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Being referred back to surgery. (Neck/Back)

Aviatrix36440Aviatrix36440 Posts: 5,904
edited 06/11/2012 - 8:53 AM in Back Surgery and Neck Surgery
Well, today I finished the last test my Neurologist wanted to have me do - NCS/EMG all extremities. My Neurologist is going to conference with my Surgeon of his findings and suggestions. After that, he and I will get together (July 1st), and he is kicking me back to surgery.

In May of 2009 my C6/7 disk herniated hard onto my right exit nerve causing instant pain, loss of function, strength and feeling along that nerve root (triceps). My surgeon at that time felt I probably sustained damage at that time. Surgery stopped most of the pain, but the function and strength did not return. 8 months later had another NCS/EMG and the findings were very close to pre surgery.

Todays NCS/EMG now shows more degradation than my prior study for the C7. The C6 is showing compression again, and the C8 (Ulnar) is a mix from my neck and prior damage from when my Ulnar was trapped at my elbow. My prior fusions (C5-7 / C6 and C7 nerves) show issues internal of the fusion (osteophytes, calcification, stenosis). The game plan as it stands now is revision with the addition of C8 (C7/T1) front and back. No surprise there.

Thanks to the development of Epidural Lipomastosis my nerves at the L5 and S1 are being entrapped much like a disk would do. Bilateral radiculopathy is now moderate due to it. They normally do a Laminectomy to get the material out.

The Neuropathy in my thighs has gotten worse - caused by the L2/3/4 herniations and nerve compression. I'm still trying to put off intervention there, but the look on my Neurologists face, not sure how long I can hold out. Prior MRI (same facility) the disk issues were deemed protrusions, now they are hernias. Sigh.. So possible fusion for the L2/3/4. Fun huh?

EMG wise, I think the focus will be the neck and the Lipomastosis issue first (not at the same time of course). So far my C2/3 has only had slight changes - so I am hoping that won't be on the list of things to do on top of all this. So in a nutshell for the next year or so, revision + at least one level for the neck, Laminectomy L5/S1, and possible fusion L2/3/4. Are we having fun yet?

The good in all this is I did get validation as to why the pain, weakness, function issues etc. Good or bad news, we all need our validations. Well, that's the update from my oral brief I got from my Neurologist today.

Brenda "I'm an official mess!" (G)
PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.


  • You are a "mess" !!

    You're right, when we're suffering so much, we need validation on the cause of the pain, etc.

    It's going to be such a looooong recovery time for you with the revision surgery and C8, and then the lipomastosis and lumbar. We'll be here to give you a >:D< when you need it.


    XLIF L2-4 20.8.15
    ALIF L4/5 2009
    Laminectomy/discectomy L4/5 2008
  • I'm sorry to hear you have issues with your neck and the lumbar area and you'll be having surgery again. Thinking of you and saying a prayer. You're such a great supportive person to everyone here and we're here to help support you through this. Hugs. Charry
    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
  • Lol! After the EMG portion was done and my Neurologist was giving me the "Cliff notes" as to what his findings where, I said, "So, I am your official mess?" His response was, "Yes, you are a mess!" This Neurologist has been spot on with me over the years, and doesn't sugar coat anything - which I like.

    The L5/S1 is the only part that I can't point towards the helicopter crash, or 2 hit and runs over the years. Totally out of left field as they say. :)

    Thanks much Trish, appreciate!! *HUGZ* back to ya!

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

    Thanks very much. You too are very supportive to all on here as well. :)

    The neck 'redo' and the upper lumbar don't totally surprise me, as they were issues after I crashed. L5/S1 I don't get, but "stuff" happens I guess. In thinking about it (post EMG), I kind of wish he went a little deeper on the L2/3 nerves. I know the L5 (and my 3 middle toes have been going numb for a while) stood out big time during the test. That kind of caught me off guard.

    Support wise, even with my mess, hope to continue helping where I can. It helps me sometimes as much as it helps others. :)

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • So sorry to hear that you have a few surgeries in the near future! You have been the best supporter of my various stages of "freaking out". Please update us periodically. Many hugs and hope the surgeries will be the solution to all problems! >:D<
    2011 ACDF C5-6 for Spondylosis with Myleopathy
    2012 L4-5 herniated disc and hernated disc at C4/5 2013 Taking Amitriptyline for headaches
  • Not good news to hear of your ongoing problems, but at least you now have a reason for your pains.

    I so hope that now there is a plan, that untimately that plan will prove to be the solution.

    That helicopter crash was in 1985, so over 25 years ago!
    If you are anything like me, you are glad that you got away with several years of fairly normal life before struggling so much in pain.

    Gentle hugs Brenda >:D< >:D< >:D<

    Just remember, you are not alone. You have lots of friends here who understand what you are going through and are great at listening. :D

  • Brenda, what can I say? As I read through everything you have written and tried wrapping my head around it all I began to think in a different way. I try staying upbeat and I have never been one to compare myself or anyone else to other people and their pain or issues, but in this case the seperation was clear. I am so very sorry that you are going through this and having to face yet more surgery(s) in your future. Please know that the very best of my thoughts are with you and I do hope and pray that you get the best out of the operation/s. That you have relief, a respite and some peace from all of these spine problems. Until then I hope you can continue being optimistic.
  • Lili,

    Thanks very much for your wonderful words of support. My neck wasn't a surprise, just had to get tests to thoroughly confirm it wasn't right. The upper lumbar has been about a year or so, so still going to try and hold off on that one. The L5/S1 came out of left field, so that was a total surprise.

    Not thrilled, but the positive side of me is happy that there are answers. That takes a huge load off believe it or not. As things update, for sure I will update here as you all are a wonderful 'double edged sword' so to speak. There for me, and me there for you guys!! :)

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

    I fully agree that crash could have been an "instant spiney case" from the get go. For around 17 and a little years I had what I called chronic - acute pain. Meaning I would have recurrent flares, but exercise, chiropractor, aqua therapy etc., knocked most of it down to almost gone, but I knew it would come back. Then around 2002 it moved to the chronic side of the house, so no real complaints on my side of the house! (G)

    Having more conclusive answers definitely helps tons in the mental 'control/understanding' side of the house. With some of the changes (the need of a cane, the constant numb 3 toes, badder issues) now at least I can understand why and where that mess is coming from. Not thrilled, but oddly happy to know the 'whys' as they say.

    I know if I snapped my fingers and all of this was "fixed" right now, much of the damage is done, and will stay. The funny part is even as close as a year and a half ago, I was one of those who thought spinal surgery "fixed" us! I've now come to realize it is more of "restrict or stop further damage, this is the new you" type of thing. I think that helped give me back my optimistic side. :)

    Thanks Ms. Jelly, you're tops!!! *HUGZ*

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

    Unless I get a call sooner, I should be seeing my surgeon early to mid July. A part of me is hoping the neck is first in line again. I've lost enough of my right arm, and with the left getting fussy, I'd rather get that stopped.

    I then think of others on here who have had multiple surgeries and too revisions on their necks, and I shudder. I know "the devil" I have now, but don't know his replacement! (G) I do know like many the success stories go off and live their lives, and as such the rest of us are here to support, share, listen and read. I get that, but that unknown devil. (G)

    Thanks very much Robin. I guess you all are stuck with me! Hehehe...As for optimism. I think now having more solid answers, that part of me will believe it or not, be easier to maintain. I am 90% of the time glass half full, and only 10% half empty. :)

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • Sorry to hear about your news!
    But also glad that they have confirmed the problem areas, and will have a plan to try to correct and alleviate your pain issues.

    But this ain't your 1st rodeo, so you know what to expect.
    And the word "mess" does sound nicer then "damaged goods".

    Best of luck to ya, and keep us all posted.
    Everyone here is thinking of ya, and hoping the best.
  • Jim,

    You're a sweetheart, you do know that right? I do like 'mess' vs damaged goods, although damaged goods isn't too bad either!

    Once I know the actual game plan of repair I can then get my brain around the recovery times. The surgery is the easy part as I am asleep! (G) I know for the neck I pretty well know what the after affects and recovery will be like, but guarantee you I will be asking tons of questions on lumbar recovery!

    My hubby is designing a shallow 'steps' ramp like entrance for our pool as I can't get up the ladder now unassisted. If it comes out like he drew on paper, it will be pretty cool. Hopefully we can start swimming this weekend. We cleaned the pool, shocked it and balanced the PH, so temperature (water) wise, hopefully back in the pool soon!!!

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • YES! Get in the water, get some natural vitamin D built up in your body and let the sun & water kiss your skin. If the wind blows at your back on a sunny day in the pool you will have all the elements to make you stronger and prepare you the best way possible for your up-coming surgery.

    I know you mentioned it being July 8th, oh..ok early to mid July, but that's not too far off. The good thing is you have a heads up and time to prepare.
  • Robin,

    Just had blood work for my vitamin levels, and all are good, and many high. Fortunately for me, I am a "milk-a-holic" so D is right up there. Adding more is just a plus, plus in my book! I am just hoping since the temperatures are suppose to be near 90 for the balance of the week and sunny, the pool water will have warmed up enough for me to get in there. I miss my pool time!

    That's the only negative about an above ground pool, very temperature sensitive and changing. I think the water helps my neck and thoracic more than the lumbar, but the lower lumbar is new, so I guess I've find out soon if it gets a break with my water activities. :)

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • Heya stranger! I haven't been around for awhile, but have thought of ya'll so often!

    I am so sorry to hear of your ongoing difficuties, but I am pretty sure you may become the first "real" bionic woman! WooHoo!

    I think your lumbar spine will appreciate your pool, I know mine does!

    Hang in there my dear! My thoughts and prayers are with you! Shari
  • Hey you!!! Welcome back, long time no see!!!

    My hubby figures there has to be a full spine replacement system out there somewhere! (G) I can't wait to get back into my pool! Watching the weather now, and temps wise, hopefully Saturday, me and my mess will be in the pool! (G)

    Shari, thanks so much for your thoughts for me! Big happy *HUGZ* :)

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • Brenda, reading your post makes me think my issues are not that bad after all. I don't know too many L & S people.

    When I first read your post I was like "well why are they operating on her". I don't know how but somehow I have missed how involved your back injury is.

    I knew about your neck injury and all that in details.

    But thought your were "just"(ha like that would be good - not!) a neck patient.

    If you don't mind I would like to tag along with you pretty close. Totally selfish reasons I admit. :neutral:" alt=":neutral:" height="20" />

    Well not totally selfish, as I do like you & care about you :hug:

    I have been told no one can help me, but my PCP wants me to see a new nuro who he thinks can help me, so I want to learn as much about this surgery as I can.
    L1 - S2 "gone" useless in 1 way or another. DDD. RA. Bone Spurs. Tons of nerve damage/issues. Stenosis. Both knees replaced. 50 yrs old. I had a great fall (hence my user name) at age 41 and it has been a domino effect every since.
  • Tag along as you put it, is fine with me. (G) I guess lucked out in that I should have been "done" back in August of 85, but God or which ever power is up there had other plans for me?

    I was 'decluttering' my house of stuff and found the original spinal assessment of my crash, and short of one level (T12/L1) this doctor nailed my strained, sprained areas in my spine. The L5/S1 *I* don't think is tied to it, the rest....yes.

    And yes, on here I've been pretty much a 'neckie' as I have been holding back to see what all the testing had to say. I am thoracic as well, but non surgical, so I suffer that pain in silence knowing they won't fix it (and I really don't want them in there!!!). I just wish deep in my heart that Lyrica would help me there...it doesn't.

    The helicopter (short of adjacent level failure) caused me C5/6/7/8 T8/9/10 and L2/3/4 (L5/S1 I feel is unrelated). C2/3 is there too, but so far no big changes... My spine sucks, I know that, but in the same breath I got 17+ years that many don't have with such an accident. Yep, I am a half full cup odd ball. :) Thanks Ms. Beth... *HUGZ*

    As for tagging along. No problem there. I know much of my nerve issues are permanent, but hoping whatever surgery they decide on (should I agree) will stop the progression. Grrrr...typing gets frustrating when the fingers don't behave. (Hate the back space button!!) (G)

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • So sad to hear that you have multiple surgeries coming up in your near future, and have been dealing with these issues to different degrees for such a long time.

    Happy for you though that you are now getting a plan of action.May this bring you resolution to the pain that you have been dealing with. You will be in my thoughts and prayers and wishes for solid fusion.

    Will be hoping for continued nice weather where you are so that you can use your new ramp and enjoy the lovely water in your pool.

    >:D< Karen
    >:D< >:-D< : Karen
    L3-S1 herniation and bulges, stenosis, mod facet,ddd,impinged nerves,coccydinia
    discectomy/lami July 2011-unsuccessful
    adr L5-S1 Feb 2012
  • Reading your signature, you have a lot going on yourself!!! Mine is just spread out is all! Hopefully you will find a surgeon who can help you out! Wow!! 4 months from 49 here....

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • and I know you saw what was coming for many months now with your ENT finally able to fully assess your fracture/wing hardware issues and what was occurring....

    getting confirmation from your good neuro that it's best to proceed with surgery leaves "no stones unturned" and I know gives you the ability now to move forward without any uncertainty....

    you having a surgeon appt./date set already, is this a surgeon is recommending and doing a direct referral?

    Heart-thoughts are with you as your reach this phase now, you know you got this Spiney Warrior Woman fully supporting you all the way, as we both have = = always >:D<

    And as we both knew, we both have same levels needing intervention, Spiney Twin :( C-5 thru T-1/2, and walking the tough walk of nerve damage arms/hands, advancing bi-laterally, we certainly without question are clearly interventional surgical candidates. :> We share the extra concerns and of it being "second" (revision: surgeries with it being 3 levels immediately above for me and 2 levels for you - - ACDF's. It will be interesting to see what instrumentation is assessed by your surgeon.

    Well, Spiney Warrior Twin, I know we are walking on a difficult path, but I pray as it happened for me in five surgeries - - I am knowing the best way to go into this is once it is known what has to be done, having an excellent surgeon on board with full assessment and prognosis, the surgery goes as well or better than expected and the outcome of healing does as well !!! O:)

    I know we know the risks, the guarded prognosis that may be there, but the choice is to "intervene" the advancing destruction and damage that preventing our spine, cord, nerves and muscles that are vital to our function and preventing major permanent loss and disability.

    Choosing to trust all that unfolds in the coming weeks, with pending serious major C-Spine surgeries, that we are both lifted with clarity, assurance and a courage to move forward with the very best surgeon having the best possible plan to reconstruct and restore our spine levels allowing ua to recover, heal and restore what was lost.

    Rest well, dear one. More to come...

    I'll PM you tomorrow, have eye appt. in afternoon -- we can :-C when I get home late afternoon/eve.

    >:D< Spiney Warrior Woman >:D<

  • Hey there woman, so many issues! I know you knew (aside from the L5/S1 epidural lipomatosis - which was out of left field) what was going on and where your pain & weakness was coming from, you are very in tune with yourself. But it is still shocking to actually get that validation because of what lay ahead...... surgery, surgery oh & another surgery... sighing :-( I am praying for you Brenda.

    You are an amazingly strong woman and I know this has to be hard on you, its hard for me to just read it. Throughout your thread you mentioned "getting your head wrapped around this" yes Brenda, you do need to process & absorb all this, its a lot! You just got yourself a 1st class ticket on the crazy train! I know you've been there before, but surgery is not an easy ride, as you know. You know where to come when you have those moments, hours or days that you feel down, nervous, need a laugh or cry, or just to vent or even through a pity party - right HERE, Brenda! We will ALL be here for you!!!

    Keep your glass half full Brenda, you have a super team of amazingly talented doctors, a supportive husband & of course us. One day at a time and I agree your neck should come first, (get that wing thing out of there), your neck will need to be stable to endure the lumbar surgeries & recovery.

    Very gentle hugs (dont want to hurt you) & lots of positive energy sprinkled with prays.

  • dilaurodilauro ConnecticutPosts: 9,865
    Its a good thing that you are a strong individual and from what I can see, you can deal with just about anything.

    Lets hope for some sunnier days ahead
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • Nodding... I have finally gotten more information and as such, more validation as to what is going on. Sorry, dang fingers are NOT behaving today....

    My guess is they are going to hit the neck first, then the lower lumber and the next. I don't know yet the route of priority (argh, I HATE the backspace button). From what nibblets I got from my Neurologist, all the hardware would come out, and new stuff put in. Dave (Metalneck) and I had a long voice chat, and being he's been in this boat, most likely they will take all that junk out, put in a cage (full corpectomy) and lock it all down. This bites, but I can deal with it.

    The back (2 surgeries), not sure how to deal with that yet mentally. I tend to stay "glass half full", but the brain isn't always on board with those thoughts... :)

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

    You're good people for sure!!! I am a bit bummed, and I will admit, letting alcohol in to ease things - I think what I like about it is I can 'see' the buzz before it happens vs taking Oxy.. I am getting my brain back to reality, so I guess I needed it..

    I think the L5/S1 kicked me into left field of emotion (dang back space key again)!!! I was cool with the neck and the upper lumbar, the lower tossed me..,

    Thanks so much Virginia, I am trying to stay positive, just hard sometimes!!! Big *HUGZ* back to ya woman!!!

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • I'd love to say I am strong, and yes comparatively speaking, I probably am, but there are times I feel like a weak mouse in the corner of the room! This whole mess has me down, and yet up in that I have answers, if that makes sense? The whole pile just bites.... Thanks so much for your support!

    [edit] Gonna sneak off as the tears are actually flowing, sorry, this crap does get to me at times... need to let them. Off to nap time....

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • You are an amazing woman with such incredible strength. As bad as you have felt this year and knowing how your MRI looks, you have always been our spiney cheerleader...and for that I can't begin to thank you.

    I'm so glad that your doctors are working together. Continuity of care is vitally important for you to get the best outcome from these future procedures.

    Are they going to do your anterior/posterior neck in one procedure or in stages?

    We are all thinking good thoughts for you...


  • As far as I know for the neck, it will be anterior and posterior for the redo + at least one level. The L2/3/4 has not been fully discussed on how that will go. The L5/S1 is fairly straight forward.

    Hehehehe...spiney cheer leader. (G) Glad to be able to cheer where I can!! I think some of our RV trips just got moved on the calender! Grrr.....

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • Now I'm in a bit of a better place...let the alcohol in, it let me rest/sleep, now coming back to my "normal me." I hate taking pills, so yeah, I let a cocktail or two in as a replacement.(G)

    I am not thrilled with all this, but I am starting to come to terms with much of it. It is bad enough to deal with "one" area, but I get the trifecta of 3.... My brain is still spinning on the info, but I think it is getting in there for the knowledge base as they say. I still want to scream, but what good is that going to do? Grrrr....


    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • You are in my thoughts and prayers as I read your story...I am just a little over 4 wks post-op and you are one of the people who came to my rescue on my posts to let me know I'm not alone...so I'm letting you know...your not alone and are in ALOT of peoples thoughts and prayers...as if being a neckie wasn't enough right?? Even though the neck is fixed...I still have days when the tears flow...I can look at a picture pre injury and start crying...best of luck and we'll be right there with you...
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