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    Old 03-17-2009, 08:03 AM   #1
    jshu43
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    Doctor's mixed messages - what to do?

    I have cervical problems from C4-C8 and was told that I should have an ADFC. I'm in the process of getting a second opinion. My confusion comes from whether to have steroid injections or not. I just started seeing a Pain Specialist and he wants me to do the injections along with traction before I go ahead with the surgery. He seems like a good doctor.

    I have severe pain in my neck and upper back and shoulders with pain down my right arm with tingling and numbness. I've tried everything but the steroid injections including radio frequency of the facet nerves, botox, chiro, acupuncture, lidocaine, PT, etc. I've had this pain for almost 20 years and it just gets a bit worse each year.

    The surgeon that I have an appointment set up with for a second opinion (who is supposed to be very good) told me NOT to have steroid injections, that they have had complications from some patients that had them.

    So, my pain specialist wants me to have the injections before I decide on surgery, and my surgeon is advising me not to have the injections. I think both of them are good doctors. I'm actually not keen on having the steroid injections and with my past history, not all that optimistic that they would be my long term solution. But I don't want to mess up my relationship with my pain specialist. Any advice?

     
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    Old 03-17-2009, 08:53 AM   #2
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    Re: Doctor's mixed messages - what to do?

    Only you can decide on what to do next. I did NOT have the injections, but some people swear by them. I recently hac acdf (3 level, c-4 thur c-7) in which I now know I waited far too long for. I suffered needlessly. The pain really can change you. Remember, all people (Dr's. too) have an opinion depending on their life experience. You need to search your SELF to determine what is best for YOU. I wouldn't put all my eggs in the pain specialist's basket. He does not have to live with what you are living with unless he is your spouse.... If he will treat you differently if you do not do what he says, I say he would not be the Dr. for me. I believe if he truly is a good Dr., he will respect your opinion and decision what ever that is.... And continue to treat you as well as he/she has been. I think the pain is probally beyond his expertise at this point. I hope this helps.
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    Old 03-17-2009, 09:36 AM   #3
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    Re: Doctor's mixed messages - what to do?

    Thanks so much for your reply. It's great to talk with someone who has some of the same areas that are affected. What areas of pain did you have? I'm all new to the lingo, but the little bit I can tell is that there's problems mainly on the left of my spine, then going to the right and then back to the left. One of the worst areas for me is my left upper back/shoulder area. I'm curious if you had any pain in that region? My pain specialist said that C4 was the disc that affected that area. But the first surgeon I saw seemed to concentrate on C5-7. I desperately need the area on the upper back/shoulder to be fixed. It goes into spasms and shooting pains - just agony.

    Since then I've had a myelogram, but I haven't seen the results. That should make things clearer. You really touched on something when you talked about waiting so long. I had seen an orthopedist about 7 years ago and he looked at my MRI results which showed my neck was a mess and he just said - why do you want your spine operated on? You need to just get off of pain medication completely and get a life. That certainly made me forget about having anything done. But it always confused me that I was disabled from the pain where I can't even sit for long periods of time - I have to be in bed - and no one could do anything about it. Now I've gotten three doctor's opinions and they all say I need surgery. Wish I had pursued it further much earlier on. I hate to think of all that I've missed out on.

    I think I will get some traction done - at least that will show the pain specialist I'm willing to do something. But he said that the steroids would make the traction work... Thanks again for your advice. I'm just not going to have the steroids at this point.

     
    Old 03-17-2009, 04:49 PM   #4
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    Re: Doctor's mixed messages - what to do?

    Hi jsh, I would sure wait to see what those tests results are before starting anything. What does the surgeon think about trying traction?
    I cant believe a doctor would look at your spine & see a mess & tell you to basically get a life, he is in the wrong line of work.

    I sure cant tell you what to do but I have much of the same problems, same areas, but more left sided. I dont have as much pain in the neck as in the rest of the areas. My surgeon told me there is no chance of improving without surgery, surgery was the last option. EVen then there are no promises. I am 21/2 mnths post op from C5-6 fusion with 4 & 7 not in great shape & more in the lumbar.
    I cant see where steroids & traction would be a long term solution & it sounds like you have suffered enough. I did try the steroids, & no major or lasting relief. I had problems for almost 4yrs before surgery. My first MRI did not show enough so the doctors blew it off & did not consider the spine again till I started PM. Chances are I will have some type of nerve damage & my pm is pretty sure there is muscle damage.

    I can see your point of not wanting to upset your PM as you may still need PM even after fusion. Then again there are other PMs. traction made it worse for me. I always ended up with awful headaches that put me in bed. I should have stopped therapy but the PT at the time continued & I was dumb enough to keep trying. It was a new PT that informed me that therapy should never make it worse & you should not have to go for long lengths of time to see improvement.
    It can be really confusing when you have 2 doctors telling you 2 different things, but in all reality you dont have to many options, it cant really heal itself & I always thought this is it, no way can this get worse, & it did. A couple weeks before surgery I did not think I would make it & The thought of that pain scares me more then I can say.
    Like I said I would get those results, make sure you get a copy of the report for yourself & then go from there. If you dont mind pop on & let us know your results I am curious to see what it reveals. Good luck, Sammy

     
    Old 03-17-2009, 06:51 PM   #5
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    Re: Doctor's mixed messages - what to do?

    I have a slightly different view as my pain management doc almost paralyzed me. I stopped the shot with the catheter in position. I just knew from the horrendous amount of pain the catheter alone was causing that putting anything else in there would be disasterous. And I was right. My neurosurgeon said my spinal cord had been compressed to 6mm(anything under 10 is bad) and the shot would have compressed it further and I'd would have ended up in a wheelchair for life.

    See your surgeon first. Steroid shots also slow healing and will postpone any surgery you might want to have. Ask his reasons and the research on no shots. Steroids can do damage. And if you have to, get a second and third opinions and don't be afraid of offending any doc. If they are offended you decided to do it another way then they have no business being in medicine. A good consumer shops and weighs his options. And you are the consumer!

    BTW, I'm fused from C3 to T1. Posterior fusion with the Vertex System...modular. I feel like I have a neck full of tinker toys! Only bad part....they may have to extend it to C2 and that costs a lot of head movement. But I have 100% confidence in my doc so that makes it easier. Took seeing a couple until I found him but once I did, I knew I had the right person.

    So shop and educate yourself.

    Jenny

     
    Old 03-18-2009, 05:46 AM   #6
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    Re: Doctor's mixed messages - what to do?

    Sammy - thanks for the good input. This board is so great - everyone is amazingly helpful. I'm going to contact the surgeon who ordered the myelogram and see if they have a report they can fax me. It will probably be a week or two before they can get me in, so I'd like to be able to do some research before I see him. I'll post it as soon as I get it.

    I didn't ask the surgeon who told me not to get the steroid injections about traction. One surgeon's asst said no problem about the steroid injections - in fact she said the myelogram they ordered would help the PM do the injections. The second surgeon's asst said DON'T do them. After getting everyone's feedback, I think I will wait as I can always get them at any time. As far as traction - that's good to know that it can cause problems. I've been dealing with a migraine for weeks and don't need to aggravate it - so I guess I'll postpone that as well.

    Did the surgery you had bring you any relief? In what areas? How did you know that you have problems in C4 & 7 - from pain or from another MRI? I'm really curious where C4 affects someone - is it my upper back/shoulder?

    Did the surgery cause the problems you have in C4 & 7, or did the surgeon not do enough? If I have 3 levels done, does that cause more problems?

    Did you have an EMG? I'm concerned about the muscle damage. Why does your PM doc think that you might have that? How do you test it?

    My upper back has been in spasms for years. This new PM doc said that he didn't want to treat the muscle as he felt sure the problem was in my spine. I thought maybe it could be circular - the spine affects the muscle which contracts and pulls on the spine, etc. Probably not the least bit possible.

    Yes, that orthopedist years back was a jerk. I should have known. He operated on my mother's knee and after the surgery she was in horrible pain. He had her on morphine which kind of drugged her out, but didn't do anything for the pain. He wouldn't change it when I asked. I'll never forget my mother grabbing me from the hospital bed and screaming in pain for hours. Horrible memory.

     
    Old 03-18-2009, 06:09 AM   #7
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    Re: Doctor's mixed messages - what to do?

    Jenny - So glad you found a surgeon you trust! You said you saw a couple. How did you go about it and what made you know you found the right doctor?

    The first surgeon I saw put me off a bit because when I met him and he was examining me for the first time, he asked me "What does a husband say to his wife who has two black eyes?" I said I didn't know and he said "Nothing, he has already talked twice!" I was shocked, but just told him I didn't think that joke was very funny. He said of course not, I was a woman, but for men it was funny. The he said I seemed very sweet, but my problem was probably that God hated women. I gathered by that he meant women are more susceptible to certain medical conditions.

    After he did an MRI and bone scan he changed his tune. He then said that my chances of improving without surgery was 0% (I guess because of all the things I had tried) and that I had an 80% chance that surgery would help. I asked him about the risks and he said well death, being a quadriplegic. But then he said that wouldn't happen. The only real risk was that the surgery wouldn't help. He showed me where the bone scan "lit up" and said that I had bone rubbing on bone and then he showed me couple of disks that he said he called bird's beaks. He said he would do an ACDF and I could look it up at some hospital's website that he had found. I asked him if he would put a metal plate in and he said no, that he would use a donor bone. That's about all he said - he said if I wanted to have the surgery we would set up a meeting and he would go over my film in detail with me and let me know exactly what he would be doing. He said something about doing C5-7. He never ordered a myelogram.

    I wasn't confident in this surgeon, so I got another surgeon's name from my cardiologist, who is one of the best in Houston. I have a lot of confidence in his recommendations. I also had heard of another surgeon when I was in rehab for my foot. The patient said he had terrible pain in his neck and upper back for years and this doctor did some special technique he had invented and now he was doing everything - he loved his surgeon. I read on the internet that this surgeon did a study using coral instead of bone - not sure if that's what the guy was talking about. So I contacted him as well.

    Both of these surgeons looked at my MRI's and bone scans and said they could help me. They wanted me to have the myelogram which I did. I made an appointment with both, just to make sure everyone is on the same page.

    I'm curious if they will want to do C4 as well as my PM doc said that C4 was just as messed up as C5-7 and that a lot of the pain I was having was from the C4 area. I'm also curious why the first surgeon didn't ask me to have a myelogram. Maybe it's because he's not in the medical center like the other two are - not sure.

    Wow - you had quite a bit done! Did you experience a significant degree of relief from the surgery? What areas does C2 affect?

    Take care,
    Judy

     
    Old 03-18-2009, 09:25 AM   #8
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    Re: Doctor's mixed messages - what to do?

    Hi Sammy! I got the results from my myelogram. It's interesting in that it is a bit different from my MRI. They did a CT scan and there's another report just titled myelogram cervical. The myelogram cervical says:

    "prominent dorsolateral defects, as well as root sleeve deformities on the right at C4-5 & C5-8. There is a small root sleeve deformity on the left at C3-4 and questionable minimal root sleef deformities on the left at C5-6 and C6-7. There is a moderate sized ventral defect at C6-7 with smaller ventral defects at C5-6, C4-5 and C7-T1. The findings are most consistent with spondylosis. There is mild canal stenosis at C4-5 and C5-6, but no definate cord compression demonstrated.

    The CT goes into greater detail. Forgive the detail, but I don't know what's important.

    C3-4 Minimal spondylosis. Moderate degenerative hypertrophic changes in the facet joint on the left and minimal degenerative change on the right. There is minimal foraminal narrowing on the left.

    C4-5 Minimal spondylolisthesis of C4 in relation to C5. Moderate to marked degenerative hypertrophic changes in the facet joint on the right. Mild foraminal stenosis on the right. Small central dorsal disk protrusion with mild 8-mm canal stenosis. There is slight indentation of the ventral surface of the spinal cord and slight spinal cord volume loss on the right although there is no cord compression. There is mild foraminal stenosis on the right.

    C5-6 There is minimal spondylolisthesis of C5 in relation to C6. There is mild to moderate spondylosis, greater ventrally. There are moderate to marked degenerative hypertrophic changes in the facet join on the right. There is minimal foraminal narrowing on the right. There is no spinal stenosis.

    C6-7 There is moderate spondylosis and degenerative change in the disk with spondylotic change, greater ventrally. There is minimal dorsal spondylosis w/o canal stenosis. There is a somewhat effaced appearace of the lateral recess of the thecal sac on the left and poor filling of the root sleeve on the left. I cannot exclude the possibility of a foraminal disk herniation on the left.

    Impression:

    Cervical spondylosis and degenerative spondylolisthesis at C4-5 and C5-6. There is mild canal stenosis and spinal cord deformity w/o cord compression. There is foraminal stenosis which is greatest on the right at C4-5.

    Thanks for any input!

     
    Old 03-18-2009, 02:57 PM   #9
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    Re: Doctor's mixed messages - what to do?

    You know I am not sure how myelogram works & I dont see alot of them mentioned on the boards, I do see the discograms which I know have picked up problems a MRI can miss. I am curious as to why they ordered a myelogram for you. I had a doctor speak of one in the past but he never ordered it, wish he would have.
    It sounds pretty complex. I know some doctors dont prefer to do multiple level fusions & will do the discs that appear to be in the worst shape. I wish my surgeon would have done C7 when he did the 5-6.
    Hopefully feelbad (Marcia) will pop on here as she is really good at explaining alot of these things. I noticed the one report stated it could not rule out herniation, with all your pain I would not doubt they may find more if they go in surgically then any test may show. I had alot more & the the spinal cord was involved more then the reports stated. If you have bone on bone that must be pretty painful. I had a follow up today & last night was the worst since my surgery & he did state that due to having this problem for so long it may take longer to see improvement. Only at the end of one year can they say there is muscle or nerve damage for sure. Although I still have the C7 & 4 I am thinking how the heck can you determine if those discs are causing additonal pain over that year. It can be confusing.
    I would go with whatever surgeon you feel most confident in & as far the the other well he sounds like he has a problem with women. You should go back just to ask him if he heard the one about the man with 2 black eyes,lol.

    The one surgeon you spoke about sounds like he really looks into advanced treatments & that would impress me. I would be curious to know what discs they do if not all of them. If every surgeon feels you need this done I cant see any way around it. I would be fearful of it getting worse. I put mine off for a month & within that month it was awful, I could not believe it.
    I hate the upper back pain & can sympathize with you there. Good luck & I am sure Marica will pop on here. Sammy

     
    Old 03-18-2009, 05:36 PM   #10
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    Re: Doctor's mixed messages - what to do?

    Hi JSHU.....you asked about how I knew I had the right surgeon. Well....the first one was the pain guy and he was a jerk. I am allergic to xray dye and he insisted that if he used it I wouldn't be affected because he was using so little and it was within the epidural space. I asked for a crash cart to be available just in case and he stormed out of the room. My allergist later told me I was right...not him.

    Surgeon #2 did a 15 minute neuro exam(after my neurologist did a 1 hour exam) and decided that I didn't have sufficient deficits. I told him it was 9 am and I'm fairly good in the morning but get worse during the day. He then told me to come back another day at a later time but he doubted anything would change. I disliked his arrogance. I had traveled over 2 hours to get to his office and deserved more than come back at a later time.

    Surgeon #3 was the one my neurologist really wanted me to see first but it took a long time to get in to see him. He had his resident do a full neuro workup including tests even my neuorologist didn't do. Then the surgeon came in with my MRI and explained everything in the pictures in full detail. He recommended surgery and gave me options as to what I might want to do surgically. He talked quietly and treated me like an adult and answered every question I had.

    I knew I had a winner. Then I had him checked out by a friend who is a malpractice lawyer who agreed. Neurosurgeons get sued more than any other specialty and his practice was made up of people who other surgeons had screwed up. And the suits against him were well below the average.

    So I had a winner!

    Jenny

     
    Old 03-18-2009, 06:43 PM   #11
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    Re: Doctor's mixed messages - what to do?

    Sammy - I'm kind of curious why doctors don't order the myelogram when I see the added detail they give. Of course the myelogram probably costs a bunch and it's not a cake walk like an MRI. But then it sounds better than a discogram. I read that they really recommend the discogram for low back problems.

    You touched on a point that I'm curious about - on my MRI it shows problems from C2-3 through C7-T1 with most of the stuff C4-C7. (unlike the myelogram which showed C3-4 through C6-7) It would be three discs if they go from C4-C7 - is that too many to do at once and if you do limit them does that affect the connecting discs negatively - put more pressure on the disc not done?

    I have osteoporosis and so taking bone from my hip doesn't sound very doable. What about artificial discs? I read that some doctors do that - why don't more doctors use them? Is there a problem with them?

    I'm so sorry you had a bad night! Hopefully that was the worst and it will get a bit better each week.

    I have been having a lot of pain this week. I don't know if it's from the myelogram or because I had a Reclast (osteoporosis) infusion and it can cause muscle pain. My neck is so stiff that I can't hardly move it and my entire back is on fire. I won't be seeing one of the surgeons for about another month - that's the earliest he can get me in.

    Oh - I went to my PT today and took my myelogram report. My PM doc had sent orders for me to do the traction. I thought I would ask her what she thought. She said because of the spondylolisthesis that traction was contraindicated. I'm so glad that I got everyone's input here and waited. I'm going to have to go back to bed - my neck just won't take sitting at the computer.

    Thanks so much for all the input! Sending healing thoughts your way.

     
    Old 03-19-2009, 05:48 AM   #12
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    Re: Doctor's mixed messages - what to do?

    Jenny - I'm so glad you found a doctor who believed in you. Nothing is worse than being in constant pain - AND not having a doctor behind you. I paid for a report on Health Grades for the two surgeons I am considering and they don't have any lawsuits against them, so that makes me feel good. I just have to go and meet them now and see which one I feel the best about. To make things more complicated - my PT recommended a third surgeon - she said every one of his patients that she saw after their surgery did great and that's who she would go to. I need to get the surgery done pretty soon, so I can't spend months going from one doctor to another - not decided what I'll do. I'm just praying that I will go in the right direction.

     
    Old 03-20-2009, 12:33 AM   #13
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    Re: Doctor's mixed messages - what to do?

    jshu, I just saw this post and I am SO glad you didn't go through with the traction or injections. I was stupid enough to do both and it caused more damage in a short amount of time. The traction was UNBEARABLE. It was pushing the bulges onto nerves above and below my discs vs. the disc pulling off the nerves. The injection was excrutiating and only helped about 50% for maybe a week then I went back to normal bad pain levels. PT/traction and steroid injections can be a short term "fix". When damage is done to the neck that surgery is discussed and needed, I don't understand paying the cost of medical charges for that short fix.

    I had c4 to c7 fused. I chose cadaver bone vs. bone from my hip. I didn't need any additional part of my body to hurt. My neck was bad enough lol I have artificial discs in my L4/L5 and L5/S1. I "think" that my neurosurgeon told me is he felt there was too much risk using the artificial discs in my neck. Sometimes the discs can shift and he didn't want to risk them shifting into the spinal canal. One of the artificial discs in my lower back has shifted. We are just watching it. It does cause pain right now but not enough concern to make me go back in for surgery.

    What I am going through now (3 years later) is that C7/T1 has ruptured out onto both sides and C3/C4 has a mild bulge. As weird as it sounds, we are waiting on the c3/c4 to get worse before they go back in to do surgery. When they do my next surgery, they have to remove all the hardware in my neck and build a cage from c3 down to t1. My neck motion will be limited. I am trying to live with the pain. Every day I ask myself which is worse, the pain or not being able to turn my head. In my mind, not being able to turn my head is worse.

    I am glad I had the 1st surgery done though. I had SEVERE burning across my right shoulder into my arm. I had numbness, tingling and burning into my fingers. The severe burning was totally gone after my surgery. I am still dealing with alot of issues with my fingers though. I have quite a bit of scar tissue around the fusion site as well as spondylosis (which is basically degenerative arthritis) involving several vertebra.

    Just remember, its YOUR body. If you, like me, have had enough of pain, tell the doctor you want it FIXED and not a short term fix. Good luck in whatever decision you make!!

    Last edited by hugg724; 03-20-2009 at 12:36 AM.

     
    Old 03-20-2009, 03:30 AM   #14
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    Re: Doctor's mixed messages - what to do?

    Hey there are so many questions generated when somebody fall in some health related problem and when different doctors give their view and if they also are differ from each other then we feel that we are in critical situation but as per my experience at that time u have to take decision which comes common from the different so u will be in secure path. So take wise decision in critical time.

    ---------------------------------------------------
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    Old 03-20-2009, 06:09 AM   #15
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    Re: Doctor's mixed messages - what to do?

    Hugg 724 - Gee, you brought up a lot of stuff that I have questions on. Thanks for the info on the artificial disks - I didn't understand why everyone didn't get them - but I can see how dangerous that could be. I think I am with you on the traction and injections. I have tried everything else for years and nothing works for any length of time. In the case with the radiofrequency of my facet nerves - it got better for a while then it actually caused pain to spread. I thought I would go ahead with the injections when I thought there was no down side (the doctor was supposed to put me in twilight sleep), but after hearing everything, it's just more money my insurance would have to pay, pain I would endure, perhaps more damage because of the little breaks in my spine and it would put off my surgery even longer.

    I've been reading about people who get a fusion and then develop problems in the areas above or below their fusion. Do you know if this is just natural or a result of the fusion? That's kind of scary. It sounds like I will probably have C4-7 done, just like you did. I'm excited to hear that it helped. I have the severe burning across my upper back and shoulder area on the left, extremely stiff neck, and numbness down my right arm. I think the degeneration kind of bobs and weaves in my neck. When do they have to do a cage? Is it a number of discs involved that determines that?

    I'm really worried about the scar formation you mentioned at the fusion site. The last couple of surgeries I had, I've had problems with that. I had a tongue advancement for sleep apnea and the inside of my bottom lip has strictures that pull - very painful. Then I had surgery on my heel and inside my heel afterward there was 30% scar tissue. I had a blepheroplasty and have strictures on my eyelids that pull. I did have another surgery on my foot to deal with the scar tissue and it was a success - so it's not like all the surgeries have been bad - but most. I need to make sure my surgeon will do everything possible to prevent them.

    I have an appointment with a surgeon next week - so I'm trying to get all the info I can to ask the right questions. Oh - did you have a metal plate put in with your fusion? I am a bit concerned about cadaver bone as it doesn't have quite the success rate - and I really want to have success! Maybe the metal plate would help?

     
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