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8 week post op 3 level (4 vertebrae) ACDF w/ plating&allograft

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Posted 2/10/2014 5:16 AM (GMT 0)
Hello all,

as it says in the title I am 8 weeks post op 36 years old and all of my levels were cord compression, no foraminal stenosis or compromised nerve roots. My issues were pretty much full body, primarily anterior, and from hospitalizations etc I have had over the years I think it is my Vegas nerve that has been compromised most. I am prone to syncope and motion sickness where I wasn't before. This is all the result of a half million dollar motorcycle accident I had when 23.

At this point on a normal day I can shower or shave, rest, maybe brown a pound of meat in a skillet. Nothing much more than 15 minutes erect with at least an hour reclined. That's if I don't fight through significant pain. If I do as I have for many years, I can hold a conversation standing for between 30 minutes and 2 hours. Then I must sit down.

I have a history of nonunions and the doctor dismissed this saying that my 6 week was fine. . .but at this point I am really wondering. I have a friend that had the exact same procedure on the same levels C3-C6 and he has been driving and doing basic stuff since 4 weeks. . .he did not have cord compression though, just foraminal stenosis.

What do you guys think? I cut this short and am copying more details below for those that care to read.

Post Edited (therabidweasel) : 2/9/2014 11:10:43 PM (GMT-7)

Posted 2/10/2014 5:42 AM (GMT 0)
OK, more details. . .I'm sorry I'm so long winded. I have been cut off from the world for 8 weeks!

I had planned to have the surgery over the holidays as pain etc had been getting worse, after avoiding it for several years hoping for decent and multi level disc replacement. Suddenly my pain and symptoms spiked and I became unable to sit or stand erect for more than a few minutes. I had interviewed 3 doctors, each suggesting a different approach and I picked a very credentialed neurosurgeon at a fancy New England hospital who made the argument that ACDF would help restore lordosis in my neck and offer a shorter recovery time. At the time of my disability I was 9 days into a new job and went with him, he made the most sense and seems to be highly regarded. I canceled 3 remaining appointments and waited 6 weeks for surgery.

I have been in a soft collar 24/7 all 8 weeks and will be for at least 4 more. My surgery was 6 hours in the OR. 6 week checkup looked fine and I attempted to return to work on week 7. I'm on 5/350 percocet, 1200mg gabapentin, 10mg baclofen 3x each daily. Yes gaba is off the charts, I've been on it forever and it is the only drug that quiets my nerves...which still attack me several times a day. Basically extreme full body pins and needles up to my tongue and gums. So anyway, return to work at 7 weeks and I was able to eek out 24 hours of work in 4 days, but that's with 10hrs at work each day because i cannot drive due to collar and drugs.

When i returned for the second week i tried to work in a lab day 1...basically adjusting little widgets on a table for 10 minutes then up three flights of stairs for some office stuff...did that back and forth for 8 hours with a few rests in a really nice chair with no neck support (steelcase leap). The next day I had to take off and at that point my bosses required that I get re-certified by my doctor. They were particularly concerned that I was fighting through a lot of pain. The doctor now said I should not be fighting through so much pain and that got me shut down completely from work. I don't blame work a bit.

I had a long conversation with the PA about the difference of fighting through pain and fighting through the neurological symptoms which I have had to varying degrees for over a decade. I also questioned why he would recommend that I can stay at home and do home things between resting my head in a lazboy but not go to my office job (no lab) and get a very good chair with neck support like an RFM Verte.

He said that I was missing the big picture, little things like riding in my long commute and stupid things like using the stairs where weighing down on me. My biggest problem is they told me I would be working in 6 weeks, that is what I told my brand new job. I now cant imagine working in the lab even one month from now and I am burning through all of my cash, even though I have great benefits and STD. . .but it doesn't even cover half of my mortgage. But back on point, it kinda looks like I lied to my new company now, I'm suffering mightily, and want to make sure others are aware.

Anyway, long story longer I think 6 weeks for a real 3 level (4 vertebrae) ACDF is an offensive LIE if my experience is typical. I spend my days alternately praying for death and praying for hope (hyperbole). . .and I'm somewhat between religions just now. I feel tenuous at work even though they assure me that I am now a "protected class." Does anyone think that I could have some complication? My friends surgery was done as an emergency and not by the class of doctor that I supposedly selected. His recovery has left me in the dust and I am the one that is accustomed to living with pain.

Thanks for reading, Steve/TRW.

Post Edited (therabidweasel) : 2/9/2014 11:29:11 PM (GMT-7)

Posted 2/10/2014 6:18 AM (GMT 0)
One more thing, I know you mean well but please do not give me the catch all "everyone is different." Of this I am well aware. I believe it is my lot in life to serve as a warning to others, so this is the main purpose of my post.

Secondarily, if someone out there can comment on the relative duration of a 3 level or more ACDF that went well, no complications during surgery, performed supposedly by one of the best in the world I'd appreciate it. Again, I know you mean well, but <3 levels really do not seem to apply much to my situation, even my scar seems different, it is the length of my neck and vertical (which makes it a JOY to shave). . .but again I REALLY DO appreciate your time and consideration.

Post Edited (therabidweasel) : 2/9/2014 11:26:19 PM (GMT-7)

Posted 2/10/2014 6:39 AM (GMT 0)
Hello & welcome to the forum. I cannot begin to imagine anyone returning to work 6-7 weeks post op from a cervical fusion, That is just nuts nuts & asking for trouble. Things may look healed on the outside but they are far from being healed on the inside. Sure these drs will tell patients oh you will be able to return to work in 6 weeks. That is nothing more than text book talk, its just worthless.

I do however think even at 8 weeks it is just too soon to know whether or not your surgery is a failure. At 8 weeks your fusion is far from being solid, it takes a good year for a fusion to become solid, sometimes longer. I would not compare myself to my friend either, everyone does heal differently whether you want to hear it or not. Not only that all drs have different techniques even in surgery.

Usually if a surgery is not a success we see people in excruciating pain that are visiting the ER because their pain is so out of control. That is not what I am hearing from you.

You mentioned being on Gabapentin at 1200 mgs. That is not a real high dose, was not sure if you are concerned thinking that was a high dose.

We do have a new member that is getting ready to have a 3 level fusion too and several other new ones that have had 2 levels done just recently.

Anyway, I wanted to pop on & say hello & welcome aboard.
Posted 2/10/2014 9:28 AM (GMT 0)
Hi Straydog, thank you for your response and extended reading. ;)

1200mg 3x a day is not a high dose. . .did you see the 3x? That's 3600mg/day. The last PDR I read said "even up to 2400mg/day was well tolerated". . .and that was as high as was mentioned. Do doctors prescribe more?

"excruciating" pain. This is where I always chuckle. IMHO, no one in true "excruciating" pain is typing on this forum. People in excruciating pain in my book are incapable of speech, they cannot make coordinated movements. I cannot speak or make coordinated movements like sitting down using my hands when I have an attack, which happens several times daily for 1-10 minutes in duration. On the 10 level pain scale that is an 8 for me. In between I'm at a 5 or 6 depending on where I am in the med cycle. On my scale people cannot describe a 9 because they cannot perceive their surroundings, their only sense is warped one of time, but I guess I just described it didn't I? And no one maintains a 10 for longer than a few seconds because it will knock you out, period that's the definition: what knocks you out. . .that is my pain scale just to be clear and I've lived each one. Where excruciating is on that scale to you I don't know, but I'm as high as one can go and perceive their surroundings, and even that can be iffy as I do lose vision sometime. I would certainly have to have an ambulance requested by an observer. This is where I was before surgery, so I cannot tell. I am definitely not better. I don't go to the ER because I've been under pain management for a dozen years. If I need drugs I can get them in my chair at home. The ER cant do anything more for me.

Hey I'm not trying to be a jerk, although I am snarky because I hear people in the pain clinics casually say they are at a 10. AND If I am not on a high dose of gaba I want to be on one, but that dose raises the eyes of doctors in the 3 states I come from. I don't know if I could get someone to prescribe higher around here. I'm in a lot of pain, I can deal with it, but that's all I can do and I WILL take more gaba if that ends up not being a high dose because my pain is largely cord based.

I think you might be right though, it just works out differently for everyone. Roll of the dice. That is not comforting at all.

Please do get back to me on the gaba, I'm going to do some looking around myself.

Steve

Post Edited (therabidweasel) : 2/10/2014 2:50:24 AM (GMT-7)

Posted 2/10/2014 9:52 AM (GMT 0)
Hey Steve, so sorry I did not see the 3 there, yes that is a high dose. I guess its ok if its giving you some relief and if you don't have any side effects from it.

I think everyone has their own pain tolerances & they can vary. I am with you when someone says they are a 10 on a pain scale even my PM dr says that person should be hospitalized. One thing I have learned being a PM patient is some people think the higher they say their pain scale number is the more the dr will believe them that they hurt, lol, if they only knew.

Its the bewitching hour here hopefully I will get some sleep tonight. Take care...
Posted 2/10/2014 12:18 PM (GMT 0)
Hi Steve and Welcome to HW! I see from your post your credentials are certainly in order to be here! My but you've been through it. The fact your well informed in regards to your overall situation is refreshing since we tend to see just the opposite here looking for answers after the fact.

I know you didn't want to hear the "everyone's different " but I can assure you after having spent 25+ years as a Ortho/Neuro Nurse on a surgical floor that no 2 surgeons perfom a 3 level at least in the same exact manner and no 2 people will ever follow a set pattern for post-op recovery.

That being said Susie was correct in saying 6 weeks return to work after a 3 level would be outside the norm rather then the 12 weeks we generally see and that's with many restrictions. The spine and brain don't heal at the same rate as other anatomical systems.

Are you mislead when told your recovery time is 6-8 weeks? Possibly, but it's more likely they're telling you that your wound has healed, your fusions on the right path, your pain should be minimal, and you should be seeing an increase in your overall activity levels. Not that you've achieved a full recovery.

It's vitally important that fusions aren't rushed in there healing for when they are is when we start seeing bone not fusing, hardware breaking, insurmountable pain levels, and all ending as a failed fusion.

As to your pain level assessment? Couldn't agree more and I've said it here before, a 10 and you dont see a response because at that point in pain your body has likely shut down and your brain has switched to a non-responsive state. I've seen them stare at me as though looking right through me!! The old adage "the lights are on but nobody's home " comes to mind. I too get tickled when patients say 10 and they're walking, talking, driving?

My take on the amount of Neurontin is yes that dose is in the stratosphere certainly and possibly switching to another of the medications in the same class is the answer?

I certainly wish we had some magic to share to get you back up and into the mainstream of work and living but the cold hard truth is it just may be too soon.

Hopefully you'll stick around and we can follow your progress and you may be able to offer support and information to others here. Your story is certainly an inspiration.
Posted 2/10/2014 2:36 PM (GMT 0)
In my experience saying you are in more pain than you are may work once or twice but before long the doctor is going to catch on to what you are doing. Doctors are trained to look for clues as to how much pain a person is in.
Posted 2/10/2014 3:30 PM (GMT 0)
Welcome to the forum, Steve.

Just a few items that might fit part of your picture.

Pins and needles to the level of the injury (where the nerves from the spine are going to) signifies Central Core Syndrome, at least to me. But but looking up CCS doesn't explain very well the pain that can happen. Read more about Central Pain Syndrome to see a picture of what can be happening.

I've got CPS pins and needles, burning and freezing, and lots more from the top of my shoulders down, after a fall where I broke a chunk off C3, had a big broken off bone spur impinging on my spinal cord, and 5 more crushed vertebrae and a burst disc. I was paralyzed from shoulders down, slowly have regained ability to walk and use my hands some.

I only had fusion of C3-4 and after 6 months my neck pain is no better. The Central Pain started 6 weeks, maybe 2 months after the fall and surgery. This is not unusual for the Syndrome.

Pain levels - It's possible to have different levels at different parts of the body, from different causes. Some pain is a brief stab, some eases, some doesn't. I don't want to judge your pain compared to mine. Central Core Pain burning and pins and needles can be constant. It's not curable or treatable. Pain from a still impinged spinal nerve may be treated with facet joint injections and ablation.

Wishing you well.
Posted 2/10/2014 8:00 PM (GMT 0)
Wow, I really thank you all for your responses. Its very generous of you to even indulge my rants. . .even if you are sitting home like me. I really am humbled. Time gets more valuable each day.

Alcie, your experience is similar to mine in many ways. My arms completely stopped working 2 weeks after I got out of the hospital. I was a strong and healthy 23 and I was back at work part time when it happened. FREAKED me out. An MRI showed my cord was bruised badly and somewhere they thought that I had MS and I wasted valuable time putting that stupidity to rest They knew I had suffered a little neck damage while I was in ICU, but they were so busy trying to keep me from bleeding out and putting my leg back under the skin that they sorta missed the neck stuff. . .your experience is eerily similar. Thank you for your post. . .your injuries are so much more serious than my little old wreck. Luckily I have no facet or nerve root issues, so all of my pain is spread throughout.

Other than gabapentin I have tried lyrica and cymbalta. Cymbalta had absolutely no affect on me whatsoever. Lyrica on the other hand let me sleep even better than the Gaba, but it didnt handle the pain at all. Without neuro drugs like these I will go days without any sleep at all. Lyrica also erased my short term memory. I knew I had to get off when after 3 months I was speaking to my very good friends and couldnt remember what I had just said. . .it freaked them out so bad that they compelled me to act. My job is purely intellectual, short term memory is essential to maintain a train of thought.

That said, I had been on low dose 50mg Nortryptylin until about November. It works well in combo with the Gaba. I found an old prescription lying around last night and popped one. I think it is working! No attacks and it is nearly 3 pm. That is a crazy good day for me. I mean I have a lot of low level neuro stuff going on, but no electrocution by pins and needles! My mood is much brighter today today too, probabky because it is an old school mood stabilizer. Even my muscle spasms all seem a little less! Here's to a good day guys!

As for sticking around, I hope I can provide some useful info however long I am here. . .a great site, but I hope I'm not here forever. I do appreciate you moderators, you guys provide a very positive force. Thank you. That said, if I can help anyone, however distant in the future from this post, please contact me. I am a fairly high level guy in my company in the real world, but I will try and respond. Hopefully I make it back. . .but the road looks long. My improvement week over week is SO little.

Guys, thank you again for the responses. I started a thread on useful items for Post OP ACDF. I hope that someone out there finds it helpful. I cant do much, but I can spread a little information.
Posted 2/10/2014 9:09 PM (GMT 0)
HW and the CP forum is actually just as much a treatment modality to many of us as heat, meds, or injections Steve! It's therapeutic to talk about pain and our issues and know that when someone says "I understand " they really do!!

We rant sometimes, laugh like fools other times, we've been known to use a boot to someone's rear when they can't leave the pity party's with the rest of us, and we hold out the hope that someday we can turn out the lights and close the door forever on this CP forum!!

That's what we do here, we're not offering medical advice although some of us were of the profession. We wont try to sell you on anything and respect everyone's choice of treatment or none.

Us mods are folks living with chronic pain just like everyone else here! We have bad days, good days, ups and downs and battle depression and the very world that treats us unfair sometimes just as you. We will help you anytime, anyway we can and for the most part feel very passionate about our forum and the folks whom its comprised of.

If ever we seem harsh with someone or blunt it's usually because we know our members and what works to motivate them or something has transpired behind the scenes not everyone's aware of.

Our welcomes are twofold as we love what new members bring to the table but are sorry for that means another human being has joined the ranks of chronic pain!

We too hope you won't need to be here forever and as you recover you rejoin the healthy without pain filled days, it's our wish for ourselves and all our members but should that not happen we're here for you.
Posted 2/11/2014 12:19 AM (GMT 0)
Steve, I looked up the Gabapentin at 3600mgs a day, all I could find was it was tolerated without any side effects for short term use. Lets hope the same holds true for long term use.
Posted 2/11/2014 3:33 PM (GMT 0)
Thanks again for the replies here guys.

I've taken Gaba for over a decade at 1800mg and 2400mg/day and never had any side effects of which I am aware. My memory is notoriously bad, but it's no better on cymbalta and much worse on lyrica so I assume that is just me. At minimum I seem to have to accept it. I've been at 3600 for a few weeks now and seem to be doing okay. I didnt have a single attack yesterday and at 1030 in the morning no attacks yet today. The addition of the Nortypylin seems to be working, at least in the short term.

With this surgery I am hoping to be off all this junk within a year. . .although "hope" is something of a hollow word for me these days.
Posted 2/12/2014 8:32 PM (GMT 0)
OK guys and gals, here is an update and a clarification for those of you following along with TRW at home.

So to clarify, this silly doctor wrote me a release to work with minor restrictions after 4 weeks. My company would not even accept it and made me wait two weeks more. He rewrote his release to be in 8 weeks and the disability insurance went ahead and covered me out to 12. I think the disability insurance folks must have guidelines on surgeries and they communicate those to your employer. . .very interesting. Anyhow, I count this as being deceived and I count it as someone was smoking crack. NO WAY could I even sit at a desk all day, for a week, even after 8 weeks.

Today I have an unexpected visitor dropping by, he is now 30 minutes late. Anyway, I have been much more active trying not to look like a pig in a sty. . .but the shoe does fit. I showered, emptied the dishwasher, swept the kitchen and bathroom and wiped down the stove. . .thats with rests and such in between, but I am wiped out. I've had several attacks, lots of neurological involvement. I see a lot less value in the nortriptylin and a lot more in staying reclined in this LaZBoy today. I'm having a hard time seeing a short path back to work and the fun of this little adventure is really wearing off.

I feel no better than the day I went into surgery.

Long before this surgery I stopped even hoping for hope. I just endure, for my wife, for my dog. I do not feel tied to this place, but I like the inhabitants so I stick around.

ONE QUESTION FOR ANYONE THAT HAS HAD ANY ACDF: Did you experience popping from the fusion site? I am getting a lot of gristle and popping and it seems to be coming from the fusion area C3-C6. I'm sure I'm wrong, I hope I'm wrong. It's totally painless. Anyone?

Post Edited (therabidweasel) : 2/12/2014 1:44:01 PM (GMT-7)

Posted 2/25/2014 10:14 AM (GMT 0)
Hi guys,

Week 11 is down, gaba is back to 2400 as it was messing with my vision. Also tapering in hopes of moving to tramadol. Nortryptylin is up to 100mg. Checkup with flexion and extension look good so I finally get to remove the collar. I am choosIng to continue to sleep in in so I don't tweak my neck at night.

Still very limited working with my hands, 30 minutes max. I've been working with a demo RFM Verte office chair and the articulating table from my useful items thread and think it may be my best bet for returning to work. Yesterday was very positive for many reasons, so i may be getting ahead of myself.

Surprisingly i can look straight up, but nowhere close to touching chin to chest. Side to side is nearly unchanged. . .not bad for 3 levels right out of the collar with no PT. That is next, trying to make it to work by mid march. Based on pain I've been having for weeks I am a little worried the surgery blew out c7-t1, but as long as it's not hitting the cord I will bear whatever pain it throws at me. . .but it now sure does feel like the other three herniated discs in my neck.

Post Edited (therabidweasel) : 2/25/2014 3:29:17 AM (GMT-7)

Posted 2/25/2014 10:26 AM (GMT 0)
USEFUL ITEMS AFTER ACDF THREAD
www.healingwell.com/community/default.aspx?f=16&m=2988269
Posted 2/28/2014 12:47 PM (GMT 0)
Had my first PT Tuesday and second is today. Just doing and holding 6 basic neck positions. . .not pushing the joints any further than the want to go. I did some very minor work on my coffee roaster, drilling 2 little holes with rest etc and I am messed up. I am having serious flares of pain and that blown feeling of c7-t1 is getting worse. My eyes have begun watering again. I thought it was a med side effect but I'm now associating it with pain level as meds are greatly reduced and I've been waterless for over a week.

i got my 3rd release back to work yesterday which curiously has more restrictions than ever. I am not encouraged that my pain is up substantially. I cannot repeat it frequently enough that this is a very significant surgery.
Posted 3/7/2014 11:32 AM (GMT 0)
I POSTED THIS IN ANOTHER THREAD AND THOUGHT i WOULD INCLUDE IT HERE AS IT IS PART OF THE RAMBLING CHRONICLE OF MY PROGRESS


If you care to read a rambling tome of self-indulgent suffering I just posted my intro thread on a 3 level ACDF. I am 8 weeks out. I enjoy all the things you do and my brother is a firefighter/paramedic. I ride with him sometimes so I have a good idea what you do. Thank you so much for your service. You provide a crucial and under appreciated public good. Were it not for folks just like you I would not be alive.

First off, good2go put it right on the money. I am still struggling with putting myself first, but to a certain extent your life is about to become ALL about you for the next several months at least. I have had great difficulty with this and at 2 months post op I am now crying over it several times a day. I'm not a guy that is in touch with my feelings. I don't even know how to accept this help. Im trying to make peace with it somehow. My friends come over in pity and feel bad if they don't. . .which is the last thing I want for/from them. G2G speaks the word.

I am 8 weeks out. Firstly, prepare to be essentially unconscious or at least 100% non functional for 3 weeks. I had my surgery Dec 11, I don't remember Christmas or New Years. My mom, a nurse, was with me until Christmas eve and my wife gives great daily support. If you do not have anyone, you need someone you can call and you need to get meals etc prepared for you. You will be able to shower etc, but it and other hygiene activities will occupy a majority of your waking day.

I cant emphasize this enough. . .you need a hard-nosed med savvy advocate for you at all times when staying in a hospital. I've lived everywhere and I just stayed in one of North Americas premiere hospitals. . .and they got my menus wrong. It happens, you know it does and why it does. You need someone to make sure that if you are immune to dilaudid (like I found I was) that they hook you up to some morphine ricky-tick post op. You need to make sure they don't give you something you are allergic to or the flat wrong thing. I've had multiple relatives killed or stroked to near death by mistakes. . .all in "great" hospitals. Your care is the simultaneous responsibility of many humans, pressed for time and resources. You need an advocate and that person needs to be willing to sleep in a chair at your bedside if that's all the hospital offers. And if they don't allow even that pittance. . .go the heck elsewhere, because that is not a good sign. It is not enough for this person to "just be there." They need to be in your business, asking everyone what they are administering, what and when are your next injections, when do you get food, etc. . .and they need to facilitate these things happening across shift changes etc.

Whatever sadist installed my Foley used the 50 grit variety. By the time I got to my room I found that it was extraordinarily painful to pee. In 20 minutes I got about 3 drops. The nurses alerted on this and brought in the ultrasound. My bladder was beyond its measurement capacity. . .heh, dad was a trucker. Anyway, my wife was holding the vessel for about 20 minutes while I scrambled to get out a very painful 500ml. . .they were in the room to cath me again when I convinced them not to. Within another thirty minutes I had produced another liter and they were off my case. Urination was exceedingly unpleasant for the next week. . .again, world class hospital put that Foley in. Obviously I was unconscious. I'm sure you've done a lot better in an ambulance racing down a bumpy road with a conscious patient.

I ride in a car and walk in the snow to doctors appointments etc in a hard collar for extra protection. I will be at least 12 weeks 24/7 in a soft collar. You get a special hardish collar to use in the shower. Shaving is a chore. My voice and throat were fine in recovery, I even ate in recovery as the kitchen was closing before I got a room. Just remember soft foods only, they screwed that up in my chart. That said, my esophagus is permanently narrowed and I must always eat with water at hand. Food catches below my epiglottis so it is a discomfort, but not life threatening as I do not technically choke. Still, it is freaky.

At 8 weeks I cannot imagine any of the activities you listed, although I enjoy(ed) them all. LISTEN TO ME HERE: do not lift ANYTHING. I have at minimum triggered significant pain by lifting a 20lb coffee grinder 2 days ago. It is tempting for us do it yourselfer rely-on-no-one types, and in my case unavoidable, but just avoid it anyway.

One thing has been a great help for my laptop. My wife found this articulating aluminum table that I can recline fully and adjust so I can see to type this. Got it off Amazon for $35 or so, well worth it if a tad flimsy. My laptop is light.

Honestly at this point I cannot imagine when I could fire say a .300 Mag of a .44 or .500 pistol. I could fire a 22 or a 9mm though. . .I'd just need to rest my neck in 15 minutes or suffer significantly. I don't think its in my best interest to do those things but I field stripped my Glock yesterday. When will you be able to deadman carry a 200lb dude? Man, from here 1 year seems optimistic. But don't let me bring you down, in my other thread I mention a guy who is doing OK. . .but the procedure did not fix his problem. I think you should prepare for this possibility mentally, I'm sure a person like you is.

In any case I wish you the very best of luck, may your surgeons hands be steady, his judgment good, your nurses great, and your recovery, attitude, and mental state strong and stable. This surgery is definitely no joke. I believe it to be substantially worse than my near death medi-flighted accident with a compound tib-fib and a lacerated liver. . .a lot less painful, but much longer recovery.

Oh yeah, always make friends with your anesthesiologist. Mine let me push my own drugs. I once had one that let me check them out individually. That was better, because I only got halfway through the propephol or whatever it was in the big syringe before it was wakeup time again.

Godspeed to you.
Post Edited (therabidweasel) : 2/10/2014 12:44:54 AM (GMT-7)
Posted 3/7/2014 11:53 AM (GMT 0)
OK, the above intermission excepted here is a chronological account of my latest activities for anyone that is bored enough to follow me.

Firstly, the single best improvement and cause for drastic decrease in pain and symptoms was removal of the [quadruple expletive] soft neck brace. I felt like I'd had it one quite loose for several weeks, but taking it off for a night+ was the best feeling I have had in many, many months

I continue with PT twice a week. I really like the routine they have worked up for me: it starts with damp heat on the traps and rhomboids which are still in constant spasm despite the valium and ends with TENS (wet electrodes) and ice packs. In between I have simple stretching and strength building excercises.

With the PT, the collar off, and periodic rests in my new office chair I have succesfully modified and toyed around with one of my science projects: a computer controlled coffee roaster. Thankfully this is pretty much the extent of what I do for money, God help me if I had to actually work for a living in a trade or manual labor.

Again, my symptoms were cord and not nerve root related. They are full body and continue in intensity, although their frequency is now less than what too me out of the work for completely. In fact, this being a Friday I intend to work full time (with additional hours of breaks) starting Monday. I feel like my prospects for doing this are good. In part due to the very fancy office chair that I mention in my useful items thread linked above. The biggest thing is I can hold my head erect for long periods of time now and I believe that is 70% due to the removal of the soft collar.

My range of motion, unbelievably is a bit better than what I had before the surgery. The four vertebrae that were fused no longer come unglued and fall all over each other when I turn left. I was fused C3-C6. . .so if you get fused elsewhere, especially at T1 which doesn't move, you should expect a significant reduction. Dont get me wrong, my range of motion was not good before, its just not worse now.

So. . .I'm basically back to the point where my pain and symptoms were indicating to me that I needed to be seriously looking for a doctor after 12+ years of suffering through. I am not hopeful that they will improve much from here, but I know that I can deal with them as they are. If they improve that is great and I will take it. I would love to not have to take a handful of pills every 8 hours.
Posted 3/7/2014 12:15 PM (GMT 0)
Ah, just to add, the blown feeling down at C6-T1 somewhere in there is slightly reduced, but it is definitely still there. They eye watering is still going on. I am completely off of opiods for several days now and plan to use Percocet only for flares and switch to Tramadol if that doesnt cover it.

I have noticed a very weird trend that is probably just my particular anatomy and injuries. My eyes begin to water 30s to 2 minutes before I have a full-on pins and needles electrocution (what I call flares, acute attacks up to tens of minutes). Most recently that has just been my hands and wrists. But over the past several weeks its been anywhere (and everywhere) in my body including the nerves in the roots of my teeth. I think it must just be all the crossed wires in my cord. . .but when my eyes start to water I try and find a place to sit and recline.
Posted 3/7/2014 1:08 PM (GMT 0)
Well I've got to say that even weeks ago when you didn't want us to tell you it's too soon and everybody heals at different rates you've come a long way!!!

I wish I could sticky your hospital protocols at the top of every forum page. I worked decades in the field and can honestly say those who come bearing advocates and activists truly move through the hospital experience far faster,healthier,happier,and more comfortable then his sole meek counterpart.

Your watering eyes is likely due in part to some nerve that was severed during your procedure and as they attempt regrowth,healing,and reattaching they can have some seriously strange effects and sensation.

After a emergency c- sec 21 years ago in which they reopened an older c- sec scar rather quickly and got out of lines with the scalpel I had this strange tickling,itch,accompanied by twitching about 10 inches and to the right of the future line. It was the odd nerve path that one of the severed nerves had took healing. It took the better part of a year for it to find the right path.

I certainly hope for you that this point you've made it to isn't as good as it gets and that as you heal you continue to grow stronger and better.

Please keep us updated when you can as your time will be centered on work. Your story and journey will archive here to help countless others.
Posted 3/7/2014 7:34 PM (GMT 0)
Vicki,

I take the sticky comment as very high praise, thank you. If I can provide any useful knowledge to others that is what I want to do. To expound on the importance of having advocates, my paramedic brother, wife, and nurse mother were on the helicopter landing pad with the trauma team when I originally arrived at the hospital. . .I mean ALWAYS have an advocate ;)

Now with the further, please keep in mind I'm an empirical scientist (no medical degrees etc) and what I lack in tact I make up for in verbosity. . .and am thus, a bit of a blowhard. LOL. As I said initially, I really do believe my lot in life is to serve as a warning to others. I recommend folks pretty much do the opposite of whatever I would do. LOL.

The comment about "everyone is different" in my opinion is very much overly used in medicine. I believe it is too often used as an expedient in an overly taxed set of disciplines to rush the patient out the door to get the next one in. Insurance pays per visit and revenue has to exceed expenses. Telling a patient that "everyone is different" is like telling them that the sky is blue. It is at minimum dismissive, at maximum offensive, and in the general middle lazy and uncreative. I dont mean to direct that to you or anyone else here, I'm saying it in the general case. I completely get why its said by on-the-clock professionals. That said, there are commonalities amongst patients. . .or would there not be a different surgery for each one? I know some could argue each surgery is different. . .BUT we are comprised of common structures, physiological networks, and chemical reactions. Each is unique, but aspirin pretty much thins everyone's blood, scalpels cut through everyone's flesh, neosporin helps cuts heal, and casts keep bones in line.

OK, so my tactless and improperly stated question (in hindsight) revolved around the ideas of what variables can affect the levels of pain experienced. In this thread many good reasons like surgical technique, skill, etc have been raised. But I will add to this now that my colleague (exact same levels fused, allografts, plating) wore no brace and was in radically better shape pain/function-wise than myself. Indeed, the removal of my own brace months later changed the slope of my recovery drastically. There are pros and cons to all the variations in technique and treatment. What I was seeking was simply that sort of discussion. To say that everyone is different I really do believe to be equivalent to saying "I am not particularly inclined (maybe equipped) to ponder the depths of your question at this time." And thus, in a forum setting, really does not require being written. . .PLEASE no one take offense at this, blowhard, remember? LOL.

OK, again, I meant none of the critique above to any of you lovely people whom have helped me in a myriad of ways, for free, and on your own time. I do intend to revisit this thread as my healing ?progresses? from here. I hope that some of the information in it can be of value, particularly those seeking 3+ level ACDF, which appears to be distinct from, and much less common than, 1 and 2 level surgeries.

In the meantime, godspeed to us all. May we all not need a forum like this going forward.

Steve
Posted 3/15/2014 6:17 PM (GMT 0)
Hi Guys!

A week back at work clocking a full 40++ hours, mostly in the lab. I'm am sitting in the same spot I have for months and I am in disbelief that I just did what I did. . .I am in a different league of pain at the moment, but my wife has just lost her job and I just have to find a way to clock the hours.

Day 1, started with an hour of PT and then at work in my RFM Verte chair and I was doing fine for several hours doing desk work. I'm a laser guy so a lot of my job is spent bent over a table turning tiny adjustment screws for hours on end. I made it about 45 minutes and had an attack. I rushed back to my office chair and rested/remedicated while in tremendous pain for about 30 minutes. A couple of hours before we had found out about my wife's company closing and the gravity of my getting the job done was clear and heavy on me. Teary eyed from pain and burden I went back down to the lab and clocked another 4 hours. . .it was much easier than the first 45 minutes.

Day 2, First and only attack was in the car on my way to work. Pain at my level 6-7. . .about the most I can handle and perform any other function. It was pretty much all lab work and I only required one 30 minute rest. I coordinated with my various doctors to go (back) on two 5/350 percs spread throughout the day in half doses. . .I am used to working in a lot of pain and given that I am so young I really resist the pull for any more meds than the absolute minimum. Gotta keep my powder dry for when the real pain starts later in life. . .God forbid.

Day 3, First and only attack before I got out of bed, my PT had (thankfully) been canceled for this day and I pretty much worked in the lab on my feet for 8 hours and then did 4 hours more calculations from my desk chair. I had been. . .admonished. . .for not being productive enough so I pushed as far as I felt I could and still drive the 30 miles home. I collapsed and slept upon the couch in my work clothes using a wadded up blanket as a pillow. I got up at 5 when the heat kicked on and made my way to work.

Day 4 Another 8+ hours in the lab but I took a couple of 20 minute breaks for coffee with my new coworkers. At this point I am pushing so hard through the pain I have to will myself to chew each bite, much less eat, much less work. This day was all will power, anyone in CP knows what those days are like. I passed out on the couch again and made my way to bed at 3, re-awoke at 5.

Day 5 I awoke much as I originally awoke from surgery, in a great deal of pain. After 5 I kept waiting for my meds to kick in and never got any relief. . .my wife is in her own world with losing her job and I cannot ask her for a massage or anything. I dont want to move. I texted my colleagues from bed that I would not be in to work until 10 and slowly made my way to the shower. I worked 7 hours in the lab. . .given my pain I'm not putting in the quality of thought and skill that I feel my salary warrants. . .but I have nothing else to give. I came home and made a quick dinner, knowing my wife wasnt in the frame of mind. . .it was all I could do to spend the 20 minutes making it, I barely ate. I fell asleep on the couch again and made my way in the cold to bed at 4am.

Saturday I didn't get out of bed until 1245 today and I am wiped out. My neck is in so much pain my eyes are watering like they were ?months? ago. I'm just going to sit here and listen to music today. I truly do not have a problem with alcohol, but after I type this I am going to have my first drink of the day. I never can decide whether more drugs or more alcohol is going to be least damaging to me in the situation, but I need something. I cant say it is a bad day because my spirits arent bad, but I am in such tremendous pain. I have to go to work Monday, there is no choice, this certainty is also somehow ?comforting? but I'm taking my 2 o'clock meds with a shot of Jagermeister. I really do find this as disturbing as you, but I need something to reduce this pain.

I have muscle spasms in my shoulders that now tear for some reason each time I get in the car. . .it hurts bad enough that I just sit there for a minute. These are getting worse with each passing day, despite several PT sessions. I know its got to get better than this, but so long as it doesn't get worse I will allow myself at least 50 birthdays, God willing. I will will myself to take this pain that long. I cant see doing this any longer than that.

This is really just meant to be a chronicle of my experience with a 3 level ACDF. I know my acquaintance mentioned above is doing a lot better. I hope most do, I think I waited longer to do it that most as well. This writing is cathartic for me, I hope it has some use for others. Sorry to be so long winded.
Posted 3/29/2014 6:19 PM (GMT 0)
Hi Guys,

Another 2 weeks back at work. . .thankfully very little in the lab. I am still on half a 5/350 perc and 5 mg valium plus 800mg neurontin 3 times each a day. . .60% of the time I take and extra half perc to take the edge off my pain.

PT continues to be not a lot off fun. I think it is helping but that tearing feeling under my shoulder blade is only getting worse. Everyone calls it weakness. . .I lifted weights for a decade and this feels like moving a muscle a few days after a crazy heavy session and feeling the fibers tear apart. . .amplified by about a thousand, pain level 8 but passes in minute. To me it feels like a massive muscle spasm all the time, but they say it is just a little tense. . .so maybe it's neurological. I am slightly better than non-functional this weekend (a decent improvement) and am resting as much as possible because I need to be in the lab next week.

One interesting thing was I came off of valium for a week as the prescriptions switched to my PM doc. The PT's started becoming a little concerned that I was losing range of motion in my stretching exercises. They remeasured and sure enough I had lost 10 degrees per direction. But I am back on now, so we will see how that goes. My PM hates prescribing valium or soma, she is really hesitant about it. . .I've never tried soma but valium is the only one that has worked for me. I hope she will keep me on as long as I need it.

At this point I think I am fairly recovered from the surgery and that the majority of my issues stem from the cord injury. The meds are keeping the pain at a level I can take, but I am still willing 50% of every waking moment. I cannot be without medication and as every 7th hour passes I know I am more vulnerable to having an attack. The neurological attacks may be triggered by stress as they always seem to happen at the doctors or in meetings with my boss. I have them other times as well, but those seem to be triggering events, even though I dont feel stressed by meeting with those people. I still come home and collapse, but I've generally been making it to bed at night. I am only sleeping 3-5 hours a day. Kinda looking forward to having a housewife for however long that lasts.

I still cant say the word hopeful has any meaning for me, it hasnt for years. I will say that I am wishful that the neuro issues will improve. Knowing what I know now, I should not have put the surgery off as long as I did. . .or maybe I should've. Time will tell.

In Summary: Trajectory is still upward, just at an extremely slow rate. Be well.

Post Edited (therabidweasel) : 3/29/2014 12:37:10 PM (GMT-6)

Posted 5/23/2014 10:10 AM (GMT 0)
I am a little over 5 months out at this point. Finished PT, only missed one day of work due to pain. I am still on the same drugs as last time and moving more toward 3 percs a day. PT restored more range of motion than I had before, but it was 6 weeks of ever increasing pain that they just called weakness. As soon as I stopped going I instantly felt better. It may have been treating my muscles but it was seriously irritating my nervous system.

I started out doing PT in the morning, in my undershirt to keep my button-up looking OK. My undershirts are tank tops as I run hot. about 3 weeks in I had "an attack" that became moderately severe. During this my Phys.T and I noticed waves of small red bumps welling up across my body. I started noticing this with every attack and I noticed that if I performed my neck stretches in a certain order I could trigger this every time. I have for the most part used this as feedback to know what I should do during those moments of thin medication or in general when I begin to feel the pins and needles. The rash lasts anywhere from 5 minutes to 35 minutes and my Neuro. says it is basically a histamine response (hives) and can be alievated in similar ways. I'm opting for avoidance.

PT ending was one of my best days. The more PT I attended the more each tick of the clock was willed into being by me. The constant grinding of the pain left suicidal thoughts in the back of my mind 100% of the time. I have a very morbid/sardonic sense of humor anyway. . .but these thoughts really started working out the intimate details of my suicide.

Around this time we made some new friends who are older than us. One is still a practicing psychologist and just chatting with him about nothing in particular has motivated me to see someone. I am losing my neurologist who was the only one that ever believed turning my neck could trigger a full body rash even in my face above my injury. My PT has really stepped up and promised to support me with percocet, valium, and whatever else I need provided my urine tests turn out as they should. This has provided a small mental boost.

I live in New England where medical marijuana is in various states of legalization. In a very odd moment with my neurologist discussing my pain doc cutting me off of narcs he said something to the effect of my seeking alternate herbal therapies *wink*. This has been advocated by some friends of mine as well, but I have resisted. I mentioned it to my PT and even she said it was a valid choice for which she would not eject me from her practice. . .but she would not be able to prescribe narcs for me if my urine were to test positive for marijuana. I set up an appointment with the pain psychologist through my PM clinic, urine tested, got new scripts and left.

So through a weird confluence of the streams of life I will be meeting with a marijuana expert this weekend. I hope to pick his brain about the possibilities. I am happy with percocet at the moment as it does not seem to be affecting my thinking or judgement, but I will consider all alternatives. . .even if I dont try them.

As far as the surgery and PT go, both consider me a success. I have a great range of motion and my fusion is healing well. My pain is 5-7 on my current drug regimen and is presumed to be due to the cord damage. I cant keep operating at this level much longer, so I am probably just going to up my percocet for now, but I'll wait until saturday. Whatever solution I use, it must have minimal effect on my thinking. . .that is the only function of my body I have left to sell and the wife is still unemployed.

To end on a dark note that I dont think is suicidal per se. I have never been scared of death in my entire crazy risk taking life of rock climbing, mountain biking, freestyle biking, and motorcycle knee dragging. . .but it has a different meaning to me these days. I would not mind dying right now. . .this is what scares me. I don't intend to die right now, I'm not looking to get into an accident or anything, but if I got hit by a bus or struck by lightning I'd have no complaints other than leaving my wife with a large hole in her life. It doesnt seem to be a healthy thing to feel this way.

If you've read this far, thank you for your time. If you have any thoughts on any of the above feel free to interject. I will try to log into this here more often. . .I'm just a very busy dude and was more so with almost 2 hours of PT twice a week.

PS I moved my PT until after work and that was a major mistake. It was much better to get it over with and be bone tired all day (but on the clock ;)) than to will myself through PT and drag my carcass home to pass out with a drink in my hand on the couch as soon as I walked in the door.

My alcohol use has increased significantly to hold off on increasing the percs. That is having its effects on my digestive track (mainly reflux). I'm not drinking at work or secretely or anything like that, but I've been pretty liberal after work. I am going to tone that down and have gone tozero for at least a few days while my esophagus heals.

Post Edited (therabidweasel) : 11/29/2014 9:37:52 AM (GMT-7)

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