My appointment today

M

Megss

New member
Thank everyone.

I feel like something is wrong, something more since my MRI. The pain I am in right now is completely out of control and un reasonable. Both of my legs are on fire. Had it not been for my sleeping baby last night, I would have gone to the ER. I don't know what to do. But I am calling new doctor on Monday. She was referred to me by a friend, and knows I am calling.

I will keep you posted!
 
Hi Megss,
I am so glad you are going to get the help and opinion of a third doctor. Those other guys didn't learn in medical school that pain is the "fifth vital sign" and is WHATEVER the patient says it is. Who are they to say your pain is not real and is only "muscular"? They both need to take a good pain management class!

I had that burning down my right leg after my initial disc herniations and it is not "muscular" in origin, as anyone who has ever experienced this type of pain will know the difference. I had pain medicine that didn't even touch the burning sensation, just took the edge off enough where I could sleep. I hope you get the help you need from this new physician. I can't remeraber how long it has been since your last MRI but if your symptoms have changed it seems reasonable to me that this new physician should order a repeat. My neurosurgeon did not hesitate to repeat mine after a couple of months when my symptoms changed prior to surgery. If you have a small child in the house then just the care you provide on a daily basis could cause physical changes in your back.

Best wishes and keep us posted. Hope you have a decent weekend.
Jan.
 
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 meRAB. 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.
 
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 remeraber 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 neeRAB. 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
 
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 - sounRAB like you've just seen a couple of not so great docs.
 
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 recorRAB. When was your last MRI done>? I have had a cervical and lurabar 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 lurabar 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
 
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.
 
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.
 
Hi Jan. It has been 4 months since my MRI.

So I went to the Er tonight. They said they could not do an MRI in the ER, but he examined me and said I did not need surgery tonight. They gave me a shot of something strong, a valium, and ibuprofen, and my pain went from a 10 to a 2. He sent me home with scripts for hydromorphone and diazepam. I am not sure what those are. He also gave me a neuro surgeon to call. He was a really nice doctor, so I don't feel like it was a total waste going. At least tonight I will sleep like a baby, I hope. My daughter is at my parents all night so I don't need to worry about taking care of her tonight.

The other thing that has started happening lately is that my left knee keeps buckling and I almost fall to the floor. Is that from my back problems?
 
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 Deceraber 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 meRAB 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.
 
Hi Meggs.....

I wouldnot go back to that doc. He sounRAB 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
 
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 kinRAB 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!
 
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.
 
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.
 
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 nurab 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 meRAB 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.
 
Hi Meggs,
So glad you went to an ER with a compassionate physician on staff. SounRAB like he got your pain relieved and with the medications he gave you, I should think that you will be able to control the pain until you can get in to see the neurosurgeon. Like Lynn said, those are strong medications and should provide you with relief.

Encouraging too that he gave a referral to someone. He sounRAB like he paid attention in Pain Management 101! I feel comfortable and hopeful that this referral will get you to someone who can provide you the care you deserve.

I think, like Lynn, that your knee buckling could be weakness from your back. That is what happended to me after I recovered from the initial disc herniations. My really bad pain turned to weakness and nurabness in both legs and I could only walk for about five minutes before my legs felt like they were going to give out. I never actually went down, but only because I would sit down when I felt I needed to. You can guess I wasn't getting a whole lot done!! Of course, I don't have a small child to chase around after either. You did the right thing by going in there last night. Best wishes and get on that phone Monday morning first thing and make that appointment.
Might be a good idea to take an advocate with you in to see the physician at the appointment also. Don't know what your families schedules are like but sometimes that helps. Especially when you have been through as much as you have and are still in pain. Take someone who is familiar with your care up to this point. Just a thought.
Jan.
 
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
 
Megss,
I'm so sorry that you are having such a hard time. Chronic pain sucks and people (even docs) who haven't experienced it have no clue. I'm glad you got some good drugs for now anyway. You may want to see if this new doc will prescribe a nerve medication (Lyrica or neurontin). I bet it would help you. I take neurontin and it doesn't eliminate my pain, but it does help. Actually, I was fused 6 weeks ago and I think that eventually I'll be able to go off the neurontin, but I've been taking it for years. Also, see if you can get some sleep medication. You need to get some rest at night...I feel for you. How old is your daughter? I have two boys and it's so hard sometimes.

Do you know if this new doc is a neruosurgeon or an orthopedic spine specialist? I've seen both and have experienced good and bad in both disciplines. The surgeon who did my fusion is an orthopedic and he is wonderful. It sounRAB like you can't do much worse than your current doc.

Take care of yourself and I hope you get relief soon!

Lisa
 
Hey everone-

Alpine, the new doc is a neurosurgeon. She is a woman too so maybe we will get along better!:)

I do plan on always taking either my husband or my mother to all my appointments from now on. It is hard to say everything you want to when you are upset and in pain.

My pain hasn't gotten above a 6 today, so I feel a lot better. I am hesitant to take the new medication because of how strong they are, but I am glad I have them just in case. It's actually funny, I was prescribed 15 of each, and the pharmacist accidentally gave me 150 of the pain killer. Oops. I called the pharmacy and unfortunately I am afraid I got someone fired, but that is really really dangerous and a stupid mistake. I am bringing the extra 135 pills back tonight when my husband gets home, and they are refunding my full co-pay as a thank you for being so honest. Can you believe that???!!!
 
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