In-operable

[erfan]

Went on Thursday to see one of the area's top spinal surgeons for a third opinion.

I was devastated when he said I was not operable. In the past, while I assumed it was because my spine was bad, I never asked. So this time I asked him if I was not operable because I wasn't bad enough or too bad and he said my spinal problems were too extensive.

So that's it folks. I'm stuck with this awful pain forever.

[Pharmacist.steve]

Went on Thursday to see one of the area's top spinal surgeons for a third opinion.

I was devastated when he said I was not operable. In the past, while I assumed it was because my spine was bad, I never asked. So this time I asked him if I was not operable because I wasn't bad enough or too bad and he said my spinal problems were too extensive.

So that's it folks. I'm stuck with this awful pain forever.

With proper pain management ... while you might not be completely pain free - NO ONE IS - but your pain should be able to be kept at an acceptable level

[Mark N]

Sorry to hear the news that you are stuck with this. After 3 surgeries and years of PT and treatments I am now stuck with my condition. Unfortunately all of us can't be fixed with surgery and some of us have to deal with it. It is too bad that you are in this position. I know that you wish there was some surgery that would work but it could very well be that surgery could make you worse. Get the best pain control that you can and do as much as you are able to do.

How is your current PM? Did the surgeon offer any suggestions on how to make your life better? I hope he offered some suggestions for treatment of your condition and I hope they work to alleviate your pain.

[suede]

erfan, I'm sorry to hear you had to get this news, however I know how you feel as I have been through the same thing.
Like you I was told by many that I was not operable and thought okay it's just not that bad, until I got wise and asked that question and got the same answer as you.
Though I'm no where near pain free I have been able to get my pain under control and taught myself to stay with in my physical limitations and I do okay. Of course this is not the life I opted for but it sure is better then the alternative.
I often remind myself how very much I have to be thankful for as I still have the use of all my limbs no matter how limited and my mind though not what it once was is not completely gone.
I still have my ups and downs but know it could and may be so much worse.
If you need to talk feel free to Pm me.
Gentle hugs,
Linda

[BrokenBladder]

Went on Thursday to see one of the area's top spinal surgeons for a third opinion.

I was devastated when he said I was not operable. In the past, while I assumed it was because my spine was bad, I never asked. So this time I asked him if I was not operable because I wasn't bad enough or too bad and he said my spinal problems were too extensive.

So that's it folks. I'm stuck with this awful pain forever.

Erfan ((((I'm Sorry)))) I know the devatation you're feeling because there is nothing they can do to fix it, but on the good news side they can give you a life using PM.
Now that you know the truth please pursue getting adequate PM. It won't make you pain free, but it will give you a life back.
Hang in there and keep your chin up!!

[FLGIRLINPAIN]

Hi Erfan!

I am so sorry to hear about your bad news, thats terrible. I am in the same boat, they say my condition is inopertable and pain management is my only option. I just wanted to lend my support.

Hugs,
FLGIRL

[Kira]

I'm not inoperable, per se, because the problem is inside of my cells... but they can't "fix" what's wrong with me, either. I have gotten a lot of quality of life back from pain management, as well as some other nutritional things and a good therapist. Just because they can't make the underlying problem go away doesn't mean they can't help make you feel better.

But it really does suck to come to the realization that whatever is wrong with you isn't going away. There is a grieving process for what you've lost, and it isn't easy. I struggle with it every day.

Vent to us, let yourself get angry and sad and confused and even hopeful, and try to do whatever you can to gain back as much quality of life as you can. We're here when you need us. This is hard stuff to deal with.

[oh_snap]

Non-operable is a misleading term when it comes to the spine.

At one point, if your pathology endangered your spinal cord, and paralysis was imminent, I would bet that you would be "operable".

The point? It's just a word (IMHO).

That word may actually represent a doctor's belief that you won't be a 100% cured patient, and they don't want any part of a patient that can't be fixed (I ran into many of those spinal docs when getting opinions).

I would also bet that if you queried enough docs, you would find one that would operate, regardless of whether it was what was best for you. Sometimes docs are doing us a favor by not recommending surgical intervention.

Sometimes, the best thing for us is to accept that while we may never be 100%, there are treatments/docs that can help reduce our pain and increase our quality of life. It is finding those docs that will help us that is the tough part of this game.

Again, it is not my intention to downplay the term inoperable, or your physical problems.

[erfan]

Thanks for the replies. I am in PM and currently use a 100 mcg fentanyl patch which does nothing for me, and take up to 4 30 mg oxy IR a day for bt...that does take the edge off.

Thanks again!

Alan

[Mark N]

Alan, sorry to hear that PM doesn't do as good a job as it should. I take MSContin along with a muscle relaxer and Cymbalta and still I can only manage the pain. I hope you can at least get to that point with your PM. Don't give up that your spine can get better but I know it is hard to hang on to that belief. Maybe one day you will find a better answer.

[curiousforever]

Sorry to hear that. Definately pursue better pain management - I think it should do more than just take the edge off. Not pain free - but to where you can somewhat function.

[suede]

I don't know if you have been in Pm for very long but please don't give up.
I have tried so many different meds and combinations that I didn't think anything would help, I even let myself be talked in to having a SCS implanted back when I was told I was inoperable and it was my last hope(not by far).
Now I am on methadone along with baclofen and a couple of other meds no BT meds though and knock on wood I'm doing the best so far.
Just don't give up.
Linda

[erfan]

I've been going to PM for over 3 years. I think I'll discuss a pain pump with him at my next appointment on Monday and also ask for a script for a scooter.

Alan

[suede]

Alan, I have been in PM now for almost 8yrs.
The pump was what I was getting ready to go with when I hit this combo of meds that helped, however if they should ever quit working the pump will be my next move.
Best of luck and keep us posted.
Linda

[GJZH]

You have not seen enough surgeons...I saw seventeen doctors before I had surgery. I have severe spinal problems...You need to have a top, top doc look at your films...If you need names I can help you...Let me know where you live and who you have seen...

Edited to say...I do not know that the surgery has helped me much ...but has kept me from a wheel chair the last nine months...but may be going to one anyway for long distance walking...

[GJZH]

Someone made mention to me today about the number of surgeons I have seen and I am still in pain..My husband and I feel nothing ventured...nothing gained...We both knew with the last surgery that I might not gain very much, but the spine would be stabalized.....I originally started my quest looking for an ADR....It took a few surgeons before one took the time to explain why I would never be a candidate for one....Then after looking for someone to help with the lumbar spine I discovered I had cervical problems and had to find a new surgeon to help with both problems....Some docs did not want to do surgery on the lumbar because the problems were so severe so it took me a long time to find someone that would operate on both areas of the spine...It has been a long process for me...and for the life of me I do not know why I feel I need to justify this to anyone, but just suffice to say I feel I was put on the defensive by someone today.....

[suede]

GJZH,
I'm sad to hear that you were made to feel you had to be defensive about your own health care..
I have followed your story for some time now and know that you are not someone that jumps in to anything without a lot of research and thought.
Please try not to let others put you on the defense about what you have done.
For myself it finally took a good Dr setting down and explaining to me why surgery is just not right for me as for right now, that is not saying that I will remain this way, as a matter of fact I've been told that they are sure surgery will be in my future. Needless to say what my condition will be when that happens.
Take care and ignore the ones that make you feel you bad, life is hard enough..
Linda

[Sonic]

Hello Alan,

I'm new to the group. While I don't think that I am quite in the same "pain" league as you, I do have constant neuropathic pain in my left arm. It is essentially useless. I have had 4 surgeries, without any real benefit. I have also been told by 2 separate surgeons say that I am now essentially inoperable. They say that the only operation they would do for me would to be a total elbow replacement, but that this should be delayed as long as possible. So I understand what it's like to be turned away by a surgeon. I really hope that you find a good PM combination that works for you.

Graham