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Appt with NS - New Insight

JoydancerJJoydancer Posts: 463
edited 06/11/2012 - 8:47 AM in Neck Pain: Cervical

Had my appt with an NS yesterday to get second assessment on C-Spine C-6/7 DDD kyphosis and onset of nerve pain down my shoulder/arm/hands and MRI CT scans showing narrowing space at nerve root 7/8, as well as new changes of deformed thecal sac/spinal cord.

(It's been 5 months since OS assessment and surgery was taken off the table his opinion that prognosis not good, risks & complex junction c-spine into t-spine surgeries: anterior & posterior).

In relaying to the NS my onset of intense symptoms of radiculopathy (pain shoulder blade, upper mid-thoracic and pain in left arm/hand) it was interesting of where came out of the exchange with him - - when the ESI nerve block injection and he questionned me about my severe reaction and the nerve damage I have in my ulnar & median nerves arm and severely disabling my hand.

Re: ESI Nerve Block Injection = Nerve Trauma Damage !

Well it appears and from what NS said e-ufrom the intense reaction during the injections and severe episodes of electrical nerve spasms and numbness throughout my arm/hand/fingers WAS NOT just a "typical reaction" (the PM Dr. wrote it off as) and most likely because of the rapid muscle decline and atrophy in intrinsic muscles/ligamentsht of my hand/fingers in what he said is a rapid sequence of what I called "episodes". He said that it was a "very short period of time to have so much nerve dysfunction/damage" and that most likely it was "direct trauma caused by the injections = nerve damage" !!!!

OMG!! soooo that means this C-spine compression may not be the whole source or may not even be causing the sudden intense radiculopathy in 12 weeks = nerve entrapment double crush suspected.

I am....well I am angry... because the OS Spine Director wrote-it-all off as typical reaction and I won't go into what was done in the following month after that !!!

And now it's very clear to me not to be passed off as secondary nerve entrapment caused by already compromised nerve root in C-Spine and what ensued after that - - I am livid and totally dismayed!! I am grieving and trying to detach with this new discovery/confirmation...

Hope to know more from CT and myelogram tests to be done next week. Thank God this NS was honest and was willing to be a true physician and fully assess what most likely was and is happening now in my arm/hand/fingers.

Now with all this coming into focus, much to still accomplish and question, what can and will be done to hopefully recover my arm/hand (very questionnable for what has happened) and status of severe stage of pathology nerve damage - - more neurology, neurosurgery assessment is all I know right now.. more diagnostics and I can't go into the subject of the OS negligence...must see where I am now, what needs to be done or what can be done.



  • Janelle,

    Am I reading this right? Instead of Radiculopathy from the C-spine, you instead might have sustained permanent damage from the ESI shots, and as such now possibly Neuropathy from them?? I only had 2 in the series of 3 like 3 years ago - didn't work for me, so never had them again.

    Hopefully the CT and Myelogram will yield more information for a better picture. So sorry the news went that way. Did he offer any help *if* indeed this diagnosis bares out to be true? Man... big time bummer. So sorry. Gentle *HUGZ* :?


    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • You know....I was just getting ready to log-off...I'm drained, got to turn in and get hopefully some good sleep tonight (bed is pretty good, switched to different hotel) -- but not home!

    Yes, the verdict is not good what is worse is the travesty of what ensued after that, all verrry clear now for what unfolded at the hand of PM and the OS dismissing.

    Well my hand is past gone took me 2 days to get that post written lol! & other posts re: Gathering - - it was good to have something to positive to focus on vs whats now coming to light.

    Thanks for your ((hugs))

    p.s.will e-mail u

  • Janelle,

    I thought about your post after I posted - had to log off, walk around, stretch etc. (G) If it was me getting that news, my brain would look at it (due to the shots) as kind of "induced Neuropathy!" Before you let your mind go fully crazy on thoughts...nodding, I know Janelle, you are racing right now. *HUG* Lets wait to see what the rest of the tests reveal, okay?

    Also, you know I am here if you need to email, or talk on the phone. Try to rest tonight, *try* and put the so far..bad news out, and get some rest. Chat with ya soon my friend. *hug*


    ----> Extra *HUGZ* <----
    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • Just woke up one day in sever pain. After 3 1/2 moths MRI and no relief from non invasive treatments( loss of benefits), I'm off to surgery. My MRI:
    C4-C5: Mild disc osteophyte disease causes mild left foraminal narrowing.

    C5-C6; Moderate left disc osteophyte disease is present, with near complete effacement of ventral CSF and possible slight mass effect upon the left anterior aspect of the cord. There is sever left foraminal narrowing.

    C6-C7: A broad-base disc osteophyte complex is present. Trace left foraminal narrowing present.

    Bony alignment is abnormal, with loss of normal cervical lordosis centered at C5-C6 level. Minimal disc height loss evident, mild disc height loss observed at C6-C7. Anterior osteophytes are observed at the inferior aspect of C6 and superior aspect of C7. There is diffused disc desiccation.

    I have my pre-op apt on Oct 12. It's seems that the plan is only to fix C5-C6. However, it"s seems like C4-C7 should be fixed since we have to go in anyway. As well, as fixing only C5-C6 would put more pressure on the others. Does anyone have the answer to my dilemma?

  • Hi Dizja - YOu need to start your own thread if you want to get answers. No one is going to see your post in this thread.
  • Wow!! I'm trying to take in all that you wrote. You know I can understand finding out that a procedure that is supposed to make you better actually caused more problems.

    Are you done with that doctor for now and heading home? Or are you staying there for the CT? And is he going to follow through with you?

    Hope you got some good sleep. Talk later.
  • Hope they are able to pinpoint what they need to with your upcoming CT Myelogram. Are you having those done in the same place this new NS is, or back home where your other doc is. Hope you don't have too many problems traveling and make it home without sending your pain through the roof. How long do you have to wait to get the results? Is this new NS going to give you a recommendation based on the findings?

    Best wishes,

  • Brenda, Kris, "C",

    Thanks for you thoughts and kind support.

    Met with NS again on Fri. discussed tests/diagnostics to do and how those have to be done in order to do full assessment for C-6/7-T-1/2 surgery.

    Worked it out that I'm returning back home to FL and have test/diagnostics done by Neuro team he recommended to me one a colleague he's known for years (so that was good). Much better to do it that way good be several weeks getting that accomplished and it would be better to do from home base for sure!

    Re: Neuro Radiology/Tests

    NS said most probably first thing to accomplish/they'll do is myelogram and a CT. Depending on results there are other specific neuro-radiology tests if necessary for specific nerve branch assessment.

    Re: C-Spine-T-Spine Surgery
    Need to confirm initial source of neuropathy in arm/hand and compression of 6/7/8 nerve root junctions, MRI and flexion x-ray shows more narrowing on both sides left more than right (bi-laterally) most likely compressing nerve root branching into brachial plexus.

    Re: Nerve Branch into Arm
    Then assessing any other compression / entrapment from nerve root thru brachial plexus where it branches into my arms (especially left arm here all the radiculopathy & nerve damage is going on).

    Re: C-Spine T-Spine Surgery
    NS agrees with first assessment &MRI-CT flexion x-rays from Apr. advanced DDD with the multiple osteophytes and kyphosis going on it's compromising nerve roots. Thecal sac being deformed is mild, however, updated radiology needs to look at that as well.

    Before surgery can be assessed with prognosis, etc. we need the full picture of nerve branch problems and integrity of nerve roots 7/8 and brachial plexus into the arm.

    Re: Coordinating Tests/Timing - Elbow/Hand Surgeon

    I'm hoping to accomplish this asap ! Or it could very well mean the surgery for elbow and hand is cancelled (? depending on neuro assessments/tests)
    hopefully, just re-scheduled. It would be best to know full picture of brachial plexus/ulnar/median nerve assessment to confirm double-crush/triple crush syndrome prior to doing those nerve/ligament surgeries.

    Soooo I'm heading home, did 6 hrs of driving today to pain level is not bad at all !! My Town&Country Minivan seat is high-back, good lumbar cushion and have a small neck cushion once I get on the interstates. Done this trip well with stops along the way, walk my ShihZhu and Lhaso giving us nice breaks about every 2 hrs at rest stops. Only planning on doing 5 hrs to Atlanta, GA tomorrow and cruise in to FL and home on Monday!

    Will be setting up appts. with Neuro on Monday - - hopefully appt. within a couple of weeks (fingers-crossed).

    Path has been requiring much since March/April diagnostics / complex 2 surgeries assessed / surgery delayed by OS / PM nerve root injection / major neuro-spasms nerve damage = loss of use of arm, hand, fingers / back to square one = more diagnostics / complex neuro assessment pending !!

    Thank God, I have lived my life much wiser these past 20 years of living one day at a time and knowing to trust the process...and even seeing the unknown could rachet up the fear BIG time!!
    I would be finding this totally impossible and going NUTS !! LOL!

    Well, gosh you know my fellow Spineys, we get very Wise and very good at knowing how to Surrender (that's the big Surrender !).....don't we !! Ah yes, trusting the process and the path unknown 90% of the time !!! :)


  • Sounds like you have a very well thought out plan of attack. I hope it all goes as smoothly as possible. Sounds like a lot of driving. Did you have to make the trip by yourself? Of course having the furkids along helps tremendously as long as the hotel allows that type of "child". We are headed out for a couple of days and it's costing us $50 a night for our 25 pound dog to stay in the room. Sheesh! It is great that you are able to access the Internet to keep us posted on your status. That's one of the benefits of traveling these days with the advances in technology.

    Anyway, I'm just rambling now. Drive carefully, enjoy the rest of your "trip".

  • Thanks "C",

    Yes, the trip has gone well, I'm used to this these trips and have fav' places motels/hotels for the two-days on the road going and back. I'm a solo woman, and enjoy the freedom and my own independence :) when to wake-up, pack up the car, stop for breaks, movies to watch...it's good!! I enjoy those I meet "no such thing as a stranger" - - - interesting people & unique conversations !

    My fur-boys Gizmo & Brittany know the trip to St. Louis quite well, moved south to FL in 2002, have made at least ten trips (family events / medical trips). They learned to be good travelers since they were 6 mos. old!

    Re: Hotel/Motels for Furkids

    Red Roof Inn depending on the city/town for the most part is very good, nice rooms, rates and I'm a Redi-Card member, repeated same RRoof, they check me in a many times don't do the $25 charge (for both dogs, they're small)! (don't tell corporate!)

    In my travels, have found more motels/hotels that are pet-friendly, wanting to cater to so many people with their dogs.

    You might try a Red Roof and see if a Redi-card (free sign up) and asking what the pet charge would be for your big fur-kid, they may just give you a break!

    Re: Internet Access
    Some of the Red Roofs have internet in lobby (and complimentary coffee/rolls/cereal breakfast too)
    But when I got a new computer this time, I got a laptop I could have it on trips & access in my
    my room.

    Well, I'm just 3 hrs from home - - get to sleep in, nice slow pace getting in to FL & home. I'll be calling the Neurologist the NS recommended to get an appt. - - I'm anxious to get this third-phase another "chapter" of diagnostics a rollin'!

    Good of you to connect, "C", & nice to get more acquainted too! Hope your trip goes well and nice your fur-kid is going too :) - - just got to get a better rate for your fur-buddy, who is well-trained, has a conscientious owner who pooper scoops and housekeeping would never know your O:) buddy was even there ;) - - right?!!

  • Thanks for the info on Red Roof. We went to a real fancy resort, so really had no choice. It worked out great and we could walk out the sliding glass door onto a grass bank that dogs are allowed to use. Also had a glorious view of the river valley and fall colors emerging. It was worth paying the extra $50 and it was fun to parade our dog through the halls and common areas. Being the off season, we had one of the few dogs there so of course he was "an item".

    Keep us posted on how things go with setting up all your appointments at home.

  • Did you ever make it home? Any luck getting your appointments set up?

  • Hi, "C",

    Yes, made it home on Mon. afternoon.

    Working on appts., it's working out that the Neuro will be after I have MRI's, CT's, flexion X-rays done. The NS who is now going to see me decided to have updated scans done, current ones are now 7 mos. old. That's fine by me, it'll me their equipment, their radiology team. Trying to get scans done in am with late afternoon appt. / since it's 3 hr drive, otherwise it'll be scans day before, stay overnight.

    My NS in St.L. recommended a Neuro and a NS here in FL, the NS has moved and is now heading up pediatric complex spine department surgeries, so they suggested another NS, his bio's look good and appears to be equal in experience with complex spine surgeries. So trusting the shift in direction.

    Hoping to know hear tommorow from NS's asst. on the date.

    So it's moving forward ! :)

    How was your excursion to beach? Hope the weather was great and you fur-kid and you all had a great time!

  • That's great that things are working out for you closer to home. It is always a lot easier to deal with things when you can access them easier. A 3 hour drive versus a 3 day drive is a lot easier to manage.

    The excursion was fun and our poor little guy wasn't quite certain what to think. He was so traumatized by the move from Japan, that anytime he is away from home or places he knows, he gets really nervous. We took him n some long hikes and tired him out and he did fine after that.

    Keep us posted on how the tests go.

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