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Hi, I'm Kim, Introducing myself

Hi So glad to find your site. I started with C-spine arthritis in my late 20's. Just began limiting activities that exacerbated this. Was working part time, raising my 2 daughters, running 3 miles a day. At 38 had to have surgery with general anesthesia. Never felt well since then. Chronic fatigue diagnosis came, with r/u of other causes of symptoms. Headaches, tingling/burning in scalp area, neck, upper back, burning, brain fog, feeling like glasses prescription is off, no exercise tolerance. Legs just lose strength, and I would need to sit down.. Feels like it you could pull my head up off neck something would open up. Levothyroxine has helped with thyroid, but neck symptoms just progress. Had MRI with finding of C 4/5 and 5/6 disc protrusion which was read as sub clinical. Neurologist had no suggestions for me, even though I had foot reflex which was abnormal. I think the chronic fatigue diagnosis gave me lack of creditability. So I lost any hope of medical help and learned to listen to my body and self manage . No swimming, bicycling, or any other activity that stresses neck. NEVER extend neck. Sleep position carefully I have a sleep number bed which helps. Exercise is 1 mile of walking a day. Any more drains me for the next day. House activities spaced out with back rest inbetween. If neck issues arise, rest, rest, rest, in proper position. Family has had to adjust to mom and now gramma's," sorry I can't join you for that activity:. Manage to work, with minimal call outs. As all of you, I have found that you can accomplish a lot more than you think you can when your body is working against you. 4 years go I saw another neurologist to for a fresh look. He checked for Myesthenia gravis, as this was the one condition not originally checked for (MS, GuIliane barre, Lymes, ect negative) Blood test was very low normal so repetitive nerve stimulation was done (OUCH) there was some very minor abnormalities here, but not indicative of the MG.
So I just continued on as I had been.

Now I am 55. 2 weeks ago I had severe event, with symptoms I haven't had for over ten years. Overdid, but not any more than I do on occasion when I just preschedule a rest day ahead of time. Was on my feet all day. Ignored slight brain fog feeling. Woke up with SEVERE headache, like my head(not face) was being crushed by wet cement, burning/tingling neck, between shoulders, to middle back. Extreme brain fog. I was beat. No way to function. Into bed with head/neck carefully positioned and wait it out. That was a Sunday. I made it to work on Tuesday, but it was a struggle. It's been 2 weeks I have low grade headache, intermittent tingling scalp, neck, between shoulder to mid back, down both arms to pinky and ring finger. Brain fog to mild level. I see my GP to discuss f/u this coming Monday. I have learned so much from reading your posts. Know now the MRI probably was not accurate enough if more than 3mm ,and that I should have seen a neuro surgeon. This recent event SCARED me. Didn't think I would have such severity after managing so well these many years. Don't want to have my head in the sand and not address an issue if it needs to be addressed. I almost feel guilty asking for your help, you all have so much more to deal with, I feel fortunate. Any thoughts on how best to approach all this with my GP Monday? I live in NH and am an hour away from both Portland Me. and Boston Ma for major medical centers.

Thank you ahead of time for any help you have!
Kim- "while I breathe I hope"



  • I am sure that you will find your time on Spine-Health very rewarding. This site is a powerful and integrated system that is dynamic and continues to grow.
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    Where did you get the information that a MRI is not useful unless the sections are done at 3 mm slices? The slice sections are determined by the type of test being requested, and the radiologist's /machine manufacturer's settings. The only time that adjustments need to be made to the slice width is when there are medical reasons to change the parameters. Normally the usual slice width is 5 mm, which is the standard.
    Usually, when there are signs of nerve compression or defect in function, abnormal neuro response, they will send you for a consult with a board certified spine surgeon- ortho or neuro, depending on which you favor, and possibly send you for an MRI prior to sending you if they find something that makes them think that there is something going on with your spine.
  • thank you sandi. One of the other postings had mentioned MRI with 5mm detected minor defects. It was repeated with I think 2 or 3mm and much more was found. I am somewhat fearful of the process of finding the right doc. And I'm a past ICU/CCU nurse! ( no neuro though) It took so much time away from daily routine and family life to try to deal with the events after that past surgery. I'm not looking forward to another round, but don't want to ignore this and then have more problems.
    Kim- "while I breathe I hope"

  • ksmmackksmmac Posts: 8
    edited 09/16/2013 - 7:51 AM
    my PCP today. After reviewing my history and present symptoms he thinks probable C7 level changes. Since I've been self managing for so many years, need to establish recent health history for back issues. In office exam did not show neuro deficits. 1 week prednisone to decrease inflammatory tissue. If still having tingling after this, will X ray next. I also learned that the severe headache, brain fog is not actually from the cranial nerves, as this area is brain stem, it is from the muscle tightness that develops with C spine issues. This was comforting. My doc was great, listened, took me seriously. He related that I had been very conservative in managing spine issues thus far. He is almost as much as an athlete as an MD and said he probably would have wanted treatment so he could keep up his extreme sports passion. I just want to continue my already carefully paced family/household/work routines! So it seems that there is a process to go through before I will even be able to have an MRI or CT scan.
    Kim- "while I breathe I hope"

  • Yes, there is a standard protocal if you will when it comes to treating spine conditions......at the bottom of my post, there is a link to a post about getting chronic back pain treated, and it lists the tests, procedures and the usual steps to getting the pain treated right up to the point where surgery may be considered......it might help you to read it so that you know when each step is taken and why.....
    If I can help, just say the word...
  • My cervical issues are at c4-7 and anytime I overdo I get a horrible headache, knots/cramps in upper back and traps and it's very difficult to turn my head. Only thing that really helps is rest, traction and heat. Can take up to 2 days to recover depending on what I did to aggrevate it. I am one of the stubborn ones that knows I shouldn't over do but not willing to sit in the porch swing yet. I had to give up marathon running 10 years ago, took a long time to get over not running.
    laminectomy c4/c5 2008, ACDF c4-c7 Jan 20 2014 sched
  • AnonymousUserAAnonymousUser Posts: 49,671
    edited 09/20/2013 - 5:18 PM
    I was on that weekly regime, and it made me sweat, hungry and angry. But it did relieve the cervical pain, so I started gettting the epidural steroid injections. I never thought I would do it ( have medical backround and have seen some of the problems) but they worked. I could cut back my pain meds and function, but they only lasted about 8 weeks. I like the 8 weeks of feeling good though - I have had 6 in the past 2 years. Good luck with your tx, BTW I am a young 50ish female also.
  • thanks so much for your insights. I'm currently feeling just my "usual" stiffness soreness and will be finishing the prednisone next week. Still have some slight tingling sunburn feeling of upper back. Sandi, thanks for the step by step site info. Dayrunner, Yes, I did push past my known threshold...guess I learned my lesson! I had been very careful for years, but thought, I'm doing so well, maybe I can push this a bit. Neck soup, thank you for the insight on the prednisone. The only adjustment I made was that I am omitting the third dose which is at bedtime, because it kept me awake all night. The two doses are helping. I expect your daily pain is quite a bit higher than I am. I would not consider taking steroids ongoing unless there is appreciable deterioration. I expect most of the courageous persons on this site have more serious issues than I do presently. I am so happy to have found the site and get on board before a critical period. One thing my PCP did say was no more taking any chances with riding on motorcycle with my hubby. This was a rare gift as he loves riding, and I only ride when back is at its best. PCP related that the risk of bringing on more significant issue is not worth it. I am very active hand's on teaching caregivers body mechanics and transfers and also have times I assist caregivers in the client homes with transfers. My religious devotion to proper body mechanics has allowed me to keep up this position, but it's becoming more difficult, especially in the last year.
    Kim- "while I breathe I hope"

  • ksmmackksmmac Posts: 8
    edited 09/22/2013 - 1:28 PM
    ibuprofen has been my mainstay for pain control for years. I find 800 mg every four hours when having pain that stops normal activity, and then tapering off so I am not taking at all works at this point. While on the prednisone, PCP said no ibuprofen , can have acetaminophen ( doesn't work for me so, just waiting to restart ibuprofen the again) Can any of you offer some insights into what your tipping points were from manageable issues? Any thing you look back on and see where if you could go back, you may have managed yourselves differently?
    Kim- "while I breathe I hope"

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