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Old 03-27-2011, 04:19 PM   #1
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Please help! In need of advice on IDET/Discogram and pain in general

Hi,
I've posted on here in the past few years and unfortunately my situation doesn't seem to be getting any progress. I have been living with terrible and constant lower back/leg pain for 13 years now after an accident at work in '98.

The 3 surgeries that followed from 2000 to 2003 (2 discectomies, and spinal fusion L5/S1 only made things worse and the spinal fusion surgery seems to have triggered an "all over the body" pain which is really strong in my knees, hips, and shoulders.

In 2006 I had a spinal cord stimulator test run which seemed to help with around a 20% reduction in my back and leg pain, but when it was actually implanted it was closer to 10%. They said it was because the leads were placed too low and they went and realigned it which didn't seem to help.
Now they are saying it's because of all of my scar tissue from the past surgeries. It's helping a bit with my leg pain so I decided to leave it in.

In 2008 my PM doctor brought up the idea of the IDET which would require a subsequent Discogram to be performed in order to see if I am a candidate for it.

He's pretty much told me this is my last chance and that everything else has been done, which I don't doubt. Anyway, long story short I finally have authorization for this after fighting with my WC insurance all the way to the state Supreme Court (9 appeals over 3 years!)

I have been reading up on it more now that I actually have the auth for it and I'm still not sure what to think. Aside from being scared to death of the Discogram, which I hear is pretty torturous, I can't find too many success stories with IDET. I see people with temporary relief or that it didn't do any good at all. I also heard that it can make some people worse off!

With my history of surgeries I can't stand the thought of being worse off than I am now. It doesn't even seem possible, but I'm sure it is.

I'm just really frustrated, as someone with 13 years of constant and constant chronic pain would be.

Over the last couple of years the pain is only getting worse. The pain meds don't seem to be doing a thing! (Percocet 8x 7.5/325mg a day, Duragesic 100mq/ every 2 days) I am stuck in bed 90% of every day and rarely able to go outside or even outside of my bedroom... I have increased depression which I can't even take medication for because of the side effects. I've tried every type of anti-depressant on the market too.

Any advice on IDET/Discogram or something else I may be able to try would be greatly appreciated!

Thank You.

 
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Old 03-28-2011, 10:34 AM   #2
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Re: Please help! In need of advice on IDET/Discogram and pain in general

Wow. I am really sorry you surgeries haven't helped you. I have my doubts that IDET would, either. IDET is not recommended for patients with previous surgery at the same level, so I don't think your PM is the right person to recommend this. If I were you, I would discuss it with your surgeon.

Have you sought out the opinions of any other spine specialists? If your doctor is a neurosurgeon, it might be good to get the opinion of an Orthopedic Spine specialist (not a reg. ortho but one with a fellowship who limits his practice to the spine); conversely, if your dr is an OSS, then seeing a Neuro with a spine fellowship will give you a different outlook.....fresh eyes, so to speak.

Has anyone suggested that you might be a candidate for the pain pump? I have one after dealing with chronic back and leg pain for a couple of years without a lot of success. The pump gave me my life back and reduced my pain by 50% or more. I have since had to have more surgery, and the pump helped keep pain more tolerable. You might want to discuss this with your surgeon and see what he thinks. I've had my pump for almost 10 years and just cannot imagine having to do without it any more. I did have a 6 months period where the pump wasn't working due to an accident in the OR, but had a new one implanted, thank God, which immediately reduced my leg pain by at least 60%. As you can tell, I swear by this thing and highly recommend it in cases of chronic pain that can't be helped surgically.

Keep in mind that I'm not a doctor and am just giving you my personal outlook based on my own experience.

I wish you the best of luck in finding a way to keep your pain manageable...please stay in touch.

Carol
__________________
Lumbar surgery x 7 over the last 30 years.
cervical fusion...2 levels
medtronic pain pump implanted
Last surgery Oct, 2010, 3 levels

 
Old 03-28-2011, 05:46 PM   #3
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Re: Please help! In need of advice on IDET/Discogram and pain in general

Quote:
Originally Posted by maltluver View Post
Wow. I am really sorry you surgeries haven't helped you. I have my doubts that IDET would, either. IDET is not recommended for patients with previous surgery at the same level, so I don't think your PM is the right person to recommend this. If I were you, I would discuss it with your surgeon.

Have you sought out the opinions of any other spine specialists? If your doctor is a neurosurgeon, it might be good to get the opinion of an Orthopedic Spine specialist (not a reg. ortho but one with a fellowship who limits his practice to the spine); conversely, if your dr is an OSS, then seeing a Neuro with a spine fellowship will give you a different outlook.....fresh eyes, so to speak.

Has anyone suggested that you might be a candidate for the pain pump? I have one after dealing with chronic back and leg pain for a couple of years without a lot of success. The pump gave me my life back and reduced my pain by 50% or more. I have since had to have more surgery, and the pump helped keep pain more tolerable. You might want to discuss this with your surgeon and see what he thinks. I've had my pump for almost 10 years and just cannot imagine having to do without it any more. I did have a 6 months period where the pump wasn't working due to an accident in the OR, but had a new one implanted, thank God, which immediately reduced my leg pain by at least 60%. As you can tell, I swear by this thing and highly recommend it in cases of chronic pain that can't be helped surgically.

Keep in mind that I'm not a doctor and am just giving you my personal outlook based on my own experience.

I wish you the best of luck in finding a way to keep your pain manageable...please stay in touch.

Carol
Thank you for the reply. I really appreciate your feedback on this.

My PM doctor is the one who would be preforming the discogram/IDET. He also does a lot of injection pain blocks, SCS implants, and has assured me he is the best person to preform these since he has been teaching other PM doctors how to correctly preform the discogram and IDET for many years.

He also made me feel a bit better when I explained my fear of the pain levels I might have during the discogram, which I have read quite a lot of horror stories on here about. He told me about one patient in general who had it done by another PM doctor and then again several years later with him and said it was like two completely different experiences, with the latter being almost painless. I'm not expecting painless, but it made me feel a little better overall.

I have met with a few surgeons, but none of them seem to think I am a candidate for anything surgical and at that point they seem to lose all interest in me. I told them I am desperate and can't keep going on with this level of pain, but they tell me to try things I have already worked at over the last 13 years (aqua therapy, pain meds, pain blocks, etc..)

Thanks for bringing up the pain pump, I sometimes forget that is an option.

My last GP doctor, who I also liked, mentioned the pain pump, but my current PM doctor doesn't do the implants for these and I get the sense he is a little anti-narcotic to be honest. He's more of a SCS/IDET/Pain block alternative type of doc.

I would surely be open to the pain pump, but my only concerns are that I tried a couple forms of morphine derivatives in pill form and became nauseous from them and had to go back to Percocet/Duragesic.

I have a couple questions if you don't mind answering them...

Do the majority of these pumps use that as the main narcotic?

Were you on high doses of pain meds prior to having the pain pump implanted?

Do you take pills in addition to the pain pump for breakthrough pain?

Are you in control of the amount of pain meds administered?

Where do they implant it and how large is the implant? I already have a battery, metal leads, 4 large screws, and a cage implanted so I may be running out of room.

Thanks again for your reply. It means a lot to me.

 
Old 03-29-2011, 10:38 AM   #4
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Re: Please help! In need of advice on IDET/Discogram and pain in general

Many PM doctors seem to be anti-narcotic and want to do nothing but injections....or the SCS. It might be time to seek out another doctor who would be open to implanting the pain pump. My orthopedic spine specialist recommended a neurosurgeon to do the surgery, so perhaps you can get a referral.

I'll try to answer your questions in the order you asked...

1. There are other medications that are used. For instance, I am on dilaudid
because it was taking too much morphine to help my pain. They can also
use fentanyl, but I believe that is the last resort as it is so powerful.

2. Generally, your pain pump is the main medication.

3. I was on oral methadone prior to having the pump put in. One reason I
got the pump was that methadone was causing personality changes and
I didn't want to go on oral LA meds as the dosages would be pretty high.

4. I do take oral meds (Lortab (narco) 10/325 as needed for breakthrough
pain. However, that is prescribed by my much loved ortho as my PM is of
the mind that oral meds shouldn't be needed unless your pain levels are
consistently severe. Mine isn't, but I do have times when I am in need of
something due to too much activity for me.

5. I am not sure what you mean by being in control of how much pain meds
I get. Are you talking about the bt meds or the pump med? In either case,
that will be up to the doctor after he evaluates your needs.

6. The pump is installed below the waist and to the side (in front). A little
"pocket" is opened, the pump is inserted with a catheter going to the
spinal area where the surgeon thinks it will most help you. The meds drip
directly into the spinal canal and those meds are much more potent than
what you could take orally. There are 3 methods of trial that I am
aware of and every surgeon has his preference. In my case, I was hos-
pitalized for 3 days. The trial pump was an IV drip with the catheter
leading to the spinal canal (tiny incision) and the amt was increased
over a period of two and a half days until I was fairly comfortable. The
catheter was then taken out, and I was scheduled for the surgery.

7. There are a couple of different sizes...mine is about as large as a hockey
puck. In your case, especially since the SCS is not bringing you much
relief, they may opt to remove it when they put in the pump.

If you have any other questions, please feel free to ask. I am willing to answer anything that I can if it will help you.

Please let me know how you are doing and if you find a dr. to put the pump in for you.

Carol
__________________
Lumbar surgery x 7 over the last 30 years.
cervical fusion...2 levels
medtronic pain pump implanted
Last surgery Oct, 2010, 3 levels

 
Old 03-29-2011, 02:48 PM   #5
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spoonmanx HB User
Re: Please help! In need of advice on IDET/Discogram and pain in general

Quote:
Originally Posted by maltluver View Post
Many PM doctors seem to be anti-narcotic and want to do nothing but injections....or the SCS. It might be time to seek out another doctor who would be open to implanting the pain pump. My orthopedic spine specialist recommended a neurosurgeon to do the surgery, so perhaps you can get a referral.

I'll try to answer your questions in the order you asked...

1. There are other medications that are used. For instance, I am on dilaudid
because it was taking too much morphine to help my pain. They can also
use fentanyl, but I believe that is the last resort as it is so powerful.

2. Generally, your pain pump is the main medication.

3. I was on oral methadone prior to having the pump put in. One reason I
got the pump was that methadone was causing personality changes and
I didn't want to go on oral LA meds as the dosages would be pretty high.

4. I do take oral meds (Lortab (narco) 10/325 as needed for breakthrough
pain. However, that is prescribed by my much loved ortho as my PM is of
the mind that oral meds shouldn't be needed unless your pain levels are
consistently severe. Mine isn't, but I do have times when I am in need of
something due to too much activity for me.

5. I am not sure what you mean by being in control of how much pain meds
I get. Are you talking about the bt meds or the pump med? In either case,
that will be up to the doctor after he evaluates your needs.

6. The pump is installed below the waist and to the side (in front). A little
"pocket" is opened, the pump is inserted with a catheter going to the
spinal area where the surgeon thinks it will most help you. The meds drip
directly into the spinal canal and those meds are much more potent than
what you could take orally. There are 3 methods of trial that I am
aware of and every surgeon has his preference. In my case, I was hos-
pitalized for 3 days. The trial pump was an IV drip with the catheter
leading to the spinal canal (tiny incision) and the amt was increased
over a period of two and a half days until I was fairly comfortable. The
catheter was then taken out, and I was scheduled for the surgery.

7. There are a couple of different sizes...mine is about as large as a hockey
puck. In your case, especially since the SCS is not bringing you much
relief, they may opt to remove it when they put in the pump.

If you have any other questions, please feel free to ask. I am willing to answer anything that I can if it will help you.

Please let me know how you are doing and if you find a dr. to put the pump in for you.

Carol
Thanks for answering my questions on the pain pump.
As much as I can learn from reading info from various websites it's always better to hear directly from someone who has experienced it themselves.

I will definitely be looking into this some more.

Thanks!

 
Old 04-07-2011, 09:54 PM   #6
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Re: Please help! In need of advice on IDET/Discogram and pain in general

I just had an IDET on my L3-L4 & L4-L5. I planned on the L4-L5 which I have a small posterior annular tear that I have tried literally everything with other than the IDET and spinal fusion. I was a middle age triatlhlete-competed for fun, not to win, couldn't anyway but very much miss my exercise routines. This has gone on for nearly 3 years. I am at the end of the road, so I am praying for success on this procedure, otherwise I will have a fusion in the fall.


I expected much more pain, wasn't bad at all. the stats for my age are around 60%, I am 49. But I am the eternal optomist. I wouldn't be afraid now to have one. I am only 4 days out but feeling no pain other than from the injection areas. I don't know if that is normal and will get worse later?

I wish you lots of luck, my insurance covered the procedure and according to what I read Medicare covers it for people under 65. The key to success seems to be patient selection and the skill of the MD.

Don't know if that helps, but I would love to hear your thoughts as you progress. Good luck, I am sure you will have positive results

 
Old 04-08-2011, 03:02 PM   #7
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Re: Please help! In need of advice on IDET/Discogram and pain in general

Quote:
Originally Posted by Laurie Little View Post
I just had an IDET on my L3-L4 & L4-L5. I planned on the L4-L5 which I have a small posterior annular tear that I have tried literally everything with other than the IDET and spinal fusion. I was a middle age triatlhlete-competed for fun, not to win, couldn't anyway but very much miss my exercise routines. This has gone on for nearly 3 years. I am at the end of the road, so I am praying for success on this procedure, otherwise I will have a fusion in the fall.


I expected much more pain, wasn't bad at all. the stats for my age are around 60%, I am 49. But I am the eternal optomist. I wouldn't be afraid now to have one. I am only 4 days out but feeling no pain other than from the injection areas. I don't know if that is normal and will get worse later?

I wish you lots of luck, my insurance covered the procedure and according to what I read Medicare covers it for people under 65. The key to success seems to be patient selection and the skill of the MD.

Don't know if that helps, but I would love to hear your thoughts as you progress. Good luck, I am sure you will have positive results
Thanks for the reply. I will keep you updated as I progress. As of now I am still waiting for the doctor to set this up.

If you don't mind answering a couple questions...

1. How much pain were you in prior to the IDET? So from what I can tell you are almost pain free after this?

2. Did you have any associated leg pain? Did the IDET do anything for it?
I'm been told it won't help my leg pain and it's permanent at this point.
That scares me because my leg pain is pretty severe and I'm afraid that if
my back pain levels are lowered than it will exacerbate the pain in my legs making it more obvious.

3. I assume you had a Discogram prior to your IDET. I hear that is usually very painful since they can't dull the area too much as they need you to rate the pain while the needle is in. How was it for you?

I'm around about an 8 on the pain scale daily and I'm not expecting miracles from this, but if it could bring the pain levels down to something tolerable It would make it worth it for me.

Thanks again for your comment.

-Matt

 
Old 04-08-2011, 03:36 PM   #8
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Wink Re: Please help! In need of advice on IDET/Discogram and pain in general

As I said I was doing triathlon's when this began 2 1/2 years ago. At the time of the IDET I would have rated my pain a 8-9. I had not taken any meds that day.

I am now on my fourth postop day and my pain is easily captured with Tylox. I have been taking them consistently to keep the pain in check. I began to back off today. I am taking 1 about every 6 hours from pain from the IDET. The previous pain is currently gone. Although I have had other injections in which the pain was gone for up to 10 days. Sooo, I guess I will have to wait and see.

I did not have any radiation of my pain down my leg. I have had very small areas of radiation about 3-4 inches down my butt and around the front of my hip.

I did not have a discogram prior to the procedure. I had a disc block at the annuluar tear level which gave releif for abou 8 days. He may have done it during the procedure I am not sure. I did have 2 discs that he perfromed the IDET on. My MD is an orthosurgeon. If this doesn't take I will opt for a fusion.

Hope that answers your questions. Good luck, each of us is unique so no treatment will affect us the same.

 
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Old 04-17-2011, 06:07 PM   #9
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Re: Please help! In need of advice on IDET/Discogram and pain in general

Now at 2 weeks pain has ebbed and flowed as I was told it would, certainly not as bad as previous. They say it takes up to 6 months to know what the result will bee. Am hoping for PT on my MD visit this week. I would recommend the procedure so far. Beats a fusion so far, Only time will tell.

 
Old 04-17-2011, 07:04 PM   #10
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Re: Please help! In need of advice on IDET/Discogram and pain in general

Quote:
Originally Posted by Laurie Little View Post
Now at 2 weeks pain has ebbed and flowed as I was told it would, certainly not as bad as previous. They say it takes up to 6 months to know what the result will bee. Am hoping for PT on my MD visit this week. I would recommend the procedure so far. Beats a fusion so far, Only time will tell.
Thanks for the update.

They have set a date for my discogram with a CTScan to follow later in the day, May 3rd. Not looking forward to it, but
I'll try and make an update after it's done.

 
Old 04-20-2011, 07:33 PM   #11
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Re: Please help! In need of advice on IDET/Discogram and pain in general

I had an IDET to L3-4 & L4-5 for discogenic pain from an annular tear ar L4-5. MY MD decided at last minute to try both, I am a one shot kinda gal. Th is my last ditch to prolong fusion. I knOw as you do the stats range from 50-80% depending on which study you look at. patient selection and skill of MD are key to the higher rates. how do you know? I think you don't, roll the dice and pray. I am. masters prepared registered nurse who knows nothing of this area except how to interpret research.

I about 21/2 weeks. Right now I think I made a good decision. But in the end thereof little harm in trying the IDET. I am not thinking cure, but maybe buy me a few years for technology to catch up with my needs. I certainly see no downside either personally or professionally.

Also, my MD whom I choose to trust said if I were his wife he would try it first as the only thing left is a fusion. Good luck, whatever path you choose will be the right one for you. All of our bodies and lives are different. I wish you the vest of luck!

 
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Old 08-31-2011, 11:08 AM   #12
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Re: Please help! In need of advice on IDET/Discogram and pain in general

Hi. Saw you were considering IDET in March. Curious if you followed thru + had it done? I've been considering it as well. I have a disc tear at L5-S1. It's been 27 months and counting. I"ve tried all non-invasive methods (3 physical therapists, numerous cortisone/nerve block injections, PRP injection, acupuncture, chiropractor, massage therapy, pain meds, exercise + rest). No change. I had a discogram a year ago but it was negative. That said, i've seen both a physiatrist (who performed the discogram and has suggested IDET) and spine surgeon and the later said there can be false negs. He won't do surgery because i'm too young, don't have severe enough pain symptoms and because it's not guaranteed to work or could make things worse (i've seen 3 different orthopedic spine surgeons and none will do surgery for the same reasons). I have only minor low back pain (throbbing dull pain between both SI joints, right where the L5-S1 disc tear is). But my main problem is i cannot sit or lie on my back without discomfort/pain. Every time i lie on my back, i feel a throbbing dull pain in my lower back. Every time i sit, i feel a similar throbbing, dull, numb like feeling around my ischial tuberosity bones. At first docs thought it was muscle or tissue (muscle tear, ligament tear or severe strain), then possibly tendonosis. But after numerous tests (multiple MRIs, CAT, X-Rays) + physical therapy, they're more convinced it's the disc tear entrapping a nerve. Has to be given i only feel it when i sit (at which time the discs compress). Very difficult to not sit without pain EVERY DAY for 27 months (work, car, at home). Mentally and emotionally draining as well as physically.

I"ve done tons of research on IDET and it appears there is conflicting feedback. LIke surgery, it's not guaranteed to work. My physiatrist said the same, but he also said i've tried everything else and given surgery is not an option, this is my only choice besides living w/it (which i cannot do). I'm scared not to try it. I'm scared to try it, endure the 3+ month recovery time only to find out it did not work. Also it's pricey (about $13,000) and insurance will NOT cover it because it's not proven. My physiatrist + spine surgeon submitted a pre-determination letter to my insurance co and i'm waiting for the response but not hopeful given my doc said typically insurance will not cover it. They didnt cover my PRP injection which cost me $1500 out of pocket.

I read a few people say "you need to give disc tears time to heal; they can take years." Well, all of my docs (3 spine surgeons, 2 physiatrists, sports medicine doc, chiropractor and 3 physical therapists) have told me disc tears do not heal on their own. Once you have a bulge, tear, herniation, rupture it doesn't heal itself. A bulge or herniation may go back in periodically or permanently, but never heals. Over time, all the "jelly" in the disc leaks out and therefore there's nothing left to impede nerves, so the pain does subside substantially or permanently but that process could take 5-20 yrs.

 
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