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So we begin... Again

chileroxcchilerox Posts: 69
edited 06/11/2012 - 8:45 AM in Spinal Cord Stimulation
Well, my implant was put in 3 months ago, and things are going great. I'm able to turn it off at times now, and it seems to have broken the pain cycle to a certain extent which is a nice change.

Unfortunately, it's not covering my knee pain anymore, so I'm having to get a referral to a rheumatologist. We know that I have arthritis in both knees, so hopefully they'll be able to come up with something. I had been getting Supartz injections in my knees and they were helping, but between one thing and another the set didn't get finished and we're trying to see if we can start over.

My biggest problem, though, is my neck. I've been having trouble with it for a while, but my hips always shoved it off to the side, understandably. Now that my hips are sorted, my neck is acting up. At the pain clinic they had told me they would sort my neck once my hips were done, and now that time has come.

Wednesday I had my 2nd set of epidural injections in my neck - C-4 to C-8? Unfortunately the first set didn't help - my neck still hurt a lot the day of and the next few days, then felt good for about 8 hours and that was it.

My doctor told me with the second set that if they didn't help the day of, I need to call and cancel the third set, because they aren't doing what they should be so there's no point in continuing. Well, I'm going to have to call and cancel. This set was even worse than the first set, and I have been spending a lot of time with a bag of frozen spinach on my neck.

The worst part is that if I lay on my back, both of my arms fall asleep and go completely numb. I'm pretty sure that's a good indicator that I have some pinched nerves in my neck. I know that there is a vertebra that my physical therapist was concerned about years ago, because it is pushed forward too much. Now I'm afraid that they'll send me for a CT scan of my neck and find out that I have a slipped disc or something and that they'll say I need surgery.

If the injections had helped, they were going to go in and do a nerve burn. Since they haven't helped, I have no idea what's next. I hate to think of the possibility of ending up with another implant, but I can't think of a lot of other options.

Due to my surgery I had to get an extension on my classes for last semester, so I'm still trying to finish those. I just discovered the other day that after I finish them, I have one more class plus my thesis and then I will be done with my Master's degree. So I have resumes and thesis fears and job hunting on my mind, as well as everything I need to do to get my graduate certificates. I think I might just go insane before I manage to get everything finished.

On top of everything else, I had managed to get off almost all of the pain meds after my implant was put in. I'm still taking a flexeril most days, and I was taking hydrocodone - until I found out the hard way that I developed an allergy to it. It makes me itch as though I had rolled around in poison ivy, so no more hydrocodone for me. I've had to start using the fentanyl patches again for the pain, and they aren't helping a whole lot.

I guess the only good thing with all of this is that I have a new boyfriend (2 months together, now) and he's great about helping out and driving me to doctor's appointments and such. Hopefully he'll manage to help me retain my sanity, because if I have to do it on my own I'm not so sure...



  • Well Chile,

    You kind of put a wee scare in me. I've had 2 fusions in my neck (see avatar), and have issues... But, the latest in the last few weeks, is sleeping on my back, I loose both arms when I awake! I honestly don't know how long it takes to do that, as I sleep an hour or two, and numb, but dunno. I am getting geared back up with doctors (took a retirement treat vacations from them), so I figure as my luck has it, more issues. I will deal with it.

    Now with you, have they given you a game plan now that the shots aren't working? My NS gave up on those puppies after my first go around. Now to be fair, my first fusion was a 'parallelization' issue in that the disk was on the cord. The second one, on the roots, but the shots did nothing. I hope they have a game plan for ya! Please keep us posted. Good luck!!!

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • No game plan yet, I'm supposed to go back the end of August and we'll see what they come up with. I was supposed to go the 4th for my last set of injections, but since that isn't happening...

    My arms go to sleep quickly enough that I've felt it before falling asleep before. If I lie on my back they're generally numb within ten minutes. Fortunately I don't sleep on my back too often, but when I do I wake up and they're of course totally numb, which hurts once I get shifted around some.

    My mom had neck surgery - she had a herniated disc in her neck - and I know that the arm/hand numbness was something they were worried about. There have been times when I would drop things, too - I would be holding a cup or something and then it would be on the ground because my grip was just gone all of a sudden. It's a real mess.

    I'm really surprised that they tried the shots again, since they did 108 of them in my hips and they didn't work, but I guess they figured it was worth a shot. No pun intended.

    I'll be sure to keep y'all posted as to what they figure out!
  • Sorry there is no 'game plan' yet. My numbness doesn't seem to happen that fast, but it is concerning me of late - my neck stinks! (G) I've fallen asleep in my 'office' like chair at home, and wake with numb arms as well, but not as fast as yours.

    Your mom had neck issues too? I am guessing by your post, you didn't have an injury per say? So genetics might be at play? Did the doctors mention that you might be predisposed? I hope they can find out what is going on. The "idiopathic' diagnosis bites! Many of us have similar or same issues, and are here for you. Nope, we can't give medical 'specific' advise, but we've got the shirt if you know what I mean, and are here for ya woman! Oh, (smiling) nice to hear your new boy friend is supportive - that is big! *hug*

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • Forgot to mention, your Avatar is really cute! :)

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • No specific injury that we can peg, but I have gotten in a few pretty bad car accidents and had some nasty whiplash.

    My mom had neck surgery, but in her case she slipped on some ice and cracked her head against the side of the house - skull on brick wall was not happy. She herniated a disc so badly that they told her that if she so much as got rear ended before her surgery it would probably kill her.

    My arms have actually started getting numb if I'm just sitting here on the computer, but at least then it's only slightly and tends to only be one - and if I shift my weight right it goes away.

    Supportive people make life so much easier!
  • Sorry to hear that you are having trouble with your knees and neck now. :-(

    Although it is scarey to think that you might need surgery, if the scan shows it, if they can suggest a solution to your pain, that would be good news.

    I am recoverying from a lumbar fusion in March, and am so much better than before surgery. It was definately the best thing to do in my case. I was trying to avoid it for over 2 years, but am now much improved, and the sciatica in my legs has gone, at last!

    I have started to have trouble with my knees. I think probably because I am using them much more now to try to protect my back.

    My neck causes me pain, and I think that there is a problem there, but am yet to have a scan. I do get shoulder, arm and hand pain. Also tingling and pins and needles in my arms and fingers and numbness in my wrists and thumb. The pains aren't there all the time, but are familiar 'friends' (?!) that appear most days. I wonder how much longer I should leave it before asking for tests. I have mentioned it to my doctor, but said I would live with it for the time being as I am still recovering from the lumbar fusion.

    I am always interested to read of others symptoms from neck issues, and hear how they have them treated, in case that is in my future.

    I hope that they find a way to relieve your pain and enable you to get back to your life. :D

  • I know on a forum for spines, it's easy to instantly default that any new issue is caused by something going bad or getting worse within our already challenged spines. I have learned along the way that some times things are simply just simple things. For instance. I have had problems with my arms going completely numb ever since I was a teenager. Never gave it much thought until several years later I had an accident and lost strength in my arms and hands. Some well meaning doc diagnosed it at Thoracic Outlet Syndrome and sent me on my way. Just by chance I got into weight lifting and some of the stretches I did while warming up "opened up my chest and shoulders" enough to magically cure the TOS.

    I found out later that it is quite common for women especially to have TOS like symptoms caused by posture that leads to shoulders being rolled forward and "closing off the chest". Working in a Physical Therapy clinic, I found that this is quite common and also quite common for someone with neck issues. For instance with my neck issues, I tend to be far stiffer and a lot more guarded which results in stiffness through my chest and shoulders. If I keep this stretched out and loose, I have very few episodes of my arms falling asleep.

    Anyway, I mention this, because sometimes we see a stampeding elephant, when in reality it is only a mouse. Or we have this reversed and minimize our situation in hopes it will go away if ignored. We can't really know until the doc has done an exam and evaluation and presents us with the cold hard facts. Some folks unnecessarily stress over something that may or may not even exist.

    Knowledge is power, but it can also be a curse. Paralysis through analysis is quite easy for those in situations like many who are members here. The old saying "don't put the cart before the horse" or "don't count your chickens until they've all hatched" seems pertinent here.

    Keeping a good pain diary can go a long way towards identifying trends that can also be good clue for the doc to follow up on.

    Glad to hear that you have a very supportive boy friend. I hope that the time until your next appointment goes quickly and calmly for you.

  • I have a feeling that the car crashes did affect things, we got hit pretty hard and the last time I ended up on a backboard.

    I was supposed to go for more injections on the 4th but I am going to have to cancel. Not only did the first set not end up working out, but my ex has completely screwed up our insurance so at the moment, I don't have any. We're trying to get him to sort things out and figure out how to get my meds, because not having anti-depressants in this situation is not good - and I'm running out of Effexor, which nobody should have to go cold turkey off of!

    We are pretty sure that my arm/hand numbness is from my neck. My physical therapist was working on it one day, and discovered that one of the vertebra is shoved forward far enough that it almost feels like there's no vertebra there, just a gap. I would imagine that's pushing on thngs pretty well.

    Oh well, one day at a time. One breath at a time, some days. I need to get things sorted so I can go see a rheumatologist, too... it's started to look like I may have gotten RA, or at least something similar. Thanks great grandma! *sigh*
  • Chile,

    The car crashes could have added to weak areas in your disks. I crashed a helicopter and had two jerks 'hit and run' me, causing whiplash. I figure some 'minor' injury in said accident all adds up to our aging rates. Aging of the particular areas more so. Hopefully you will have answers and a plan soon. In the meanwhile we are all here. :)

    99% of my computer time is now on my laptop, but when I was working, it was a desk top, and I would get pain down my arms typing there. Here at home I think I've found a level that works pretty good. If I have a long post, I type part of it, stretch the arms down, and roll my shoulders to ease it up, then I am good again for a while.

    Have you found changing the position of your keyboard changes things - good or bad? I experiment when I start having pain doing things - I try to find a different position or seating etc. I hope you can find some comfort. Please keep us posted. *HUG*

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
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