Frustration with Recovery ACDF
 

Hi to all.
I am 4 1/2 months post-op at this time. I am pleased that once the day gets started and I have completed my exercises I have decent ROM to the left and down a bit more limited right and very limited up. My strength is still poor. Generally I use 2 lb weight at home to complete exercises. There is one that I use a 5 lb weight for. My son still carries the heavy groceries and the laundry basket. If I try to do either then I will suffer with neck pain, tightness, knots or tingling in my shoulder blade region and muscle spasms. When does this end? I want to be able to complete every day activities without worrying about how I will feel. As stupid as it sounds I want to be able to clean the bathroom thoroughly including scrubbing the tub and really washing my floors. Tired of the superficial cleaning. I would also like to be able to plant a vegetable garden and my flowers. I guess I am just feeling sorry for myself. I know others have it much worse than I do. I am also concerned about levels above and below the fusion. I know that everyone heals at different rates....

*************************************** **********
12/9/2010 ACDF C5-6 C6-7 with plate, screws,
BMP & bone fragment filled cages
2/14/2011 trying to go back to work as a teacher
2/17/2011 starting PT
wearing bone stimulator 4 hours a day
DDD, arthritis, herniated disks, pinched nerves
3 months saw a little bit of bone growth (YEAH)
4/15/2011 Home Tens Unit

Dealt with the pain and issues for more than 5 years
tried PT, chiropractic, acupuncture, cervical epidural shots and selective nerve root blocks prior to surgery

Hi
 

Sometimes I think the waiting for the return of function and relative comfort is the worst part of this process. If you have a supportive surgeon, you might talk to him/her. I always got the ones who got all upset when I complained of severe spasm and assorted pains for months post op. I had one fool who chewed me out on my two week visit when I said I was REALLY uncomfortable and could not find a decent position to rest in. Forget sleep. He had the nerve to say "what's wrong with you? Dont you know that you are repaired and the incission has healed nicely?" I was exhausted, in real pain and tired of his BS. I fired back "Have you forgotten all of the rooting around you did to effect a three level repair? Have you forgotten the grenade that I am certain you dropped in there?" That's when I had my primary doc refer me to a pain doc who got things under reasonable control so I could begin to slowly increase my level of function. Best wishes.

Thank you for your response. I guess sometimes I feel sorry for myself. I know that I am lucky that this is a treatable situation and in time (even if it is longer and more painful and distressing at times) will feel better. My OSS and the PA have been pretty good anytime I call or ask for something. Even the PT have said that I seem to be healing a bit slower than others, but I waited a long time to have the surgery and it will take time to heal. It took me 5 years to have the surgery and it will take a while to regain all that I have lost. I am not a spring chicken although I am not that old either. I guess I just need to be more patient. Thanks again. :0
*************************************** **********
12/9/2010 ACDF C5-6 C6-7 with plate, screws,
BMP & bone fragment filled cages
2/14/2011 trying to go back to work as a teacher
2/17/2011 starting PT
wearing bone stimulator 4 hours a day
DDD, arthritis, herniated disks, pinched nerves
3 months saw a little bit of bone growth (YEAH)
4/15/2011 Home Tens Unit

Dealt with the pain and issues for more than 5 years
tried PT, chiropractic, acupuncture, cervical epidural shots and selective nerve root blocks prior to surgery

miserable due to lack of sleep
 

I am on my 4th week after acdf c3-7. I have an aspen (hard) collar 24/7. I could not sleep in my bed, I am a "side sleeper" due to some sleep apnea issues. Last night I don't think I got an hour of sleep. I kept waking up everytime I dozed off. I felt like I could not breath. Started panicicking. I am trying to sleep in a recliner because I found it impossible to sleep in bed. Is there anyone that has had this experience? If so, do you have any advice?
I recently cut down on my pain meds (Norco). last night I tried taking one Norco tab to see if it would relax me. It had no effect.

I found it very helpful to put a soft foam collar under the hard one. Of course, the restriction is madening but it does cut down on the rubbing and irritation. My surgeon laughed when I went in for my first post op check up and he saw what I had done but said it was a great idea. I had two more cervical surgeries that he performed and when I woke up, there was a soft collar under the hard one.

This can be pretty hot but that is why I just let my airconditioning blast away when I was wearing them. You need two of them as they need to be washed frequently as they can get pretty nasty. You need a fresh one to wear while the other one is drying. Best wishes.

Hi,

It really sounds like you are doing fairly well at 4 1/2 months S/P 3 (vertebral level) fusion. That is a rather big surgery and it WILL just simply take awhile before you plateau. I had a C5-6 fusion and I can say that at 4 1/2 months, I was still sore, stiff and with very weak neck muscles. For those who realize improvement, they say that at 15 months, that you will be about as good as you get. For me that was pretty much true. I am 3 1/2 yrs S/P fusion and am certainly better than before the surgery but no where near perfect. I am happy though with regards to the neck outcome.

In so far as wearing out the levels adjacent to the fusion, conventional wisdom and simple logic would suggest that more stress would be transferred there. Could be, but on the other hand there was a study published a year or two ago that found that accellerated degenerative changes adjacent to a fusion did not experience with any greater frequency than non-surgical controls. Doesn't really matter though since you are fused now, does it?! Can't really undo the surgery!

I feel your pain. No, really, I do!
 

Tomorrow I go for my third post-operative visit to my surgeon after having C-4-5, C 5-6 and C 6-7 fused in mid-March of this year. When I woke up from surgery, I no longer had screaming, horrific, unbearable nerve pain... but honestly, it still hurt. And each visit, my surgeon tells me how great I am healing and how fabulous my range of motion is and the scar in my neck is healing and I keep repeating, "But it really hurts. I don't want to run a marathon, I just want to clean the kitchen floor.

I went back to work (I took off two full weeks and then worked half-days for a week, though the surgeon said a week to ten days would be plenty for me to take off) and I now have to believe I rushed back into work too soon. I just have a desk job - I work at a computer all day - so you would think it would be easy.

No, not so much. Gradually, especially over the last couple of weeks, the pain has been getting worse and worse, this time on my right side rather than my left, until I almost cannot take it anymore.

This is just unbelievable. I don't want to exercise - if doing housework hurts, why would I do something repetitive and pointless that hurts? Physical therapy (I had tried three different types of therapy before the surgery, I haven't done anything since) is even more pointless.

I am 59 years old and I have probably taken a total of two sick days in 41 years of working. I never take aspirin, much less heavy-duty painkillers. This is just becoming unbearable, though. I really can't go into that guy's office tomorrow and hear how great I am doing. Really?:mad:

I like rolled bath towels under my neck
 

Ever since my C3-7 surgery three months ago, I find that it feels best to roll a bath towel and put it under my neck. I also sleep on the floor. I never had to wear a collar, and from I read on the posts, I think I maybe should have had a collar - after all of this time, my pain is not only returning to pre-surgery levels, it is now also on my right side, when it was only on my left side before.

I find walking to be excruciatingly painful - has anyone else experienced that? The surgeon says walking is good - then why does every step hurt so much!? I feel like every bone in my neck and back are being shaken and jarred, even my knees are starting to hurt, probably from the goofy way I walk to try to prevent my neck from jiggling. He also says my range of motion is great - then why do I about scream every time I back out of the driveway? My neck does not want to range that far, trust me.

Also had C4/5, 5/6 and 6/7 ACDF 2/21
 

Hi, I had acdf at C4/5, 5/6 and 6/7 on 2/21. I developed excruciating nerve pain in left arm POST-OP and had it for 15 days before it started subsiding. I had no nerve pain pre-op...just a dull ache in left arm. I was terrified thinking that the surgery had caused additional problems, but, now, I'm thinking that the nerve was irritable from being 'jiggled' during surgery and the fact that I had had the pain for almost three years pre-op (assault). I, too, was prescribed PT but have found that it causes pain...we have to listen to our bodies and do what works for us. I cannot do anything repetitive for very long with activating the pain across C6/7 where the worst herniation was. My immediate post-op pain was, also, excruciating; and I had to have strong pain meds which made my blood pressure drop dangerously low. I am just now starting to feel better. My PT and home health nurse think I should be able to do more at this point and have contacted the NS to ask that my x-ray appt. be bumped up since it is scheduled for one month from now...just to try to determine what is going on. Bottom line: listen to your body and do not let anyone dictate how much you do.

Hi French
 

Yep, I want to do those things too. Loosing function is terrible to go through. I want out in the garden, and to do more too. I am fused C3-7 so I know what you go through. Just do a little at a time. I will go outside this afternoon and just puts around a bit. I wish you all the best. ginnie

Hi Ginnie,
I wonder how much more if at all you have lose of ROM due to the extra level being fused. I am fused C5-6 C6-7. On cold rainy miserable days, I am so tight it makes driving tough. I don't feel as if I turn my neck as well. DO you have the same feelings? I am hoping to plant a little bit this year. I have had issues with RSD and numbness in my hands and feet.
So the saga continues. Have a painfree day. :)

Hi French
 

Well you have been through the ringer as well. I am fused C3-7 and it was after a failed C6-7. ROM is limited, no doubt about it. I did do all the therapy I could beinging at just 4 weeks. I have trouble driving as well. I no longer drive at night or long distances. A fast turn of the head feels terrible. I am so sorry that both of us are going through this. How are the ones above and below your fusion? Have you got records or MRI of after showing the state of those verterbre? I know for a fact my C1-2 and T1-3 are not in that great of shape. I won't have any more fusions. It took have this site to convince me to go through the last one! Have you done any therapy at home?

Yesterday I did a no no. I took enough meds that I am allowed, but I worked in my sons yard for too long. My whole body is hurting I have DJD as well. I should have known not to do so much. Pain killers work alright, but they don't tell you enough is enough., so today I pay the price. My son has been super good to me by paying for my huge dental bill. I wanted to work in his yard until I feel like I have helped him in return. Neck is bad.....too much looking down to pull weeds. So I do know French, the problems that go along with having these fusions. None of it is easy. I am sure here to talk to anytime you want. I drive short distances, and pick less crowded times to drive in as well. Let me know what your issues are and how you are doing in general. How long has it been since your surgery, me 22 months. ginnie

dear french

i am right where you are
pain woke me out of sleep
no more for me
i am still in limbo
have no clue if completed
with the fusing after 2nd surgery
had things on back burner
due to cancer
but i'll be getting
filmed as soon as spacers
come out they have magnets
in them
i am so sorry you
sound like how i feel
ALL THE TIME NOW
MOSTLY AFTER SECOND
SURGERY
WISHING YOU HEALING
THAT WORKS IN THE END
MY IDIOT DOCTOR
DEEMS AFTER A YEAR
YOU ARE SAID TO BE HEALED
NOT IN MY CASE
THAT I AM SURE OF

FEEL GOOD
AND HOPE THINGS AREN'T
ANYTHING WHERE I AM
AT

HI Eva
 

I know you have been posting to French. I am sorry where your back issues are so hard on you. Especially after being through this cancer. I so hope a solution can be found where you have a better level of comfort. Please have hope. I may not have liked my surgery, and had a hard recovery, but the surgery did help me. No question about that. I am not 100% of course, but much better, with no neuro symptoms in my arms or hands. My neck is stiff, and does not turn over my shoulder very well. ROM was effected, but the results I can't really complain about considering what I was like before the surgery. it was this site Eva, and those dear souls, that helped me through that surgery, and all phases of my recovery. I am 22 months post, and I did do some garden work the other day. Hope answers come your way. ginnie

Hi Walshka
 

You and I have had the same surgery. C3-7. I do have ROM issues as well. I do not drive much anymore because of that. so far so good for me as far as neuro trouble, but there is pain above and below for me. I have DJD and DDD so I fear that these are now starting to act up. I am post 22 months. i did do garden work, but paid a price for it. I so hope that your surgery heals, and that you get the relief. that surgery isn't easy to go through either. For me it worked for the most part in the reduction of pain. I just fear what is coming might not be so good for other of my verterbre. Take care, ginnie

Muscle spasms suck & so do some P.T.'s
 

I am 3 months, 2 weeks post C5-C6 ACDF. I'm having a tough time with the muscle spasms too. :( What's particularly frustrating for me is the conflicting information I received regarding recovery time prior to having surgery. :confused: I think my doc was 'overly optomistic' and indicated I'd be on the shorter end of recovery (2-3 weeks). He didn't tell me that the neck pain and upper shoulder muscle spasms would be an issue. He doesn't understand why it's taking this long for those symptoms to resolve, yet my physical therapist says this is normal for the type of surgery I had.

I use heat and ice frequently to try to calm the spasms. Usually heat first thing in the morning and when I go to bed. I use ice over the area periodically throughout the day. I take tizanidine for a muscle relaxer at bedtime and still use oxycodone during severe episodes. I've been on the oxycodone longer than I would like but I can't tolerate the pain without out. From what I'm reading on the boards and also from what my P.T. says, it will be a good 6 months before I start to feel 'normal' again. The only symptom that the surgery took care of from the get go was my arm numbness and tingling.

At this point, I feel like I am not being taken seriously by my doctor when I tell him how bad the pain is. It seems like he's being skeptical or thinking I'm malingering but I'm not. This is all very real. The muscle tightness and spasms can be confirmed with physical examination.

Has anyone else here stayed in physical therapy beyond 8 weeks? Have any of you had difficulty with your P.T wanting to end treatment before you felt ready? That's another issue I'm having. My P.T. says his job is done. However, my pain has increased since stopping P.T. for the past two weeks. Also, my P.T made a big deal saying he was 'concerned' that the insurance company wouldn't pay for any more therapy after a certain number of weeks. I called the insurance company and found out everything is fine and I have plenty of sessions yet. But that wasn't good enough for the therapist. He went around me and called the doctor telling him we should stop therapy and the doc should put me on anti-inflammatory meds. I was like WTF?? :mad: That's B.S. I'm thinking of asking for a referral to a new therapist.

computer work makes neck pain worse!
 

Those of us that have to sit in the same position for the majority of the day and work on computers are more likely to have neck/shoulder problems to begin with. I didn't realize that my 'desk job' was going to be so challenging either after I returned to work from my ACDF. I could not tolerate more than 3 hours per day at first and had to gradually increase my hours. I work full time now (3 months post op) however, I have a lot of pain and have to use heat and ice throughout the day. This recovery has been very difficult.

Is there anything to prevent you from continuing the P.T. on your own? Usually when I've had courses, I've had exercises to do between sessions and keep doing afterward for maintenance.

You might look into myofascial trigger point therapy, and ask you surgeon if it's ok to try. Once one of those knots gets established, they can be difficult to get rid of. Not all P.T.s know how to do this properly (even though they may say/think they can). Speaking from experience, MF therapy has helped my wife & self tremendously with spasms, and with help from a certified therapist, we've learned to do it at home, and still do when needed.

Working at computers all day is what caused our myofascial TPs to begin with. The therapy can be very effective for that - even for people who haven't had surgery.

Doc

P.T. on your own
 

Thanks Dr. Smith. I will definitely look into that! I still do the exercises and the stretches but it's not enough. I think it's time to find another P.T. and I will ask specifically about myofascial trigger certification.

You don't want a P.T. :( You want a Certified Myofascial Trigger Point Therapist :D (different animal), which may be considered "alternative" and not covered by insurance (which makes no sense at all - this therapy helped JFK with chronic back pain).
http://massageunwrapped.com/2011/01/...point-therapy/

MF Trigger Points can be strange li'l buggers indeed; they can work singly or in groups and telegraph pain far from the actual problem. We get recurring pain/spasm on top of our shoulders that are actually caused by 3 TPs that begin way down under the shoulder blades. We not only have to hit all three; they must also be treated in the exact correct order, and followed up with balancing stretches, but it's worth it!

Here are a couple of links to get you started. If they don't have a therapist listed near you, don't give up (just went through this with someone else); not all of them list with this site.

http://en.wikipedia.org/wiki/Trigger_point
http://www.myofascialtherapy.org/
http://www.triggerpointbook.com/
(better prices to be found)

Doc

ACDF 3 week recovery today
 

Although I see that these posts are a few years old I just want to share that I am on week 3, off of all meds except valium for muscle spasms and tylenol. I have been walking daily but still battling some depression at the lack of quality of my life. I know it has only been 21 days and I should be easier on myself.

Post Surgery spasms
 

I'm 13 weeks post surgery and still experiencing muscle spasms in my right leg at the knee. I'm on 1mg Valium but it doesn't seem to hold it in check. Going to PT which helps flexibility for a while but then I tighten up after sitting or lying down.
Patience seems to be the order of the day. I'm able to function but with some difficulty.

it's been a while writing here
 

dear friend

5/6-6/7
3-11-10 failed too fuse wore bone simulator
on even in sleep
went back to work 2 weeks after surgery
i was had the okay from doctor
i clerk in my town EMS Division
hope to one day to return
everything that could have gone
wrong did
the after care in this teaching
prestigious referral and an ego maniac
neurosurgeon a good referral
you would think the intricate art work
and an oath to use as their foundation
to begin with

dear friend

5/6-6/7
3-11-10 failed too fuse wore bone simulator
on even in sleep
went back to work 2 weeks after surgery
i was had the okay from doctor
i clerk in my town EMS Division
hope to one day to return
everything that could have gone
wrong did
the after care in this teaching
prestigious referral and an ego maniac
neurosurgeon a good referral
you would think the intricate art work
and an oath to use as their foundation
to begin with
4-15-11 surgery nightmare number 2
my immediate draining incorrectly
at the site of incision
a hematoma size of a half protruding
outside and most certain pressure inward
as it grew to that size over night
there was no place for any relief
there is where all he did was disturb
i believe my hospital after care persons
could have done something
by fixing the drain
it is over a while now
and walk with a cane as my gait is off
i have a feeling since 1st surgery of
water in my ear
you just learn to live with it
except when you have dried blood
in your ear 2 days then abruptly stop
no matter what
we all go down a s similar
roads some way or another

Hello there!

I am a 40 year old woman, and in August I had c5/6,c6/7,c7/t1 fused.. so I guess it's only been 5 months.. immediately after the surgery, I was so incredibly miserable because, in order to create space in my vertebrae to introduce the bone grafts, the dr. had to yank up my spine.. and disrupt all of the muscles along with it. it was so collapsed for so long, so. it was a miserable recovery needless to say. i spent an entire month sleeping upright in a recliner.. i felt sitting like that helped my muscles adapt to their new position and create some relief from their screaming..
so, i support sleeping upright, and understand it..
ICE is amazing. I"m in love with ice.

2 levels fused perfectly, and about 3 mos ago i started noticing a sharp pain on the left side. had an xray, and the bone graft at c5 had totally collapsed. i also started noticing a ton of 'clicking'... not like muscles poping. totally different. like, the hardware was creating these noises..

i've had 2 xrays and one ct scan since. pain is still dominant on the left side. sharp pain. not like i had before. not sure what to do.. we might refuse c5. would rather have a nice high space between than a collapsed fusion...

anyone else?

i hope you feel better!!

Hi Cattymo,
 

I do understand what you are going through. Have faith that it will get better. Can you find or order a GEL incline pillow. This allows the collar, and for you to sleep in your own bed. It may help you. We are all so different as we heal. I am fused the same as you C3-7. I reversed the curve of my spine, so I presented much the same way you did. Hopefully there will be a real good result a few more months from now. It was 6 months for me, before I really started to feel better. May your holidays be filled with less pain, and healing. ginnie

Reply to Garry
 

The post was for you Gerry, and the person I answered. Wish you all the best. ginnie

Collars post-surgery
 

I'm 3 weeks post surgery on C3-7 ACDF plus posterior D-trax. I began wearing a nice quality travel pillow that had conforming foam and velour exterior after my accident in January until surgery in June. It was a godsend to get through the night being able to keep my neck from falling side to side. Now post surgery I wear it each night and it is much more comfortable for me than a hard collar. My surgeon indicated he didn't think I needed to wear a collar during the day at all. Also, just invested in a really good cervical pillow.

I too had acdf at C4/5, 5/6 and 6/7 surgery and am 2 months out. I have an intermittent extremely painful numbness in my left hand that is unbearable when it appears. Much stronger and painful than before I had the surgery. It really happens most when I lay down. I have had 4 or 5 nights where I literally don't sleep a wink. I try every position known to man. The only thing that helps is getting up and walking around. This is torture and completely disturbs my quality of life and effects my ability to function effectively at work, as a parent, husband etc etc.

Is this type of pain normal 2 months out? Does it go away? The doctor said structurally the surgery couldn't of gone any better. The pain I feel is excruciating and has me somewhat depressed to think that this is my new reality. I am an active 53 year old ex athlete that was (is) very hopeful that I can have a better quality of life and be active again.