesterday, when he took out the trial, and he said that it wasn't to help for mobility, it is for pain.  So it seems like for pain, I'm getting about 30% relief, and he felt that it was a good trial.  And looks like I will be getting it!  Hey, 30% is better than nothing, right?!  LOL!  As I'm going without it though, I'm finding that it did help the pain a bit.  So, maybe this is a good thing!  My doc is VERY optimistic about it and said that he probably will put in a double lead so that I get better coverage.  This MAY help someone in the future, he told me, when he was asking about the coverage I was getting, I told him that I didn't get much sensation in my hip and still had some pain, what he said was that believe it or not, that's a hard spot to get sensation in sometimes, so that is why he's going to do the double lead because it should help get that spot better!  So, thank you very much, I will keep those interested posted, I still have to schedule the surgery date, and I'm NOT looking forward to it, but hey, relief is something that's hard to come by, and if I get a little, I have to take it!

Good luck to all of you!

Posted 7/8/2008 6:27 PM (GMT 0)
Dragoness,
Just wondering - is there any way you could do a trial with the double lead before having it implanted? I don't know. I guess there's something in my gut saying if the best he can give you is 30% - if that's the BEST - what if you don't even get that? I don't want to be negative for you; I know how tough all these decisions are, and how individual they are. But I seem to read so many difficulties with leads moving, where they're implanted, etc., that if it was me I think I'd want a trial with exactly the kind of leads he's really going to implant.

Maybe some others can give you better info. If you don't find something on old threads, maybe starting a new one of your own with a more targeted title for your situation might draw some other responses? Maybe Again. wish I could be of more help.

PaLady
Posted 7/8/2008 6:41 PM (GMT 0)

PALady,  I appreciate your concern!  Thank you!  I agree with that, but apparently, what he's telling me is that if I got the 30% from the lead that was placed, I should get that much more from it.  Now from what it sounds like, it's just the same lead with 2 heads on it.  I didn't have any migration during my trial, which the doctor almost expected, and said that it was good that they didn't move and I had a successful trial.  But I will definitely look on the older threads, and maybe someone might have something!  Posting a new topic might be a good idea too!

I really appreciate your concerns, it helps me to make a better decision when it comes to the surgery.  I didn't schedule yet because I'm still not positive, but after talking to the doctor, he made me feel better about my confusion as to whether or not it was helping!  I thought the whole thing was to get better mobility, but I'm assuming maybe it's because of my history, that he only wanted for me to get some pain relief, and from what I've heard, I may get an increased relief from this, and possibly down the road therapy and mobility?!  Don't know, that's probably another good thought to add for anyone that has had that experience!

Let me check the other threads, and see what's been said, then maybe I'll post another thread to ask those questions too!  Thank you again!!

Posted 7/10/2008 2:10 AM (GMT 0)
I am new to this site. Presently on Kadian with Norco for break-thru pain. My Pain Doc tells me if this medicine program fails that my next move is to a pain pump. Can anyone tell me more about the installation and the pro and cons of having one ? I would really appreciate some feedback.
Dx: Total failed cervical fusion of my entire neck, meralgia paratestica to both my hips from the bone graft, trigeminial nerve problems, failed total knee replacement, back pain from walking with a severe limp.-- I was not approved by the shrink for a neuro- stimulator implant. Stopped taking all the other meds : Cymbalta, neurontin, zanaflex etc simply because i felt like a zombie.
Posted 7/10/2008 6:02 PM (GMT 0)

Hi Tom Inpain, welcome to the forum, sorry I don't have too much to add, as I don't know much about the pump, but there are TONS of WONDERFUL people here with TONS of great advice and support for you, so stick around and become part of the pain family!  Good luck to you, and I hope that you find relief!

Posted 7/10/2008 7:05 PM (GMT 0)
Hi Tom and welcome. I don't know much about the pump, but a fair amount on the stims if you have any questions about those. My only concern with the pump is that if you didn't pass the pysch eval for the stim maybe you wont for the pump if there is even an eval for the pump. Or were you already approved for a pump? Read the post on the pump recalls to see if you can get some questions answered. I have a lot of concerns about them right now because of the recall, but thats not to say they are all bad, I'm just hesitant myself with them because of it.
Posted 9/25/2008 8:56 PM (GMT 0)
Hi Everyone

              I'm really scared. I had a hysterectomy about one and a half years ago. The doctor did a complete hyster. vaginally ..no laproscope. Well aparently he accidently severed the inguinal nerve while trying to get the right ovary.Anyway...I have been on 4000mg of neurontin and 3 elavils a day for quite awhile now. I work on an assembly line in a factory. The neurontin controls me so much. Very tired..more stupid than I am..slur my words..very forgetful..etc...My insurance approved a neurostimulator. I am soo scared.....I have the trial in 4 days..I am scared of infection..scared the surgery is going to hurt alot since I will be awake...scared about my job if I get the real implant..I work on an assembly line..we have magnets the size of my hand holding all out tools and rivets...computers everywhere..huge industial machines , etc..I'm scared of losing my job...I have to try this..I am so tired of the pain..I also get these ice-pick type scrapping that shoot across my lower abdomin..they are so terrible..I just want to feel 40 % better..after reading some of these articles on here..I really got more scared,,has anybody really felt better with this ? What is the trial procedure like and does it hurt when they get close to the damaged nerve ? Please some one respond and let me know something and is it all worth it ? Thanks Geeja ( my grand-daughter named me geeja instead of grandma , ha ) Thanks

Post Edited (geeja) : 9/25/2008 3:15:08 PM (GMT-6)

Posted 9/26/2008 9:36 PM (GMT 0)
Geeja,

     Now, it's been a while since I've been on here, and it's all due to that darn Neuro Stim!  And as far as I know, you can't be around all those kind of machinery with that device!  I'm sorry to hear that you are going through so much!!  I know it's hard, but this CP forum is like one big family, and they all care about each other!  So, if I don't have good advice, the next person will!  LOL!  :)

     Now, I had a failed surgery, when they went to put the permanent device in.  They manipulated nerves and hit a nerve in my other leg too, so I was left without a good leg to stand on!  I'm still healing from the actual surgery too!  I'm supposed to go back to get another device, different company and different device, to see if that will work!  I know how you feel to be tired of the pain, I am too, and you feel that if you don't, that you aren't trying!!  But you are, you are doing what you can with the resources available to you!  Now, you might want to think about the Pain Pump, being in the machinery business like you are?!  Only because of all of the magnetic fields around you, can interrupt the Neuro Stim device and give you shocks or jolts.  Talk with your doc more, and get other opinions!!

     I apologize for not being on lately, but I've been very tired, and in pain :(  I am still trying to find souce of income, and still wondering about going through this again, for now I have this ugly scar on my back from a failed turn!  LOL!  Oh well!  Things have just been rough!  But, I hate to see someone in a position of not knowing what to do, because we have all been there, and I know that it's been hard on me too!  Take it one step at a time, and EDUCATE YOURSELF first before anything!  Take the opinions of others on this site, and you will do great!!  You sound like a strong person, so fight hard!  Best wishes, and I hope some of this helped!  You, as well as others are welcome to PM me too!  And I will talk to you all soon!

Posted 9/26/2008 9:59 PM (GMT 0)
Dragoness - so sorry to hear what you're going through, and that the trial and surgery for the implant has made things worse. And I know firsthand financial strain multiplies the pain.

Geeja - I don't have any info. about stim units or pumps other than what I've read here, but I think Dragoness is giving you some good advice, especially about being around machinery. Read and learn alot before getting the stim, considering your occupation. I'd also go to the website of the manufacturer of the type of device you may be getting and read all the fine print about what you can't be around.

PaLady
Posted 9/27/2008 2:59 AM (GMT 0)

Geeja, I have the Medtronic Restore Ultra stimulator. 

The machinery you work around would be questionable, depending on how it works and what it does.  The vast majority of tools and machines don't have any impact at all on a neurostimulator.  The magnets would be, without question, a huge problem and make up the majority of warnings issued to neurostimulator patients.

Here is the basic warning pertaining to magnets, directly from my Medtronic patient manual:

"Sources of strong electromagnetic interference (eg, defibrillation, diathermy, electrocautery, MRI, RF ablation, and therapeutic ultrasound) can interact with the neurostimulation system, resulting in serious patient injury or death. These and other sources of EMI can also result in system damage, operational changes to the neurostimulator or unexpected changes in stimulation. Rupture or piercing of the neurostimulator can result in severe burns. An implanted cardiac device (eg, pacemaker, defibrillator) may damage a neurostimulator, and the electrical pulses from the neurostimulator may result in an inappropriate response of the cardiac device."

I think the best option you have is to obtain the technical specifications for the machinery you're exposed to on a daily basis or that you have the potential to be exposed to in your work.   Your employer is required to provide you with that information upon request and they should have it reasonably available.  Once you have that information, contact the company that makes the implant your doctor is considering using and ask them to review the information and address any potential negative interactions between the stimulator and the machinery.

 

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