He acknowledged nothing, absolutely nothing, nothing about what my MRI report read I'll refresh your memory my MRI report reads C3-4 continued left uncovertebral osteophyte with associated disk bulge causing left neural foraminal stenosis. C5-6 right uncovertebral osteophyte with associated disk bulge causing right neural formainal stenosis, C6-7 bilateral uncovertebral osteophytes with associated disk bulges causing bilateral neural foraminal stensois
L4-5 continuted borad disk bulge eccentric to the left with posterior element hypertrophic change causing left neural foraminal stenosis inferiorly.
L5-S1 continued borad disk bulge with posterior element hypertrophic change without appreciable mass effect.

He told me I'm fine, my MRI looks good, there is nothing to be done surgically.
Not that I'm not looking to be cut open, that is not what I want I've been through enough surgeries.

He didn't even acknowledge that I got these issues going in, he couldn't explain why I have the pain in my lower back, going down my leg, leg numbness, toes tingling, neck is starting to not feel good again, burning starting up again in my arms, my last finger on my right hand is completely numb, I have numbness that goes into my head that starts from my neck and sometimes goes into my face, and he says I'm fine.

He told me to go to a chiropractor, like I'm going to have someone adjust my neck while I already have two fusions in my neck at C5-6 and C6-7 why on earth would I do that.

Needless to say you know how I feel, frustrated. So I walked out of there thinking am I going nuts or what, am I just thinking I have pain and numbness when I don't. But my hubby told me that I'm not and to get that thought out of my head, because if my MRI report read that all is fine then I would be nuts, but it doesn't read that.

So I've got to find someone that can help me, so I'm back to square one.
Tulip15

Tulip, i'm sorry. That doc sounds like an unconcerned jerk if you ask me. Yes its soooo frustrating to have to hear from him that you are fine!??!!!! I just don't understand that and you are certainly NOTTTTT nuts, okay??? No way. Its very unfortunate that you are back at square one, but now you really have to focus on finding another doctor. Maybe you want to try an orthopedic spine specialist to see what they have to say? Or even a different neuro, whomever, just make sure you don't give up. And for hiim to just tell you to see a chiro is absurd. I cant remember if you've had all the injections and other things they do before surgery...but I would think he would at least suggest PT or injections or something else. That's ridiculous & it's even riling me up! LOL Sorry, not to make light of this, but do not give up and keep doing what you have to do to find a doctor that will work with you & explore all your options.

Baybreeze -- I think you were nice calling him a jerk! I would say somethng else but I don't want to get in trouble. :D

I was thinking the same thing - time to find a orthopedic spinal surgeon because this definitely is NOT in your head.

I think maybe what he meant was that his limited capabilities prevent him from helping you. Neurosurgery is very specific. Im not even sure what they do because I went to a neurologist who was a complete jerk and didnt help me at all. He gave me exercise sheets.

If you have had the surgerys and still have pain I would suggest a very good pain management doctor, which are very hard to find, you must do lots of research and ask around.

Im sorry you had this experience, I agree with the others, you need to get to a spine specialty clinic. I agree with you also, the chiropractor doesnt sound like a good idea at this time.

Hang in there, it takes a while to find the right doctor who will help you, but keep trying, I finally found one! It took me 2 years to get to him.

Jen

did this just happen to be the actual NS who did surgery on you or a new one?either way,you DO need another more experienced opinion.one biggie here to always remember is once you have had surgery done on any areas of your spine,getting any other NS to even touch you with a ten foot pole is really a miracle in itself.unfortunetly they do not want to take on your 'liabilitys".what i did in your situation,for a few different reasons,was went to our local university teaching hospital that my son had been in before and recieved wonderful care there.these types of hopsitals just are kind of the places people go when everything else has failed or they cannot get another surgeon to really take on what needs to be done.this is where i would very strongly suggest you go if you have one even within a few hours driving distance,they are just much more willing to take on the bigger challenges since they are a teaching hospital.this was seriously the best move i ever made for my c spine and spinal cord issues.i saw the head of neurosurgery for my consult and then he decided what needed to be done.i really do think this would be the best place for you to go too.this hosp was actually my third opinion.

i had already had two c spine surgerys and my pain was actually even worse than what i first presented with at the very beginning of my nightmare.it was sick and my second(the one who did my two surgeries)was pretty much 'done' with me and this was despite the fact that when he placed the hardware inside my c spine,the idiot actually managed to impinge my c 7 nerve root.something his stupid nurse was not even going to tell me was actually IN my own MRI report.unbelievable really,luckily i had gotten my own report and knew she was withholding my actual Dx as to why my pain was sooo bad and my neck had locked up onthe right side.unreal actually that someone could be that flippin cold.this is when i went to the U of MN.they helped me tons there.

you very obviously have some issues that this other surgeon did not take care of and that need attention,its just getting to the right NS who is willing to care enough to take on your case.the uni hospitals are really great for us unfortunate patients who had NSs who simply didn;t do their jobs properly.you do deserve better.thisis where i would goif i were you.i do hope you live near one.please keep us posted.good luck,marcia

This is the neuro-surgeon who has done all my operations from my ulnar nerve surgeries, to my two cervical fusions, and I've gone through the pain management route, I went through the epidural injections the RFA procedure just this past Sept and nothing has helped. I actually just a few weeks ago because I was at my wits end with my pain management specialist because all he would prescribe was narcotics, I went to my family physician, he took me off the narcotics, and put me on Lyrica, and I'm finally starting to see some relief in the nerve pain and it is helping me sleep at night. In fact I kept complaining to my pain doc. that i couldn't sleep because of the pain and he would never do anything about it, just kept me on the pain meds, in fact when he did the RFA procedure he even commented to me during the procedure that he could tell by the ct-picture of my lower back that I probably wasn't sleeping good at night because I am loaded with bone-spurs and still he wouldn't prescribe anything, go figure........................

The hospital that I was going to is #1 in the USA it is a teaching hospital, but what I have found is that they have the poorest bed-side manners ever, but my neuro-surgeon didn't. I was seen by several of the doctors at this hospital and their bed-side manners are awful plus they have the attitude that because they are the best that they are all hot S****............if you know what I mean. Now tho, I must say I was always taken care of very well by the staff in the hospital after my surgeries, I never had a problem, the hospital itself is clean, and so forth.
I honestly don't think my neuro-surgeon knows what to do with me, plus I also think that he knows what is going on with my head numbness and doesn't want to address it because it has something to do with my last fusion, especially since it all started three months after my surgery when I started complaining about it, and now I've been dealing with it for a year, and it continually gets more and mroe progressive.

So now I"m back to square one, I think when I find someone new, I just may have to say I just moved to this area, and not tell exactly where my previous surgeries were done, because I agree with you all that I don't think anyone will be willing to take on my case especially since I've already had two fusions done by a local hospital already.

I'm at my wits-end with all of this, and I really didn't need this right before christmas, it's really putting a damper on everything. I've had it................

Tulip15

This type of situation really p.... me off:mad: Who in their right mind WANTS to be in pain ? Who wants to spend the week before Xmas going to see the doctor? Of course you are in pain!!!!!!!! It's just that no one has been smart enough yet to figure it out!!!! One of the first things I learned in nursing school is that if the patient says she is in pain then SHE IS!!!!! You can't project your own opinions on the patient (well she shouldn't be in pain, there is no obvious reason, etc). You just need to hang in there until you find a doctor smart enough and kind enough to make an accurate diagnosis. OK...I'll get off my soapbox now:)

Deb

Tulip. Dear, Tulip. Firstly, I am very sorry. I really feel for you. I have gone through something VERY similar in my situation. I'd be happy to share in more detail if you're interested. What I can offer you is this: Keep at the front of your mind:
1. Your pain is real.
2. You have a right to relief from pain.
3. You are obligated to treat your body's injuries - it's the only container you've got for this life, my dear!

OK. Those are the basics. I keep those priorities when everything else starts swimming and spiraling around. It helps me keep my focus.

My advice if you're looking for it (if not, stop reading now ;)): make appointments with as many spine specialists you can track down through recommendations from your GP or other resources you can gin up such as PT's you trust and such. When you meet with them, tell them a very general but truthful summary of why you're there. I say something like, "I've had troubles with my back and I care a lot getting better, so I would like your thoughtful opinion as to what you think is wrong and what we could do to make it better. I'm a very motivated patient. I'm willing to work with you and other medical professionals (PM, PT, etc.) and I'm hoping you'll have the same approach." I think docs get a funny feeling if they feel like you're playing them off each other - just like if kids play parents off each other.

I have been above board all along with doctors. I don't give ALL the details up front, but I would if asked. So far it's seems to have worked for me. I have seen 4 spine docs in the course of 6 months, 2 actively. Narrowed it down to 1 to do the revision surgery I'm having next month.

Be kind to you. We're here for you. (((gentle hugs)))
- Margaret

Margaret so what your saying is don't say anything about being there for another opinion correct?, I made that mistake once and I won't make that again. I've been thinking about it, and I did think of not even saying that I have recent films with me even if they are 3-6 months old, because with my body my films change quickly, I thought I would just go into it somewhat blindly, but I do have to be honest of when my surgeries were, what if they ask where did I have them done, do I have to be honest with that or not?

All day long I keep thinking maybe it's me, maybe I'm just so used to feeling pain, that my mind is telling me I have pain, but then I say to myself, stop thinking like that because I wouldn't wake up with pain in my butt cheeks that hurts so bad that anything I do nothing relieves it, or the numb leg I get when I'm standing or sitting, or it wakes me up at night, I'm so ticked off, I felt so comfortable with my surgeon, and now I don't, I have no respect for him at all as a doctor who wants to help his patients through pain to guide them to the right person, and the strange thing is a surgeon telling a patient to go to a chiropractor is unreal especially for my neck and how my whole neck is degenerated, gosh! one wrong move from that kind of specialist and I'll be doomed. OK as I'm sitting here I just got numbness in my leg, and numbness going up my head, so I cannot be imaginning all of this.

I really need to get into the holiday spirit, I cannot let this jerk (i'm being nice) let me put a damper on my holidays.

You are all so sweet, I appreciate all your kind sweet gentle words of encouragement that you have given me, I'd be lost without you all, and these boards.
Thanks!
Tulip15

Oh, punkin. There are 2 things happening here.

1) You're in pain right now that needs some relief. Do you have any resources to treat that? A PM you can call or GP to evaluate your current pain management plan? This is not good. This level of pain is clouding everything. :(

2) When consulting with doctors, I bring a thick file of EVERYTHING. It really helps when they ask me for history or specific information. It can move things along faster. I do not mind showing older images and I find it doesn't impede getting more current images if the dr. feels they might be useful.
- First thing in the file is a typed-up chronology of what treatments I've had done: PT, injections, surgery, meds., etc. Make it neat and easy to figure out. Bring a copy to give to the dr. Include names and contact #'s of your GP, surgeon, and PM. You want to be above board on these things. Don't include consultations. Just the folks who've actually DONE something to you.
- CD's of all images (MRI's, CT's and X-rays) so they can look at them right then, if they like.
- copies of any reports
- Anything else relevant, in chronological order or categorical order (PM, GP, etc.)
- This takes some real time and effort to compile, but it really is worth it.

Your tone and presentation is really important when interacting with doctors. You want to convey that you're having problems with your back and you're hoping they can help you. Your questions for them are: 1) What do they assess your problem to be? 2) What approach would they use to treat it? No tears, no whining, no desperation, no victim voice from you! ;) You may be feeling this, but it doesn't go over well with these guys.

You have every right to have a conversation with other doctors in the same specialty. Just like you have a right to have a conversation with hair stylists before choosing best the one for you, right? Be respectful, be professional, and talk on their level. Bring a buddy if you need the moral support. Nothing wrong with that! You can always cry in the parking lot. Lord knows, I've done that a time or eleven!

I hope you can get your pain down some soon...
- Margaret

just an FYI here bit in this day and age,anyone can find out about who you have seen when you are under their care.i was told to lie to my second opinion NS by the actual referral person at my primarys clinic only becasue she said they wont DO second opinions.so i did just that.everything was fine and my appt had been set,then i get a call from my new going to be seeing NSs business office person who just reamed me out over the phone becasue i was not truthful?when i told her that(after she told me that they just 'didn't do" second opinions)i was told this before hand that is why i did not say anything,she got all snooty on me.well i happened to have at that time what was thought to be an actively bleeding AVM(turned out after angio to be a cavernous hemangioma that was bleeding) and was told i needed to have this thing removed from my cord before the other NS i had seen would even consider doing my fusion surgery for my herniated disc.he also told me about the major damage i would have and going to a rehab facility and on and on,well geez,i was scared outta my flipping mind.when i told that witch that and then asked her,okay,if this was you what in the hell would YOU be doing right now?the very same thing?? she sat there and then said,well,okay,we will let you keep the appt.it shut her right up.but boy was i pissed.i called my referral person who was even more pissed than i was about them not wanting to do my second opinion?she called her contact person at my ins co and then called me back.she told me my ins co was making a call to the 'business office manager" for a little chat about the rights of patients to actually HAVE second opinions.the thing is YOU DO have the right to a second or even third(which i eventually had to do too)opinion depending upon your condition.if any doc gives you crap,call your ins co and get as many people involved(like your referral person at your docs office).you do have that right despite what you may be told.but attempting to actually not tell any other doc about whats up?they WILL find out,believe me.they just do and can.just check with your referral person at your primary since they are in charge of coordinating all of your ongoing care,even your doc can call another doc too.but check with your ins co to se what your actual rights are.you need to know where you stand before even attempting to make that appt.you dont want any sudden suprises popping up,trust me.i was kind of expecting to be treated like a leper or something when i showed up for that appt but it was quite the opposite.i would have LOVED to have been listening to that ins co phone call made to the witch in the business office.i spoke to her that day and she was nice as nice could be to me.its great to have the backing of your ins co,believe me.just be honest with them,really,they will find out that you lied.good luck hon,marcia

I agree with you that we need to be truthful with our conditions to doctor, but I made a mistake not too long ago in telling a doctor that I was there for a second opinion, and I think with that he didn't want to touch my case and sent me on my merry way. I learned by that mistake, so when I just went to a new rheumatologist I was completly honest with her, and told her that I just need her to put the pieces of the puzzle together. Besides on earth does one doctor find out who you have gone to if you don't give them that information, (patienti confidentiality)? There are some docs that are so very opposed to second opinions and some that encourage it, so I think us as the patient need to be very careful in this department.

I just made an appointment with a well-known brain and spine institute near my area and I have an appointment on the 29th of Jan, and I'm starting some acupuncture treatments on Jan 16th, I did acupuncture about three years ago before my first cervical fusion, so I'm willing to try it again. I'm also looking at another brain and spine institute to even get another opinion, just to see what two other docs will say about my condition.

I think if some of our doctors could live in our bodies for just 24 hours, I think that they would treat us all so very differently, more compassionately, more understanding, and more willing to send us in the right direction if they cannot help us. And I wish that they would understand that every person, and every body is different then the text books that they learned from, no two bodies are alike and that every ones' pain levels are different and if there were 12 of their patients with the same problem that each of us might be experiencing different sets of symptoms.

So with all this I will never say I'm there for a second opinion, I will just state all my facts, take in my films, and my results, and have them put the pieces of the puzzle together. The medical industry is very frustrating for us patients.
Tulip15

I've had a lot of success with my Spinal Orthopedic Surgeon - maybe consdier an evaulation with this kind of physician as well.

On the insurance front, I cannot say. Each organization is different.

Regarding doctors that are threatened by patients seeking second opinions: I just know they're not the doctor for me. I realize that when we're in pain, we are not feeling as empowered as we actually are. But! Remember that it is a two-way street. Doctors do not actually hold all the power cards for you. If a particular doctor does not suit the type of care that you need, respectfully move along. Isn't this how we would handle ourselves in any other interaction in society? I know first hand how frustrating it is when we hope a particular doctor will be the one to help and the disappointment when s/he isn't.

Hang in there.

- Margaret

Oh, Tulip, you're a delicate flower, and you need to be cared for properly! I have had many melt downs where I start doubting myself but it only takes a a zinger to run down my leg for me to remind myself that it's real. It feels like a full-time job trying to figure out what's wrong, look it up on line, check the health boards, research docs, exercise, stretch, blah blah blah -- and then you go see a doc who's on roller skates and running off to the next patient or procedure. before you've finished even presenting your case. It doesn't have to be that way. You deserve better and to live your life to the fullest you can.

After reading your story and hearing others, I have to chime in that I share your frustrations and Chatter's advice is superb. Today I switched pain docs. I have not had a good experience trying to find the source of my pain 20 mos post fusion and each doc gives me a different story. I expected to get a 15 minute consult today and was surprised. Here's what happened:

I went to the hospital where I had my spine surgery and was given a 45 minute examination by the resident, half of it talking about everything (and I mean everything -- it was like I was being interviewed!) and the other half was a physical exam. I couldn't believe how amazing this guy was (apparently not ruined yet, ha!) and he was an excellent diagnostician. In all my years of spine consults, no one ever spent that much time asking me questions about the when, whys and hows of my pain. I had a pretty good list together before I went in of when I had my procedures, injections, all the medicines I had taken pre and post surgery, which worked and the side effects of each. I also spent a lot of time filling out their questionnaire and annotated the pain chart showing what type of pain I had in each place and whether it was constant, intermittent, etc. That little man was covered in ink! It felt like doing a homework assignment, but you really need to be prepared.

I didn't tell them my current pain doc was a jerk who didnt listen to me or care about my pain or side effects of meds. I just made up a story about how I wanted to find a doc closer to where my office is so it was more convenient. I didn't tell them the opinion of my surgeon or last pain doc or what they recommended as treatment except for the different meds they put me on and how many injections I had. I was honest about everything but didn't tell them what anyone else said.

Then he disappeared to meet with the specialist (let's call him Dr. God) and go over my llast MRI and CT scans. They did this in a separate room, which pissed me off, because I like the doc to point out what he sees. Dr. God walked in, didn't shake my hand or look me in the eye. I offered my hand to him and told him I was eager to hear his recommendations for helping me control my situation.

He changed my meds and recommended another epidural at a different level. I asked him my questions (same ones I asked the other two docs) and his answers were different. I asked him a bunch more questions and his answers made more sense to me than the last two docs. He actually admitted he didn't know the answer to one of my questions, which was disappointing, but at least he didn't make something up. He didn't think he could help with all the leg pain I have, but did think he could control the sciatic pain.

The only thing we ended up kind of arguing about was whether I could have twilight sedation for an epidural. I ended up giving in to no sedation because he felt it important for me to be awake and communicate with him, but in the back of my mind I couldn't stop thinking that it's cheaper to do it without an anesthesiologist present. I am giving him the benefit of the doubt and figure he is putting me on flexeril three times a day so I should be wasted anyway and won't care ;). I know I won't be able to handle so much of a muscle relaxant, and expressed my concern with being able to work on all these meds, but he said to try it so I will be a good girl and try it. Nothing else has helped me yet so I'll give it a try. He thinks I am in constant spasm and that is causing my nerve pain.

Dr. God was not a nice guy, no bedside manner, barely looked me in the eye, but the resident was great and advocated for me in the consult with Dr. God. When I had a lot of concerns about cognitive effects of the meds he reminded Dr. God that I was still working. (it always scares me when they say "still" working -- I hope I can continue to work for a long time because I can't afford not to!). I'm giving this guy one shot (quite literally-ha!) and will take the new meds.

If it doesn't work out I'll find another doc in the new year.

Of course my thorough exam left me in a world of pain for the rest of the day and I still had to go to work afterwards. I went to a few meetings and basically got nothing done because I couldn't sit down. Yuck! At least I have a four day weekend to get used to new meds.

So thanks for reading my long story. I think I needed to tell it but I also wanted to tell you that you are not alone and we are here to help you prepare. It's a very good idea to bring someone with you if you can -- to take notes, hold your list of questions and make sure they're answered, etc. I have been to so many appointments where all I wanted to do was cry and say it hurts everywhere!

Hang in there and maybe santa will leave a new spine in your xmas stocking.

Schragie-girl

Schragie - It sounds like you've made the best of that experience and at least there were a few highlights. I hope some good comes of the new recommendations for you. It's the journey and not the destination, right? ;)

Keep us posted, OK?

Thanks schragie for sharing your story, what really ticked me off at my appointment was he didn't even examine any part of me, not my reflexes, strength, etc...nothing, didn't even ask what aggravates my pain, what brings it on, what part of the day is worse for me nothing................this I said to myself is not much of a surgeon, wouldn't you think that he would at least do any of that. The whole thing was just so weird.

So for two days I did wonder around the house thinking "I'm nuts, I'm crazy, I'm a hypochondriac", etc....", but now today when I feel the way I do, I know I'm not, and my husband keeps telling me to get those thoughts out of my mind, because I'm not nuts.............my pain is real, my feelings are real....etc.....
One thing tho that I am starting to experiences is some minor balance issues, every once in awhile I seem to get off balance and then I'm fine, even my husband has noticed it, this I think is coming from my neck, heck I guess when I have a neck that is degenerated I guess this is to be expected.

Oh well!, on-ward I go, and just wait of my next appointment with a new doc.

Oh that one opinion I had was with a ortho surgeon who was a complete jerk, was more interested in why I didn't work outside of the home then anything else, what a jerk...................makes you wonder how some of these even get their medical degrees............

Thank all for all your help, I really appreciate it.
Tulip15

Hi Tulip:
I'm in the same boat as you (in bad shape again 18 mos post-surgery). I've been ranting about it on some other threads and it's so upsetting to go to a doc hoping for answers (or at least to be treated like a human being) and get short shrift like you are.

There was a time I told myself that surgeons were probably the most egotistical of docs and that if they were good at what they did, it didn't matter what jerks they were. Then I went to these boards and talked to people and found out that I deserved better. If a surgeon is not interested in how you are pre-surgery then they're not going to follow you/help you post surgery. After my ACDF years back, the surgeon discharged me at three weeks. :mad:. However, the surgeon who did my back fusion is still seeing me 20 months later, though I get the strong feeling he is done with me now. After my last CT he only wanted to follow up on the phone, not in an appt.

It is possible that your balance issues are from your neck and back problems, but it could also be a result of the meds you take, so don't get too worried yet. We've all been there with the symptoms, waking up one day with some new symptom and then going nuts worrying about what it means and whether it's a sign of more damage. It really stinks having a degenerative problem and wondering if it's ever going to get better -- or when it's going to get worse! I hope there is relief for you soon (from one delicate flower to another).

CHATTER-- thanks for your note. I went on Flexiril and Neurontin today and took a 4-hour nap in the afternoon. Haven't done that in a coon's age! I haven't been able to sleep in weeks! If I take this Flexiril three times a day as prescribed, I'll probably be asleep all weekend. Of course I'm horribly dizzy from it,but hope this passes. Tonight I have to double my dose of Cymbalta, so I'm looking forward to a day of nausea and shaky hands tomorrow. Aaaargh! Pain is a little better today, so we'll see how it goes.

Happy holidays all!

Schragie-girl

Hey, Schragie. Those meds can be a real adjustment. When I started neurontin, it took me quite a bit to adjust. I take baclofen - never tried flexoril. I have to take the baclofen when I'm done for the day, otherwise it finishes my day whether I'm ready or not! I ended up taking Cymbalta at night because I could not adjust to it during the day - just too fatigued. I just weaned off it because I was tired of the cognitive/personality effects of it. The pain really did increase after going off it and that has been not fun at all. It has been nice to feel more like myself again, though. I didn't laugh or cry the whole time I was on Cymbalta and I missed "me." It seems like everything has a price. I'm having surgery on the 11th of Jan, so I just wanted to try having my personality for a while. If I have to go back on it again for pain, I will. I'm on Topamax and that's really helped without the side effects I had with neurontin.

I wish you smooth adjustment these next few days. Do what you can to keep the rest of yourself healthy - diet, sleep, emotions, etc. I think all that can help the transition.

Listening to Elvis Christmas album - cheesy, but fun!
- Margaret

I just wanted to wish you a safe surgery, chatter. I also wish you a quick recovery. Please let us know how it goes.

Hey Chatter:
Thanks for the support. This stuff appears to be working so I'm very excited! Whether I can tolerate it in the long term and work is another story, but next week is a short work-week with most people off so it shouldn't be too hard.

Isn't it funny how drugs work differently for different people? Cymbalta has been good to me in terms of the depression that accompanies the pain, though it never made much of a difference with depression. I tried both Topamax (my hub called it Dopamax) and Lyrica and both made me so wasted I was getting lost everywhere. I totally relate to the having your personality back. When I went off Lyrica I was so excited when my head finally cleared but then the pain kept me up all night for a week!

I'll be thinking of you on the 11th and try to enjoy yourself as much as you can during the holidays. Regards to Elvis,

Schragie-girl