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Advanced DDD 4-Levels w/Nerve Impingement Spasms

JoydancerJJoydancer Posts: 463
edited 06/11/2012 - 8:44 AM in Neck Pain: Cervical
It's been a while since I've been on the Spine-H forum and actually posted my status with DDD but not that I haven't logged on to know I am not alone in this devasting DDD disease. In two other posts(New Introductions and Spine DDD) I detailed the dilemma of needing a second and actually a third surgery for severely advanced DDD of my cervical spine, C-6/7 C-7/8, T-1/2 with kyphosis, stenosis, spondylosis and osteophytes bone spurs causing nerve impingement on 2 levels.

My first surgery was in 1995 three bone spurs encroaching spinal cord at C-3/4 C-4/5 C-5/6 and my first cervical spine surgery = ACDF.

As many of your know living with DDD and the painful symptoms of nerves, muscles, ligaments taking the heavy burden of movement of a dysfunctional spine, disc and fusion is ongoing.

After sustaining two motor vehicle accident injuries (a rear-end collision in 2004 and then a broadside t-bone in 2007 which miraculously did not cause direct injury to the spinal cord with narrowing and shifting of degenerative disc and bone spurs. It took me over a year to get over the "invisible" but nonetheless traumatic and chronic pain symptoms of spondylosis, nerve and muscle spasms in neck, shoulder, arms and lower back, but I amazingly with the help of physical therapy, pain meds, massage, neuromuscular electrical stimulation treatment I got to the place of having lesser pain and longer episodes.

And as the past two years and following the most severe mva in 2007 where I was hit directly broadside into my driver door, after a year and a half of therapy as before I was able to function better with less pain but the episodes didn't subside as before. The past year there were changes in the degeneration and impinging bone spurs on two levels with increasing symptoms of pain down middle of my back, shoulder blades, shoulder joint pain, aching down my arm and into my hands. With worsening and ever-increasing and intolerable pain and nerve spams into my hand I began losing the use of my arm, shoulder and especially my wrist and fingers.

With an MRI, CT Scan and flexion x-ray, the final verdict came in 5 months ago that levels C-6/7 C-7/8 T-1/2 which have been creating much havoc and pain is now moved from "advanced degeneration" to "severe / chronic degeneration" needing correction for the advanced and the no longer tolerable nerve pain resulting in chronic nerve impingement on two levels.

Unfortunately, it has been assessed by two surgeons, one out of state where I used to live and one local surgeon, that I am high risk to have another front approach (anterior) surgery for dysphagia/dysphonia damage (throat swallowing and voice nerves/muscles/ligaments compromised), as well with immediate 3 levels already fused and requiring junction plates and screws over cervical and thoracic areas.
I hope to get another opinion and see a neurologist who specializes in neuromuscular problems and especially thoracic outlet and brachial/cervical nerve problems which I have impinged and as well get another referral and opinion from a neurosurgeon. The surgeons who assessed as too high risk, not a good candidate for surgery were orthopedic surgeons.

In the meantime, I am experience severe nerve spasms down my arm and into my hands continuously, that goes from the severe electrical showering down outer arm with deep aching and tremendous burning pain into my hand. The nerve impingement affects one side for two or three months (left side right now) and then moves to the right side arm, hands. Told I have bi-lateral all nerve roots impinged on both sides at C-6/7 C-7/8.

Two weeks ago I had an anterior approach two level nerve block injections in hopes to get some relief from the chronic nerve pain and spasms. I was free of total pain for 3 days, shoulder, mid-back pain, and all the arm and hand nerve pain. Unfortunately, the arm and hand nerve pain, burning spasms have come back and much worse, if that could even be possible, much more intense and continuous now.

I am on a double dose of 7.5 mg hydrocodone which on a single dose barely took the edge off the severe pain. I have increased another medication seroquel from 50 mg to 75 mg in order to sleep better. My life revolves around the dosing of meds and breathing around each episode of severe spasms until the meds take affect ever 4 hours.

My quality of life has dwindled to zero. I have my beloved fur-babies, a ShihZhu and Lhasa, Gizmo and Brittany to keep my spirits up but they sure do miss the play times and my walks with them.

I am praying that next week I can contact a neuromuscular specialist and neurologist to see me and get evaluated for the level of nerve disorder and especially damage I am sustaining which clearly has been going on for over 5 months now and to see what they can suggest.

But, I know, the bottom-line is DDD three levels needing reconstruction and stabilization removal of the spurs and instrumentation of plates and screws to free up the nerve branch/nerve root outlet problems.....and I know I need a surgeon who is not only willing but confident it can be done without a high compromise of post-surgery dysfunction.
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Comments

  • Wow Janelle,

    I am sorry that you are suffering so badly. I can relate to some extent, but I don't think I am nearly as bad off as you .

    I hope that the NS you see will offer some hope.

    I was just released from an ACDF c5/6/7 on April 26 and on the 27th I was in a auto accident. My pain is worse than ever (hoping it is just whiplash). My NS said I might have herniated the level or levels below. I am having a nerve root injection next Friday. If after a few weeks I don't feel better then they want me to call in and they will order and MRI before my next visit in 8 weeks.

    Pain is part of my daily life. My cup is trying to stay half full but every once in a while it gets to me and it becomes half empty. Try to stay postitive it helps a little.

    Julie
  • MetalneckMetalneck The Island of Misfit toysPosts: 1,778
    Keep us posted on your progress!

    Please?

    Regards,

    Dave
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  • I am so sorry that you are going through so much right now, I live on soma and hydocodone and after my acdf next week and after recovery I cant wait to get off all the pain meds. I hadnt decided to do the surgery until I could no longer work and my life had come down to either laying in bed or be up not being able to deal with the pain. (muscle spasms in back, headaches, arm and shoulder pain, neck pain, you know the drill.) Its really hard to live with chronic pain and nerve pain is the hardest. We are here for you. Hopefully the drs will be able to help you, please let us know how you are doing and we are thinking of you and praying for you. Lela
  • Julie, thanks for your message reply. Gosh, you are another person, myself and so many others I have heard having mva shortly after their surgery. My ACDF C-3/4/5/6 was done in Mar 1995 and in May 1995 I got hit sitting at a stoplight ! I went into the muscle spasms and pain I had just gotten over from the surgery ! It set me back about 6 months, but the good news was there was no injury to my spine and my bone implant fusion was completely successful.

    Please know as "SS" spine surgery survivors we are very vulnerable to muscle/tendon injuries and nerve inflammation (spondylosis is what my drs called it vs. whiplash - - especially in dealing with full diagnosis of inflammatory conditions that exist with DDD, more intense in pain and duration). Took me 6 months to get out of the pain/spasms and feeling much better. Hope things can improve for you sooner than that.

    Post-MVA = Things that helped me were aqua therapy, special movement physical therapy (stretch with moist heat pads prior), body/muscle massage, tens stimulation, 3 X week. That helped tremendously I began in the last 4 months of that recovery with it, and it really turned things around.

    You're right about keeping positive, I have lived with this disease since my 20's (having DDD) and continual pain with arthritis beginning in a major way in my 30's.

    I couldn't have imagined what would have unfolded past 40 yrs., but I have always been "graced" with an ability to live an active life and most people never and still don't know I am challenged with this disease. I am now 60 yrs young with good spirited days this body is all at times that is greater challenged !

    Julie, you mentioned you were going to have injections, how did it go for you? Was the injection facet joint or nerve blocks? Hope you were able to get some relief.

    Thanks again in responding and sharing your path with me too - - it means verrry much to me and helps me feel connected and chance to get know you all better !

    Janelle "Joydancer"
    ------------------------------------------------
    C-Spine deformity Klippel Feil top 3 levels (birth)
    C-2/3 partial hypermobile disc/vertebrae
    C-4/5/6 DDD 3 bone spurs lateral into spinal cord (left body neuropathy, numbness/weakness)
    ACDF C-4/5/6 w/bone implant fusion Mar 1995 (42 yrs old)
    C-5/6 Osteophytes Foraminal Narrowing
    C-6/7/T-1 Severe DDD multiple osteophytes, nerve impingement left/right bilaterally at nerve openings; kyphosis, stenosis, severe facet arthropy C-6/7; severe radiculopathy left shoulder/arm/hand/thumb/fingers
    MRI/CT Scans 4-27-10
    DC: ACDF surgery needed; considered "high risk" for second front approach surgery.
    Getting second opinion June, 2010 neurosurgeon
  • Hi, Dave,

    Appreciate your reply and post.

    It's been several weeks since I posted and I was in so much pain, hadn't been getting back on the computer much and just getting back to the board tonight.

    re: Severe radiculopathy C-6/7/T-1 nerve impingement

    Things have finally shifted and with meds and much r/r am beginning to experience some relief ! The spasms were chronic for 3-4 weeks after getting a nerve block injection bilaterally at C-7/8 aggravated the nerve affecting my whole left arm nerve spasms and burning in my hands, fingers, complete loss of function.

    Amazing I wouldn't have thought it could have reversed for where it had gone but I supposed two meds are evidently helping: Neurontin (second try after itching allergy lesser dose, eve only) and Meloxicam (twice dosage) for past week.

    Not sure if this is something I can experience for a while knowing the severe DDD at 6/7/1 that was dx'd as causing nerve impingement. But I am thrilled to get this level of relief. Sleeping much better (Neurontin with Seroquel that I had been taking for sleep aid and anxiety) insures I get a good nights sleep.

    Trying to be active, some walking, doing errands, playing with my 2 dogs, light housekeeping no matter how intense it was, kept me from "caving in" to feeling victim to the intense seering pain.
    But I can tell you this there were times I had some pretty hopeless periods of getting no relief. Without Neurontin, Meloxicam and Hydrocodone (increased) I couldn't have done it !

    How are things for you ?

    How long has it been since your surgery ? See some mighty fine instrumentation on 3 levels !

    Hope to come on more often now that I am doing better.

    Drop a line !

    -----------------------
    C-Spine deformity Klippel Feil top 3 levels (birth)
    C-2/3 partial hypermobile disc/vertebrae
    C-4/5/6 DDD 3 bone spurs lateral into spinal cord (left body neuropathy, numbness/weakness)
    ACDF C-4/5/6 w/bone implant fusion Mar 1995 (42 yrs old)
    C-5/6 Osteophytes Foraminal Narrowing
    C-6/7/T-1 Severe DDD multiple osteophytes, nerve impingement left/right bilaterally at nerve openings; kyphosis, stenosis, severe facet arthropy C-6/7; severe radiculopathy left shoulder/arm/hand/thumb/fingers
    MRI/CT Scans 4-27-10
    DC: ACDF surgery needed; considered "high risk" for second front approach surgery.
    Getting second opinion June, 2010 neurosurgeon
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  • Lela,

    It was kind of you to reply to my post. Had some tough two weeks, but with meds Neurontin / Meloxican / Hydrocodone somehow I am finally seeing some relief.


    I'm just getting back on tonight and seeing your message and my goodness you had a big day - surgery on the 8th.

    I realize it may be some time before you may be back on the board, but you have my prayers that your surgery went very well and that your recovery will prove to you that you are finally reversing the intense symptoms and on the other side with a good healing process now.


    Rest well, pace yourself, know that it takes time, but you will begin to see healing is happening and progress is yours !

    Now that I am getting some relief from the meds, I hope to be visiting the board more often !

    Take good care...you are in my prayers.

    ---------------------------------------
    C-Spine deformity Klippel Feil top 3 levels (birth)
    C-2/3 partial hypermobile disc/vertebrae
    C-4/5/6 DDD 3 bone spurs lateral into spinal cord (left body neuropathy, numbness/weakness)
    ACDF C-4/5/6 w/bone implant fusion Mar 1995 (42 yrs old)
    C-5/6 Osteophytes Foraminal Narrowing
    C-6/7/T-1 Severe DDD multiple osteophytes, nerve impingement left/right bilaterally at nerve openings; kyphosis, stenosis, severe facet arthropy C-6/7; severe radiculopathy left shoulder/arm/hand/thumb/fingers
    MRI/CT Scans 4-27-10
    DC: ACDF surgery needed; considered "high risk" for second front approach surgery.
    Getting second opinion June, 2010 neurosurgeon
  • Hi Janelle,

    I was reading your post and got a little confused why they are concerned about you having so many complications from another anterior approach. I myself have had a total of 5 neck surgeries, two of the posterior and the other three anterior. I am need of another surgery but been putting it off, which they will use the anterior approach again along with a posterior approach. There are several members on the boards whom have had multiple anterior approaches. So I am just a bit confused why they say they can't do that approach again. Posterior surgery is actually harder on the surgeon and the patient both. It is also a much longer recovery. If i were in your shoes I would go get some more opinions as to what is going on. Whatever you decide do your research on the procedure and most importantly on the surgeon. I do hope you get some pain relief though and keep us posted on what you decide. Take care.
  • Tamtam, thanks for your post, I appreciate you writing with your experience of multiple c-spine surgeries.

    I was shocked/surprised after an appt. with my ortho-surgeon, who I've had for 7 yrs., after carefully and methodically reviewing my scans saying he'd do an anterior front approach surgery. He wanted me to get a laryngeal evaluation because of previous anterior surgery and his asst. would set-up the appt.

    With delay in getting appt. being out of town, I had to return home and was told appt. was 3 wks later, when I asked why so long, asst. who I know well, had no explanation.

    Then I got a surprising phone call from the ortho-surgeon who I have had for 7 yrs already assessing my c-spine issues for posterior surgery but holding off conservatively because of the highly complex bridging cervical to thoracic with plates and screws.....and yet confident and quite adept of dealing with complex disorders of the c-spine, he does only c-spine surgeries. (few surgeons that read scans well have complex congenital Klippel Feil deformity, scoliosis with fused four levels surgically ACDF, now last 2 levels with scoliosis, bone spurs)

    Anyway the phone call was him leaving a message on my voice mail, saying he had reviewed by studies/scans since my appt. with him 2 wks ago and he has feels its not "in his best interest nor mine to pursue the surgery....that after re-reviewing my scans that he is of the belief the surgery would not bring me a successful outcome" and then ended encouraging me to "seek another evaluation....to get a second opinion".

    It was left in such a way, that I felt he was so resolute that it would be redundant if I would attempt to get a further explanation than what he had given and his assessment/decision.

    I took it to mean that the surgery would not be successful and that the symptoms would not reverse, with more likely permanent nerve damage (no emgs have been taken) he did a performance test on arm,hands, fingers.) - - he didn't want an unsuccessful surgery on his hands.

    So now I am trying to connect to another good surgeon, going out-of-state again, this past 3 wks getting medical records and MRI CT scan reports forwarded a neurosurgeon who can review everything and trust I can get a full assessment, prognosis, establish a relationship with a new surgeon...knowing I have to get to know this guy, even though his bio and experience is highly skilled, still have to get some sense of connection and confidence in trusting yet another hopefully high-skilled surgeon....

    I've dreaded having the surgery that's been targeted for the past 6 yrs as needing (posterior decompression, removal of multi-bone spur complex and fixation of with plates/screws C-6/7 T-1/2 bridging cervical into thoracic (more complex) below already fused C-4/5/6 bone implant + now an anterior surgery for bone spur removal and nerve root junction opening and plate and screws C-6/7,T-1.

    Yes, I have read several posts and see multiple anterior surgeries have been done and wanted to know with what success and/or complications.

    I am losing my hand, fingers, for past 3 months with I guess more advanced radiculopathy. I'm losing the ability to have any dexterity and totally disparaged of having to seek out another surgeon.

    That's the story and I wish it was brighter. Appreciate any insight or ideas you or other multiple surgery survivors might have.


  • MetalneckMetalneck The Island of Misfit toysPosts: 1,778
    with us.

    To answer your question(s) ... I am 2 years and a couple of weks post 4 level anterior and posterior 4 level fusion ... this was a little over a years post a failed 3 level fusion. I like you am experiencing progrssive symptoms on my left side ... Pinky and thumb ach and pain and now numbness along the ulnar side of my forarm up to my elbow. Also pain and ache of my left tricep and left deltoid. From an earlier response about "what to expect I post the following:

    Much like "Alice in Wonderland" or Neo in "The Matrix" .. many of us find ourselves post surgically (or multiple surgeries) falling down the rabbit hole.

    Each day brings a set of new adventures, challenges, and a cast of characters to only be imagined in our wildest dreams.

    I have resolved myself to the fact that unlike the "Wizard of Oz" ... There is no longer a "No Place Like Home" to return to ... that there is no longer a destination but a journey in front of us the will lead to somewhere ... over our painbow.

    Welcome to the journey, strap in ... it will be a bumpy ride.

    Warmest Regards,
    Your fellow traveler,

    Dave

    Keep us posted !!

  • Dave, thanks for your message. So look forward to connecting here and getting acquainted and hearing about what each of you have been experiencing in your "journey".

    I loved your analogy of "Alice in Wonderland" / Neo in "The Matrix" as falling down the rabbit hole with each day a set of new adventures, challenges, and a cast of characters to only be imagined in our wildest dreams!

    ....and how you have resolved yourself like "Wizard of Oz" there is no longer a "No Place Like Home" to return to ... that there is no longer a destination but a journey..." and being unknown.

    it's a perfect analogy and so true each step of the way and journey this has been...and for where it may be going !???

    Nice to not be alone in this "adventure" (oh my) !

    ???'s
    Was wondering what was the pivotal threshold that took you into the surgery progressive/advanced DDD with the obstacles of spurs/spinal cord/nerve issues or sudden trauma or injury with slipped discs, fractures ? Were you able to get any relief from the surgery of symptoms pain/dysfunction and as well has the instrumentation stabilized your spine / cord as you and your surgeon had hoped?

    My radiculopathy and muscle/nerve problems are not new to me (have had deg.progressive arthritis since my teens and in my spine; since I was 40 yrs young at the time of my 3 level ACDF surgery it went "systemic" throughout my body most major joints. The level of radiculopathy and the intense dysfunction is further advanced level of radiculopathy and all branch nerves involved = burning, numbness, nerves "damage" and muscle dysfunction that I am having with C-6/7/8 T-1 is a "new territory".

    What's disheartening, this is really an unknown pathway whether there will be any surgical resolution being possibly not an option (top surgeon saying "not a good candidate" = not good prognosis = success for post-op results. And for that matter, whether I can endure 1 or 2 complex instrumentation surgeries, anterior/posterior because of what is happening, if they can do the surgery? And at what risk and what result??

    This whirlwind /falling down the "rabbit hole" with long duration (2 months instead of 1 wk) of intense pain off the charts, burning nerve pain and shoulder blades, shoulder, arm/ hand) and now as the pain meds, anti-inflammatory bring some relief simultaneously seeing greater disability losing total dexterity, strength wrist, thumb, fingers = losing use of my hand totally is truthfully terrifying....

    Know the whirlwind's not over...I don't have another surgeon, neurologist on board yet to jump in here to give me a full assessment with what's progressed in the pa st 2 months since my other surgeon, dismissed me as "not in his best interest - - not a good candidate for the surgery".....what the h... !

    My journey from first spine surgery and then systemic DD throughout my body, all major joints and having to have intervening surgeries for the destruction, was my "life-line" in this destructive incurable disease...to know well I can't stop this horrible destructive disease...but thank God, there are good surgeons do restore/intervene and even implants and devices to stabilize and bring me back to functioning and being successfully active.

    Fear I'm not facing the same decisions and the same results.... my journey is changing...and I am totally blown-away by where I am going to land !

    But you know...this past 5 days I certainly did not expect this this - - I got a "rainbow" ! finally some relief from the intense burning nerve spasms down arm and hand / fingers, thank God...I guess the new meds of neurontin and meloxicam is finally helping !I'll take this reprieve / plateau, but I fear there may be another "rabbit hole" with those nerves being impinged right and left 2 levels.

    Well...another long post -- hope that's okay. Have to say, this board and connecting here and still being able to type (which my left hand is handling much better today flexing with keys and alot less errors) is a life-line right now !

    Hope you all have a "rainbow" too today !

    Janelle





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