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Frustrated hurting and don't know which way or what to do

ellineellin Posts: 188
edited 06/11/2012 - 8:46 AM in Back Surgery and Neck Surgery
I am so frustrated!!!! As many of you know for years I had been going for nerve burns injections PT massage therapy doing tens at home ice heat on it goes with pain meds. I went to see 3 nurosurgons who do backs and necks.

I was told by one to get a spinal cord stimulator. The other two surgons said that would have never worked. The 2 both said I need to have a 3level fusion in my L345 and a 3 level fusion for my neck. OK Im ready I think??? I am done with this PAIN!!!!!!! I have lost my life.

I went with this one nurosurgon and he told me their is one more thing to do for my back on and that was a rhizotomy which is where he makes about a 1/2inch incsion in each area and goes in with a scope and can see the nerves and he cuts the nerve.

I had the rhizotomy done to the L34 5 both sides and than the s1 I am in the same pain now if not worse.

I went for my follow up and he did not even know what he did he had to ask his MA what is she here for. I felt terrible. Than I find out talking with the MA that he did the one nerve again. I had 2 surgeries one time the L345 and secound time it was to be only the s1 but paper wk said L5 s1 I told the MA what is going on and she looked at me like I dont know what or why he did this again.

Well, Dr. comes in and I tell him of my pain I say well guess this did not work and Im going to than have the fusion. He than says to my disbelief NO I think the pain is muscle. I was PISSED!!!!!!!!! told me to do strecthing and massage therapy. I said is it possible the nerves giving me the problem were not cut and he says no.

I would think if the right nerves were cut than I should not have any pain. Am I right?????????? Oh my

Well, now I have been going for massage doing the exercise and taking my pain meds more than ever. I did tho have a fall and told him and he did not care. WHAT please can I do now?? I am so fustraded. I really cant take this pain and way of life. Please help


  • Ellin,

    Sorry to hear you are in so much pain and it continues to get worse. What was it about this surgeon that originally made you choose him over the other surgeons? I am thinking if he did the right levels on the surgery and it provided you with no relief and made it worse he is speculating that the nerve is not the source of the issue then. So therefore freeing it won't help your situation and you will still have the pain after surgery. However, you are the only one whom knows what the imaging says as to which nerves are trapped and which ones he actually did. The only thing that i think that might change that is if it is a stability issue going on. Typically when they see stability issues surgery becomes a no brainer.

    What is on the films that they actually want to do a three level lumbar fusion and then a three level cervical fusion. Both of which are huge surgeries and then to suggest them and move over to nerve burns doesn't sound right. I have heard of them doing nerve blocks to test the nerves but to burn them is looking for something more long term in the pain relief area. In your cervical spine they definitely have to worry about the spinal cord. So I am confused why a surgeon who felt you needed surgery, would hesitate and mess with the cord. Damage to the cord can't be undone. Jumping from nerve burns to three level fusions is huge steps.

    Have you already had emg studies done and what were the results of them? While they are not full proof maybe those could be of some assistance. I might have you mixed with someone else but didn't you have a very serious problem with the nerve burn and what happened and some meds?

    The one thing I do know about using surgeons is that although we sometimes may not like what they have us do, we are relying on their expertise to guide us through the injuries. So sometimes in the process it becomes frustrating, but they are actually making the plans and putting together the maps of which is going to work for each individual person.

    Hopefully you can find away to get some pain relief. If the therapy is causing you more pain, I would be sure they understand the pain is intensifying with the treatment and see if there is something else that can be done. So I would definitely call them and let them know this therapy is causing even more pain and see if they have another plan. If not ask them what is that you should be doing to function?
  • To hear that you are going through this!!!! There is just no way around it, pain is a big pain in the butt :(. I don't know what to say about your surgeon, as I am in the same boat but in a different way. I hope that the others here can give you some insight. >:D< >:D< >:D<
  • Tamtam thanks for the feedback.

    I had rf which is nerve burn done many times by a PM Dr. the rhizotomy is only done by a nuro. surgon. The RF is burning of the nerves and the PM Dr. cant see the nerves. The Rhizotomy is when the nerves are CUT. The PM Dr's do not have the knowledge of this nor equiment to do such a more invasive surgery.

    The rhizotomy was told to me when I went for my consult with the Nurosurgon. He told me he can't do the cervical due too a death reported. Not him but, he will not chance it. I first went for a nerve block even tho they never worked for me Ins. company makes me have this first. I went and had the block and it felt a bit better for maybe 30min to an hour. So, Dr. said the rhizotomy will work.

    He the Dr. told me that the if this does not work than I am going to have a 3 level fusion. I had my cervical fusion scheduled but, my back was hurting worse and I canceled that fusion to see if this rhizotomy would work due to more pain now in lower spine than neck.

    I chose this Dr. because of a pt I talked to that had a cervical fusion done by him. He is a nice Dr. but who cares about nice I just want a good surgon.

    My problem is that he told me that this rhizotomy was my last hope. Now its like he forgot. I would think if I needed it he would do it because he would make alot of money. SO, it makes me think of maybe its the muscle that is causing my pain now???

    I also think that he knows I would never have my fusion done at the surgical hospital due too my request and he does 99.9% of all his surgeries their because he is part owner. So, who knows?

    I have so much wrong with my cervical and lower spine. I have 3 herniated disc's in the neck 5 in the lower spine, spond, DDD, osteoarthritis at facet joints, annular tear,the L345 is flattening the ventral sac, and stenosis. my neck has about the same as the lower spine tho my neck mri also says i have osteophytic ridging and the buldge disc isabuts the ventral aspect of the cord but without mass effect upon it. also neural foraminal narrowing bilaterally, and canal stenosis with facet disease. Too much medical terms for me.

    I tried to have the EMG done and could not take the test, one of my fears in life is being zapped by any current. But, I did try and the Dr. knew of my fear and was so very kind but, after the first zap Dr. said I really do not feel that you will be able to finsih this due to much higher current is going to be used. I thanked her for her time. I left in tears because I tried to talk myself into having this done because I neeeded this for me and just could not get my mind realxed enough.

    As you can see I have been thru the ringer. I dont even believe that the Dr. knows where my pain is coming from. My worst nightmare would be have this fusion and still be in the pain Im in now. That would just be my luck.

    As of now I have all the cut marks from the rhizotomy. By the way the way the nurosurgon does this is he makes a cut at each level he is doing and than puts a scope inside your back that way he looks around and can see the nerves and than cut them. THe nerve burns they dont cut on you nor do they go inside your back with a scope. BIg differance.

    I am so lost with all this. I hurt so bad that only you people with back and neck problems can understand. It feels good to have someone that knows what you are talking about.

    Hope this cleared up and answered your questions, thx
  • Ellin,

    Well if he doesn't do surgeries at a hospital then sounds as though he is not the right surgeon for you to begin with. I myself prefer my surgeons own facilities. First off I have always had a private duty nurse. The rate of infection is so much lower. Not to mention sense that is all the surgery they are doing is spine surgeries, there is no doubt all the right equipment is right there to accommodate me and him. The nurses are trained specifically to handle spine patients. But that is just me.

    It sounds as though you might be correct that he is not sure as to which levels are causing the actual pain. Which it would not be smart to operate on someone not knowing what the pain generator is. It is to bad you couldn't get through the emg study. I have had multiples of them and they are not to bad at all/ It might have lots to do with the fact I have lots of numb spots so feeling the needle is no big deal really.

    You also need to understand that operating on the spine more is not always better. They are forever changing the way it will move by doing fusions so if he is not sure of the pain generator it would be smart to fuse something if it doesn't cause pain. You have to keep in mind that many people walk around with herniated and buldging disc and never even know it as they are not symptomatic.

    I know it is frustrating going through all the testing, but they need to be sure before they go and operate and you still have the same issues or have more issues, with doing the wrong surgery.

    While I know you may not understand all the medical terms that you have listed. I encourage you to put the terms in the search feature at the top and learn all you can about the spine and how it functions. It will also further help you understand you conditions.

    Also are you keeping a pain journal and sharing this information with him/her or your pm doctor? If not that would be a good place to start, so you can see yourself which is causing you the most pain.

    As far as the nerve block i think maybe he ruled out that is not a symptomatic level as far as pain if the relief was only a hour. Typically they will last several days at the very least if they blocked out a true offending nerve.

    I do have to agree it definitely sounds as if he hasn't found the source of your pain, if everything they are trying to do to stop the nerves from firing are not helping. Which tells me they need to go back to the drawing board. Also do you get copies of your films and the reports? If not maybe that will help you understand the levels and what not. You might also want to look at a dermatone map and see how the pain travels on the different nerves exiting the spine.

    I sure hope they can get you some relief as far as the pain. You are so correct that yes we all understand how frustrating it truly can be. Take care and hope you feel better.
  • I agree with what Tamtam said. All the fusion can do is lift the compression off of the nerves- but if he has cut the nerves, blocked the nerves, burned the nerves- done everything they can do and you still have pain, it seems logical to start thinking that maybe those nerves are not causing your pain.

    And if those nerves are not causing your pain, the surgery might not relieve your pain. And of course you wouldn't want to be one of those people who goes into surgery and comes out as bad or worse as she started!

    I believe the gold standard for relieving non-nerve pain is physical therapy, a lot less stressful and painful than surgery! So maybe finding out the pain isn't nerve pain would be good news?
  • So do you really think that my pain is not nerve pain??Could it be the their are multiple nerves and the ones that were cut were not the right ones?? If the right nerves were cut than I should not have any pain. So guess either the pain is not nerve or wrong nerves cut??? So where and why do I have so much pain I am telling you it is a 10 I cry all the time. I cant take it much longer. I have even thought of ending it all:-( I just dont have the guts plus I could not leave my parents along. THat has a big pull in it. I take my pain meds and if I take more I feel terrible. I dont like feeling high I just want to be a "normal" lady enjoying my years. Do you think that the pain can be coming from the disc that are herniated? I guess I can keep going on and on of trying to find the cause. It it not an easy job. Im tired of all the needles as well, just plain and tired of all this.
  • Trust me, I understand pain. I fractured my spine 2 years ago- that lump in my avatar is both my L1 and L2 vertebrae squished together. I am hoping to get that repaired sometime this year.

    I don't know whether the doctor is right. I do know that muscles and bones and things other than nerves and disks can hurt an awful lot.

    Have you had much physical therapy? Back before I turned by back into an abstract art exibit, I used to "throw my back out" quite regularly and have great luck with PT.
  • told me that a fusion WILL kick nerve pain off even if it wasn't a problem .just hang on in there it may take some time to settle down .you have had major surgery .you know how painful a paper cut is! and back surgery is about as big as it gets
  • Ellin,

    Pain in our spines can come from many different sources. But I think where your surgeon is coming from is the fact that doing the stuff with the nerves didn't change the pain at all. It was multiple levels they were discussing doing surgery on, so those levels then that had been done were not the pain generators. You can take anyone over the age of 25 do a MRI on them and stuff will show on the MRI, but yet the person has no symptoms of pain whatsoever. You need to get those notes and find out what levels they have done so far. All of those would show that those nerves at those levels are not the effected levels. I would assume they did the levels that would have corresponded with where you said the pain was the worst at.

    Another thing I caution you on is using the level of a 10 pain. A ten pain is the worst possible pain you have ever felt in your life and you would be in the hospital with that level of pain. You would care or less what they do to you to get rid of it. You wouldn't be within your limits to rationalize a treatment. If your using that number with your doctors, maybe causing a problem with them diagnosing you, as well. So I understand your in pain, but you need to look at the pain scale and find the true levels of pain your having so you can have a better discussion with your doctors over it.

    If I was in your shoes. I would begin documenting my pain through a journal and isolate the pain that is the worst for you. If you have lumbar issues and cervical issues they can't fix both at the same time anyway. So you need to journal which pain is having the most effect on your life. You need to decide if it is say your right arm that is just in so much pain or say your left leg that you can walk. Now if it is pain in your neck or just pain in your back and there is no radicular pain associated with it, might be another reason they won't do surgery. Also without the emg studies they can't confirm that you have active nerve damage going on. They should have been able to give you some valium to get you through a emg study, so that you didn't really care. To be honest with you I have multiple emg studies and they really aren't that big of a deal to me. I have driven myself for the appointments and was fine after them.

    I truly understand your frustrations with not being able to resolve the pain. What medications do they have you taking? How much therapy have you gone through on this round? What exact type of therapy are they doing?

    Also by getting your medical notes and understanding what levels they have tried fixing nerves on will help you to better communicate to your physical therapist and any other doctors that are treating you. This is when you need to beable to walk into any doctor and say I have had a nerve block at xyz level or a burn at xyz level and did this for me. It in turn gives anyone involved in your treatment knowledge about your individual medical situation. What I am trying to say is you need to know and understand the most what is happening and what they are trying and what helps and what doesn't help. Also be prepared to always discuss what helps the pain, wether it be laying down, ice, heat, holding a particular position. Those are also very helpful in helping the doctors isolate the pain generator.
  • I also agree with Tamtam regarding using 10 as a pain level. You are better off trying to break the scale down into something like this:


    (scroll down)

    and, as Tamtam says, keep a daily diary. Your pain can't be a 10 (worst possible pain) every minute of every day- by keeping an honest and accurate account of your pain levels, you can tell them when it is worse and when it is better.

    I use this scale. When I had 6 broken bones and was strapped to a back board for 2 hours in the emergency room, that was a 9 (pain so intense I could not tolerate it and was whimpering for pain meds). Now, my pain is generally in the 4-7 range depending. If it gets to 6-7 I call my doctor. 4 means it it is well controlled.

    Most people do not use the range well to help their doctor control their pain, but only use the top numbers to tell their doctor that they are hurting. It's better used as a tool :)

  • Yes I do tell the Dr. the number according to the pain chart and I never said a 10 most of the time it was a 7, I tho feel 10 is cant take it anymore wanting to end you life and I have been their.

    I had a bad day today. Went for my massage which Dr. says is good to do and I was in so much pain I could not even lay on the table. This is not normal. I love my massage lady and enjoy them so much. It really helps me. I forgot to take my pain meds. that is what happend.

    I feel this pain I have always delt with but, as of now I feel this differnt pain which I describe as nerve pain. Why I have no clue. I dont even know if their is such a thing. I never said this before. Its like an aching deep, bothersom pain that drives me crazy. and it is a deep pain.

    I left message for my Dr. I have to ask some questions. I also think that some PT might be helpful, I have not done that for years. Maybe water therpy might also be good. I told my Dr. I was going to start going to the gym and get in the pool and I remember him saying that is a good idea.

    My levels TAMTAM that were cut NOT BURNED were L3 L4 L5 both sides and the S1

    So, does this mean the the disc's that were herniated at them levels is not the cause of my pain??? If so than it could be the stenosis or ostroarthritis, or DDD???

    I am so tired. My day was crazy but, I took my meds and my pain level is a 4 now. Wish I could have a 1 that would be so very welcomed. Im sure for all of us

    My pain meds. that I am taking is oxycontin 20mg I also have diluid 4mg or 5 not sure they gave this script in the hospital and got it filled for 30 pills and have not taken any as of yet. I also have percocet do not know the mg's.

    Thank you so much for caring enough to write me, that really helps me a bunch. I am always the one who helps everone else and forgets about me.

    Plan for me is to have Dr. call me tomorrow and get some answers of why this pain level so high and to get a script for pt. I will continue to use my tens and stretch and use ice and heat. I did get one of them back to life machines and have not used it for months maybe that would be a good thing. thanks again to all of you blessed men and woman that have helped me. I wish only the best for each and every one of you.
  • Ellin,

    As i look at your meds, I see only pain killer meds. Have you ever tried anything along the line of muscle relaxers and nerve meds. Nerve meds can be things like lyrica, nuerotin, cymbalta and there are some other ones out there as well. Muscle relaxers some of them include flexerill, zanaflex, soma and many more. Sense your doctor said your issues were muscles I am shocked not to see a muscle relaxer in that list. A muscle relaxer may go along way in helping the spasms. I myself couldn't go a day without the muscle relaxers. Is the same doctor prescribing all of your meds. Without looking it up do you see a pain management doctor like physiatrist. They maybe able to coordinate better all the meds and physical therapy and some other treatment options. Just a thought. I do hope your having a better evening, night compared to the day it sounds like you had. Let us know what the doctor says, hopefully he will have some answers for you.
  • I can not imagine a doctor suggesting that much surgery for a patient who has not had all of the conservative treatments, including physical therapy. Very frightening. There is certainly much more you could be doing for your pain, but more to the point, it appears that this surgeon is the first one who has really though about whether surgery will actually repair your issue. Can you imagine going through surgery and still hurting afterward?

    Read through the forums a bit and you'll find many people in exactly that situation. It is not one you want to be in.
  • My meds are given by my primary Dr. But, it's funny well not too funny that this nurosurgon did not even metion muscle realxers. My primary Dr. did give me soma infact I just threw the whole bottle away. I took them for maybe a few days and that was it. Maybe I needed to take them longer to see if they really would work. I dont know if taking the soma or any other muscle relaxer would make me more? with taking the pain meds at the same time???

    Why would I need to take or even ask for any nerve medication when it seems that this pain is not nerve pain?? At least that is what I think I'm getting out of the posts. I had nerve burns which is called RF and than as of latley I had the Rhizotomy which is like I said when the nurosurgon makes cuts on each level of concern and goes inside your body with a scope to see the nerves and than Cuts not burns the nerve. Im just thinking that due too lots of branch nerves that maybe just maybe the nerve or nerves that are telling me of the pain were not cut. I called the Dr's office today to follow up on my VM I left yesterday. THat office staff stinks!!!!! THe lady was so rude telling me that I will get a call back from the office within 24 hours I told her I want the Dr. to call not the office staff. We will see.

    She than said oh I see you have a appt. with this other Dr. who is the Dr. who does the EMG's I said oh yes I need to cancel that appt. I dont know why My Dr. made that appt. for me. THeir is nothing she can help me with. She said oh yes she can perscribe meds for you. I said I dont need anymore meds. I get my pain meds from my primary further more it will cost me my $50copay to see her and for what. Well, she says she can get you on a path tho PT I said WHAT is that not my Dr's job?????????? I was so upset I hung up. Maybe I need to find another Dr.??

    I have done PT many years ago and it did nothing but made my back worse. I am tho wanting to try it again because of what my Dr. told me. He said he thinks the pain is muscle and told me to do some stretching exercises and continue with the massages. I dont know why he did not tell me to go to PT but I feel they might be able to show me some things to do that will help me. My copay is high $50 a visit. I have to pay that for any specialist or PT.

    I will keep you updated on what my Dr. says or not. Thanks again for all your support. I really do need it and admire you for doing this for me when you are not feeling great.
  • Ellin, please don't take this the wrong way; but I don't think your NS has explained things to you (most don't).You say "too much medical terms" but it will help you make better decisions if you use some of the sources here to learn more about the back. For example, when a fusion is done, they are talking about taking out most of a disc between two vertebrae which are called lumbar 3,lumbar 4 etc., so an "L345" is actually only two levels, L3-L4, and L4-L5; I think you may mean you need L3-L4, L4-L5, and L5-S1. NS are often lousy at explaining things to their patient in terms they can understand, and then you go seeking answers from an MA (which only has 6months training after high school or GED vs. your NS did 14 yrs. of post-high school training).Please don't take what your MA says as gospel. Somebody here recently posted a very good link about rhizotomies or RF's (it doesn't matter if they open you to "cut/burn" the nerves or go through the skin and do it with needles, it accomplishes the exact same thing!), but my doc said when you are concerned about one level's disc/facet joints causing pain, you actually have to fry two levels of nerves because of how they branch and "serve" a disc; if you've had rhizotomies done before you may actually need to do three levels for one disc/fact joint because of the branching.If come to think of rhizotomies and RF's interchangeably, since they do the same thing, but yes technically they are too different techniques - my guess is your NS is "old school" and that's what they did before they had all the RF equipment. It doesn't matter whether it was a cut of the nerves or a burn, its the same procedure on principle. sedation for that or did you do it without any IV twilight); I'm wondering if you really had a positive facet injection response. My doc did steroids + local anesthesia, and I'd get relief for a couple days. He feels only if you have at least 2, preferably 3 positive facet blocks should you have an RF or rhizotomy done, otherwise its a waste of time. I've had one of these work, and two not. It can take a few weeks to know if the rhizotomy worked, but just because you didn't get relief doesn't mean the NS didn't do the procedure correctly - it more likely means that those nerves aren't part of your "pain generators". Sometimes it can be a real challenge for the best of docs to figure out what the pain generator(s) is/are, and in low back pain there is often more than one. Some tests can help sort it out, such as myelograms, discograms, facet blocks, nerve root blocks, EMGs; sometimes the original problem that caused the pain has healed, but the pain pathway persists. (Your pain is still real). Many times the source(s) of pain is never determined; and that's why an understanding PM is so important.You mentioned your fear of EMG's and how you had to walk out; have you had anything else done? I am concerned if you had you trial facet block with IV twilight that may have been what gave you relief, not the actual injection (false positive).

    How far apart were your procedures? Nerves can regrow in as short as 4 months. Personally, I think pain-management trained anesthesiologists are much more skilled at RF's than even neurosurgeons, because they do so many more in their training and on a daily basis.

    I also wonder why you're not being treated with a muscle relaxer if your pain is muscular per the NS, and with a medicine that addresses nerve pain as above (neurontin, Lyrica, amitriptyline). IMHO you would definitely benefit under the care of a pain management doctor if one is accessible to you. Perhaps we are assuming you need them because alot of chronic low back pain patients here, myself included, on one pain med, one muscle relaxer, and one nerve pain med.

    Do not assume your herniated discs are the source of your pain - just because they show up on MRI doesn't mean they are your pain generator; the only way to determine that is by discogram. I read somewhere 50% of people are walking around with asymptomatic herniated discs.

    On your meds - its sad no one really told you how to take them. How often do you take oxycontin, and were you prescribed dilaudid and percocet at the same time? Dilaudid is very strong, but is usually only prescribed if percocet fails for break through pain control. If they gave you 30 pills of dilaudid, that means you should use up to one a day for when pain is severe, or "breaks through" your oxycontin. Ideally, if percocet works, that would be preferable to use for flares. You can take soma with narcotics, I highly recommend taking it at night the first time you take it though, some muscle relaxers are very sedating.

    I sense your frustration & misery, but I also sense fear. Are they recommending surgery or spinal cord stimulator because of younger age?
  • It is true in my experience that rhizotomy can't rule out nerve pain- I had a RFA both sides from L1-L5 and it certainly didn't get rid of the pain. I still had nerve pain.

    Now my situation is different, and I don't know how much different, because I have a fracture and my anatomy is far from normal.

    Does your primary care doctor have a high level of knowledge of pain medicine? I would think not if you were prepared for those surgeries and yet not on any kind of nerve medicine. Pain management is usually acommplished using a cocktail of different medications, as opiods alone are usually not enough.

    Also remember not all physical therapists are equal- if you get one that just hands you exercises and sends you home, that's not what I'm talking about. You want someone who does different modalities such as ultrasound, heat, and ice at different times during your session, and watches you carefully during your specifically designed routines. I have been to PTs that did 15 minute sessions (yes, for real) and half hour sessions (Kaiser) but the best PTs did 1-1.5 hour sessions. Good luck!
  • Well, Still no call from the Dr. or office. I cant stand the Dr's staff. I had to call the Dr's right hand person in the office before because I do not get a call back. Really bad.

    I went to a pt office and wanted to find out if they just set you up with exercises and go on to the next pt. I dont like that. This place was nice. The director came out gave me a tour and they have a pool as well. He told me they have all PT's and the sessions are one hour each. They take my ins. and told me to have Dr. fax order even tho I do not need a referral due to my PPO ins. so, I start next Fri. Yeah!!! He told me that the plan for me will have to be talked about with my therpist. He also said that if I'm unable to do land exercises than I will have to go in the pool. He stated also maybe i would have one sessin in the pool and one on land. I felt good when I left about this place. The therapist stays with you the whole hour. Wow that is nice.

    As far as the RF"s vs rhizotomy well they might do the same as far as killing the nerve but, the Rf's did not work for me I had many in my L back and my cervical spine. About 8months apart. My nuro surgon told me that when the PM does the RF he or she can not see the nerves and that when they go to burn the nerve if the nerve is not in the area it is supose to be the procudure is a wast. THe rhizotomy is a very visule procudure the Dr. can see the nerves.

    I had many facet injections, nerve blocks, epidural's I lost count any thing I did too much to get out of pain even if it was for 30 min.

    My Primary Dr. the one who gives me my pain meds. Is a great Dr. who is a medical Director for a hospice company so he deals lots with pt's in pain and does great in pain control. I tried lots of differnt pain meds and nothing worked so that is why he gave me oxycontin. He really wanted to give me morphine due to it lasting longer but, I get a bad headache from that. THe diluid is what the nurosurgon gave me and I think that was just for after the surgery. MY primary Dr. did not even know about any of my surgeries or upcoming ones until he got the nurosurgons record. I dont keep in good contact with my primary because I have a PPO and do not need any referrals all I do is get meds from him. He is aware of my pain issues with my back. Percoet I had to take too much and due to tyl. taking alot of that is no good.

    I thought that because THe nurosurgon cut the nerves and really saw the nerves and Im not out of pain than I do not have nerve pain. Am I not correct??? If i still have such severe pain and had the correct nerves cut than i should not have the pain I had before the surgery. My understand is that the nerves signal the brain that you have pain so if the nerves are cut than the nerves should not signal the brain of the pain. WOW confusing.

    My PM Dr. does not perscribe meds he wanted me to go to another PM Dr, for this but, I did not want to because I get my meds threw my Primary and he is more than aware of my back and neck isssues.

    My nurosurgon is not by all means old school. He is very good at what he does according to his pts and has been voted in top Dr. I tho do think that Dr's really vote for each other so that really does not make him a great Dr. He is booked solid tho. Very hard to see. I really would have like to change Dr's due to the office staff but, I feel he is good at what he does. I think lol or should I say I hope. Tho you are right about the muscle relaxer. He is the one who told me he thinks it is muscle pain so why would he Not give me any muscle relaxers???? My primary Dr. is the one who gave me the soma so that says something for him anyway.

    My PM Dr. did my injections with iv meds after I had the rf's 8months later when i went back to him he told me that the injections are a waste of time and the steriods are not good for me so he went stright for the RF again because I had a little releif. I had so many steriods in my system that my skin became so thin and I would bruise so bad and if I would hit my hand on something small I would tear the skin all off.

    Ayway still not call from the Darn Dr's office and now it 5pm so tomorrow I will call the top lady who has helped me before. THis is just terrible. I hate to start over with another nurosurgon.

    By the way you asked a question about the spinal cord stimulator. I was told by the nurosurgon at mayo that the stimulator would be a good thing. Than when going to the PM dept. their the Dr. says he did not think that would work. My nurosurgon that I have now told me when I told him of the Dr recommening a stimulator his words were " that would not of helped you glad you did not go threw all that for nothing" Im thinking no correct me if Im wrong isnt the stimulator for nerve pain??? And why would my nurosurgon say that would have been a waste because he told me about the rhizotomy?? Ny Dr. told me this like I said before I can try a rhizotomy for my lower back this is the LAST thing on the list before surgery. I have exusasted all consertive measures. Now that I had the rhizotomy and it did nothing he tells me he thinks it muscle pain?? That is really crazy to me. My head is just spinning. I get told one thing than the Dr. does a 180 on me.

    Well, I will keep u updated sorry so long. Have a great evening. Blessing to all of you and thanks again for all your support.
  • should of said he did a 360 on me lol :-)
  • So if you're really confused, a second opinion is always a good choice. I really don't know the answer for you. I haven't had the procedure you had, and am not a neurosurgeon :)

    Sounds like a fabulous PT! Yes, they will need a fax from your doctor. It isn't a referral, it's a prescription- I had the same confusion when I first started going. But PT is more like a medication than a doctor visit- you need to get sent by your doctor even if you don't need a referral for other things. The fax is just like a prescription though "PT 2 weeks 3x/week." or something like that.

    Good luck! I hope something somewhere makes you feel better!

  • My impression from my PM and my own research is that rhizotomies & RF only address nerves that serve (innervate) the facet joints, so basically if you had nerve damage from a 360 (its a well known risk, I have nerve damage of the S1 root from my fusion) that is not going to be treated by rhizotomy.
  • I've had numerous RFA's as well as a C2 Ganglionectomy. The RFA's were spot on, because the doc went in first with a probe while I was not sedated and he sent a current through the nerve so I could tell him whether or not it was the correct one. He then without moving the probe, injected a dye that he was able to use as a guide via fluoroscope for the RF probe.

    Our bodies are great at trying hard to protect, maintain and upgrade themselves. My body likes to "rewire" itself after a period of time. Most of the time these new pathways tend to have pain issues. After my first RFA, the pain escalated and would not respond to any blocks. The Ganglionectomy took care of it in the end, but the collateral damage from that surgery has been high.

    My SCS does a fantastic job of helping out. It doesn't care if my nerves follow a specific pathway or not. I can change the stimulation pattern, depth and area very easily to compensate for "confused" nerves.

    Good luck, I hope things work out for you.

  • Thx for all your replies.

    Still have not heard back from the Dr. or the office can you just believe this?????????

    I called yesterday and spoke with the Dr's right hand person who I talked with before about no return phone calls and she got my issues taken care of. I told her this is not good nor funny as she laughed when I said does this problem only happen to me or what??????? I was told by her that she will look into this at this point I was crying on the phone is pain. Do you think she could help with calling the Dr. to call me or something other than I have taken care of these problems for you in the past i will look into this. I HAVE HAD IT PERIOD!!!!!!!!!!! I will be going to see another Dr. THat is a pain itself put I cant take this ---p anymore. Again thx and have a great evening to all.,
  • My impression also was the same as Optimist- that the rhizotomy treated facet nerves. The comment of the neurologist was a new one on me, but I don't want to argue one way or another.

    But my PM never gave me the impression that even if he was right on the money with the RFA that he could cure all of my nerve pain, only that caused by facet pain, which I do have due to destabilization of my spine.

    You know, my new PM said just yesterday that if they had a fool proof way to get rid of pain, they would have put surgeons out of business long ago.
  • Ok Im slow here. What Im getting is that the rhizotomy only cures nerve pain for the facets and if my pain is from one of my other problems like the disc's this would not help me?? So, is their more nerves around the disc's that can be cut or that is a no no???

    I just can't believe that the surgery center said "if this rhizotomy works your fusion will be a great sucess" even the Dr. said that. Is that a crock or what??

    I must start over which really puts me back in my search for the answers I must get of where my pain is coming from. I dont know if now due to the rhizotomy not working and all other conservative treatment has failed if the fusion is the only option open? I dont want like you had said for me to have this done and it does not do nothing but give me more problems. I would loose it.

    I still have not heard back from the Dr's office I am so pissed about that. Guess they are too busy too take care of their pt's? or maybe they think I am getting too smart about this spine issue and do not like it or? Yes, it could be that the Dr. has not received the message as well. But, as I said to you I called and spoke to the Dr's right hand person and she always took care of the problem and this time no such luck.

    I am going to still call the Dr's office and keep bugging them on at least giving me the script for the PT because that I must try once again.

    Its all such a terrible thing to have this pain as you all are aware. I have been trying meditation tapes to get my mind off the pain. It is relaxing and helps as long as I take my mind off of the pain and into the relaxing mode.

    Thx will keep you updated. I thx you all so much for giving me information without you I would be in a much worse place. I wish you all only the best in your recovery. I dont know how are loved ones deal with us sometimes. At least mine I give him an A for hanging in with me. G-D Bless you all
  • I might have an idea of why you where told that - I heard it too. The theory is the rhizotomy treats facet pain, and facet pain comes from "microinstability" of the joint - therefore if rhizotomy works,your facets aren't happy because the previous fusion wasn't solid, and if you make the joint completely stable by fusion, you will get rid of the facet pain. But - and its a big but - 1) did the rhizotomy work and 2) is that the only pain generator? I think thats the million dollar question in low back pain - what's the pain generator(s) and what's the best way to treat them. I heard/read from multiple sources in the past the SCS are to treat leg pain only, and are pretty lousy at treating back pain, but I recently heard from one doc if you place the electrodes right (sounds like a guessing game though) you might have some luck treating the back pain too.Any one else here or have any luck with SCS treating their back pain?
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