Advice needed - new member

[ChristinaE]

I'm a 40 year old female, status-post right mastectomy for invasive breast cancer (which is now in remission). My spinal x-ray/MRI/CT scan results are in my signature. For the past 4 years, I've been suffering from increasingly severe, constant pain in both my lower back and both legs (initially, it was just the right leg, but now it is spreading to both - in the left, it reaches to about midthigh and in the right, it goes all the way to the foot, with accompanying numbness from my shin to the top of my big toe, and within the past few months, I'm getting episodes of weakness where my legs won't support me). I've also recently developed (maybe a year or so) a strange numb/weak feeling where my thighs meet my groin, and I'm having an increasing loss of daily functionality. I have been under the care of an orthopedist for the full 4 years. He's a great doctor, very sympathetic, understanding, and observant about how this is all affecting me, and we have tried every conservative, non-invasive treatment possible (since I was so averse to having more surgery after I'd just finished cancer treatment): physical therapy, chiropractor (with both extension-distraction, as well as gentle manipulation), inversion table, walking in a pool, trigger point injections, facet injections, epidural injections (all by a pain management specialist), and acupuncture. All with either absolutely minimal results or none at all. I am now on oral sustained-release morphine 3x daily, with vicodin hp for breakthrough pain. I was put on Gabapentin at one point, but it didn't help at all.

My orthopedist recently told me that he considers me totally disabled, unless surgery can help, and referred me to a surgeon. The surgeon says he doesn't even see the spondylolisthesis on the x-ray and doesn't see 'any reason I should have surgery', but has ordered another MRI, as well as an EMG to see what nerve compression or damage I might have. Going in, I knew from his bio at the hospital, etc., that he's a big proponent of conservative treatments and not rushing to do surgery for everything, but I couldn't tell if he just doesn't want to rush into surgery or if it's that he thinks I don't actually have anything wrong with my back and that I'm trying to con him or something (he was surprised that my ortho hadn't ordered a more recent MRI - something I think my ortho was reluctant to do because of the cost to me, since he knows about my financial situation). I'm not imagining things and I'm not a hypochondriac - I have very real, very severe pain; I cannot move or shift certain ways without that pain becoming excruciating; I have very real numbness and growing weakness in my extremities. Thinking over the questions and exams the surgeon gave me, and coupling that with how he acted towards me, I don't *think* he's thinking I'm attempting to scam him so I can go on disability or something (I didn't even MENTION disability to him). I think he's just annoyed at my ortho (they're all in the same orthopedic practice) for not ordering a more recent MRI, as if he should have known he'd want one - he did specifically say to me 'I'm sorry you wasted a visit and have to come back again, having the MRI done already could have saved you a trip', or words to that effect - and he's also probably one of those doctors that orders a new MRI every few months, instead of every year or so, like my ortho does. Like I said, my ortho's known me for a long time and is very sensitive to my financial situation, and I'm 99.9% sure that's why he didn't order another MRI yet - whereas the surgeon doesn't know me at all.

I'm really not crazy about the thought of yet another surgery of any kind, but I've really hit the wall on how much I can take. I haven't slept through a night in years, the pain is constantly keeping me awake or waking me up, I can't even walk a few blocks without seriously aggravating the pain, and though the medication helps somewhat, it doesn't do nearly enough (put it this way - without the medication, I'd be screaming; with it, I'm just swallowing whimpers and trying not to cry like a baby). I'm desperate for relief, I really can't take much more of this. I'm fully aware that not only will surgery not 'cure' things 100%, but it very well may fail completely or even make things worse (though I don't see how that's really possible at this point). Considering how bad things are right now, I'm willing to take that chance. My question is, given the above, do you agree with the surgeon or do you think I should request referral to another surgeon for a second opinion? Or is there another treatment option you might recommend? And if you think I should request referral to another surgeon, how would you suggest I broach that topic with my orthopedist? I'm utterly horrible with standing up for myself or being 'demanding' in any sense, so any suggestions on how to phrase things or what to say, etc, would be VERY much appreciated. Oh and my insurance won't cover non-surgical decompression or artificial disc replacement, and I'm currently unemployed, so paying out of pocket isn't an option for me.

[ajj1001]

hi and welcome. I would definitely get a second opinion if I were in your situation (and a third if finances could stretch to it). Writing down all your questions and taking someone with you can be good as well. Chronic pain can cause us to forget to ask things or forget the answers.

Getting some good pain relief in place whilst you consider your options might be an idea. it sounds like you are struggling to function at all at the moment.

hope you find a way forward soon

alison x

[Hooch]

Hi.

You have significant pathology and are significantly disabled. I am unfortunately not surprised that they let you get this bad without at least exploring the surgical option. Seriously, if you are not a surgical candidate I've got two heads. You're obviously well aware of the risks. Thank god you are insured.

They will be reluctant to do much to the thoracic discs unless they are impinging a nerve, so hopefully they're not giving you too much trouble. Lateral recess stenosis plus spondylolisthesis plus leg pain plus neurogenic claudication... you don't get a much clearer surgical indication than that... I mean for the love of..

I'm utterly horrible with standing up for myself or being 'demanding' in any sense, so any suggestions on how to phrase things or what to say, etc, would be VERY much appreciated.

You are going to have to be respectful, but not in any fashion submissive. Describe your pain and your disability with brutal clarity, what it's done to your quality of life and employment prospects, and demand an appropriate surgical opinion. Especially since you are female, I'd recommend not crying if you can help it (even tho it is the normal human response).

You've got a funny feeling about this first surgeon, so trust your gut and get a second opinion. Before going in for invasive spinal surgery you have every right to demand a second opinion, so don't let your orthopedist or whoever fob you off, and get the referral. Spend some time here, ask some people and see if someone can recommend a quality spinal surgeon in your area.. the last thing you want is some crankshaft who thinks it's all in your head...

You've got heaps of pathology there, what you've got to do now is spend the time and see the right people so you can get the best outcome. Keep posting here, most people are from the US and will be able to guide you.

Nice to meet ya!


edit - make sure you tell them about the numbness and weakness in your legs... that is a serious business.. no surgeon worth a pinch of **** will dismiss that..

[KBear]

I agree with Allison on the second and third opinions. Does your insurance require you to get a referral for a specialist? If not, then you can just schedule with another specialist and don't even tell your current doctor that you are getting a second opinion. I've never been great at being assertive, so this is what I did. I also learned over time to be more assertive and just tell the doctors how it was. I told them that I thought about suicide all the time, that it really seemed like a good alternative, that the pain was unbearable and there was no way to 'not think about it' when it was always there, and that I couldn't live like that. That is when they finally listened. Was it embarrassing sometimes? sure. But did it work? yes. I cried more than once in an appointment (and I hate crying in front of people, but I just couldn't help it). I also found it helpful to take a friend or family member (preferably one who has seen you at your worst and isn't afraid to speak up for you).

I definitely agree that you have plenty of pathology for surgery and unless they see something that is a contradiction to surgery, not sure why they would want you to continue on the pain path. I will say that for almost 3 years I was told there was 'nothing wrong with me' and treated like a head case. I then was referred for chronic pain management at 28 years old and told that there was nothing else, maybe a spinal cord stimulator (which was way too end of the road for me, in my opinion). That is when I found out that something was wrong, very wrong, it was even in my records from the previous doctor, they just thought I was too young for surgery, thus wanted me to get over it. Some may say no surgery based on various things, age, they don't believe in the technology, etc. That's why multiple opinions are so important.

Just curious, do you think your back condition correlates to your chemo? I ask because my brother had testicular cancer, went through a year of treatment, had his testicle removed and then another surgery to remove a large tumor out of his abdomen. Anyhow, this has left him with pain throughout his body, weak legs (sometimes he just collapses) and numerous other issues. About a year before he was diagnosed he was having major back pain and no one could find a thing. In hindsight, he obviously had cancer at that time (it has spread to his stomach and lungs by the time they found it) and we wonder if somehow the back pain wasn't a symptom of it. So just wondering if this is a common occurrence as I know others who had cancer and have no ill effects from the chemo and all of it.

[ChristinaE]

Hi Alison and thank you, both for the welcome and for the advice. I'm very happy with my ortho, actually - he's been great, and he's been talking about surgery for years, I've been the resistant one - it's just the surgeon I'm unsure of. I *know* there's something wrong, I can feel it every minute of every day. But the surgeon seems to think either the MRI was wrong, or that I should have healed by now. I guess I'll wait until I get the new tests' results and see what he says then - then go see another surgeon. Thanks again for commenting, I really appreciate it.

[KBear]

Hi Alison and thank you, both for the welcome and for the advice. I'm very happy with my ortho, actually - he's been great, and he's been talking about surgery for years, I've been the resistant one - it's just the surgeon I'm unsure of. I *know* there's something wrong, I can feel it every minute of every day. But the surgeon seems to think either the MRI was wrong, or that I should have healed by now. I guess I'll wait until I get the new tests' results and see what he says then - then go see another surgeon. Thanks again for commenting, I really appreciate it.

Since some orthos do surgery, there may have been a misunderstanding. I think we were all saying to get multiple surgical opinions..... which we recommend even if you are going to use the current surgeon, always good to know that for sure is the right surgery for you. Two sets of eyes (or more) on the case can find any potential problems that might be missed by just one.

[Hooch]

Oh well if ortho is in your corner re. surgery he'll give you referrals and such, you're on your way.

[ChristinaE]

Hi.

You have significant pathology and are significantly disabled. I am unfortunately not surprised that they let you get this bad without at least exploring the surgical option. Seriously, if you are not a surgical candidate I've got two heads. You're obviously well aware of the risks. Thank god you are insured.

Thanks so much, Hooch. Actually, my orthopedist talked about surgery years ago as an option - I resisted the suggestion because I had just gone through several surgeries for cancer. So he didn't let it get this bad, it was my choice to try to live with the pain. Something I now regret and am trying to fix. Ironically, I only have COBRA insurance as long as I manage to find the money to pay for it each month. Once that time is up, I'm on Medicaid...
I honestly don't really expect or want them to do anything for the thoracic discs, it's the lumbar area and the radiculopathy that's really getting to me.
Oh, I'm always respectful to doctors, even ones I disagree with, despite how they might treat me personally. I guess what I meant is I'm just really bad at standing up for myself. I guess I'll just write down everything I want to say and maybe, I can talk one of my friends into accompanying me to the next visit as a sort of patient advocate.
I definitely want to get a 2nd (and even a 3rd) opinion, whether surgery is recommended or not - I want to make sure that medically, I choose the best option for me. I just hope the tests are so overwhelmingly supportive that the surgeon doesn't try to say there's nothing there to operate on or no reason for surgery. Because no matter how 'in the right' I know I am, I'm absolutely pathologically horrible at standing up for myself and tend to back down rather than risk confrontation. But then, I'm so damn tired of living like this, I just might snap and end up reading him the riot act if he does pull that on me. Either way, I'm sure I'll be spending a lot of time on the forum and hopefully that'll help bolster my courage and self-confidence enough to handle all this.

Thank you again for commenting, I really appreciate the support and advice. Thank you!

[ChristinaE]

I agree with Allison on the second and third opinions. Does your insurance require you to get a referral for a specialist? If not, then you can just schedule with another specialist and don't even tell your current doctor that you are getting a second opinion.

Thanks for commenting, KBear. My insurance is pretty good like that - I don't need to pick a specific primary doctor and I can go to any specialist I want without a referral from a primary. I think I'm going to wait for the tests, then see what the surgeon says after that. If he's still trying to say there's no reason for surgery or whatever, then I think I'll be going back to my orthopedic specialist and telling him I want to see someone else. By the way, sorry for any confusion - when I say 'my ortho', I mean the orthopedic specialist who's been handling my care from the beginning. The surgeon is someone entirely different who I only just saw. The surgeon is a very well known spinal surgeon at the NYU Hospital for Joint Diseases but I have to say, I'm not terribly impressed with him so far. At least not his bedside manner.

Just curious, do you think your back condition correlates to your chemo?

Although there's no documented research that I can find, both me and my ortho think there is a direct link. Prior to undergoing chemo, I'd never had a problem with my back in my life (and I played basketball and jumped horses over fences). During chemo, the treatments would bring my white blood cell count *way* down. So in order to boost it back up to help my immune system, I received a shot of a drug called Neulasta after each round of chemo. This drug caused my bone marrow to go into overproduction on WBC. One of its side effects on about 30% or so of patients receiving the drug? Swelling of the bones and extreme bone pain as a result. Guess who fell into that 30% bracket... Though I don't have the medical knowledge to back it, I think that all that repetetive swelling must have weakened my bones somehow and left me open to thinks like herniated discs and whatnot. My orthopedist (and my pain management doctor, actually) think it's possible that I actually had underlying conditions and, while I was healthy, I was asymptomatic, but once the chemo knocked my immune system for a loop and weakened me, those conditions went wild, so to speak. So whether you agree with one theory or the other, all three of us agree that there must be a connection between having undergone chemo and the current condition I'm in. Proving it, though? Pretty much impossible, unfortunately, otherwise I'd be suing the pants off the drug company.

Thanks again for commenting and for your support, I really do appreciate it. It's really nice to be in a place where not only can people *really* understand what I'm going through, but they also believe me when I say how bad it is and don't automatically assume I'm exaggerating. It's a real comfort and for that, I'm tremendously grateful.

[ChristinaE]

Since some orthos do surgery, there may have been a misunderstanding. I think we were all saying to get multiple surgical opinions..... which we recommend even if you are going to use the current surgeon, always good to know that for sure is the right surgery for you. Two sets of eyes (or more) on the case can find any potential problems that might be missed by just one.

Oops, sorry if I confused anyone! My orthopedist is a great guy and I've been seeing him for 4 years - for 3 of which he's been saying I should think about surgery, but I was trying to avoid it because I was basically 'surgeried-out' after all the cancer surgeries. The surgeon is a whole new entity and yes, even if he ultimately DOES recommend surgery, I'll be getting at least a 2nd and possibly a 3rd opinion, just to make sure I end up choosing the right plan for me. Again, thanks for the support!