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Information regarding Rhitozomy??

asmithaasmith Posts: 136
edited 06/11/2012 - 8:22 AM in Pain Medications
I have had such a bad month with my 'flare ups' that I really need something other than just pain meds. I think I remember a few of the members here that have had a Rhitozomy. If you have had one, can you tell me a little about the procedure? Are you still on Pain Meds on top of the procedure?

I remember I inquired about it to my PCP about a year and a half ago and he thought I was out of my mind. However, that was when my injury was fresh and perhaps he thought I would get better...not worse. I also remember, vaguely, him saying they dont even do that procedure in this area?? Is that possible? Its only done in certain states?
Now I am going to a top notch pain clinic and am thinking of bringing it up. I am hoping they offer it...as I am desperate. I spoke with my PM doctor briefly the other day over the phone and she increased my night time dose of meds..but I didnt want to bother her on the phone with the procedure. I dont see her again until the 1st of October. It will be a looooong September for me, thats for sure!!!!!

Thanks in advance for any insight.
Alina
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Comments

  • Before a Rhizotomy is ever performed, the doc will perform a nerve block in order to verify that the specific nerve is in fact the cause of your pain.

    It can allow a person to get away from pain meds for a few months to maybe a few years. It all depends on the individual. Nerves have an incredible ability to find a way to rewire themselves. Many people have Rhizotomies repeated over and over.

    Some docs are beginning to refuse to repeat this procedure due to the fact that the body can create an entirely new problem by rewiring itself.

    I know it seems like such a long time until your appointment, but if your pain gets too out of control, can't you just go to the ER?

    Best of luck to you,

    "C"
  • No. I wont go to ER...they wouldnt do anything about it worth my while or my $.
    My flare ups last 3-4 days and the last couple have been debilitating. It sucks. I just had my PM appt 4 weeks ago and told her I was starting to feel better with the medication regimen and the very next day I started to get these flare ups. I am used to getting them once or twice a month, but this month they have been non stop. I think it might be the weather.
    Thanks again for you post.

    Alina
  • I have had lots of these but I agree with C in that they will probably want to do some diagnostics before offering it to you. Yes, It is true that there are not alot of docs that offer this procedure for some reason. I have met two other members on this site that live in my state and ended up going to my doc to have this done. I had mine done by my PM who also has a state of the art surgery center behind his office. It is performed with special equipment and under live xray so maybe that is why not everyone offers it. It would certainly be worth talking to your doc about but I feel sure that they would want to make sure that the pain is coming from the facet area. Good luck and keep us posted.
  • Alina,

    Hi, I am scheduled for one in Oct. I had my 5th epidural/facet injection. I have to say, I am so excited about the option that Rhizotomy offers. I found great info on it on spineuniverse.com. I also posted under injections and got great post back from people who had them. The post is still there. I have an awesome PM doc in california and is really experienced. He is hoping it will delay or stop me from having a L4,L5,S1 fusion.

    Blessings!
  • I have a theory based on what I have been told by my PM docs and Neurologist. The human body is still so unknown in many areas. Most of us on Spine Health are a prime example of that. For quite a while rhizotomies/RF ablations have been a godsend to many people suffering chronic pain. I know personally that I love being able to get 3 months relief from pain before the nerves rewire themselves.

    It used to be that PM docs would offer to redo the rhizotomies over and over and over as long as a person needed it. That is slowly coming to a stop and many docs will only perform them once on a person.

    My Neurologist is great at explaining how nerves can rewire themselves just like a sci-fi movie where if you cut off the limb of a creeping vine, it grows back and grows back with more or with defective limbs.

    In 2005 I had the nerve at the C2 facet burned and in 3 months not only had it grown back, but it came back madder than #@&! I went from having 3 months of no pain to OMG what did I do!?!

    In 2007 they went in and removed the ganglion of the same nerve. The left side of my head became numb in a big area. Should be permanent for rest of my life. However about 6 months later somehow things began rewiring themself using other nerves and I am regaining sensation in portions of that area. Unfortunately those other nerves aren't friendly nerves and cause a lot of pain.

    In Feb 2008 they went in and did RF ablation in 5 areas trying to stop the pain from those rewiring things and the lesser occipital.

    Today those suckers are finding ways to rewire themselves and as a result a couple of the docs feel I'm developing what's known as CRPS (complex regional pain syndrome) in my head, neck and shoulder.

    So my theory based on my own experience, listening to the docs and some intensive research, is that repeated rhizotomies may be becoming a thing of the past.

    We really don't understand the nervous system as well as we thought. It's vastly more complex as is proven by many members of this board who according to their doc "shouldn't hurt" based on what their MRI's and exams show. They Do hurt though!

    Anyway, sorry to ramble on.

    "C"
  • ramble on C. I for one really appreciate the info. Maybe that is why my doc really steered me toward surgery last year. I still wonder why we went that route when I was getting such great relief from RFA. Thanks for sharing that info because my surgery failed and my doc says that I will probably still need RFA yearly or so. I am glad that you gave me something to question on my next visit.
  • not going to the ER. Here they just look at me as a drug seeker. Ive ended up there quite a few times because the pain became unbearable, and I didnt know what to do. I have an 8 month old little girl to take care of, and when Im in this much pain, Im completely useless and its depressing. I have had a rhizotomy before, and it worked for me for about a week. Turns out my nerve grew back instantly, instead of the normal 6 months to a year. Im thinking of having another one though just to get some relief, if even for a week. ~X( Good luck to you! I hope it works for you :)))
  • I just got the RF and the ramble is great info. Thanks and best of luck. Keep up the great research. I am so.....in wait of three nerves to die. vicky
  • actually scared me. Maybe it isnt the answer...but seriously - there has got to be something to cope with this pain. I am sic of taking the meds every day and worrying about supply and refills and how the pharmacy treats me. Its embarrassing and it sticks to you.
    There is not a surgeon in site that will see me and my medical bills will be the death of me.
    My pain is finally under better control in my 'home' life...meaning I can get around at home now without needing breaks every few minutes. I can actually start something and finish it without needing a rest. However...my outside life is still not where it should be. Last night I had to go buy a gift for a baby shower. An hour into it I was already limping and debating whether I should just head home and can the whole thing. That is NO WAY to live. I am too young for this and it is getting the best of me. I am sad, depressed, hopeless and am in need of better pain management - but I do not just want to increase my dosages. I want another avenue.
    I want my nerve GONE.
    During my flare ups I even dream about chopping my leg off and living happily ever after. Thats crazy. I miss my real dreams...my dreams of happiness and my adventures with my children.
    Sorry I went off on this...as you can tell...I am not in a good spot these last few days. The pain is getting the best of me.

    Take care all and have a pain free day.

    Alina
    :(
  • Not sure if this is the norm everywhere, but I am now in "the study" to determine if I am a candidate for a rhizotomy. My doc says there's two injections of pain meds injected to the specific nerves to make sure they're the problem. I had the first injection a week and a half ago and hadn't felt that good for a few years! After 4 days I was right back to where I started. Last Thursday I had my second injection and didn't get any relief until yesterday. This time of year I am miserable achy any time a cold front comes through and we are getting them every couple days -- I think that's why it took so long to feel better. I also think my back is tired of receiving injections in the same place. The injection site is still pretty sore! My wife also laughs at the "track marks" on my back. :))) I hope it doesn't wear off today! Follow up is in a week to discuss the results & plan the next course of action.
  • I appreciate you taking the time to give me your take on the procedure.
    My next apt with my PM isnt until October 1st. So I have a couple + weeks to think about what I will discuss in terms of our next approach.
    I am hoping the ER form of Norco will be available to begin - if not then I am open to discussing another injection. I have had 2 but in the hands of my prior PM doctors. I truly trust this clinic more than any other medical facility I have been to, so maybe they will have better luck in succeeding with the injection.
    I also plan on discussing the possibility of nerve ablation, if even available.
    Otherwise we are on the road to a spine stimulator. Scary.
    Thanks again.

    Alina
  • to hear how it goes for you, mine is scheduled for Oct 15th. Hope it does the trick for you!
  • I have my next PM appt on the 26th and will bring it up to her. I will definitely post her take on it.

    Thanks!!

    Alina
  • Alina,
    So how are things progressing for you? I had my rhizotomy done on schedule (and successfully per my doc) and am (im)patiently waiting for the work to do its thing. I had my follow up visit, they say I may have another week or two of discomfort from the procedure itself and 4-6 weeks before the nerves die and I'll know the final results. Good news, I've not had any muscle spasms which they say is fairly common. Otherwise things are kinda status quo for now. I washed dishes for about 10 minutes yesterday and could hardly stand when I was through. My wife knew I was hurting and asked how I'm holding up... she knows I don't normally complain so she has to ask. That and she keeps me from doing too much because I will sometimes push myself further than I should.

    Turns out my second injection wore off before the sedative did. When I told the doc it didn't work well he was pleased as that's what he expected to hear. He told me I can fully expect to have long term relief like what my first injection gave me.

    Anyways, hope you are able to see progress after meeting with your PM
    Jay
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