NiNi53/Kathy please read

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straydog
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   Posted 7/15/2011 10:50 AM (GMT -6)   
Hi Kathy, I wanted to check on you about whether or not you saw your dr again about removing the SCS unit? Did you have any luck? If your dr is still not wanting to remove the unit then you may want to consider consulting with either a general surgeon or even a vascular surgeon. I just think it is wrong for your dr to ignore your wishes especially when the unit is worthless to you. You should have the right to have it removed as you did having it implanted.

By the way, not sure if you know this or not but many of us here are signed up with the FDA website to receive alerts about different types of recalls on things. If you are interested in this you can go to their website and sign up for any type of recall you may interested in. I signed up with them for the Medtronic pain pumps and medications to keep track of recalls. I found three recalls on my pump that my dr never informed me of, in fact he acted like he knew nothing about them. I know better, he was sent a letter from not just the FDA but from Medtronic too. Another reason I am glad he is no longer my dr.

Anyway was thinking about you and wanted to follow up about your dr.
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straydog
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   Posted 7/16/2011 8:47 AM (GMT -6)   
Bump
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NiNi53
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   Posted 7/16/2011 9:08 AM (GMT -6)   
Hello Straydog, I gotta say, its not my doctor who I am really angry with although he is certainly part of the problem.  I have had such a difficult time finding a good pm doctor, I hesitate to "rock the boat".  I believe he will take it out, thats not the issue at this time.  My thing is, I dont think I should have to pay for it to be removed.
 
I should not have had to pay when it was installed to deep in my back.  But I did, I paid to have to it reinstalled, and since then it still has not worked.  Funny thing when I first went to my dr a little over a year ago, there were phamplets all over his office about Medtronics. The last time I was there which was June 29, I looked around and there were no Medtronics anything, anywhere.  Last year the reps from Medt. were in and out of that office like they were all lifelong friends.  Now I havent seen anyone for months now that I think back.
 
So I think the romance my dr once had with Medtronics is now over.  Most likely due to the fact that there hardware is trash.
 
If you have any ideas how I can approach my dr. in a way that doesnt sound so accusatory, but not have to pay for another operation, (which in truth, I havent even started to pay for the first) do you know what 20% of 80,000. is still more than I will ever be able to pay, double that due to the second try and come on.
 
As for the website, yes, yes yes.  You say just go to the FDA websit and sign on for the product you want the information about is that correct.
 
Thank you so much for letting me know about that website.  Also thank you for thinking of me and my troubles with this useless piece of metal in my back, which now by the way catchs on chairs sometimes when I go to stand up from those  gray metal chairs, is when it mostly happen, the corner piece inside my back is poking out so far, one good rip and thats going to be me at the er. dont want that.
 
Thank you again, I will most certainly jump on that website.
 
Hope this finds you feeling well, take care and thanks again 
degenerative disc disease, fibromyalgia, osteoarthritis, neuropathy, lumbar laminectomy july 1998 no help, rechargeable neurostimulator unit low right back w/lead wires to left side and right leg unit not working just sitting there.i am 57 years young in may will turn 58. i have 2 grown daughters, 25 and 29. i have 2 grandchildren, 9 year old grandaughter and 5 yr. old grandson

NiNi53
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Date Joined Mar 2011
Total Posts : 816
   Posted 7/16/2011 7:07 PM (GMT -6)   
Hey Straydog, just wanted to let you know, I signed up with the FDA on recalls of devices.  It was easy and I wanted to thank you for your help.
 
Take care, hope you are doing well, and thank you again
degenerative disc disease, fibromyalgia, osteoarthritis, neuropathy, lumbar laminectomy july 1998 no help, rechargeable neurostimulator unit low right back w/lead wires to left side and right leg unit not working just sitting there.i am 57 years young in may will turn 58. i have 2 grown daughters, 25 and 29. i have 2 grandchildren, 9 year old grandaughter and 5 yr. old grandson

straydog
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   Posted 7/17/2011 12:24 AM (GMT -6)   
Kathy glad you answered hereabout the SCS unit. Who implanted your unit a surgeon that your PM dr referred you to? I hear you on the money situation.You know implanting these SCS units and pain pumps seems to be something that happens quite frequently believe it or not. I know someone with a pump that was implanted too deep and it was useless. It was so deep they were not able to access it to do her pump refills, let me tell you I have seen the size of the needles used and they are not tiny by a long shot, lol. They did have to take that pump out and implant another one. The cost of course was all on her insurance and her on paying for all of this mess.

When something of Medtronics is on recall they require all equipment to be returned directly to them so their people can look at it to see what the problem is. I wonder how many times their people ever found any units defective. I imagine not many.

It is interesting what you said about the Medtronics reps not hanging their hats everywhere at your drs office anymore. Makes you wonder what the percentage is of successful units your drs has recommended to his patients. Something has happened there thats for sure.

Glad to hear you checked out the FDA's website. It is really an interesting website, plenty of reading can be done there, lol.

Take care of yourself.
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NiNi53
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   Posted 7/17/2011 12:06 PM (GMT -6)   
Hey Straydog, hope you are feeling well.  You are so right something definitley happened between my pm doc and the Medtronics reps, I mean one day they were exchanging phone numbers to invite the doc to one of there 2 year old daughters b-day party, that was last year, now nothing.
 
My pm doctor did the surgery to implant the neurostimulator in my back, he is a neurosurgeon specialising in pain management.  His credentials are great, he has written papers on pain management and other things.  Heres the thing, he is also a human being, he is not a god, he made a mistake implanting my unit to deep.  He did the second surgery also.  I believe the problem is the unit its self.
 
It makes no sense to me that even when the problem was corrected, the unit itself never worked.  One option that was given me was to have this unit removed and install a new one.  Thats not going to happen.  I am going to have this unit removed sometime in the near future, nothing else will be installed in my body.
 
I could be wrong, maybe its not the unit, maybe its my own body rejecting this foreign object in my body.  Maybe I am one of those people who just cant have it in my body, my body my be rejecting it.  Whatever the reason, once its out, there will be no more foreign objects installed in these old bones, lol.
 
Hope you are feeling well, I will let all know when I go in for the removal of this unit, its in and out surgery.
 
Take care of yourself, and thank you.
degenerative disc disease, fibromyalgia, osteoarthritis, neuropathy, lumbar laminectomy july 1998 no help, rechargeable neurostimulator unit low right back w/lead wires to left side and right leg unit not working just sitting there.i am 57 years young in may will turn 58. i have 2 grown daughters, 25 and 29. i have 2 grandchildren, 9 year old grandaughter and 5 yr. old grandson

straydog
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Date Joined Feb 2003
Total Posts : 16295
   Posted 7/17/2011 3:26 PM (GMT -6)   
Kathy, no you are not wrong, our bodies were not made for a lot of this hardwarel they are putting in people these days. Your body can reject it. Think about it this way, I know a lot of people that have had surgery, whether its their back, a foot or a hard and hardware was put in. The person ended up with more pain that what they had before the implanted hardware. A year down the road from surgery they are going back into surgery to have the hardware removed because of severe pain. Have it removed and the pain level drops.

My PM dr is also a young retired neurosurgeon and their knowledge really makes a difference in the care. I had another PM dr that was internist and he was wonderful, but he died unexpectedly. The PM dr I was seeing when I had my pump put in was an anesthesiologist turned PM and I think there is a huge difference between them.

I do hope that some time soon you can get the unit removed. Its a shame the dr will not remove it and not billl you for it. That would be a decent thing to do.

I am trying to get an MRI scheduled for my right shoulder. i messed it up a couple of months ago. Back then my PM dr said it was referred pain from my neck, well it is not referred pain. I have too coordinate the MRI so after having it I can go to the PM drs office and let the nurse make sure the MRI machine did not turn my pump off. That can happen, lol.

I will be so glad when they get this internet service fixed out here in my area. It keeps booting me off. Take care.
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NiNi53
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Date Joined Mar 2011
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   Posted 7/17/2011 6:27 PM (GMT -6)   
I think you are so right, hardware in our bodies is not natural.  At least not for me.  My doctor will take the unit, thats not the problem, but Medicare and I will be paying for it.
 
I have had so much trouble finding a good pm doctor, and aside from the neuro-stim is wonderful, as I said, hes human so he made a mistake. It happens, I am scared if I bring up the fact that I should not have to pay for it since it was not my fault, I dont want him to drop me.  I know its silly, and I havent even said anything about who is paying for what.  But I swear, I dont want to have to look for another pm doctor.  He is really good, he spends time with me (and his other patients) during office visits, he takes what he does very seriously, as he should.
 
I gotta tell ya, between having to share the cost with Medicare to get the unit out, or losing him as my pm doctor, he wins hands down all the time.  I have run the gambet of what I call cash cows, they are doctors with 20-30 patients in his office, but no one ever waited more than 3-5 minutes before you saw him, when you came into his office, he had already written the scripts.  That was fine until I hurt myself again, it was a nightmare I do not want to have again.
 
He was the 4th in a long line of bozos before I found a good doctor.
 
Ok thanks again, take care and hope you are feeling well.
degenerative disc disease, fibromyalgia, osteoarthritis, neuropathy, lumbar laminectomy july 1998 no help, rechargeable neurostimulator unit low right back w/lead wires to left side and right leg unit not working just sitting there.i am 57 years young in may will turn 58. i have 2 grown daughters, 25 and 29. i have 2 grandchildren, 9 year old grandaughter and 5 yr. old grandson

straydog
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Date Joined Feb 2003
Total Posts : 16295
   Posted 7/18/2011 2:04 PM (GMT -6)   
I hear ya on not wanting to be looking for a new dr. It is just too hard to find a good, reputable and knowledgeable PM dr these days.

When I went in for my pump refill last week my dr and I were talking about the costs of the medications used in the pumps. She said that Medicare pays so little on the meds that goes in the pumps that its just not cost efficient for PM drs locally to handle pump patients anymore. The only way they can break even is if they mix the meds right there in the office, which she does. My other dr had a pharmacy that delivered the meds pre-made to his office. This situation makes me a little nervous. Lets face it not all drs know compounds and how to mix them. She has so many PM drs referring pump patients to her and she is really selective on taking on a new patient. She requires their medical records from the past year to review before she even gives an appt. Medicare is really making it hard for people on it because they just keep cutting the drs fees.

Does your state not offer secondary ins coverage to Medicare? I know not all states offer it, I did not realize this until looking for it for my husband. I was shocked and my first thought was how do they think these people can pay some of these charges at 20%. I went thru AARP and found a policy for my husband for a little over $200 a month, its good coverage since he is now 65. I am covered thru his employer still as a secondary to my Medicare and let me tell you, it shot up to $730 a month this year. We are going to drop it the first of the year. It is costing us way too much and the coverage is terrible. I still have to pay more out of pocket to the drs and hospital than the insurance pays. I will go thru AARP and see what I can find for me and I am sure it will be much less. If they paid decent that would be one thing but they don't. We are insurance poor around here.

I would still complain like crazy to the dr the problems with the SCS. Make sure that stays on record. Take care.
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NiNi53
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   Posted 7/18/2011 2:19 PM (GMT -6)   
I am in Maryland and yes we can get a secondary insurance, its sad to say I cant afford the payments of a secondary insurance.  Look its not like I am seconds away from homelessness.  But If it were not for my youngest daughter, with whom I live, my life would not be as good as it is right now.
 
When they get married next June 2012, (I mean Sara and Donny), I will have more money and plan on getting a secondary insurance asap.  See when they are living together, they make good money, if I want they dont want me to pay any bills.  But for me, I must pay something, I worked outside the house most of my life until I became disabled, and as you know SSD is not going to make you a millionaire.  So I think I will pay the cable tv bill and many some groceries.  Cant wait.
 
You take care also, thanks for the AARP that who I think I will go with when it comes time.
degenerative disc disease, fibromyalgia, osteoarthritis, neuropathy, lumbar laminectomy july 1998 no help, rechargeable neurostimulator unit low right back w/lead wires to left side and right leg unit not working just sitting there.i am 57 years young in may will turn 58. i have 2 grown daughters, 25 and 29. i have 2 grandchildren, 9 year old grandaughter and 5 yr. old grandson

straydog
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Date Joined Feb 2003
Total Posts : 16295
   Posted 7/19/2011 11:32 AM (GMT -6)   
Kathy by using AARP's website you can go directly to your state and find our who sells the secondary coverage in your state and find out all sorts of info like what they cover & pay, how much the premiums are a month and that sort of thing. I am switching no question about it.

I too started working at the age of 14 in a pizza place as a dishwasher, lol. Back in those days there was no fancy dishwashing machine, just me, lol. I worked every summer from that point on. it sure did not hurt me starting out young either. gave me an appreciation for work and some responsibility.

I think it great that you live with your daughter. Its wonderful that this is possible. I am quite sure you more than earn your keep living with her. Its not about how much money you pay out a month for this or that.

You are so right about SSD, no one makes any money when they are trying to live on that a month. I know we were not prepared at all for me to have to stop working and even though I got approved right away the months of no pay at all was bad and then of course the reduction of income is something else. But, with all of that said i am very grateful to be getting a check once a month. You learn how to manage what you get.

Hang in there that is about all any of us can do. Take care.
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NiNi53
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Date Joined Mar 2011
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   Posted 7/19/2011 1:51 PM (GMT -6)   
Amen to that, yes you learn how to make a meal last.  And you are right, its not just the money, I "keep" house, cleaning, cooking.  I will say when I was a single parent, rushing home to cook quick meals.  The one great thing is I have learned to cook, and I mean real meals, It make me very proud of myself.  So we take the good with the bad.
 
Both my daughters worked from the time they were 15, they wanted things as a single parent I couldnt give them.  They quickly learned the value of money, more important, both of them have great work ethic, and that you cant buy.
 
You take care also.
degenerative disc disease, fibromyalgia, osteoarthritis, neuropathy, lumbar laminectomy july 1998 no help, rechargeable neurostimulator unit low right back w/lead wires to left side and right leg unit not working just sitting there.i am 57 years young in may will turn 58. i have 2 grown daughters, 25 and 29. i have 2 grandchildren, 9 year old grandaughter and 5 yr. old grandson

straydog
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Date Joined Feb 2003
Total Posts : 16295
   Posted 7/19/2011 4:45 PM (GMT -6)   
I have to laugh, I was also a single parent with two kids. One thing I tried to instill in both of the kids was a good work ethic and I apparently succeeded in that feat. I did teach them the value of a dollar and it is amazing how much and quick they learn when it is their dollar involved too, lol.

Both of them went into a line of work that would keep them employed and be able to make a decent living at the same time. I worked two jobs so I made sure they understood that was not the way they really wanted to live if at all possible.

I remember you mentioning that you learned to cook some really fine meals. That is awesome. I did cook when they were very young before going to work. Now a days I could care less about cooking, lol. We do eat out a lot since it is just the two of us. I get hungry sometimes for what I call real food which is a home cooked meal. Lately, I do admit to nearly burning and ruining a couple of meals but I ended up saving the, lol. Having active crohns disease really does interfere with eating, so many foods are off limits for me and many times rice and peanut butter sandwiches are my main stay.

You will have to share one of your best recipes with us soon. Its about time to do an OT and share some recipes here at the forum. Take care.
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