3 Level Disc Replacement in Germany and Still in Pain

[Maria]

Jamie,
I have to tell you that I wasn't able to work as an RN after injuring my back in '82 working in Neurosurgery so I went back to Grad school and got my MSN/NP but I couldn't sit in chairs or at desks so I brought a bean bag chair with me and semi reclined for my classes. Did people think I was weird? At first but who gives a rats arse was my stance. I had a goal and I was going to get there.. In my statistics class I had to lie across the long table in class so I could see the board. My instructor was most kind about this after intially telling me I could not attend class like that. Or to any other instructor that took that position I always said ~ Ok I'll go to the Disabled Students Resources Dept and get what I need to be able to "lie down" in class.

Well, I graduate and now have to find a job where I don't have to sit and I do as I was seeing patients in ambulatory care tho I became the clinic coordinator/manager and I then had to start sitting at meetings and so forth and had an office that I had to "sit" in .. oh yeah~ everyone quickly learned I didn't do sitting well and would avoid it at all costs because my comfortable limit was about 2 minutes. I stood at meetings, stood in my office and so forth.

My last position that lasted 5 years and would have gone on if I could have remained at work was as a Telephonic Triage/Advice Nurse for a Managed Care co. and they hired me even tho I said I had to stand at my station as I couldn't sit so my station was adapted for standing altho there was a chair there as well in case I had to sit. I had one arm removed so that I could usually place my knee on it and sort of stand and support myself that way and had a cushioned mat like hairdressers use at my feet for greater support. I had a step stool under the desk and could shift my weight regularly. When I took my breaks I went to my van and laid down to rest my back.

It can be done. I avoided sitting for years and years and now within the last few years I can sit again socially as in going out to eat and so forth. I believe it's from L5S1 autofusing.

Still when I travel coast to coast I buy 3 plane seats to fly so I can lie down or else I couldn't manage the pain from that length of sitting even with getting up several times. I used to stand most of the 5 hour flight but now people are not allowed to be out of their seats most of the flights so that's not really possible.

I don't know where your pain is originating from tho I do just want to give you hope ~ believe me I have suffered greatly with pain and I have gone thru much tho I'm real glad I stuck out the bad bad dark times and kept hoping life would get better pain wise. It did. Sure I use some pain medication and Neurontin tho I'm just glad to have this much relief.

I stopped working about 8 years ago and maybe if I had pursued further spine surgery recommended I would still be working altho I hope to one day return anyway somehow.

Wishing you the best and please hang in there. Life can really present some intense challenges tho when the tide changes for the better it's really good to still be here~

[jamie5136]

Originally Posted by Maria

Jamie,
I have to tell you that I wasn't able to work as an RN after injuring my back in '82 working in Neurosurgery so I went back to Grad school and got my MSN/NP but I couldn't sit in chairs or at desks so I brought a bean bag chair with me and semi reclined for my classes. Did people think I was weird? At first but who gives a rats arse was my stance. I had a goal and I was going to get there.. In my statistics class I had to lie across the long table in class so I could see the board. My instructor was most kind about this after intially telling me I could not attend class like that. Or to any other instructor that took that position I always said ~ Ok I'll go to the Disabled Students Resources Dept and get what I need to be able to "lie down" in class.

Well, I graduate and now have to find a job where I don't have to sit and I do as I was seeing patients in ambulatory care tho I became the clinic coordinator/manager and I then had to start sitting at meetings and so forth and had an office that I had to "sit" in .. oh yeah~ everyone quickly learned I didn't do sitting well and would avoid it at all costs because my comfortable limit was about 2 minutes. I stood at meetings, stood in my office and so forth.

My last position that lasted 5 years and would have gone on if I could have remained at work was as a Telephonic Triage/Advice Nurse for a Managed Care co. and they hired me even tho I said I had to stand at my station as I couldn't sit so my station was adapted for standing altho there was a chair there as well in case I had to sit. I had one arm removed so that I could usually place my knee on it and sort of stand and support myself that way and had a cushioned mat like hairdressers use at my feet for greater support. I had a step stool under the desk and could shift my weight regularly. When I took my breaks I went to my van and laid down to rest my back.

It can be done. I avoided sitting for years and years and now within the last few years I can sit again socially as in going out to eat and so forth. I believe it's from L5S1 autofusing.

Still when I travel coast to coast I buy 3 plane seats to fly so I can lie down or else I couldn't manage the pain from that length of sitting even with getting up several times. I used to stand most of the 5 hour flight but now people are not allowed to be out of their seats most of the flights so that's not really possible.

I don't know where your pain is originating from tho I do just want to give you hope ~ believe me I have suffered greatly with pain and I have gone thru much tho I'm real glad I stuck out the bad bad dark times and kept hoping life would get better pain wise. It did. Sure I use some pain medication and Neurontin tho I'm just glad to have this much relief.

I stopped working about 8 years ago and maybe if I had pursued further spine surgery recommended I would still be working altho I hope to one day return anyway somehow.

Wishing you the best and please hang in there. Life can really present some intense challenges tho when the tide changes for the better it's really good to still be here~

So, you never had an ADR surgery? Did doctors ever figure out the source of your pain? Your story is encouraging and inspirational. I sadly can't take any time off and have to work full-time in bed. When I try to sit, I have to adjust from side to side sitting on my leg and I even got a sitting forward chair from Hag, but it still hurt. The Stance chair is sold out and the company is not longer making them, so if you know of a chair where I can stand, I would appreciate it. Thanks Maria!

[ans]

I am so sorry to hear of your plight. I wonder - and experts can chime in, if a myelogram would help identify your pain sources. Also, my pain management doctor acted as a physiatrist and diagnosed S-I joint pain that was just horrible and fortunately I responded well to an injection. Also, if you're truly feeling suicidal I hope that you see a psychiatrist and get a good Rx; personally I like Cymbalta which helps w/nerve pain too but there's some good stuff. In short, this utterly sucks but w/technology, it ain't over which is so easy for an outsider to say. My very best - Allan

P.S. I know that this ate your money but I can't help but wonder what Dr. Regan and Dr. Filler in Beverly Hills would say about you/your case.

[jamie5136]

Originally Posted by ans

I am so sorry to hear of your plight. I wonder - and experts can chime in, if a myelogram would help identify your pain sources. Also, my pain management doctor acted as a physiatrist and diagnosed S-I joint pain that was just horrible and fortunately I responded well to an injection. Also, if you're truly feeling suicidal I hope that you see a psychiatrist and get a good Rx; personally I like Cymbalta which helps w/nerve pain too but there's some good stuff. In short, this utterly sucks but w/technology, it ain't over which is so easy for an outsider to say. My very best - Allan

P.S. I know that this ate your money but I can't help but wonder what Dr. Regan and Dr. Filler in Beverly Hills would say about you/your case.

I get an SI joint injection on both sides on Wednesday along with my 3rd ganglion impar injection, so that should be a good diagnostic. I have been to only 2 pain med doctors and they both just suggest injections. If these injections do not help, then I don't know what to do. I have heard of a Mylogram, but not sure what it is. Nobody has suggested this. I know Cymbalta is new, but the thing with anti-depressants is, they cause me insomnia and give me too much energy and then I can't sleep at night. I used to take Lexapro which was good, but zero sleep, even if I took it in the morning.

I have never heard of Dr. Filler, but I have Dr. Regan. I hear they do revisions for patients who have had failed ADR. I am hoping my ADR is not a lost situation. I just went for a nice, long, hike, I just can't sit; very weird. I wish it was just the opposite. When I tell people I can't sit, they look at me oddly as it is rare. I am envious of people who can, which I know is strange.

I wonder if I should go see Dr. Regan. I am sure he would be interested in my case as I had a 3 level and one subsided and I still have pain. I would hate to get them out and get a fusion. That is not a gaurantee the pain would go away. I guess w/out knowing where the pain is coming from, I have no plan. There is a doctor in MN who is an SI joint specialist and does SI joint fusions, so if that is the issue, I will see him. There is also a coccyx specialist (although x-rays show it is fine) in NJ should that be the issue. I have a "sit-down" MRI on Tuesday. Maybe that might find something. I think since it is a nerve issue, neither x-ray or MRI will show this, right? Also, how does Cymbalta help with nerve pain? I owe my psychiatrist a visit and will ask him. Now I take Lunesta and Halcion to sleep. I used to take Seroquel, but I had to get off of it. Thanks for your feedback.

[Maria]

There are some chairs at Relax the Back store you might want to try out altho they were mostly over $1000 so then I heard about a lounge chair like version at Home Depot that was on sale for $69 and brought it home and it would have been great for semi reclining and working on my laptop but it was just a bit too big for the space I wanted to put it in so I had to bring it back. Perhaps if you google Relax the Back store you can pull up the link and see the chairs they have where you lie back and your legs are elevated at the knee so it keeps your back supported in a flat position and raises legs at knees taking pressure of the low back.

I think if I were going to work for someone I would have to have a chair like that for computer work (if I wanted to recline) and then a standing station if I were going to stand part of the time and I'd try switching positions as long as standing didn't create a problem.

I now also have a cervical disc bulge and have to pamper my neck as well when working at the computer so that's sort of a drag tho I just try to work with things making my own adaptive type of situations after seeing some of the things out there for people with disabilities that are working that I cannot afford.

Your situation does sound somewhat promising since you're able to hike well and hopefully you will eventually be able to sit again as well. I know I said the same thing as you with regard to wishing it were the other way around as I so missed being able to sit in libraries, on planes, in movies, at the theater/plays, and on and on however I'm thankful for how good I do feel finally and for what I can do comfortably these days.

And no, I did not have ADR. I was slated for a 3 level global fusion back in 2000 and didn't want to have that and pursued trying to get ADR surgery thru WC and in 2003 a 2 level ADR surgery was approved in a trial at UCSF but they stopped the trial before my surgery date and then it wasn't until 2006 that surgery was authorized for me again however by then it was an ADR at L4 and fusion at L5S1.

I am afraid of fusion. Probably unreasonably so however I've waited so many years now since my original injury it appears L5S1 has autofused finally per my OSS and my symptoms are not as severe as they used to be so I'm quite pleased. Also I think the autofusion accounts for why I can now sit at least socially or for like an hour or so without looking like I have ants in my pants.

[jamie5136]

Originally Posted by Maria

There are some chairs at Relax the Back store you might want to try out altho they were mostly over $1000 so then I heard about a lounge chair like version at Home Depot that was on sale for $69 and brought it home and it would have been great for semi reclining and working on my laptop but it was just a bit too big for the space I wanted to put it in so I had to bring it back. Perhaps if you google Relax the Back store you can pull up the link and see the chairs they have where you lie back and your legs are elevated at the knee so it keeps your back supported in a flat position and raises legs at knees taking pressure of the low back.

I think if I were going to work for someone I would have to have a chair like that for computer work (if I wanted to recline) and then a standing station if I were going to stand part of the time and I'd try switching positions as long as standing didn't create a problem.

I now also have a cervical disc bulge and have to pamper my neck as well when working at the computer so that's sort of a drag tho I just try to work with things making my own adaptive type of situations after seeing some of the things out there for people with disabilities that are working that I cannot afford.

Your situation does sound somewhat promising since you're able to hike well and hopefully you will eventually be able to sit again as well. I know I said the same thing as you with regard to wishing it were the other way around as I so missed being able to sit in libraries, on planes, in movies, at the theater/plays, and on and on however I'm thankful for how good I do feel finally and for what I can do comfortably these days.

And no, I did not have ADR. I was slated for a 3 level global fusion back in 2000 and didn't want to have that and pursued trying to get ADR surgery thru WC and in 2003 a 2 level ADR surgery was approved in a trial at UCSF but they stopped the trial before my surgery date and then it wasn't until 2006 that surgery was authorized for me again however by then it was an ADR at L4 and fusion at L5S1.

I am afraid of fusion. Probably unreasonably so however I've waited so many years now since my original injury it appears L5S1 has autofused finally per my OSS and my symptoms are not as severe as they used to be so I'm quite pleased. Also I think the autofusion accounts for why I can now sit at least socially or for like an hour or so without looking like I have ants in my pants.

Well, I can hike, but for some reason, sitting feels like someone is taking a hot poker and driving it up my tushie or lower spine. I hate to be so graphic, but that is how it feels. I can't find a standing chair, and Relax the Back does not have one. The Stance chair company is no longer making their chair, which would have been perfect. I have also been looking at a Zero Gravity chair, but they are so expensive. And, oddly enough, out of desperation, I thought about getting an inversion table that is seated and using that as a chair. It is just like a regular inversion table but has a chair on it and it has 6 different positions, but it is not designed to be an office chair. I get so frustrated! I am so sorry to hear about your neck. May I ask you a private question? Are you on disability or are you supported by your husband? I was thinking about going on SSI, but I hear it is hard to get for sitting pain and then if you get it, you get paid almost nothing; not enough to survive. You don't have to answer, just wondering.

[Maria]

thanks for bringing that up.. it's what I meant re the Home Depot lounge type of chair that is zero gravity like and there are more like this and they're under $100. RE a standing chair.. no.. I just stood up at my desk and had a chair next to my desk that was on wheels and had an arm removed so I would often just shift positions and sort of support one knee on it while sort of standing and actually leaning forward towards my desk to open up my lumbar space or stretch. At least this is what it felt like I was doing.

When I applied for SSD I was only working part time. Mistake. Better to apply when you're working full time as you want as many work hours on there for the qualifying quarters (years?) that are used to compile this.

I was awarded SSD upon first application (I had a 20 plus year documented history of back probs thanks to WC's records) and then about my 6th month into SSD the place where I had left employment advised me to apply for LTD or long term disability and I qualified for that as well.

I lived with my husband but he wasn't supporting me at any time as I always had my income which was the stable income of the two prior to my applications to disability. I have lived alone for the last 5 years and support myself however my husband is kind enough to keep me on his medical insurance to date ( I do have Medicare tho his
BCBS is extremely helpful re dental and prescriptions).

[wilsonrob]

Where exactly is your pain? Could it be piriformis syndrome?

[jamie5136]

That is the 64,000 question. I just did your test and felt the glutes stretch, but it actually felt good to stretch like that, so my guess is that it is not the piriformis muscle. I oddly enough found an illustration of a nude woman from behind, brought that into a design program and circled the pain and where it was radiating, but I have not heard back from Dr. B. So, the only way I can describe it is as follows: Image where the tushie crack starts and go up about 3-4 inches or so. That is the main source of pain. That radiates into my buttocks, but rarely, if ever, in my legs. So, when I sit or put any pressure on that part or just sitting, it burns like fire and aches. I end of having to adjust myself by putting one leg under the other and sitting on my legs throughout the day. Even laying in bed with my knees up hurts because this is putting direct pressure on that spot. Dr. Gill and one MRI nurse said, "This is your lower back." So, I assume this means L5-S1. I had this pain before, but this surgery made it much worse, so I have to conclude that I had a pre-existing condition and that the discs did not help the sitting pain; it only aggravated it and it is not getting better. Sometimes it "feels" as though it is my tailbone, or around that area, but x-rays show it is not broken, so Dr. Gill in Dallas said it was not my tailbone. So, I am lost. My thought is that because I grew about 1/2 inch or so that my spine elongated and is pinched or impinging or pressing some type of nerve or joint. Does that make sense. My father seems to think that it is inflammation, like osteo arthritis and that the elongating of my spine could have caused a stress fracture, making it worse; I don't know. Obviously the surgery made it worse. The opinons or guesses I get are plentiful. I am going to get an EMG test here soon. Maybe that will help. Oh, I found that Stance chair, but it is 500.00 just for shipping! I wish I could catch a break sometimes.

Originally Posted by wilsonrob

Where exactly is your pain? Could it be piriformis syndrome?