Question about other people s effective treatments

%d comments
  • If your past the growing stage I have been told a brace will not work.

  • I'm 30, so definitely past the growing stage... But that would make sense. I'll look into that, with that thought in mind. Thanks!

  • Can I ask what RF ablation is??

  • Radio Frequency Ablation- they burn off the ends of the nerves around the facet joints of the spine so that they stop firing pain signals to the brain... It typically lasts between 6 months to a year, when the nerves grow back.

    It's considered minimally invasive, as it is an out-patient procedure that is done giving the patient a sedative, but no anesthesia.

    In order to ensure success (and that it is the best treatment), they do 2 tests. The first is done with injections of a drug similar to lidocaine into the facet joint. If you receive 50% or more pain relief, you get the second test. The second is done with an injection of a stronger medication. (The success rate of RF is significantly higher if you "pass" the tests... Most insurances require them.)

  • How have you found it so far??

  • It's also called a Medial Branch Block

  • Xxxxxxx Yzzzzzz - the test injections only last about 4 hours... The first test I had to stay for an hour... It was painful, but I did get the 50% relief they're looking for... I'm going in for test 2 in a few days.

    The bad part is that because they inject into the affected area, so it irritates things and I got a pain flare... Which is probably why test 2 has to wait until at least 2 weeks.

    This next time, I believe they're looking for a higher level of relief (but it's a stronger med, according to the nurse)... But I have to be there for 3 hours for monitoring and checking on pain levels/relief.

    It's a bit scary... But hopeful that it'll work.

  • Thank you Cole may I ask who offered it to you? Orthopaedics or pain management ?

  • Xxxxxxx Yzzzzzz - I'm at a pain management clinic. I have been on pain meds (long acting, short acting, non-narcotic, muscle relaxers) since November... And still haven't been able to work beyond 3 days of 4 hours shifts, where I'm incapacitated for the rest of the day. This last additional flare has put me out for over a month.

  • I just changed pain clinics in the last 2 months, as my last one was a nightmare (refused to change meds, refused to do any procedures, blamed me for everything)... My new one, my wife actually got into and were the first to take her chronic pain seriously... They also have other patients with Scheuermann's and a PT who has a specific course knowing the limitations (no more scolding for posture!)

  • I just did the first ones today. T-10 to T-12 on both sides. Very painful while in procedure for me, as well as after the stuff wore off. It did give the relief we were looking for, I'm just hoping the RFA doesn't hurt like this did, or worse.

  • Yeah, I agree... The test was horrendous while doing it. I'm doing L-3 to L-5... I only get to do one side at a time because my insurance will only cover it that way (thankfully my clinic knows the ins and outs of all different insurances' rules)

  • My insurance would only cover mine if I felt an 80% decrease in pain, but allowed them to go bilateral. So luckily it worked.

  • Xxxxxxx Yzzzzzz - No kidding, mine only required 50%... I don't know what they expect for the 2nd, but I'm told it's a stronger pain med... My left foot went numb for a good hour (the nurse reassured me it was normal), so that was fun... Dealing with the tail end of a flare from the irritation of the needles there, though. So be extra kind to yourself for a week.

  • I know there's a sedative I get for the actual RF... So I'm hoping the pain will be ignorable from the calmness.

  • Working near the motor nerves will definitely make you numb/tingly. I've been dealing with Foraminal stenosis in the L-5 S-1 area as well. So I deal with the numb/tingling 24/7. Just the pain at the sites in the thoracic is where my muscles are used to hold myself up and it's unbearable to sit up and walk. Lucky for me, the old lady doesn't have a license and we have 3 little ones that go to different schools so I've got to take the heat until she can get it.

  • Mine is lower lumbar, S.I., left hip... I get tingling in my legs often and some numbness. But my insurance won't cover around S.I., so I'll see if RF give enough relief. Otherwise, I'll see what I can do for it.

    Pain goes in stages, starting in L4, L5 & SI, then goes out to muscles flanking (guarding), every joint down my legs (including toes) and up my spine... Now a lot of pressure in my neck, with severe tension headaches.

  • My wife is the primary driver, which is helpful, given the number of meds I'm on... Plus needing one post workup.... Most exciting thing that happened was getting a disability pass for the car, so I can actually go places without getting tired and in pain in the parking lot.

  • Awesome. Well hope things improve for you :)

  • That must be a pain with insurance that is picky with what they deal with. Especially when it comes to areas of the body that are crucial to walking.

    I noticed to mentioning a brace earlier in your post as well. The Milwaukee brace isn't the only brace made. If you go a little into the posts archives, there's a guy in here that got a special brace specifically for pain after growing stages, he said it seemed to be helping. I can't remember what it was called, but it didn't look like something that would be embarrassing to wear. It actually looked pretty cool. Might be something to look into if you could figure out what it's called.

  • Xxxxxxx Yzzzzzz - I wouldn't even mind a brace the world could see for miles... My hip is in so much pain that I've started using a cane several months back. Walking is terrible... And my job requires me to be on my feet the whole time (my boss lets me take a 5 min break to sit every hour and I can sit in between if I need to... Very thankful for him)... I love my job, so I'm just trying to get back to it desperately...

    We're also in the middle of the adoption process (waiting for a match.. Doing foster-to-adopt), but I got hit a second major episode right after we got licensed (thought it was just acute... No idea it was a chronic condition before, let alone this diagnosis... So I really want to be able to function for our future kid...

  • And yes, the insurance thing is a pain... Literally, since that means doing the work up and procedure twice... Just thankful that my clinic literally has binders filled with insurance requirements for everything to know how to work it (including what they have to put for symptoms to get a med prescribed, even if that med has other markers).

  • I've gone through some of the same stuff with my insurance when I was employed. I got approval for disability and instantly got approved for state medical insurance. The only thing that stinks, is they limit the amount of meds that get prescribed each month.

    I hope things go well for you to be able to raise a child. We've got 3, and I feel bad because of how much pain I've been in, that I can't do much with the kids, especially since I'm always driving and getting them ready for school. It takes a lot out of me. The RFA is the last hope I have left for less pain, other wise all that's left is the dreaded surgery. You are the only other person that has mentioned this procedure being an option beside myself. I don't have much knowledge as far as reviews have gone, whether or not it works well. It seems we will both find out around the same time.

  • This site is for support, comfort, and a place where we can all feel comfortable with ourselves since many of the doctors we've seen probably don't believe the pain we have been experiencing. This is not a place to judge, diagnose, nor make hurtful or blanket statements. Scheuermann's Disease is known as the "invisible disease" for a reason. The pain it can cause is very visible to the patient, yet many physicians fail to see that even the slightest curve can set off a whole set of secondary issues, such as early onset of degenerative disc disease, spinal stenosis, bone spurs, arthritis, and chronic pain. Everyone's case is different and should be treated as such, with respect. This site was designed for those of us with the disease to vent, and talk to others experiencing the same, or similar, issues. Please treat each other with respect.

  • Yes I second dougs comment above and Tyron I would perhaps think about wording before you post about people looking "normal" because lots of people do, what I'm respectfully trying to say is please consider people's feelings before you post.

  • Xxxxxxx Yzzzzzz - Guess we're in this together. Meds aren't doing it. I want to avoid any surgery... I'm currently on my company's disability insurance, and still getting my healthcare through them... My direct manager is awesome and patient, so he's holding my spot 'til I can get through this and then we'll see from there. If it's still not possible for me to get up to full-time, there's a point where I have to apply for state/federal disability... I'm hoping to head it off with RF.

    I'm also trying to get through this for my future kid so that they can ask me to bring them to the park, play catch, teach them to skate, etc... I want to be the best dad possible and not have pain so in my way (I'll live with level 3 pain if I must)... So, I feel for you. I can only imagine how rough this is on you.

    But I feel like I'm running against the clock with work and the adoption...

    Test #2 is tomorrow, so I'll let you know how it goes.... We're going to get through this together.

  • So my comments were disrespectful, if you second his comment?

  • Your comment sounded disrespectful hence why I asked you to consider your wording before posting especially if no offence was ment in your original comment.

  • Please do let me know. Good luck for you. You can at least say you are trying and want to try. Hopefully it goes well and you can move forward.

  • Tyron Dingle, I know you will probably fight me on this as you deleted the comments, but perhaps searching through my husband's profile and then my own and then "diagnosing"us as "hypochondriacs" was a tad disrespectful.

  • No point in being in this group if people are so sensitive to the way you word things and not focusing on the point or question you asking. ( trying to help with your own experience's) that's not a supportive group. Shay Koyama I delete the comment so I can stop seeing you comment on how iv miss worded a sentence.

  • Tyron Dingle- I in no way want to misjudge someone for miswording a sentence. That is not my intent. Please, in all honesty, explain to me why you searched my profile and called me a hypochondriac.

  • It's not about being sensitive Tyron, this is one place we shouldn't have to worry about feeling sensitive considering the daily shit we all have to contend with, this is a safe place for everyone to talk and help but your wording clearly offended and instead of saying oh poop I've made a mistake that's come across wrong or whatever you've got defensive and now it feels like your trying to pick arguments.

  • Xxxxxxx Yzzzzzz - No matter my outcome, I hope you can get pain-free enough to be able to do more. You deserve time with your kids... I'm rooting for you so you can have that. Getting myself dressed can be exhausting in and of itself, ignoring 3 others and then driving them. No doubt you're trying as hard as I am (who would electively go through RFA??)...

    P.S. I knew plenty of kids growing up with parents with chronic pain/illness... Not one of them resented their parents. All of them wanted their parents to get better... Not just to be with them, but because they wanted their parents to be happy.

  • Wording wasn't the issue... Whether or not you want to call me "sensitive" (usually what people say when they've attacked someone and don't want the consequences of their actions)...

    First you went through my pictures and *told* me that I didn't look like I have SK. Then when I said it was not severe and visible and I asked why you felt the need to go through my pictures, you asked why I was being defensive.... Then you went through my wife's profile, dragged her into it and *told* us both that you had "diagnosed us. no dr but I can see" that neither of us had a disability (don't know what you diagnosed my wife for, as you don't know what she has). Then you *told* us that we were "hypochondriacs".... You *told* me not to post here with my story since you "diagnosed" as not having SK... When you deleted all of your posts (in the name of not seeing my wife's, though her responses remained), you finally asked why the pain (since you couldn't see it in my pictures).... That's a lot of telling, not asking.

    Rather than apologize, you put me up as "sensitive" and claim that we pulled away from the support group and moved away from the point? You not only put judgements on myself, but my wife, who had not even commented before you dragged her in. My OP was looking for support, you were the one that dragged this away. It's not your words so much as your actions.

  • Ohhhhhhhh see I can't see all of that, my guess is comments were deleted before I saw it all I could see was one comment x

  • Xxxxxxx Yzzzzzz - yes, he was quick to delete a whole thread of attacks that happened (literally made them within minutes... I put my phone down to make coffee and came back to all of that)... Doug's list of what was not okay were responses to what Tyron did.... Still, your words remain true. Thank you (I hate bringing in admins, but looking through my pictures before posting to say he didn't see SK, followed by going through my wife's in order to judge her as well was frightening and invasive... Followed by the rapid attacks and his spiraling in the conversation... It was getting out of hand.)

    Though, if it was a matter of my "sensitivity" and his "just asking a question" (without understanding what he said wrong?) he knows on some level that he did wrong by deleting first his posts in between, then the whole thread.

  • No wonder he only replied to my comment and not dougs x

  • I did give a chance to find a way to make my being a hypochondriac a nice statement though.

  • Xxxxxxx Yzzzzzz! I hope you have a low pain/pain-free day (may your spoons be plentiful!)

  • I know I've not been about much these last few months but I do try to help when members are in need, I'm been growing a little blessing that for 10 years I was told I'd never be able to have, this little Miracle comes to me just a few months after my beautiful nan went to heaven so I've been focusing so hard on keeping calm and focusing on keeping my health relatively stable to keep this little one safe that I've neglected the group a little, but I am always here if anyone needs me x

  • Xxxxxxx Yzzzzzz I totally understand how important that is. Congratulations luv! Your little bundle of blessings is so much more important than ANYTHING else. Any soul worth looking twice at will understand that. Now go take care of more important things and stop wasting your time were it's not worth wasting. All his eggs are double yolked. There's no getting through that.

  • Xxxxxxx Yzzzzzz - "Put your oxygen mask on yourself before assisting others." Such a blessing in tough times... Don't stress out over this. It's clearly his issues (afterall, who goes into other people's pictures to make judgements on their condition before posting??), that I will fail to ever understand and I'll leave it at that.

    You seem very kind... Know that this is a community I need now and you've clearly been here to help it grow to what it is. Whether your presence is here or not, it's here and can be helpful.

  • Thank you for sorting these people out. I really appreciate it. They just trouble makers

  • Thank you both, sounds like you have it covered here but if you do need us to intervene just shout. I know how blessed I am to have this little Miracle coming and each and every day I spare a thought for others who have not or may not be able to experience this, and to cope when you have other conditions too makes me hate it when people judge you when they don't know you, I have several health conditions that people don't see and the judgements are unreal so unhelpful people like this really piss me off!!

  • OK.....

  • Tyron has gone I've removed him, and blocked him, he pissed me off I warned him and I done it respectfully even tho he didn't deserve my respect after treating you two the way he did. I can only apologise you had to put up with him in the first place. X

  • I'm really sorry that it needed to come to that. I feel quite badly about it since we are new and it seems he had been here for awhile. I don't ever want to keep people away from the ability to find support. I don't understand what made us a target for him.

  • I actually didn't notice until now that he had messaged me a few hours ago as well.

  • Xxxxxxx Yzzzzzz - So sorry you had to deal with this... Thank you for your kindness. He obviously has issues. No excuse for his treatment of us, you or anyone else.

    Not one to rock the boat... Subsequently, if he targeted us for no reason, didn't want his issues to come out on other people who are not in the mental space to deal with the likes of him... You said it-- we're all dealing with enough shit. "Sensitive" or not.

    You should probably go give yourself a treat (chocolate, bath, pajamas and a movie... Whatever gives you rest).

  • Had workup #2 this morning (fell asleep after my 3 hours... Did that last time... I think the trauma of it wears out my body).... But I did achieve 100% pain-free for several hours and only dipped to about mid 80% by the end. The other areas that I get pain (hips, legs, muscles flanking my spine) were dulled despite lack of pain meds... Took some meds after my time, right before my nap and woke up pain-free.... Which feels odd for a change.

    Anyway, I should be good to go for my left half and confident that my work up for my right will be equally as successful.

    I did find some people in "spoonie" groups that say the procedure is equally painful, but worth it. Sounds like if you get just past that 80%, the second time you do it is more successful. They said the procedure make take right away or a few days, but completely worth it.

    The second test was just as painful... I swear it was a bit more, or my muscles were more tense which made it that way... Definitely felt meds going in like a dull burning pressure (not half as bad as the needles)... But they were more effective (possibly got more pinpoint, as my foot did not go numb this time). They did have trouble finding my L5 due to sacrilization of my S.I., but unless your T's managed to fuse, that shouldn't be a problem.

    Anyway, I wish you just as much luck as I. Let me know how yours goes!

  • Thanks for the update Cole. On the first one the meds were way more painful than the numbing needle was. I may just ask for something to help me out in my IV before they start. You have to ask them here otherwise they just go to town on you without anything. Unfortunately, I'm out of everything except for my muscle relaxers, which don't do any justice with facet joint pain. When do you get to do the RFA?

  • Xxxxxxx Yzzzzzz - They do a topical, then one needle just past the skin, then they do the needle going into the facet, which they then inserted the meds into when they got them in place (each step was done on each facet before moving to the next).

    They may not want to do IV meds so you can feel the before, unmedicated pain and then the after facet meds only. (I was specifically instructed not to take any pain meds the morning of... And I even woke up a little earlier than usual (some mornings the pain is a slow onset, so that I would be at peak pain so I could completely tell the difference).

    I haven't gotten my RFA set up yet. They have to submit my results to insurance and I may need to talk to my doctor beforehand (which I have an appt next week set up for my meds anyway).

    I just stopped a muscle relaxer, but realized that it wasn't working on me. I know we're going to talk about a replacement at my next appt.... Do you at least have an appt for meds soon?? I'm doing all of my stuff through a pain clinic, so they plan visits just before meds run out. But I can't ever do a clinic visit on procedure day, even if it's a test.

    Man, I really hope you get some relief!! At least get someone to carry you over until RFA...

  • That's good to hear. Wasn't wanting something for pain in the IV, just something to put me out of it so I don't concentrate on the needles. I have some refills for my pain meds, but insurance won't approve enough to last the month in the amount I need to take per day. I'm supposed to take 2 50mg 4x a day, and insurance only covers 1-2 3x a day, so when I really need to take the full amount, I end up running out sooner, and have to wait until the next fill date. Mine is also through pain clinic. But I'm guessing they work a bit different here. She will allow 3 refills, but still have appts. In between to make sure I'm still doing okay. She is also my surgeon, so if none of this works, I don't need a new referral to someone else, she'll just put in a request for the surgery to my insurance. Hopefully you don't have to wait too long until the next procedure, although forgetting how much better it felt might be a good thing when it happens.

  • Xxxxxxx Yzzzzzz - The amount per day would be an insurance thing.. But also state-by-state on what they allow... As far as refills, each pain clinic just has their own rules on what they'll do. I also am on a steady dose of long-acting (which doesn't cover it, but does reduce from needing 2x every 4 hours to just 1 every 4) Did she try a prior authorization? I hope you won't need that and RFA works...

    As far as distracting yourself-- I use a couple of tricks. First, take slow, deep breaths (like you're meditating). It helps keeps oxygen flowing in without hyper- or hypo-ventilation. And keep focusing on that... The other thing is getting like a stress ball or something you can squeeze in your hands... I did that when I would get tattoos in sensitive spots, as relaxing the area affected reduces pain (and makes it easier for the artist to work), so I'll focus on tensing the "opposite" half of my body... The more I get my mind to focus on different, unaffected areas, the easier it is... Doesn't hurt to try.