What happens when a procedure doesn't work, does your PM stop trying?

[slipnslide]

I'm wondering if anyone has had relief from a procedure, only to have it fail the second time around? Was that it???.. no more attempts? Just more pain meds? I'm asking because I am fearing that this might happen. I've been going through the appeals process for many months regarding RF's in the C-spine following ACDF Surgery, and my PM was good enough to write another letter backing up his beliefs and an explanation as to why the procedure was necessary, and why it is necessary again. I can't say enough good about my PM and about his attemps to help me, but there lies my fear!...What happens when a previous RF in the hip & abdomen worked 90%, total pain relief, with the exception of just a burning sensation which was nothing but a nuisance, whereas this second time around, saying that I rec'd 10% relief would be generous?

I don't have a regular appointment with my PM later today, I am just scheduled to go into the office to pick up my RX's, so I won't have the opportunity to discuss my options until my next appointment on Feb 4th. I am so afraid that if I've still not noticed any pain relief by that time, that he will tell me that there is nothing else he can do. The severe pain that I have from this problem is not 24/7, but it is so random and so excruciating that once it starts, the pain goes from 1-10 in about 5 or 10 minutes. I've noticed that it seems to happen when sitting, bending, stretching, or when I am laying down (worst and longest episodes). Nothing has helped as far as pain relief other than the previous RF done about a year ago. Maybe my fears are unfounded, but with me having asked my PM to go above and beyond "the call of duty" by writing letters for the C-spine RF, I'm afraid he may start to view me as "a thorn in his side". I don't want him to give up on me with these hip/abdomen/thigh pains, and not be willing to try the RF again.

I'm also wondering if Insurance would be willing to pay for another repeat of the procedure when I just had it done on December 20th...whereas in a previous post of mine Lobelsteve had remarked:

http://brain.hastypastry.net/forums/showthread.php?t=25966

RF on these nerves is not well studied.

A lot depends on what temperature and time were used to lesion, or was it a pulsed RF procedure, and what sensory and motor thresholds were used or if none were used.


Wish it were easier.

If things were done to the best available technique based on accepted guidelines: There could be a 2 week dysesthesia period before the pain goes away. Most folks feel relief within 3 days when the post procedure soreness dissipates

I've got one more day before I reach that 2 week time period from when I had the RF done and dread dealing with this pain for another month before seeing my PM again. The pain and nerve RX's I take don't even touch this. What should I do???:confused:

I want to add that I had an abdominal CT when these pains started a few months following the ACDF & Hernia surgeries. The CT showed scar tissue and inflammation at both surgery sites, at the iliac crest donor site & at the ilioinguinal hernia repair site. Can something else be done to fix this problem for good?

Thanks,

Kim

[ejskennedy]

I am very sorry for all pain you're in. I don't have back or spine issues, but I do have (so far) untreatable headpain/migraine from a cerebral aneurysm. I have had many doctors exhaust their resources (mental and physical) and stopped seeing me. I have found that doctors are pretty used to being helpful and when a "difficult" case comes up that they cannot find an answer to, they react like any person who's frustrated would: anger, disbelief, sadness...so many emotions. I was really starting to feel like a crazy fraud. If doctor after doc can't help, maybe there's really no problem. Not a chance! Now, if a doctor "breaks up with me" I just start looking (again) for someone who likes a challenge. After 3 years, I have just found a doc who told me he will never give up as long as I don't. I drive 3 hours to see him and he is worth every mile, if for his perserverence only. So I say to you, you deserve to fight and have someone fight with you. This pm might just not be a good fit for you anymore. If s/he's not ready for a challenge, find a doc who is. We all deserve a chance to live our lives as pain-free as possible.

Good luck and I hope you have the energy to fight the good fight.

gentle (((((hugs))))
Erin

[Rozia]

I have a friend who gets those procedures and when she gets them they are in a administered in threes; Like one on a Monday , then wed and then friday . some times they work , some times they dont , then one will work while the others dont . Her Insurance pays for all three.

[Mark N]

Kim, whether your PM will drop you or not depends on how he deals with difficult cases. Some are interested in their success rate and don't want those of us that are difficult cases. I am lucky to have an OSS that specializes in difficult cases and your PM may be that kind of doctor too.

As much as we want a solution for our pain there are times that there isn't an answer to solve our pain other than pain meds. I hope everything you have plans for your pain works out for you.

[lobelsteve]

I have a friend who gets those procedures and when she gets them they are in a administered in threes; Like one on a Monday , then wed and then friday . some times they work , some times they dont , then one will work while the others dont . Her Insurance pays for all three.

Her insurance is a bunch of idiots, she is a guinea pig, and her doc is criminal in his actions.

Just some food for thought.

[slipnslide]

Erin,

My PM doesn't strike me as the kind of person to abandon a patient totally unless they were doing something that would jeopardize his practice, thank god. I see him for my spinal issues too, so I doubt he'd tell me that he has nothing left to offer me. My concern is that I won't be offered this procedure again, whether it be by my PM, or by the insurance company because of the lack of success from this last RF, or because I just had it performed 2 weeks ago. I am like you, not willing to give up!:D I hope you have some pain free days ahead!

Rozia,

I'm thinking that perhaps your friend got confused as to what procedures she's had done. As lobelsteve hinted toward, "something's rotten in Denmark!"...LOL;)

Mark,

I honestly don't think he will drop me, but he may not be able to offer me anything more, other than pain meds...which to me is treating the pain, instead of the cause:( . I know I may not have any recourse, but if he will be willing to try something else or do the RF again, but insurance won't pay for it, I would consider paying for it out of pocket if he and I agree that it might work the next time around.

Kim

[Kathi49]

Kim,

I am so sorry you are going through this still. :( But I don't think your PM would drop you. I don't know what he can do but I think it is good that he is trying everything possible including writing letters. I just wanted to add that I agree with your statement treating the pain instead of the cause. I went that route and never want to do it again if I can avoid it at all. I just believe in my case they should have gone with the fusion asap since it supposedly was pretty bad at that level. Anyway, that's not to say we don't need the meds but I am like you, find the darn cause IF possible. And I will say this much. The last time I was at my PM's office I was running off at the mouth, as usual LOL! You know...just saying maybe it is this, that or the other. He just laughed and said, "Let's try to find out WHERE it is coming from!" So, bone scan it was. He just wants to see where the worst of it is. And also said he didn't want to put me through the injection route again. I had had the ESI, the SI joint, facet injections and then the RF...the latter helped! But I know what you are saying too. You are right, we don't know if there is anymore they can do other than the meds. I know of two people that were told there just wasn't much more they could do than to take the meds. And with this central pain or sensitivity there really isn't much I can do either except take the meds and/or exercise. And aqua therapy is next. It probably won't solve the problem but it sure can't hurt...I don't think. :) Hang in there Kim...I will know more myself tomorrow.

[ejskennedy]

Hi Kim. Just thinking about you. I'm happy that your pm is dedicated to you and your care. That really is priceless. I think you mentioned before that you felt uncomfortable/embarrassed (maybe?) about asking for the procedure again and pushing for more work for your doc. Do you have someone to bring with you to the doc that can help with your confidence to approach this issue again? I am very doctor shy/phobic and have a hard time asking for what I need at times. When I feel that way, I'll make my husband go with me. For some reason men don't have a problem asking for what they want:o :D .
What do you think, Mark N.?

Hear me roar,
Erin

[slipnslide]

Kathi,

I'm approaching my breaking point with being an "anomoly"...lol. I always fall outside the bell curve of what is normal;) ....My white counts are still high (16-20 range, whereas 10.8 is the upper limits of normal), "oh but not to worry!...It could be CML, but we'll just watch and wait, and if need be, do another bone marrow biopsy" is what i get as a response from my Hema/Onc. Also, I come out of the ACDF surgery with the inguinal and spigelian hernias, oh!...but that rarely happens!!!:rolleyes: ...now I start reading about these nerves that are all screwy, and once again, it's rare to have problems with these following autograft & hernia surgery:rolleyes: . Do I sound cranky today???;) :D
But you're right Kathi, let's get to the root of the problem (no pun intended...lol), and get it taken care of once and for all!:)

Erin,

I have a good rapport with my PM and really don't have trouble talking to him, however, he has always been the one to recommend what procedures might work. I can, and will, do what I have to do as far as communicating my fears and concerns with these hip/abdomen/thigh pains.;) I just fear that he will say "the last one didn't work, so what else can i do?":(

Kim

[Kathi49]

Kim,

LOL! And I hope you know I am laughing WITH you. :) I know what you mean; it could be this, that or the other. And after talking with my one friend today she says the same thing. We get one thing taken care of and five more pop up! Now here I sit thinking I have some kind of bladder infection; sorry bout that lol, but instead of rushing off to the doctor I am going to drink some Cranberry juice and see if it helps. But my point is with that...who knows what it is for sure because I also get bladder spasms from other things!

Anyway, root of the problem it is...I sooooooo agree!

[slipnslide]

Kim,

LOL! And I hope you know I am laughing WITH you. :) I know what you mean; it could be this, that or the other. And after talking with my one friend today she says the same thing. We get one thing taken care of and five more pop up! Now here I sit thinking I have some kind of bladder infection; sorry bout that lol, but instead of rushing off to the doctor I am going to drink some Cranberry juice and see if it helps. But my point is with that...who knows what it is for sure because I also get bladder spasms from other things!

Anyway, root of the problem it is...I sooooooo agree!

Kathi,

LOL...you can laugh with me and at me!....;) I laugh at myself all the time! And.....I'm a firm believer in "the cranberry juice thing"....I think if it can be caught early enough and flushed out with cranberry juice, then awesome!....but, if it gets worse, don't hold off on going to the doctors. I let it go too long one time and paid dearly with pain, burning, and fever....needless to say, I learned my lesson! Hope you're feeling better soon.:)

Kim

[Kathi49]

Kim,

I didn't mean to hijack your thread and talk about the "cranberry thing" LOL! But this is silly...I bought some cranberry chews and then downed some water. And since nothing is sacred anymore, I used a Vagifem pill last night. And, not to be gross, but that's the thing with these darn hysterectomies...you know what I mean LOL! Soooo, it seems to have worked. I am much better this morning. I didn't really think it was an infection as this happens from time to time and I have kind of learned to tell the difference. I will put it this way...I know when I am low on estrogen! :eek: :) It just FELT like I had an infection but WITHOUT the usual symptoms of a bladder infection. Ugh...hard to explain. But I think you know what I mean. :D So, cranberry chews it was...and this other. It has helped...probably moreso the tiny little pill LOL!

[slipnslide]

Kathi,

LOL! Now I am laughing with & at you!:D You crack me up...you're right, nothing is sacred any more!:eek: :D :D

Kim