[Spiney95]

I am progressing slowly towards getting the actual implant and am quiet hopeful, given the miraculous trial. I have one concern that I am having trouble getting solid info on. What is the failure rate of the actual implant when the patient has a nasty case of Fibro?

I was dxed in 1976 when it was called Fibrocytis and few doctors accepted it as a legitimate illness. I was symptomatic going back several years before that. Fast forward to 2012, my body goes totally whacko when it perceives that it has been violated. Surgery is a nightmare, post op. The more agressive the surgery, the longer and more intense the flair. I am just now getting over the flair from the trial. It was worth it.

My concern at this point is that I understand that some patients with severe Fibro have a problem with the body not tollerating the foreign object in the body and it ultimately must be removed. I can't find any hard stats. The Medtronic rep. said that it was hogwash. On the other hand, I caught him in a whopper of a lie when I asked him about another concern. When I confronted him with prints outs on the subject, he turned beet red and appologized for the "confusion". I got a new rep.

I have a ton of instumentation in my spine and I am tollerating that. Just a thought.

I know my pain doc is a bit concerned about this and he asked me not to tell the surgeon how bad the Fibro is. I am willing to face the possibility of rejection and go forward because if it does work like the trial (after the flair is over) I will be able get a large part of my life back. Does anyone know of any good info on "Fibro related rejecetion"? Thanks.

[Mark56]

DOCTORMAN or DOCTORWOMAN!!!!! Put them in whichever order seems best. I have a friend who has bad fibro, and she is avoiding the SCS given her situation. Since I haven't a clue how she would compare to you, the DOC is going to have to be the party speaking for my two cents.... or is it one, due to inflation?

Oh well, I truly pray, Spine, that you are ultimately treated and provided a wonderful result!!!
Mark56

[Spiney95]

Pain Man says everything he finds is anecdotal. While we both agree that this is helpful, he wishes he could find a professional study........the scientific method. His "gut" response is that there a significant chance that I can reject it but thinks it is worth a try, given the success of the trial and what it will do for me. If we can pull the neuropathy out of the mix, several other conditions will improve.

Things are falling into place. The surgeon has agreed to have the new MRI done here. I have an appt. for a phone conference with him on Monday to discuss if he will let me have all preop work done here. I have told them what a burden it will be for my daughter to be making the huge trip up here and on to Louisville for several weeks in a row. I have left a message that if I have to have the work done locally, it will be done by one of the local shot jocks who has just recently received the training to do the implants. I figure that if he is willing to have the MRI done locally, there should be no problem with the other tests. This seems to be a good sign to me. It will be a lot easier on everyone if I only have to go up there for the preop exam and then the surgery and post op appt. I am more than willing to live with a prolonged Fibro flair if I know it will eventually go away and I will be able to keep the implant. Of course, there are no absolutes relative to any surgery. I truely believe that it is my turn to have a success and get some of these problems reduced. I guess I just have the preop jitters.

[JavaJan]

Spine, I can't offer you much in the way of advice or experience, but it seems to me that you have a lot of legitimate concerns. I know the logistics of everything are somewhat overwhelming, especially since you need help to get to and from all these appointments. If I were nearby, I'd certainly get you there! Meanwhile, I'll be praying that it all settles into place as the steps unfold. I understand a lot of what you're going through, since I also live alone and HATE to have to depend on anyone else for help! Hang in there, and know that we're all pulling for you!

Big ol' hugs,
Jan

[Spiney95]

The transportation is working out, thank you. Even if my daughter lived next door, I would request that that all testing that could be done locally, would be done here. The two and a half hour trip is very bumpy and I would prefer to avoid any unneccessary trips. Obviously, I need to see the surgeon before and after the procedure. I wouldn't want a surgeon who was willing to skip important steps It's just one day at a time now. I have the MRI next week then I will see the surgeon.

I just got a notice from my Part D provider that they are messing with my meds after the first of the year. Most of them are going on a different tier. I am shocked that they are leaving the Lyrica alone but I am limitted to coverage of 150 mg per day. It's been that way for years. I will most likely have to change my ER pain pill. That's fine with me because I have been hesitating telling my doctor that it is time to change anyhow.o I hate to sound like I am playing doctor. I have to rotate the ERs every year or two as they stop working. Once that happens, they don't work at any doseage.

I bet I end up back on Methadone. Been there on a relative low with great success for a year or so. It's been a long time so I am guessing it is time to give it a try again and it is cheap which will please the part d provider. It wouldn't surprise me if many of us are forced on to Methadone as a cost cutting measure. It's a good med if the doc knows what he is doing and networks well with your pharmacist. I am blessed that my professionals all work together in harmony and network well.

I adore my pharmacist. I deal with the owner/head pharmacist. They are part of a large clinic across the street and deliver. Whenever I call for refills, I am transferred to him. He always checks to make certain that I have a proper supply of OTCs. If I mention the grandkids are coming, he askes if I need any Texas Jumbo cinaman rolls which they love. He knows I don't keep junk and particularly sweets around as they aggravate the candida. I have poor self control and one sweet will throw me into a major crave then fungal flair. Bless his heart, if I need treats for the kids, he delivers them next door and the neighbor is given instructions to give them to the kids when they arrive and knock on the door. I am so grateful to have such a great friend who is on the ball and sooo thoughtful.. Y'all have a great night.

[eva5667faliure]

Originally Posted by spine95

The transportation is working out, thank you. Even if my daughter lived next door, I would request that that all testing that could be done locally, would be done here. The two and a half hour trip is very bumpy and I would prefer to avoid any unneccessary trips. Obviously, I need to see the surgeon before and after the procedure. I wouldn't want a surgeon who was willing to skip important steps It's just one day at a time now. I have the MRI next week then I will see the surgeon.

I just got a notice from my Part D provider that they are messing with my meds after the first of the year. Most of them are going on a different tier. I am shocked that they are leaving the Lyrica alone but I am limitted to coverage of 150 mg per day. It's been that way for years. I will most likely have to change my ER pain pill. That's fine with me because I have been hesitating telling my doctor that it is time to change anyhow.o I hate to sound like I am playing doctor. I have to rotate the ERs every year or two as they stop working. Once that happens, they don't work at any doseage.

I bet I end up back on Methadone. Been there on a relative low with great success for a year or so. It's been a long time so I am guessing it is time to give it a try again and it is cheap which will please the part d provider. It wouldn't surprise me if many of us are forced on to Methadone as a cost cutting measure. It's a good med if the doc knows what he is doing and networks well with your pharmacist. I am blessed that my professionals all work together in harmony and network well.

I adore my pharmacist. I deal with the owner/head pharmacist. They are part of a large clinic across the street and deliver. Whenever I call for refills, I am transferred to him. He always checks to make certain that I have a proper supply of OTCs. If I mention the grandkids are coming, he askes if I need any Texas Jumbo cinaman rolls which they love. He knows I don't keep junk and particularly sweets around as they aggravate the candida. I have poor self control and one sweet will throw me into a major crave then fungal flair. Bless his heart, if I need treats for the kids, he delivers them next door and the neighbor is given instructions to give them to the kids when they arrive and knock on the door. I am so grateful to have such a great friend who is on the ball and sooo thoughtful.. Y'all have a great night.

dear friend

a fellow fibro patient with other ailments
YOU BRING UP A VERY IMPORTANT FACT
AS YOU I ALSO HAVE A RELATIONSHIP
WITH MY PHARMACIST HE TO OWNER
OF HIS MOM AND POP DRUG STORE
I CHOOSE MOM AND POP STORES WE
NEED TO KEEP THEM ALIVE AS THE BIGGER
STORES SUCH AS WALGREENS AND OTHERS
ANYHOW AS YOU POINTED OUT
THE RELATIONSHIP WITH ALL OF MY DOCTORS
THANK YOU FOR BRINGING THAT UP


someone who care

[Mark56]

We became very much attached to the pharmacist after 20 years in the same spot, even bringing a thank you Christmas goodies tray for the staff each year to thank them for the caring service!!

Mom and Pop stores are the best, and we like them as well. It helps to know the folks with whom we deal.

Grateful in Colorado,
Mark56

[Spiney95]

Life can be a real hoot. I am dealing with what amounts to a Mom and Pop pharmacy that is located in a HUGE medical clinic. Go figure. I'm with you. I try to send some sort of seasonal treat over to the pharmacy via my precious aid. It feels good to know you are appreciated. Have a great day.

Sorry for my ignorancebut what exactly are Mom and Pop stores.....are they a brand name for a pharmacy? just wondering...or is it a store run by a husband and wife?? I come from Ireland so havent a clue what you mean......

[Spiney95]

Originally Posted by Jackiey

Sorry for my ignorancebut what exactly are Mom and Pop stores.....are they a brand name for a pharmacy? just wondering...or is it a store run by a husband and wife?? I come from Ireland so havent a clue what you mean......

A Mom and Pop shop is a business that is generally operated by the owner. They tend to be small enough that the owner knows his clientel and their needs very well. It has been my experience that I get much better service and genuine concern for my needs. Off to the doc now. Best wishes from across the pond.