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I try

NumbskullNNumbskull Posts: 1,526
edited 06/11/2012 - 8:57 AM in Chronic Pain
Okay, I try, I really try, not to complain and to focus on the positive things in life, I really do. I mean, my life is pretty good right now, I just moved into a great little house that I absolutely love, I'm "retiring" (albeit because I have to for medical reasons about 20 years before I planned on it), I'm going away on a trip next week with my mom to celebrate my "retirement" and to thank her for all the help she's given me.

But it's days like the past few that make it hard to keep positive. The headaches that have relentlessly plagued me for more than 3 years now, have been so much worse lately. Today, I actually had to get my mom to help me get dressed, which happens more than I care to. My pt called yesterday and said until the surgeon gives more info, she's releasing me, and when I asked why, her answer was "Well, this isn't the end all and be all". So I just said yes, sure, thanks and hung up, while thinking that's easy for her to say, as she has full use of her arm that doesn't burn and spasm with pain 24 hours a day.

Then to find out that back in July, the hospital had scheduled me for an EMG for the beginning of Oct and neglected to inform me of it, so I missed the appointment and I now have to wait until December, this after me calling them several times leaving messages asking about it. The ortho that I'm seeing for a 2nd opinion has everything he needs to see me, so I don't know what his hold up is with making an appointment, but I'm not even sure I want to see him, as the last time I saw him he said he thinks the reason for the paralysis was the way I was positioned on the table... Yeah, not too confident in any opinion he may give anyways. I do have a referral in for another ns here in my own city, but historically that can take up to a year, I think now it's down to about 6 or 7 months, so I should be getting in sometime around next March.

My arm isn't getting any better, I haven't had any improvement in months, the spasms in my neck and shoulders are just getting worse which are causing my headaches to get worse. At least the SI RFA took out a little bit of my lower back pain. I'm just tired, but I can't sleep because my head is so sensitive the pressure hurts to lay down. I did get an e-mail from the spa saying they are waiting for us for some serious pampering, lol. That made my day, but I can't help but feel a little apprehensive about the travelling part of it. Seriously need to get some of those transporter thingys from Star Trek...

What do I do about the pt? Do I complain to my doctor?
APROUD CANADIANveteranButNOTa doctor, my thoughts are my own


  • j.howiejj.howie Brentwood, Ca., USAPosts: 1,730
    Is that the same as pain management? If so I would get all of my records and ask for a referral to another one! That just dosen't sound right coming from a professional.
    Good luck,Jim
    Click my name to see my Medical history
    You get what you get, not what you deserve......I stole that from Susan (rip)
    Today is yours to embrace........ for tomorrow, who knows what might be starring you in the face!
  • It was my physio therapist Jim.
    APROUD CANADIANveteranButNOTa doctor, my thoughts are my own
  • HI kelly my friend,
    So with all you issues can't the trip wait, I know you so need it and so does your lovely mom after helping so much.
    But with your headaches, won't be good to get on the plane.

    You should fly to chgo, I have few nice docs, one thing you can get alot of here to opinions.
    It so easy for that pt to say that none of these ppl deal with the loss of anything.
    I'm here today so let catch up and chat
    neck,bone spurs pain started 04, back issues and fusion l4,l5 06~hardware removed.
    good few yrs. 09 pain sharp, numbness feet,legs, diagnosed fibro, neurop. legs.lung issues.
    daily goal do good thing for someone.
  • Well if pt is done with you that only means whatever they had you do you can probably continue to do it on your own no? Pt will usualy stop here when insurance runs out, insurance wont pay for pt forever after a surgery,

    Here once pt stops then either you go sighn up at a gym and work out or use there pool if you have something like that, meaning you are on your own, If insurance covers some chiro visits to get acccupuncture and deep massage and such then that is good idea to use up those visits also,

    I dont know why so many are against chiro here because thats not all they do is crack and adjust your back, They work around your surgery area just as a pt person would,
    Many assume chiro is only to crack ya lol. Thats not so, I was seeing chiro for years and i will probably go back and see him again,

    He brought my shoulder back to normal and did what he could to break up the stiff muscles from my lower back,

    Pt is mainly to show you the tools of what you need to do and its your job to continue to do it outside of there facility once they are done, because this might go on forever in some of our situations,

    Sadly some that have surgery and do pt it dont stop there, Its a further life time of treatments of meds, injections and massage treatment with some sort of self help work out or pool thearapy, When surgery did not correct the problem 100% this is what we are stuck with,

    Its a full time job just to keep work around the spine related issue to many of us,

    Kelly i would ask the pt person if they can give you the right work out at home for your condition, Thats what i did, And i aplied that to when i went to the ymca gym room along with the pool and worked beter then any pt,

    My problem is i can only do the ymca in the winter months because all the yard work and house work using up all my energy in the summer months,

    Good luck hope this helps, now maybe you can take me with ya to that cruise,
    I dont take up much room, i am house broken, your mom will never even know i am there, Wooo hoooo
    Flexicore ADR 2004 resulting nerve damage l4l5 Fusion 2006 same level, 2009 hardware removal with lami !
    2012 scs implant ,
  • The trip is probably the best thing you can do for yourself also for emotional well being right now, consider it pt for the mind,
    Flexicore ADR 2004 resulting nerve damage l4l5 Fusion 2006 same level, 2009 hardware removal with lami !
    2012 scs implant ,
  • dilaurodilauro ConnecticutPosts: 9,833
    You definitely need some type of treatment to help manage your arm/cervical pain as well as your constant headaches.

    I am not how the medical system works in Canada, but can you have your doctor order additional Physical Therapy for you? Also if possible, Aqua therapy can do a lot of good.

    I am sure that you pain is always there just giving you enough troubles, but to have those constant headaches, that can really knock you down and out.

    I would call the Physical therapist and explain your situation. Perhaps they may have some good advice in terms of treatments you can do yourself.

    Hang in there Kelly, get ready to enjoy some R&R with your Mom.
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • I agree maybe Chiropractor can help. I hurt my neck and the Chiropractor used inferential machine to take down the swelling and used ultrasound also with no adjustments and he also does acupuncture. It think the spa will be good therapy also especially a whirlpool. You can find another PT that may specialize in PT after surgery when you come home. It's awful you have to wait so long to see an Orthosurgeon or Neurosurgeon. Have you considered seeing on in a bigger city?

    Not sure if you can take an anti-inflammatory like Naproxen for the headaches since having surgery? Have you tried any migraine relief medications like Maxalt sublingual wafers? Do you take a muscle relaxant? So sorry you're going through this for so long after surgery, didn't your Surgeon propose fusion surgery also?

    I hope that arm pain and swelling goes down. Charry
    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
  • I do have my exercises that she gave me that I do on my own. She was also doing massage work which was great.

    Alex, chiro/massage is not covered under our insurance unless we have extra paid insurance, then it's usually only for 10 sessions or something and that's chiro only. But, I've been instructed by any surgeon I've seen to never go to one for my neck, and it's just a personal preference as well. Acupuncture? No way. Tried it a couple of times, it left me in indescribable burning pain for days.

    I see my doc on the 30th, so I'll be talking to her about this. It's a little confusing right now because in a few weeks my care will be totally moving over to VA, and for the past couple of months, neither organization has really wanted to take responsibility for my medical care, although it's the CF that should be up until the 8th of Nov. I do have a VA rep coming to my house on Friday to do an assessment on the house and boy, she's going to be getting an earful, lol. There are services that I should have been receiving since my surgery in June that I haven't been and it's going to be sorted out now.

    Charry, I do take Imitrex for my migraines when I feel them coming on, and I actually started on Topomax in the summer hoping it would help with the headaches. I think just with everything that's been going on this fall, it's just been a really stressful time, so it hasn't helped in the headache department.

    I was on muscle relaxants, but they had long stopped working, so I stopped taking them in the summer when I did a total med change. I might as well had been eating tic tacs. I do take ibuprofen, but can't take naproxen, it upsets my stomach.

    My original ns is actually in Ottawa, so that's why I'm looking for one in my own city, one closer to home, it's getting too much to travel for my mom. She wasn't too pleased when I told her that the EMG was scheduled for Dec, because every time we've had a winter appt, we've ended up in a snow storm on the 401/416. He did suggest a fusion, but we tried the foraminotomies first to delay it, but now he's "afraid to touch me at all", which is why I'm going for more opinions. Anyways, thanks for your well wishes! How are you liking your new house?
    APROUD CANADIANveteranButNOTa doctor, my thoughts are my own
  • Kelly,

    Maybe you should ask for a different muscle relaxer. They like other pain meds can become tollerated by the body. I have switched 3 times. Flerxerile stopped working so I went to Robaxin, that one didn't last long so I went to Zanaflex. My point is there are several different ones you can try. My PM has been good about changing me when I tell them it is not working like it used to. I now need to move up on th zanaflex and will talk about that at my next visit.

    I am sorry your hurting. I agree you need the vacation. It will be a great mental break.

  • Yeah, I've been on a few different ones. I was going to talk to my doc about something else last week, but my appt was apparently cancelled, which I didn't find out about until I got there, which was just something else that ticked me off, lol. So I am going to talk to her about something else on the 30th, but we are kind of limited in what our insurance covers, and I'm pretty sure I've already been on the ones that they do cover. I'll wait and see though, once I get my new doctor and start my coverage through VA what I can get then, hopefully I can try something new.
    APROUD CANADIANveteranButNOTa doctor, my thoughts are my own
  • I have to say I would have been pretty ticked off too between the emg and the pt, too much stress!
    I do think that the pt will go as far as the insurance will pay, but sometimes they don't want to push further if they have concerns about our situation, maybe they want to get more input regarding your arm, possible surgery? just a guess

    I really do think that the vacation will be a wonderful thing :) I hope your body will allow you to relax a bit and enjoy everything!

    take care of yourself and try to take it one thing at a time
    a new favorite saying, You never know how strong you are until being strong is the only choice you have...
    go and flex those "muscles"!
  • Hey Bonnie! You most certainly are a strong person, after all that you've been through. You're one of the people I think of when I start to feel whiny about my own situation, lol, remind myself of how much you've been through this year, and if you can make it through and still carry a great attitude, then so can I!

    I have no issues with insurance paying for pt, there's no issue there, it's more that she just didn't know what else to do with me. But, the VA nurse was here today to go through my post release medical rehab program, so I told her, and she is going to get me set up with the pt clinic that I used to go to a couple of years ago before my first surgery, they were fantastic. So I'm excited about that. I'm going to ask that I get my old therapist back, she was so great. Plus, they have a massage therapist at the clinic as well, I know a couple of people who go there and say she's really good, so that's where I'm going to go for that (I was approved from VA for massage therapy I found out, woohoo, of course, there is a monetary limit, but it still works out to about 1 visit a month at this place). So, the nurse said through the rehab, I'll start on my release and get reassessed at 6 months and see from there if we need to do any adjustments to the treatments, but of course to call if anything changes in the meantime. Such a relief. She's also sending an occupational therapist over, which is actually who I thought was coming today, they check out the house to assess if any equipment needs to be installed like extra handrails and such. So it was good news, and I feel a bit better, and have 3 days til I'm in Costa Rica, can't wait! I'm just dreading packing, lol
    APROUD CANADIANveteranButNOTa doctor, my thoughts are my own
  • more days! Good for you that you are taking this much deserved trip with your mom. Have a wonderful time!

    I know travelling can be difficult with chronic pain, do you have a direct flight? I went to Florida last winter and we had to change planes, including grabbing all the luggage and bringing it to the next flight, on the other side of the airport...not fun (luckily there were wheelchairs there so I didn't need to walk it, but felt bad for hubby)Never again, I will always look for a direct flight.

    Enjoy the beach and being pampered!

    Glad you got some things sorted out with the VA and that you will be able to have monthly massages. Wishing you all the best in finding a NS closer to home.

    >:D< Karen
    >:D< >:-D< : Karen
    L3-S1 herniation and bulges, stenosis, mod facet,ddd,impinged nerves,coccydinia
    discectomy/lami July 2011-unsuccessful
    adr L5-S1 Feb 2012
  • I'm happy for you you'll be seeing the other PT you saw before who helped last time and get a massage and see the OT. Handrails are great for the shower!

    I like it here in the rental house right by the lake it's awesome and don't miss my old house at all!

    I hope you have a nice time away in the sun. What a perfect time to get away. Stay hydrated on the plane. Have fun. Charry
    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
  • MetalneckMetalneck Island of Misfit toysPosts: 1,364
    Best darn muscle relaxant ever invented and yet to be out-performed .... Diazepam ... Good Old Valium.

    Have you in all your trials ever tried it??

    Works better than ... Robaxin ... Skelatin .... Flexiril ... Soma ....Baclophen....

    Again .... just my opinion. (based on my years of trial and trial and trial ....

    Just wondering?

    Spine-health Moderator
    Welcome to Spine-Health  Please read the linked guidelines!!

  • Hey Karen! Thanks! Sadly, no direct flight... We have a 3 hour flt to Miami, a 3 hour layover, then another 3 hour flt onward to san Jose, and the same route on the way back. In a way, I'm kind of glad, as I'm not sure how I'd handle 5 or 6 hours straight on a plane, but it's still going to be a rough trip either way. Thank goodness for meds and heat patches and neck pillows! Thankfully, it's only a 3 night trip, so we can get away with overnight bags (who needs clothes when you're going to be sitting by the pool all day! lol), so no suitcases to lug around!

    Charry, I'm so glad that you love your house! It must have quite the view down by the lake! I'll wave from the window of the plane Monday morning, watch for me, hehe. Yes, I'll be getting the handrails for sure, and the non-slip things I think for the tub, there's none in mine and I've already slipped a couple of times in the shower, thankfully without incident, but still not good.

    Dave, no, I've never had diazepam, that's one thing that the military wouldn't prescribe I don't think as a muscle relaxant. I did ask about it once, and she ignored me, lol. I am on lorazepam though, for anxiety, which I only take as needed, which isn't very often, I imagine it has the same effects as it's in the same family - benzos. Maybe that's why she ignored me, as I already am on the same sort of med, I'm not sure. Maybe she just didn't hear me, who knows. Personally I just don't think she was all that comfortable prescribing the meds she did for me. I know that the other doctors on the base in general don't prescribe narcotics or anything stronger than Tylenol 3 in general, she's one of the only ones that does, as I found out in talking to other injured soldiers, the medics and other doctors. I can wait though until I see my new doctor, and I'll ask her what she thinks, valium was one that I've wondered about in the past, as I know ativan has helped with the spasms when I've taken it.
    APROUD CANADIANveteranButNOTa doctor, my thoughts are my own
  • MetalneckMetalneck Island of Misfit toysPosts: 1,364
    Ativan (loreazapam) is a second generation benzodizepine .... and is more designed for a quick acting acute anxiety event helper.

    Diazepam ....(Valium) is THE first generation benzo and is designed as more of a long acting med with very well know positive effects as a muscle relaxant. I would be surprised is the VA wouldn't allow it because it is not a fancy newer med .... but more of a "gold standard"
    with MANY decades of research and experience.

    Just a thought,

    Hope for many comming positive results!


    I am not a doctor nor have I ever played one on TV ... I thin I played doctor in a closet once when I was 8 .... but couldn't find my stehascope!!

    Any comments are food for thought or things that you may want to review with a real doctor ... or maybe not at all.
    Spine-health Moderator
    Welcome to Spine-Health  Please read the linked guidelines!!

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