Nerve Stimulator surgery (BURST)

Nancy what I meant about the staples not being forgiving.  They just don't move with the skin.  Because they do a lamenecty in the thoracic area of the spine, right where your bra crosses,.  So for the first 4 days, I could not raise my hands up as everything pulled.  Now almost 2 was.  post op I can blow dry my hair by myself.  What a feeling.  Still have not been able to sleep in my bed.  So I go from couch, to small recliner to a motorized recliner.  Sometimes I feel like a pretzel.  Hoping that tomorrow when both sets of staples removed, I can lie flat.  There is definitely a bulge where the battery is for sure.  Once, I believe, all swelling is gone and total healing occurs, life will be good again.  

Dee

Hi Lynn.  Sorry you are having to have new surgery.  I need to lose weight cause my pain has prevented me from walking.  Funny you mentioned Nutrition-Systems.  I was thinking of using that program.  But your story is making me re think that.  Yikes about them moving the battery to your stomach.  You are a brave person and a Dr. to boot.

Dr.s have back issues too.  Hope all goes well with your next surgery.  Guess I won't be losing weight any time soon.  I do not want them to have to move anything.  I have enough pain.  Glad your permanent implantation is doing what it is supposed too.

Question:  Is your stim the two lead one or the paddle?  With the paddle, you have to start over with the programming.  That's where my problem is.  Hence looking for right program.  I know it's there, we just have to find it.

Good luck and keep us posted.

Dee

google in StimWave. I am looking into it. 

I hadn't heard of them before, but I took a good look through the website and they have a MAJOR disadvantage that the newer SCS models have worked to get rid of, namely the buzzing and tingling sensation.  You feel absolutely nothing in burst mode.  With the older model SCS and probably with this Stim Wave you'd have to turn it off to drive because it could stimulate you and cause you to accelerate when you don't want to.  It is also kind of annoying, lots of patients requested to have their old SCS removed as they couldn't take the constant buzzing.  They also reported that if they suddenly leaned or bent they would get a sudden shock, I don't know if this StimWave would do that.  It is appealing to not have the damn generator, but I wouldn't trade the not feeling anything going and not getting suddenly shocked to have an external generator.  I'd also imagine they would have to worry about interference.  I know that our generator communicates via bluetooth with the programmer and that gets interferred with at metal scanners, my household internet will try to upload updates to the iphone that my rep tells me not to let the iphone upload LOL.  When I first got the iphone the bluetooth had a bug and trying to sync with the generator was a 21 step pain in the butt that didn't always work.  It took St. Jude and Apple 2 weeks to work the bug out.  At least my generator was on and working, I just couldn't turn it up.  I can't envision having the bluetooth connection being between the leads in your epidural space and a generator you have in your pants pocket.  If there is any bug, interference or problem with bluetooth those leads won't have any instruction and so they won't do anything.  The default in the St. Jude system if bluetooth goes down is to just stay at your current setting.  As a doc, I see too many potential problems here, btw, I am a retired pain management doc, board certified... yeah I know, ironic that I ended up as one of my own patients.  At least I can say I was always compassionate to my patients and I never got impatient with them like some of my colleagues did.  Doctors like to always see good results and with chronic pain patients, that isn't always the way it goes and some docs then get frustrated with the patient instead of understanding that it is the disease. So far for my own journey as a patient, I have only had great docs who have been as compassionate as I was.  Gosh I hope that continues!

I wish I could have a choice between the two.  I definitely would have taken the two lead.  There I had 50% reduction of my pain.  Oh, to be sure, I will be asking, "why was there no choice given for a stim."  I bet the Dr. Only does the paddle.  I wonder if it could be changed.  I think I need to see the X-ray to see what they did.  

I have the problem with pants on my waist.  It needed to be lower by about 2".  I guess I should be happy it is done but now to find the right program.  A belly placement would have been ideal.  I don't sleep on my stomach anyway.  You had yourself one smart Dr.  Must talk to my pain mgmt. Dr.

You have given me some valuable info. and insight to drop on the PA on Fri.  Wish you good luck and a speedy recovery.

Dee

Bet you were a great Pain Mgmt Dr.   That is why you know so much about various placements of the leads.  I am surprised that you are such a good patient.  The old adage is , "Drs. Make the worse patients."  Seems you figured out the right ratio.   Your patients were  lucky to have found a compassionate Dr.   You are a vanishing breed.  I have found a wonderful Primary Care Physican and the Best Pain Mgmt. Dr. In my corner of the world.

I saw on clinicaltrials .com a study for stimwave high frequency that does not have the negatives you spoke of. My doctor is happy with the high frequency products. So I will be watching for its results. 

LOL it takes a special breed to be a good pain doc.  Now you have too many people going into it to make the big bucks.  You have to be careful who you go to now.  I got into it in 1988 before the whole thing even became a board certification. I be old!  Anyway, you are quite correct that you might have gotten the paddle not because you needed it but because that is all the doc knows how to do.  I got the leads because my doc isn't qualified to do the paddle, it requires surgery and he isn't a surgeon.  I am trying to avoid surgery at all costs.  I learned in my practice that once you get any kind of surgery you mess up the epidural space and then you limit what the pain docs can do for you because you get scar tissue in there and they can no longer slide leads and catheters around in there.  If you can think of any other questions you might want to pose before your Friday visit let me know-- I will help you out there so you sound super knowledgeable.

Thanks for my vote of confidence.  The NEVRO was my first trial which was a no go.  Nothing worked.  I had everyone completely baffled.  The only one in the trial with a big goose egg.  Boy I felt bad.  But my pain Dr. got me into the BURST by St. Jude.  It took,6 days and the clinician who came to my home erased the program done by her boss and reprogrammed me.  That was pure dedication.  Next day almost 50% relief.  If I knew then, what I learned from you, I too might have the two lead trial.  But again hindsight is twenty.  I am formulating questions to pose to the surgeon's PA and to My Pain Management Dr. that I will see in 2 weeks.  They have no idea that it is not working and pain is at its max.  But my conversation with you gives me psusey, that we can make this one work.  I will ask to see my X-ray that was taken after surgery.  That will give me a much better picture of how the paddle is in my spine.  Thank you so much for your knowledge and experience as having been a recipient of a stim.  Much thanks for your expertise.  I am feeling better psychologically.  

Have re a great night.  May you be pain free.  I will be trying to catch up along with a few more of us that I talk too.

Dee 

 

I have a question Lynn, I had the St Jude put in last Wednesday and I have the paddles in. The surgery was done by my Neurosurgeon and the paddle was put in because that is what my pain Dr likes. The pain has been through the roof, it was worse than my 3 back surgeries together. It isn't as bad as it was last week and through the weekend. I can't wait to take my pain meds and when the 4 hours have passed I am taking my Oxy. The surgery took longer because the Neurosurgeon had to cut more bones, I don't think that was ever explained to be prior to the surgery, I know that the amount of pain was certainly not told to me.

So, my question is, if we wait for the scar tissue to form around the battery will it not move? I have about 50 pounds to lose that I gained by so much inactivity and I admit that I have been happily eating my way through everything. I have been depressed because I have had 6 years of pain and 9 surgeries in that period of time, 2 of which were from breast cancer last year.

Thank you ahead of time for your help and I hope that both you and Dee are on the road to less pain.

Dianne

Good morning Dianne.  It seems we both found Lynn and are picking her brains for answers.  She sounds and reads like a very compassionate Dr.  Although retired, I am sure she helped many of her patients.

I see you have gained weight too.  Boy are we on the same wave length.  Thanks to Lynn I will ask on Friday the obligatory question, "Did I have a choice between the trial, as it worked and the paddle."  First I can't wait to see the facial expression and then the answer, if they have one.  It should be priceless and will ask the same on the 24 of the Pain Mgmt. Dr.  

Today it is raining so I expect to hurt more.  I am not on the heavy drugs you are.  I weaned myself off them as for me they do not work.  I am using flexeris (generic) and Extra Strength Tylenol, the heating pad and sometimes an ice pack.  I can't wait to get re-programmed on Fri. and saying prayers to a better outcome than right now.

Hope your day goes well and we both come out of this damn tunnel with less pain, full pain free is preferable, but at this point I'll take what I can get and go from there.  Take care.

Dee

 

Dianne, that's how I gained my weight too, inactivity.  Did they put your generator in your butt too?  My doc was hoping for scar tissue to form around my generator to pull it away from my sciatic nerve. The problem was the generator sitting on my nerve was causing way too much damage that we couldn't wait for that.  From my reading and my talk with my rep it sounds like the generator does get encapsulated with scar tissue and then sits in a pocket of fat.  There are reports of the generator with it's scar tissue becoming dislodged from it's fat pocket and moving and also if the fat disappears because you lose weight then your generator will move in relation to your skeleton.  I think that is the major problem with placing it in your butt, I spoke to a spinal surgeon ( he was a consult about my neck) and he said that the generator should be placed in the upper butt, above the fat, kind of where your love handles start.  That way if you lose weight it shouldn't move and it won't be on your belt line either so you can wear pants without it rubbing.  My doc did place my generator higher than it is.  I have analyzed my problem.  On Nutrisystem they start you out with this quick weight loss month-- so I had that rapid 16 pound loss.  At about the two week mark I started to feel well enough to start walking and added these 10 minute blocks of walking to my day.  All of a sudden the generator dropped-- I think it was the combo of my suddenly adding walking to my newly thinner butt.  I believe you can lose weight, just do it slowly, the 1-2 pounds per week that most docs say is safe, not Biggest Loser style LOL.

Dee, it is leads versus paddle, not trial versus paddle.

Nancy, I will take a look at clinical trials. You need to be wary of clinical trials as the technology is by its very nature very new.  You will be cutting edge but also a guinea pig.  I wanted very badly to get into a clinical trial for hemochromatosis arthritis treatment, that's the cause of my troubles.  However, after further discussion with my primary care doc about the rheumatoid arthritis drug they were using I found out that all of her rheumatoid patients have to come in the minute they get a sniffle or they get a serious pneumonia.  She's had one get resistant TB.  My immune system already sucks, I get everything I come in contact with LOL... and so I decided not to go into the trial.  Anyway, I will take a look for you, I hope that they do report their bugs and problems, like the bluetooth problems I had with my patient controller connecting to my generator.

Hi Dee,I don't know how anyone could get out of our back problems without gaining weight. I have spent most of the past 6 years in bed, I know that we are suppose to keep active but when your body hurts it is hard to keep going. 

I am getting ready to go to my pain Dr and meet with the Rep to get it turned on and programmed. The pain after this surgery has been horrible, I have the paddles in and I know that the Neurosurgeon had to cut a lot of bones. I don't think that was properly explained to me, I was just told that my Pain Dr prefers the paddles over the other one. I wasn't told that I had a choice.

Well I better get going, I am hoping that Lynn answers me before my Dr appointment this afternoon. My appointment is at 1 p.m. Eastern time.

Talk to you later.

Dianne

Thank you Lynn for answering me so quickly, I am getting ready to go to my pain Dr and the Rep. The plan is to turn the device on and program it, I have a feeling that I will be going in for a lot of these adjustments. My pain Dr is in Fort Worth, Texas which is about an hour away from home. I am on Oxi up to 4 times a day and that doesn't even touch the pain. My pain since the surgery on April 5th, has been almost blindingly screaming pain. The first 4 days I did a lot of sleeping because to be awake was just too painful. Today will be the first time in a week that I have stepped out of the house. I took a pain me 45 minutes ago and it just isn't getting to the pain. The ride to Ft Worth will be long and painful.

I don't plan on losing more than 1 to 2 pounds a week so you think that would be OK? When I am able I will return back to water therapy in my PT. My husband and I have talked about joining the Y which is new and about 45 minutes drive. I plan on doing gentle exercise like Yoga and water aerobics for old farts. Please excuse my language there but senior citizen just doesn't cut it.

I better start getting dressed, is there any specific questions that I should be asking them? My battery is on my left buttock just below the belt line, so is that a preferable place for it to be?

Thank you Lynn for joining our little group here, I have learned a great deal from Dee because she is ahead of me by a couple of weeks so she has been the guennie pig so to speak. She has had hers turned on already but mine hasn't been because the surgery took a lot longer than expected and he had to do more cutting. I just not remembering that he was going to be cutting my bones. Do you think that is the reason that the pain has been so intense?

I will be waiting to hear from you and Dee and anyone else in this thread, I love this support group that we have formed.

Dianne

OMG yes, cutting bone is one of the most painful things you can do to a human body.  You poor thing.  I think that you won't be allowed to do any kind of PT by the docs for at least 6 weeks because they want the paddles to scar in place.  I wasn't allowed to bend, lean, twist, put my arms above my arms, nada for that time.  I do Pilates and my doc said no to that for an additional 4-5 weeks so your Yoga may get that same no.  They just don't want you pulling the paddle out of place. So I would say the pool stuff at 6 weeks, Yoga at 12 weeks. Your battery sounds high enough, mine was a bit lower than that to start with and then it fell lower.

I hate to say this, but with all that bone cutting, you can expect a very rough go of it for the first couple of weeks.  Lots of ice packs to the area for 20 min at a time can help the first week.  Of course the pain pills.  

Well, I saw three clinical trials in progress on StimWave but none have reported their results, so you wouldn't see any negatives or positives yet.  You have to wait until they finish the trial, tabulate all the results and then publish their conclusions.  One thing I did notice is that the big US trial being run out of Cleveland Clinic is considering a 50% reduction in pain to be all they are looking for, why not 100%?  I did like that they were comparing their low frequency- the one with the buzzing, to the high frequency---the one with no buzzing.  It will be very interesting to see how that turns out.  But if you hit the results button, none of them are finished yet, the earliest was set to report this summer.  What is said in the proposal for the trial isn't going to be anything positive or negative about the product, it is just a statement of what they are going to do.

Hi  I know there was no trial where paddle vs, leads.  After having the paddle implanted and all that goes into that surgery, there is was no on God's green acre could that have been done.  I can accept that.

My problem with this whole procedure and I have to be honest, they told me everything upfront of what to expect in the pain area.  There was no holds barred on that score.  They were 100% accurate.  The only downside was that, if you got good results with the leads, it does necessarily transfer to the paddle. That is my dilemma in broaching the subject.  I guess honesty is the policy.  They were honest about what to expect from a surgical standpoint.  So I guess I should be honest about how I feel about  where I go from here on the reduction in pain.

I am usually optimistic, but I have this little voice saying, "this may not work,". Then what!!!!!  Time will tell.  Upped my level this morning to see if I could get some relief.  Nope. Guess they up for Friday.

Have a good pain free day .

Dee

All the pain specialists I have talked with say that 50% is the standard they go for justifying any procedures. With back pain there can be more than one pain area problem. So even if they stop pain signals 100% in one area, there will probably be other issues that will continue to generate some different pain signals...so they do not expect the 100%. My doctor has gotten very high results from the Nevro - more in the 90% range for many patients. Also, I understand that picking the best patients for these devices is important - some symptoms respond better than others. I have been told by 3 doctors that I am an excellent candidate as the majority of my pain comes from annular disc tears (per my discogram using PRP instead of dye to pressurize each disc - I have 5 lumbar discs that generate the pain).  My issue is with the battery pack so I am waiting for more info on the wireless. A family member will soon be seeing a doctor who has done several StimWave procedures. Am anxious to hear what he finds out. Other doctors have said that they like more research results and I can appreciate that. Glad that they are doing the trial studies.  Thank you for sharing your educated knowledge on this forum!

My heart goes out to all dealing with pain - the patients, their families and the doctors.  Dee and Diane are so generous to be sharing their experiences with us. Only a patient can explain how their, and their family, daily lives are impacted.  

Hello there.  I hope you are doing well at this point.  

Dee