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Old 02-12-2009, 11:26 AM   #1
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My appointment today

Hello,

He did not schedule surgery. In fact, he isn't going to help me anymore. He said that my leg pain is all in my head since my tests show no nerve compression. He thinks that my pain is from weak muscles. I think that my muscles are weak, but that is because my activity level is down since this pain started. My pain started as sciatic, not back pain, so I really do not believe it is from weak muscles. Plus I used to be very active and energetic so 9 months ago when this started my muscles were not weak. He doesn't believe in prescribing pain killers for weak muscles so he is not giving me any more meds. He also said I can go back to work (even though I got fired), so this means he will not be approving any more disability payments for me. I asked about another MRI and he said no. My MRI shows grade 1 spondy, and 2 herniated discs, 1 of them has DDD.
I do not know what to do. I can barely walk, and that started in the last week. I am going to call the Dr. at PT, because he is the one who told me to stop PT and see my surgeon for surgery. Maybe he will help me. I am really beginning to shut down emotionally, I mean, this whole thing has been depressing me for months now, but after today I am hitting rock bottom. I don't know how I will care for my daughter. I really want more children, but cannot get pregnant with this pain.
Oh and also, I asked my second opinion NOT to send the notes from my visit to the surgeon I have been working with, but they did anyway. I wonder if that has something to do with the way he acted today?
Sorry to complain so much, I just really need some support.

 
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Old 02-12-2009, 11:44 AM   #2
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Re: My appointment today

Meggs.........

I am so sorry. I really dont know what to say. My thoughts though from the get go,reading your post as you are seeing the first doc, it sounded to me, as if he was putting you off along. So, he must have felt apprehensive to begin with. And then the 2nd opinion doc sent his opinion to your 1st doc and well, he made his final decision. Get a 3rd opinion. It never hurts anyways. Gather all of your test and go armed with all the records. When was your last MRI done>? I have had a cervical and lumbar fusion and never ran into any of the problems you are having. My cevical issues were really bad so, the 1st appt I even had with the surgeon, he scheduled surgery. On my lumbar fusion, I saw the neurosurgeon, he ordered a MRI, got results, sent me to pain mgt. for all the injections and burning nerves ect, finished all that, and then scheduled surgery. Was never a problem at all. i am not understanding..... get another opinion girl! I am so sorry for you.....just hang in there best you can although, I know what kind of pain I was in so its hard to even tell you to hang in there.....keep in touch and let us know what you decide to do.

LYNN

 
Old 02-12-2009, 02:46 PM   #3
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Re: My appointment today

Hi Lynn-

I am not understanding either, at all. Maybe he was apprehensive from the beginning because they usually do not operate on grade 1 spondy. For some reason I am in tremendous pain. I feel like the MRI I had in october is not seeing something. The discogram I had done in December showed that pain was coming from my L4-L5 and L5-S1 discs, so I don't understand why he would all of sudden believe my pain is from weak muscles and not my spine. Plus the pain I have does not feel muscular, it is much deeper, in my bones and nerves. I know my body. I went through a full term pregnancy, and gave birth to a 9 lb baby and had very minimal back pain during that time. It wasn't until 8 months later that, out of the blue, I had sciatic pain. I was crouched down working in my garden and when I stood up, I nearly threw up from the pain. I thought I just had a really bad trigger point or something, so I just dealt with it for months. In the months following the pain spread into my back, and now it is in my back, hips, groin, down both legs, and in my left foot.
I called the PT doctor and told him everything. He still doesn't want me back at PT even next week, and told me to lay low. The surgeon thinks I sit around and am lazy. I don't, I chase around my toddler, I still cook for my family, I still clean and do everyones laundry. I am also skinny. It is getting more and more difficult to do these things, and I will admit that in the last week I have been relying on a lot of help because walking has been a challenge. I have one Dr. telling me that for every hour I spend on the couch, that is another hour I have to spend in PT, and then another Dr. telling me to rest and not come to PT. He is giving me more pain meds and wants me to call him in another week. He said he wants me to give PT another try in a couple weeks, and if I flare up again, this program may be too intensive for me. Every thing I do there involves heavy weights and machines.
All I know is that I refuse to live like this for the rest of my life. There has got to be someone out there who can help me.

 
Old 02-12-2009, 06:42 PM   #4
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Re: My appointment today

hi meggs....

From what I've read about the spondy, that is probably not the cause of your pain but you have herniiated disc. AND....that for sure can cause pain. That is why I am not understanding. You had the discogram and that test is pretty accurate. They did do the CT scan after they injected you with the dye <during the discogram> right? I will tell you, I had a MRI and also had a discogram. The MRI I had, showed I had several issues but the discogram showed that my disc was in way worst condition than the MRI revealed. I think anyone with disc issues should have that test. As far as the sciatic pain,I had a slight nerve impingement and on the onset of my issues <that led me to a doc's care> my right leg was hurting some. After some of the things pain managenment did, I no longer had the pain in my leg. The MRI revealed a slight nerve impingement. I did, however, suffer GREAT seriously bad pain <in my right leg again> after my fusion with sciatic pain though, to the point of being re-admitted back into the hospital. So, I Know that pain all to well and mine was severe.

After reading about that cyst that you have <well, I wasnt sure what cyst you have but I found some sites on cyst in the lumbar area for you> I did read depending on where the cyst is in your spinal area, it sure can mimick sciatic pain. That nurse told you it was nothing but....makes me wonder. A cyst is a cyst not extra bony growth. I think extra bony growth would be more like a bone spur and your MRI said CYST. Sometimes doctors dismiss things when they look on a MRI and then when they do surgery, it is all a different story. So if you go to a new doc for a 3rd opinion, ask about the cyst again. I am not a doctor but I have read so much about back issues. And I've had back issues a longgg time before i had my surgery....

Muscle weakness would respond to massage. Before I went to a doc, I would get my husband to massage my lower back occasionally and, it did no good. I found that when he did, the pain i was having was deep pain. No massage could make it feel better. So, what you are saying about it being deep pain.....you are so right. It sounds like the pain you are having is disc pain....I feel so bad for you cause i know how bad it can get. Please know i am thinking about you. I hope this other doc at PT will at least provide medication to help you.....

LYNN

 
Old 02-12-2009, 07:27 PM   #5
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Re: My appointment today

Hi-

My sciatic pain started in only my left leg, but now I get it in both. It gets so bad sometimes that I feel like I want to cut my legs off. Those are the times when I want to go to the ER. My toes also go numb in my left leg.
It was after my discogram that the surgeon said "you will need a 2 level fusion" because of the results. So I just don't understand his change of opinion suddenly. There was one time last summer when my pain went away completely for a few days. I was at my OB for my annual exam, and told him about it. This was the first time I had told a Dr. He prescribed Naproxen for a week, and by the end of the week the pain was gone. It came back right away though, and with a vengence. Since then, injections, prednisone orally, or any other anti inflamatories have not even touched it. I even tried prednisone twice.
Yes I read that the cyst can cause sciatic symptoms. I don't like the nurse because she never talks to the Dr. about my questions, she just answers them herself. I feel like they think I have a psychiatric problem after he told me my leg pain is non existent. I was a really happy and energetic person before all of this.
When he told me he wouldn't give me meds anymore, he said he didn't care if other doctors did and he would put that in my chart, he just doesn't feel it is appropriate for someone with muscle weakness pain to take them. What is that supposed to mean!
Anyway, my husband is furious and mad he didn't go to the appointment with me. He wanted to call them today, but I said no. The more I think about it though, I think I want him to call tomorrow. I want him to ask why they think my pain is muscular all of a sudden when the discogram clearly showed that pain was coming from 2 discs.

 
Old 02-12-2009, 09:22 PM   #6
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Re: My appointment today

Hi Meggs,

So sorry to read what you are going through. I agree that you need to find another doc. I also have been told I need a fusion at the same levels as you. Right now I am putting myself through another round of physical therapy and trying some additional nerve blocks, but I am still able to work, and so am doing everything I can to avoid surgery.

My ns has left it entirely up to me as to if/when I have surgery. Once he confirmed that my discs are pressing on the sciatic, that was pretty much it. I just have to say the word and surgery will be scheduled. None of the jumping through hoops that you seem to be going through.

He did tell me that it was my CT scan, and not the MRI that gave the clearer picture of the disc compression. Both images showed herniated discs, but it was the CT scan that showed that the discs were pressing on the nerve. He then sent me for a guided nerve block to be certain.

Don't give up - sounds like you've just seen a couple of not so great docs.

 
Old 02-12-2009, 09:44 PM   #7
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Re: My appointment today

See if you can get a consultation with an orthopedic spine surgeon - one who will listen and do a full review of your past results, pain, etc.
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Old 02-12-2009, 10:51 PM   #8
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Re: My appointment today

Thanks guys. I am calling another place tomorrow to get an appointment. I will keep you posted!

 
Old 02-13-2009, 02:45 AM   #9
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Re: My appointment today

It is nearly 5 am and I have still not slept tonight. The pain is very severe tonight. It is in both of my legs. I really feel as though something is very very wrong and a new MRI would show some not so good changes.

I made a journal just now of my entire experience since this whole thing started. I am going to bring this with me to my appointment that I plan to make today and hopefully it will help me tell my story. I really hope I can find a doctor who will listen.

 
Old 02-13-2009, 06:42 AM   #10
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Re: My appointment today

I am so sorry to hear all of that, Megss. It is all so horrible! I really hope you find the right one who sees what you really need and is much more compassionate. Surgeons are so different in so many ways, and I'm sorry you've had two awful ones. I'll pray this next one will "be the one". Good luck and keep us posted! Tami

 
Old 02-13-2009, 08:20 AM   #11
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Re: My appointment today

Meggs....

I am so sorry you are having sleepless nights. That is no good for you! I think you made the right decision in seeking yet another doctor. Doctors all have different opinions. So, lets hope you have better luck with a new doctor.I think doctors do look at a persons age....why? is beyond me. I look back at myself and yearss ago in my early 20's I can remember having back issues. Me and my young family went to Disney World for a family vacation and I had to sit often inbetween walking the park because.....my back hurt me badly. I must have been like .....< i am thinking LOL I am now 47 so, it seems an enternity ago ha> 24-25 years of age. So, while I read your post and think about it, age certainly has nothing to do with it. I, like you, am very small. Weight for sure was not an issue for me. I just donot understand why both those docs dismissed you. Makes no sense if your MRI is showing herniated disc. Thats what my MRI also showed and I had not 1 problem with my doc telling me it was in my head < I think after suffering with my back as long as I did, I wouldve knocked his head off had he incinuated that ha> . I also have other issues with my back but the majority of my pain was discogenic pain. I will also add......while you donot think a pain management doc is a good idea, my pain doc was the best doc ever. After he < my pain mgt. doc, and he is also an anesthesiologist> did my discogram, he told me bluntly, you NEED a fusion. So, it was moreless another opinion right there. He saw the shape my disc were in when he did my discogram. So I felt so much better making the decision of doing the fusion. I trust him greatly! I still see my pain doc as he is managing my medication needs. Let me know what you find out as far as another doc appt. Good luck to you and take care of yourself. try to relax the best you can and try not to get over anxious about it. I feel you will find a doc to help you!!!!!

LYNN

 
Old 02-13-2009, 06:14 PM   #12
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Re: My appointment today

Okay. My husband called the doctor today furious. The PA called him back and we got some clarification. Apparently, the PT doc who sent me home and told me to see the surgeon did not contact my surgeon. The surgeon thought I was skipping out on PT because I just didn't want to do it. Major mis-communication. That's why he was harsh to me. They also told my husband why it is so important to strengthen my back. When I have the operation and they cut through the muscles, I walk away with 1/2 the muscle strength I had going in, so they do not want me to have much of a deficit at all before surgery. This makes perfect sense to me, but why weren't they clear with me from the beginning on this? And why would he be so rude as to say that most of my pain is coming from weak muscles! Probably to scare me back into PT. I would have finished PT anyway, I was just following the PT doc's orders. I wasn't being non-compliant as the surgeon obviously thought I was.
So they said they know I have several spinal issues and still plan on doing surgery once I finish PT, but I am still looking for a new doctor. I want to feel comfortable with my surgeon. They have no right to make me feel like the pain is in my head. That is enough to drive a person nuts.

 
Old 02-13-2009, 07:05 PM   #13
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Re: My appointment today

Hi Meggs.....

I wouldnot go back to that doc. He sounds very rude. I would hate to think i was going to have to see him through my recovery. And trust me.....you will be calling asking different questions to the PA so...if she is rude also and it makes you feel uncomfortable to call and ask a question regarding your recovery, I would think hard about this doc doing surgery on me....good luck!As you say, find a doc you feel comfortable with. This doc is very pushy with PT. I went to PT but my doc certainly didnot PUSH and CRAM PT down my throat. Do you realize how long it is going to take to get your muscles where that doc wants your muscles to be? I think good muscle tone is absolutely great and it DOES help BUT..........when you have a bad back, you lose a good bit of that. Therefore, PT is needed even more. And it will take a while to build that back. I went to PT about 2 months...and i just quit going. I joined a gym instead ha. My doc was ok with that. Maybe its the age difference, i dont know. But I for sure wouldnot go to a doc I cannot relate to and feel comfortable. He even told you he wouldnt prescribe medication to you. He told you your leg pain was non existant..... Well, good luck to you if you do go back to him. Maybe things will get better if you do? Keep in touch.

LYNN

LYNN

 
Old 02-13-2009, 09:52 PM   #14
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Re: My appointment today

Megss,

I'm so sorry to hear about your recent problems with this doctor. I also agree that you should seek out a new doctor that you are comfortable with. After you have surgery, you want a doctor to be there to listen to you and help you, and if you are already having these kinds of problems before surgery, your follow-up care would probably be problematic also.

Having a doctor you trust and can communicate freely with is very important and can make a world of difference in your outcome.

Best of luck to you!

 
Old 02-14-2009, 06:34 AM   #15
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Re: My appointment today

When a disc herniates the substance it release causes inflammation of the surrounding nerves. These nerves can stay irritated long after the disc has settled down. Even if the MRI shows everything to be ok it does not show inflammation of the nerves. Your back is filled with nerve endings even the outside of the discs themselves. So I find it terrible that your physician is discounting your pain. I believe that you should be seeking help from someone else. Get your doctor to refer you to a pain management physician. Sometimes they can help you.
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