I am a little angry and disappointed

Hi Lindagkelly:

By the way can I call you lin or kelly for short? Thanks for your answer and I guess at least I am not the only one who has thisoderator problem. It is strange because my log in name or ID is shown on everything I write or who writes to me. That is the reason why I posted my comment publically as I did not know how to contact support. Of course that would have been the best way but at least a moderator can forward this to the right party. I m also very sorry that you ran into the same problem. I am also glad that others responded to me as well so I do not feel alone in this situation. Maybe it will open some eyes to other people who are havin

Having this problem as well. Sorry about having to split this message but having trouble typing on a tablet with miniature keys and making these errors. My regular laptop is in for repairs. The inconsistencies of typing on a tablet is problemmatic to say the least. As you can well note, the word breakups are apparrent and not supposed to be so. On that note, I hope I will recive a response by support. This will at least tell me that they are interested to hear what I say. I would have been much higher on the award medallions ans show a much higher reason why I am here.

Take care and hope to talk to you soon.

Mel

Hi, so my name is Linda Genine Kelly.  Kelly was my grandmother's maiden name. You can call me Linda.  I also don't mind Kelly.

I'm looking for a way to contact support.  If I figure it out, I'll let  you know.  I don't know why, but it's nice having our little awards.  Sorry you lost some of yours.

Thanks Linda:

I just dont believe it, Everything should be safe and secure. When you put hours and hours toward something, then I should feel that I accomplished a lot. I did receive a message from a stafff member that some of my posts were in moderation tto see if it is suitable for the content given. I do not advertise, make any mention of links and sometimes when I have to continue a message, that may be indicated that it is a link or even is you say reply, that could be another indication. The staff says that the programming will be improved so it will not detect these unrelated problem. Maybe that is some of the reasons why some of my messages didnt go through. Most unfortunate and not my doing. Now, at least I know and grand was explained accordingly, I feel a littl

I feel a little better that I know this. As you can see, once again I had to continue as all of a sudden my page went somewhere and when I tried to gt it back, for some reeason it was sen when I actually did not send it. That poses some confusion and staff did say the programming has to be improved. That said, I will just have to wait if it has been flagged for moderation.

Dina,

Which one are you getting? I had my permanent one put in on Sept 2015 and I was in bed for 3 months with alot more pain that I could even imagine, let explain a little bit failed fusion S1 to L5 with a completely messed up nerves in my back and leg, been living like this since 1997 when I first injured my back at work, well for a year I had a burning sensation down my whole left leg and back, so by the time the 2nd opinion came my damages were way to difficult for the new Dr to fix when doing fusion, I know alot of my pain isbdue to nerve damage, l thought I would give it a shot but it to didn't work for me, it turned off by itself and I was amazed I got out of bed finally, started doing my little things I could do with pain so I limited myself, but I do live in pain every day I hoping they are gonna take it out. I know in the u.k has a drg stimulator dorsal root gangelion stimulator, but in the USA its in the trial period I so wish I waited for that one.

So make sure you are a 100% sure this is gonna work cuz I don't want you to end up like me.

Good luck, best wishes and hope it's for you.

Cynthia ( cindy)

Dear Cynthia,

I have read as many of your postings as I can find. I'm in the USA - Arizona and my new neurosurgeon is pushing the Nevro, but I've decided, thanks to the information you've given me to wait for the dorsal root gangelion stimulator.  I've had a lot of the same problems you have had.  So much nerve damage from the L5-S1 fusion.  Isn't that fun! I have the deep aching and burning down the back and side of my left thigh and neuropathy in my right foot, and back pain.  So, I'll lay in one position for a while, then shift, then move again.  I don't get out much. So I'm trying to change that this year.  I signed up for a 2 hour painting class tomorrow night.  I'll have to bring a pillow of course. 

It's free.

But thank you so much for all of the advice you have given.  I'm listening.

Linda

Hi Dina:

Here I am again writing to you. I started this a few minutes ago and while taking a short break and coming back to where I left off, it was all gone and here I had to start it all over again. Talk about frustrating! I wish i knew a way to save what you write so it will still be here. There is got to be a way but for what I can see, there is no menu to open. Then I guess I am stuck. To tell you the truth, I am not thrilled with the stimulator. I had it put in about 2 years ago and although it did work on my legs because of my peripheral neuropathy, it still felt that the intensity varied a lot when I drove, walked. reste sleep. I had to always keep adjusting it, The trial ne permanent replacement is rather expensive and the overall costwqs $200,000 which to me is rather expensive, much so. If you have good insurance, then the copay will be lot less. Many insurances are not so good, especially medicare advantage which literally suck. I dont know if you are on medicare as ... to be continued.

Hi dina:

Please see the message I just typed to Linda above and it will also give you an indication if you decide on which type of nerve stimuĺould be best for you. I have some knowledge and personally you cant believe everything tat you read, and hear. I have the old type of nervee stimulator. If you suffer from loer back pain, that is also have to be taken into consideration. Good luck on your choice. I would also like to mention something. Some doctors want to do a spinal fushion. Be careful about that because it is known to have drawbacks ans rehab is long, uncomfortable and suffer from pain. Of course their are surgeons who feel that would be the best way and that is one of the things they do, I had a neck fusion and I had to endurea long painful rehabilitation. There are risks and figure you will be in ICU for at least a day as long as there is no complications. The neck brace is very uncomfortable, screwed into you, and dont be surprised if your made fun by others, adults and children. The doctor will tell you NOT try to move or twist your neck./ Its hard to do that anyway. If you have a lower spinal fusion, you still have to wear a stiff back brace. With any fusion you vertabrae will be strapped together and make it hard to have a decent back that is totally moveable and liber. I know because I had both. That is also no guaranty that is a cure all.

Take care,

Mel

Hi Cindy:

You better believe it as I do too. I didnt have to spend 3 months in bed like you did but non the less I had lots of pain. It is no sure fire thing as with any spine surgery, there are risks and that is spelled out to anyone who goes through any kind of surgery. Your doctor and anthesiologist have to be trusted an know what they are doing. Anytime your spine is messed with, there can be a problem of the nerves being cut or pressure be put on it. This is the motor function of your body from your fingers to the toes going to your brain so they can communicate properly.

Hey cindy:

I said I will continue so here I am. As I have mentioned that all is said, you cant believe everything, Every patient is different to what ails them. In my case I havent experienced what I expected to. It is interesting to note that smart advertisment, colorful brochures, well done videos, sales reps promoting these devices and of course doctors who also try to convince you that it has been approved by the FDA so it is not an experiment, in a way it is feeling pressure that you go for the trial. Certainly the trial is a way to see if it is for you, Not always is that the determining factor. Doctors and reps say that the decision is yours. just think of what it is like buying a new car. Not quite the same but you know there is so much pressure applied and most times, the dealer wins. Of course you will do anything to ease your pain and you have tried all kinds of pain meds, spinal injections, accupuncture, spinal manipulation and many have its drabacks. Believe it or not, heat works, warm water pool is comforting, massage is a blessing, even some excercise and proper foods can help to a degree. It may not take the pain away for any length of time but just to have a few hour of relief is what we all want. The constant agonizing pain from when you wake up in the morning until you go to bed at night, is very agonizing, become de3pressed,lose energy and sometimes just not want to do anything takes part of your life away. We should never have to endure as much pain as we have. Some days are sheer hell. My pain level generally hovers around a 7 and get level9 at certain times. When you cant stand up because the pain is so bad and have to double over, then it is like having a kidney stone you are trying to pass or a woman who is having a baby, then that is what it is like. Thats excruciating pain and no one should have it chronically. I got off the subjet a little but that is what I do. Sorryy about that. In closing I just want to say that do your homework and watch non biased reviews on you tube. By the way there is a new unit which operates at a higher frequency and their is no buzz, I think it is at 10 Khz or in lay terms, 10,000 cycles. The older ones like I have is t a very much lower frequency, somewhere is the 100 or so cycle range. That is why you feel the buzz. There is a new device which your pain doctor will tell you. Check that out too. There are always newer devices coming out. I hope I helped you with what you are considering and please let me know what you decide. I would like to know this as I was also thinking of it. Take care and hope to talk to you soon.

Your friend,

Mel

Mel,

Oh I know the pain you are talking about there are times I am so frustrated with my pain management I start to cry cause I'm so mad cause of the pain I'm in and they just don't get it. My pain goes off the charts and they just pushing me away like a piece a paper. I do now have a great nurse practitioner she understands the frustrating and the pain, I felt like I was pushed into the nervo I could tell by the rep. Who was just like well you got some relief why don't you just try it and you'll be pain free, I could tell by the first week it was gonna be a rough ride three months of being in bed and one day of complaining the stimulator went off and I got back to at least going outside and trying to shop, I just hated the pain that gave me I would of traded it back to my normal pain anyday, sorry for being so long but after a failed fusion I figured what else could hurt, but not like that, I want this model out and I will wait for the dorsal root gangelion stimulator its only in its trial stage in the USA so I guess I will be waiting a few more years, what the hell I've been like this since 26 I'm gonna be 45 soon. What I would do if I only knew better, after years of suffering, I wish I would of did things alot different than what I did, did things my way than I would of. But what of could of this is the life I was given and I will do my best to do the best I can of living it.

Sorry so long

Keep in touch

Cindy( Cynthia)

Hi cynthia:

Sorry I couldnt get back to you sooner but I have so mant backlogs of people wo contacted me that I am falling behind a little. You also have to excuse me that I am using a tablet with a bluetooth keyboard and it is far ffrom perfect. You can see various errors which cant be helped. I have to type ver`y slow and that tkes time and that is the reason why I cant answer in a normal manner with a laptop. You mention dorsal root ganglion. I know I can look it up but what does it do for the lower back? I hear of so many different types of ways that either a device or surgical procedure being done to alliviate pain. Frakly am leery of them. I read patient reviws on just nerve stimulators and frankly quite a few weree disappointed. Of cours there were some that swear by it. Thee s another option and I forget what it is medically but explained to me. The doctor that I ws under the care of said it is not a major surgical operation and done as an outpatient. My MRIs showed that th ligaments in my vertebrae was clamping down on my nerves creating pain. I could undrstand that. This procedure entailed making a small incision and placing a catheter in my spine with a small scizzer or scissor which seems like the correct spelling and cutting the ligament to release the pressure on my nerves. I thought that sounded good and a referral was made. My insurance company denied paying for`my procedure saying that it was experimental and as of yet not approved. No way ws I going to pay it out of my pocket. Not only is it expensive but I couldnt afford it. Maybe now it has been appr`ved by the FDA who I dont believe in anyway. With the stupid insurance that I have, I would still have to pay 20%. So, if the procedure lets say cost $100,000, my share would be 20,000 and that is out of the question. I know for a fact that any insurance company would not pay the full amount; proBably morre like $60,000 or so. Doctors charge more because they know insurance companies will pay less. That is my opinìn the financial matter and politics enter in as well. I have wised up over the years and did my own research. You would be surprised what you can find and learn. Thanks to the internet. Sometimess I ever wonder if anything can realy be don to help with pain. I almost come to the conclusion that we have to accept that and go on with our lives. We can hurt constantly, sometimes with agony, pop pain pills and eventually become addicted, possibly doing mediical marijana which in WA is legal and I am thinking of it or do without and cry somedays with all the pain. We as humans should not have to suffer so and that goes for animals as well. I am glad I am a compassionate person who is always willing to tell like it is and I feel grateful that there is a pain forum to share. This one is so active and responsive. Many a friend can be made here and not always have to talk bout our pain but to strike an accord to talk of good things as well. ON that note, it is almost 1:00 am or 0100 ane it is time to go to bed.

Wish you the best,

mel

Mel,

I know I hear ya on the legal marijuana I'm in Connecticut and we have a few dispensaries here, but like everything its expensive my insurance won't pay for it as I am on disability so that's out, but it is good to make new friends from all over, I hope you had somewhat of a pain free day as for me migraines all day, so it was a day in the dark in bed.

Talk soon take care

Cynthia ( cindy)