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Hello everyone--It has been a LONG time

Hello to everyone. I have been a member of spine-health since 2006, and was a regular here up until a couple of years ago. I haven't logged in for so long that I had to request a new login! So first, I want to say hello to all of my old friends, and that I will be around again for a while to visit with newer members.
I have been on this journey for about 9 years now. You know the saying "time flies when you are having fun." Well, it has been a long 9 years, but I have learned to make the best of my life and live with the post surgery issues that will last a lifetime.
I currently have a Medtronics pain pump, using Prialt infused into my spinal fluid. This has had its ups and downs. It has made my pain somewhat bearable, along with oral medications. Thankfully I haven't gotten into the heavy opiates yet, but I can see that coming if things don't improve.
Today we added bupivacaine to the Prialt. It will take 4 days before the new meds make it through all the tubing, so I won't know for a bit if it works, but I sure hope so!
I was once a moderator here, and enjoyed helping people just beginning with their neck injuries. I left for a while because I felt that I needed to focus on other parts of my life. But I just couldn't stay away. There is something about living with chronic pain day in and day out that just doesn't let us forget it! If I can help others with their journey through neck issues, perhaps that is why I had to go through all of this.
A "brief" history
2006 ACDF C5 to T1, resulted in partial paralysis, damage to cord, Browns Sequard Syndrome, loss of bladder and bowel (now resolved), and a whole slug of other issues, Severe burning and chronic pain in neck, arms, legs, feet from that point on
2006 5 or 6 weeks post op I developed DVT and PE (that is what paralysis will do if you can't move those legs, ha ha)
2008 Revision to previous surgery. After all that I went through, I didn't fuse. Removed everything, front and back, neck now consists of solid cage in the center from C5-T1, plate and screws in the front, rods and pins in the back. Yes, I am a TITANIUM woman.
Neck Pain worse after this surgery, but at least everything is solid.
2011 Discovered I have a cervical tethered cord from where the cord damage happened during surgery the first time
2013 Medtronics Pain Pump implanted using Prialt (snail juice). I guess that is why I am so slow now, lol
2013-2015 Titrated up and down at different times with the Prialt. Finally tapered it way down because it was making me crazy
9-2015 Added Bupivacaine with Prialt
Currently--in a whole lot of pain but walking well now, and trying really hard to remember the positives.
Surviving chronic pain one day at a time, praying for a reprieve because living another 40 years like this doesn't sound too fun!
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1

Comments

  • dilaurodilauro ConnecticutPosts: 12,230
    edited 09/25/2015 - 4:12 PM
    When I saw your name posted, I was so happy. Just to see (online) again was great.
    On the other hand, realizing that you are posting, its always associated with pain and discomfort. I do hope that you are doing the best you can.
    I also hope that you and your family are doing the best.

    I do miss you not only as a person, but being one of our moderators. You always demonstrated fairness and compassion no matter who was talking. You saw the bright side of something that was dark. So many times, you showed the right things. I do miss that so much. I knew I could always count on you to be the fair person, not tainted by someone's comments. You demonstrated just what it meant to be the moderator, the person in control.

    Cindy, I miss you!

    Ron DiLauro Veritas-Health Forums Manager
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • Ron, my friend, your comments bring tears to my eyes tonight. Thank you so much for the kind words. I have missed spine-health, but at the same time it was nice to feel well enough to stay away. Seems like I always come back for support/answers, and my therapy time has always been helping other people.
    Are you well? How is your back?
    Surviving chronic pain one day at a time, praying for a reprieve because living another 40 years like this doesn't sound too fun!
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  • LizLiz Posts: 9,445
    Good to see you on the forum but sorry to read your pain is one of the reasons that brought you back.
    We missed you

    Liz, Spine-health Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
  • Yeah, that darn chronic pain never ends. Overall I am doing much better, but it is always a battle to find the right pain control. Summer is over, my husband and I are empty nesters, and I have some spare time now. I am hoping there are new members here who are using prialt in their pumps so that I can talk with them. I need some guidance from someone else with this same med.
    Good to see that you are still a mod. It is a good thing to be involved. Thanks for welcoming me back.
    Surviving chronic pain one day at a time, praying for a reprieve because living another 40 years like this doesn't sound too fun!
  • itsautonomicitsautonomic LouisianaPosts: 2,561
    Hey Cindy I to left during the escalation of my problems then came back under different name, but I was anelsen15. I am sorry you are continuing with the bad pain, but I was recently diagnosed with central cord syndrome as the primary cause of most of my issues. All I can say is I am sorry about the brown Sequard yndrome I am learning how different central pain is than mechanical pain and so far it's beyond what I could comprehend .
    Glad to see you back helping others
    Do your due dilegence, trust you know your body and question everything if it does not fit. Advocate for yourself and you will be suprised what will be revealed trusting your body and instinct.
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  • itsautonomic said:
    Hey Cindy I to left during the escalation of my problems then came back under different name, but I was anelsen15. I am sorry you are continuing with the bad pain, but I was recently diagnosed with central cord syndrome as the primary cause of most of my issues. All I can say is I am sorry about the brown Sequard yndrome I am learning how different central pain is than mechanical pain and so far it's beyond what I could comprehend .
    Glad to see you back helping others
    I'm glad you told me your former name. I remember you and it is good to "see" you again. What is central cord syndrome? I assume you have much burning pain, paresthesias, and a myriad of problems with it, but I have not heard that phrase. I also have a tethered cord in my neck, which is a result from the scarring that happened with my cord damage back in 2006. Seems it never ends. But I am actually walking better than I have in years. Sometimes it is even a normal gait. This is amazing to me. Took 9 years to get here, but I'll take it. Of course I still have the ups and downs with all of it. My neck pain continues to be bad, with lots of spasming and difficulty in supporting my head. Sometimes that wears me down. I also have a lot of pain still on the right side of my body, from arm pit down to toes. I think this will always be, but thankfully medication helps. Fill me in on your symptoms, what you have been doing for treatment. I'd love to hear from you again. :)
    Surviving chronic pain one day at a time, praying for a reprieve because living another 40 years like this doesn't sound too fun!
  • Welcome Back!
    Its good to see some of the familar names,again!
    Lol
    Incame,here to post about my neck..i coughed...once t other day amd it is like starting over
    Dang Cervical Facitis,loose bone, muscle,damage..
    Ohh well
    Good to see anelsen ,"its" back again!
    William Garza
    Spine-Health Mod
    erator

    Welcome to Spine-Health

  • itsautonomicitsautonomic LouisianaPosts: 2,561
    Hey Cindy good to see you also. Central cord syndrome is a term they used for my case where I damaged the nerves in my spinal cord in a certain manner where I had more issues in arms than legs. I lost feeling in arms but could move legs after injury. Yes my pain is overwhelming and so different than anything painful I've ever felt, essentially it's taken over my life honestly. I do have all types of weird problems allodonia in right arm and leg, a breeze fells like knives, but the cold is my worst pain. It's like frozen metal touching exposed nerve, it ha lowered my quality of life significantly . They say it's " central pain syndrome" now, like post stroke pain . Sadly I don't have anything I've done that helps so far. I also developed autonomic dysfunction from the injury and small fiber neurapathy also.
    Do your due dilegence, trust you know your body and question everything if it does not fit. Advocate for yourself and you will be suprised what will be revealed trusting your body and instinct.
  • William Garza said:
    Welcome Back!
    Its good to see some of the familar names,again!
    Lol
    Incame,here to post about my neck..i coughed...once t other day amd it is like starting over
    Dang Cervical Facitis,loose bone, muscle,damage..

    Ohh well
    Good to see anelsen ,"its" back again!
    It seems that we just can't win sometimes. I'm so sorry. Get yourself some cough medicine so that it doesn't happen again, haha. Like you can ever predict when a cough attack is coming on. This was a couple of months ago when you first mentioned this. Are you improving? What is entailed with your back to the starting line phase? I hope you are healing up again. cindy
    Surviving chronic pain one day at a time, praying for a reprieve because living another 40 years like this doesn't sound too fun!
  • jycspinejjycspine Posts: 3
    edited 02/02/2016 - 6:40 PM
    Hi Everyone, I am brand new to this forum. I am a 46 yr old with degenerative disc disease. I had a C5-C6 Discectomy and Fusion in 2002 and recovered well. Had a setback in 2009 with a bulge at C3-C4 that resolved itself, and then another at C6-C7. I currently feel I am starting all over again with severe unilateral radiculopathy. No parasthesia but neck, shoulder and scapular pain unbearable. Doctor wants to treat conservatively for 6 weeks before a neuro referral I am dreading the prolonged WAIT and see...I know my body well enough to know that this is a bad set back. I had significant cord compression with original surgery and this feels the same. Another doctor appt next week to beg for MRI and Neuro referral. I am in Canada and although a decent healthcare system it takes a year or more from diagnosis to surgery which is hell for those with cord compression. Just reaching out to others who can relate to what I am going through, it looks like some of you have been through much more than me, here's hoping you find some relief from pain and are able to function in a normal capacity again one day. Thanks for listening !
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