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Posted 11/26/2014 9:02 PM (GMT 0)
Greetings,
Just thought I would check in and keep you posted and will continue to do so such that others may know what to possibly expect with a major neck surgery (3 or more levels). Hopefully in a year from now I will have less pain and be more functional. I am still only able to work 25-30 hours a week.

I had an X-ray last week and it shows I am continuing to fuse, which is great news given that in the past two years my osteoporosis is 8% worse. So the bone fuser I wear 4 hours a day must be working! Unfortunately I am not fused enough to start physical therapy or have any kind of work on my neck. But I am going to try a massage on my back and shoulder muscles. It has been hard to find someone who will do a chair massage since there is no way I can lay down.

My sciatica is bad and I was disappointed to find out that I can't get an epidural since the doctor said it could jeopardize my fusion (nor can I get in the position for one). So I am back on regularly scheduled pain meds to try to stay ahead of my pain and be functional.
I hope all of you have a wonderful Thanksgiving! And a low pain day tomorrow!
Posted 11/26/2014 10:04 PM (GMT 0)
 

  yeah  Hey Sweet...SO GOOD to hear from you.  I'm sorry you're still having issues, but HEY!  You're FUSING.  I think you're on the road to complete recovery, though it must feel like you're off in the ditch.  Please take care to NOT overdo during this holiday season.  I know, easier said than done.  Happy Thanksgiving to you as well=)

HUGS~~Dixie

Posted 11/26/2014 10:33 PM (GMT 0)
Thanks Dixie. I am really trying hard to learn to cope and not be a burden to those around me. Yesterday I made two stops at grocery stores and paying for that today. Hoping to get my pain managed before I cook tomorrow......❤️

Hope your day goes better than you expect!
Posted 11/28/2014 4:53 PM (GMT 0)
Hi there, it's always good to hear from you. FUSION is great! So whatever the price is for it to happen just has to be paid. I am disappointed for you that PT is not for you yet. I feel like that has helped me so very much. As for as getting in the face down position for PT, is that the position you can't do, that was not even considered early on in my PT, then one day he said let's try it. He had to talk me in to it showing me how the part of the table with a hole for my face could be adjusted for my neck comfort. I finally agreed and it worked. Lots of my shoulder PT was done that way.

I did my own 11 month update recently and said your advice/reminder about posture while working in the kitchen had really helped. Thanksgiving meal preparation was quite a test and I passed-no awful, sit down NOW pain. I was mindful of my posture, took breaks when I FIRST felt the pain increase and did well! I even played in a game of volleyball with family with lots of protective people who have checked on me today. No damage done.

How is your range of motion? It is impressive you are working and doing as much as you are. Whatever it takes to make progress, I'm sure that's what you will do!
Posted 11/28/2014 5:00 PM (GMT 0)
That is awesome news that you are continuing to fuse in spite of the osteoporosis. Keep up the good work!!!

I hope you can find someone that will do the massage for you. Anything to try to get some relief. My sister was just here from Tampa & that is what she does for a living & she worked on my neck. I fell asleep & missed the whole dang thing but I also slept very well, lol.

Keep us posted on how you are coming along. Take care.
Posted 11/28/2014 5:41 PM (GMT 0)
Hi Abiline and Susie,
Thank for the thoughts. I am glad to hear you made it through Thanksgiving. I too, with the help of pain meds made it through the day fairly well. Pretty sore by end of day but not the mind blowing pain like I had the day before after shopping for Thanksgiving.

Susie, it sounds like you had the perfect massage! Good for you. I try a gal today at 3 in a chair.

The neurosurgeon does not want me on my stomach nor PT because he is concerned that since I am not fused yet that I may pull the screws out and have hardware failure. In fact, he had a conversation with my PM doctor and also told him I could not get on my stomach for an epidural for my low back. I don't really want to mull over that, but it makes me wonder what he is not telling me. He even told me to wear my hard collar in the car when a passenger! So I guess I am just not that healed up yet.

My range of motion is pretty good (turning right and left), although the doctor told me not to move my head up or down except just a tiny bit so again, I guess I am still in the careful stage. But I can move my head more than I could pre surgery. But if I move it too much like talking and visitng with people or looking around at a store, it sends my pain skyrocketing.

My sciatica is getting worse all the time. I sure hope my low back isn't falling apart! Have a great weekend :-)
Posted 11/29/2014 5:29 PM (GMT 0)
Taller Now since you are still in the fusing stages it may well be a precautionary type of thing with the dr plus the fact your bones are brittle. With these thoughts in mind it makes sense that the dr is being this careful with you. Since your structure is so compromised by the osteoporosis I am very happy for you that your dr is taking these precautions so that you don't have problems later on down the road.

I did way too much standing on a tile floor. I am afraid I am going to have to invest in a foam type rug for my kitchen floor, there is just no cushion to tile floors. I am having horrendous hip pain. I fell on it in the ice last winter & landed on that hip. I was pretty shook up & it hurt like the dickens but I tried shaking it off. I apparently did something to it in this fall because when this thing decides to rear its ugly head it gets ugly, lol.

We had a great meal Thanksgiving day & I hope you did too.
Posted 11/29/2014 11:07 PM (GMT 0)
Thanks Susie, you are probably right, the doctor is just being extra careful. It is interesting because when I see his PA he is telling me to do things etc. and when I see my neurosurgeon he is tells me the opposite to take it easy and careful.

I am sorry about your hip. Have you had an xray? I have travertine and wood floors throughout the house. The tile in the kitchen. I have two mats in front of the areas I stand most often and i wear some cushiony sketcher slip on shoes around the house that also help soften things up (and won't let me slip).

But regardless of what I am doing or where I am at about 2:30pm each day I start to ache from my neck to bra strap real bad and have to lay down. My husband calls it my "up clock". I only have so much time to be up and then must lay down and take pain meds.

We had a lovely Thanksgiving and amazingly I did okay. All things considered and with meds. But I did it!
Posted 11/30/2014 1:23 AM (GMT 0)
To answer your question about the xray, no, I did not go to the dr & should have because it was a nasty fall landing directly on the hip. When we had the bad ice storm I did not venture out until about the 4th day of it melting. I thought the drive way was wet from the ice melting, as it turned out it was a thin layer of ice. Really & truly at this point I doubt much can be done since its been so long since the fall, almost a year. I wear a really good pair of running shoes with lots of support & cushion. I have some cheap house shoes & with the tile & wood floors I can't wear them because there is not enough cushion, lol. I have been using heat & Tiger Balm. My sister sent me another type of ointment that I am going to try.

So glad you got to enjoy Thanksgiving.
Posted 11/30/2014 4:14 AM (GMT 0)
Hi TN!

You are making progress and progress is goodish, right? It sounds like you have that attitude and it is the one that I continue to try and keep. The reason for no epidural is a very good one: steroids inhibit bone growth. You should call any doctor out that prescribes any form of steroid for you until you are 100%. Surgeons are protective of their handiwork. (S)He stood in one spot with no bathroom breaks for ?six? hours to remove and reinstall your head and doesn't want to do it again! I'm sure at this point you realize how serious of a surgery this is.

I definitely get the up clock; I still have one. It seems like the amount of time on it hasn't changed (@11.5mos out), but I can do more. Thanksgiving I ran a chainsaw for 20 minutes and a snowblower for 1.5hours. . .and I am still paying for it, but at least I could do it? Sorry if you have mentioned it, I'm not on much lately, but how are your symptoms? Did you get any relief with the surgery?

Hey, do you get a LOT of gristle and popping in your neck? Mine sounds like a rusty old gate. . .being dragged down a gravel road by a square-wheeled dumptruck full of hammers. about once a day it pops loudly enough that it freaks my wife out from across the room.
Posted 11/30/2014 6:49 PM (GMT 0)
Hi TRW,
Good to hear from you again! And you answered my question about where you are. Glad to hear you are doing better, ever so slowly. I talked with a friend who had it 10 years ago and he said at about 1.5-2 years I will feel better but there is a new normal and flare ups after doing stuff has not gone away and he had one less level than us. And he said I will get used to it, and the swallowing issue stays but you get used to it. I told him how I went to the grocery store and Costco in one day and then had outrageous pain that night and he said he would never do that even now because of the same issue. So I guess we must get used to living life a bit more paced.

Overall, I continue to progress at a snails pace. I walk almost everyday up to 5ish miles and do lower body and core exercises and upper body movements. My neurological symptoms are pretty much gone. I have no more weakness in my legs and my hand strength is back and only when I over do it do I get pain down my arms, and then nothing like pre-surgery. And only one headache that was like my presurgery headaches thus far (after doing too much). So in that regard my surgery has been a success. And I remind myself all the time that I had the surgery to keep from being paralyzed and get my pain to a manageable level. That is what my doctor said he would do.

But the pain in my traps and neck is constant. Sometimes I wish I hadn't had the surgery, but that wasn't an option.... And sometimes I do too much and I trigger severe neck and head pain. I do get terrible noises form my neck, but I avoid moving it to make those sounds since doctor said to not move neck around too much yet. But I know what you mean - scary noise! Do you know why? Is it the ligaments over the hardware or what? My friend who had surgery said about a year or so after his surgery sometimes when he eats the front of his neck goes into spasm and he can't move or eat.

I was trying to not take pain meds and was miserable and constantly behind my pain. Went to my PM and we decided I would stay on Norco 3 times a day and since I have been doing that for the past week I am much more functional. I still have a hard time working a full 8 hours at my computer for work. But thankful my boss is letting me do work from home and not have to drive 30 minutes into town. That was killing me.

And you are right, no steroids. My regular doctor even took me off nasal allergy steroids. Must fuse! Are you fused yet? Did you do PT yet? My friend said that will be pure torture....

Mentally I am trying every tool I can find to get my head and mind straight and trying to accept the new me, limitations and all. I want to be someone people want to be around, not avoid. And I am afraid I may have scared a few friends off with my poor me attitude in the past few months.

I wish the best for you and look forward to tracking your progress. Good and bad. We are all part of the fusing neck club right?
Posted 11/30/2014 9:40 PM (GMT 0)
TN,

I do not know what my popping is, but it lights up my nervous system and definitely does not feel right. It gives me a big increase in range of motion, maybe doubles it for looking up and down, but it really feels like my neck comes unglued, my head pops off its perch, and the neurological effects echo for hours. Typically my upper lip and all of the inside of my mouth and tongue go ice-cold pins and needles immediately. I avoid it as well, but it still happens daily and I can make it happen at will, not that I do.

I supposedly am fused-ish. My surgeon looked at the 3 month, said it was great, be careful until one year and come back when I need another surgery.

I typed out a bunch of stuff to elaborate further and deleted it all. I cant really deal right now. Like my fishing friend (@1yr also c3-6) you are much better than me. I am happy for you.
Posted 11/30/2014 9:50 PM (GMT 0)
TRW,
I am so very sorry. That pain and sound thing sounds absolutely awful! YOWZA!!! I would have loved to have read what you wrote. My last visit with my surgeon was like he confirmed he built it well and pain or other issues are not his problem. They really dismiss you and then you are like, wow, what the heck did I sign up for? Not this! I bet you are not only hurting but angry too. And frustrated. And of course it affects every detail of your life! My husband has been supportive and really awesome, but he has days where I can see he does not know how to deal with this new broken wife. It feels awful. And your friends who have never dealt with this stuff don't get it and start to avoid you. Okay, see, now I probably said too much but I feel for you especially if you are doing worse at this place and time. Hang in there 🙏
Posted Today 2:33 AM (GMT 0)
The noises you two fellow fusers are experiencing make me cringe! So sorry for the pain you still have. TRW I assume your increased ROM does not last after that horrendous pain. I would also gladly read what you deleted. It's all a part of this journey. I see my dr this week for my nearly a year follow up and I'm sure he will want to check the progression of my fusion. I'm eager to know the answer to that. Will let you know.
Posted Today 2:42 AM (GMT 0)
Yes, Abilene, please let us know what your doctor says. And how you are doing. I assume he will take flexion extension X-rays? Or have you already had those? How do you feel compared to half a year ago?

I just got back from my primary care doctor - he prescribes valium to help me sleep. The only reason I go to him since he is kind of a jerk. He asked today why did I have the surgery? Why aren't you better? Why aren't you doing PT and continued to make me feel like I made a mistake having the surgery and that my doctors were messed up for not letting me have anti-inflammatory meds (which inhibit fusion). I just had to vent about this guy, what an jerk!

TRW - how are you doing?
Posted Today 3:28 AM (GMT 0)
The X-rays are taken each time I go in. I'm wondering how long my dr will continue the follow-ups. He seemed disappointed at 6 months that I did not feel better so I'm eager to tell him that I'm much more comfortable now. I'm probably very close to that new normal. There is a little pain I hope will continue to improve and I would love to have a greater ROM but compared to the pain I had a year ago, or even half a year ago, I can live with this!

It bothers me when acquaintances judge whether I'm being treated correctly but for another dr to do that is truly a jerk! I think any surgery that requires such a long recovery gets questioned, even by us, so we certainly don't need those comments from another dr who is clearly not well informed.
Posted Today 3:43 AM (GMT 0)
Good to hear Abilene! There is hope! I suppose you can still flare things up when you over do it? But otherwise have things managed? Are you still on pain meds? Or just occasionally? Keep us posted and best wishes for good news! 🌀🌀🌀 fusion

And yes, you hit the nail on the head, we all question and doubt everything from deciding on surgery, doctors and even our pain (like am I imagining this or is it really this bad?). Thanks for letting me vent 😄
Posted Today 6:11 AM (GMT 0)
Abilene, it's awesome that you are doing so well! Wow, what else can you say? It's refreshing to see it in writing on this forum, which can be a little sad on sad for me sometimes. Holy cow! I just looked at your sig, you had 4 levels POSTERIOR! and are wicked awesome? We all need to rub your head (really softly) and go buy lottery tickets, that is freaking awesome! That's what I'm talking about!

TN, if you must keep this doctor, and I'm thinking ambien or something, find out his car and license plate number. If he pulls that crap again just go ahead and verify those with him with a bit of attitude and I think the message will be received. That is very unacceptable in my book. No one has this surgery unless it is a last resort or perhaps if one were truly a moron. That's just plain unprofessional uber-douche talk that would get his coat pulled over his head and wailed on where I come from, at least it should. Jackass.

Guys I thank you for being interested in my tale of whoa! woe, but I really cant write it down right now. I have several other really crappy things I haven't mentioned specifically (like beyond the layoff etc), and it just feels like life is trying to smear me out right now. . .plus, I don't want to pollute your thread with my famous super long whiny rants. I plan to update my thread on the 1 year mark in a couple of weeks or I may just write another book for the old testament. I am still in bad shape from snow removal Thursday last. But, I know it could be worse and I'm thankful it isn't.
Posted Today 6:18 AM (GMT 0)
Aw shucks, TRW...Wanted to hear if you brined or dry-rubbed or roasted or deep fried your holiday "catch" ?

  smilewinkgrin  Dixie

Post Edited (Dixie6) : 12/2/2014 12:37:01 AM (GMT-7)

Posted Today 4:08 PM (GMT 0)
TRW - You are right, we should have a virtual party for Abilene! Not enough people who are doing well post, so that all people see are negative posts. I read Abilene's update out loud to my husband and he said, "I haven't given up hope yet that you will be feeling better in the future too." Those words from him alone made me feel good.

I am sorry for your situation, but please don't give up hope. We are all here for you even if everything else is falling apart.

And WT*, why are you shoveling snow???? You should not be doing that! No wonder you hurt if you are doing that and other similar things. My friend who had one less level 10 years ago said I must learn to pace myself and change what I do. He is ten years younger than me and super fit. But he says he has to take lots of breaks and I told him how a trip to Costco and grocery store in same day sent my pain spiraling and he said it would him too. He still gets flare ups 10 years later. We must accept a new normal. Which sucks. But maybe you are doing too much?
Take care! And keep us updated.
Dixie - my brined turkey came out perfect! 😄
Posted Today 4:27 PM (GMT 0)
Hey TN...I have no doubt you will feel much better with more healing time "under your belt". Patience is no virtue of mine, so I can certainly empathize.  I think you need to cut yourself some slack, Sweetie. I'm tickled that your brined turkey was a success. I went all "Food Network" and spatch-cocked my turkey.  Sounds painful, right?  Irony is that you remove the back bone and break the breast plate so that it lies flat to roast more evenly.  I won't do that again.  That turkey fought back=)

On Saturday, my husband and I hung our window wreaths across the front of our house.  He did the ladder climbing and the real work.  I was in charge of "floofing" the bows and "spotting" the position, which FLAMES my OCD shocked I suddenly felt an excruciating burst of pain (emphasis on burst) in my thoracic spine.  It took my breath and put me on my knees.  I think I experienced "turkey karma".  Still sore, but just add that to my laundry list of maladies.

Take care.  Pace yourself.  Be mindful of your need to rest, BEFORE you've overdone it.

I'm with you on TRW shoveling snow, working on trucks, hunting game (or is it "hunger games?)  Meow.

Hugs~~Dixie

Post Edited (Dixie6) : 12/2/2014 4:25:30 PM (GMT-7)

Posted Today 4:33 PM (GMT 0)
LOL Dixie! Pay back from bad turkey karma.....that is a good one! 😜
Thanks 🙏❤️

P.S. I get thoracic pain too and doctors never have good explanation why, except it must be related to my neck. But when you look at the anatomy of the trapezius muscle, it connects from the base of our skull down to the bottom of your ribs and all those nerves they messed with in our surgeries run through that muscle. So you must have pissed something off with a wrong movement, even with your arms perhaps. Or turkey karma nono
Posted Today 9:45 PM (GMT 0)
Hi Guys, thanks for the encouragement. I just want us to all have good reports very soon.

I do my PT at home every day and really feel that stretching my arms and shoulders helps my neck pain. But I never shovel snow or walk 5 miles or even half a mile. No one told me to walk so I haven't. Sedentary is a better description of me compared to both of you. Meal prep led to pain the most for me but that's much more under control now as I'm mindful of my posture. I only take something OTC for pain once or twice a month.

I'll update again after my Friday app't.
Posted 12/5/2014 9:06 AM (GMT 0)
Firstly, you guys ever been on fentanyl? I swear I cannot sleep at all the day I put a patch on. I have laid awake for a years worth of hours listening to my wife have all sorts of crazy dreams. With her and the dog on the bed dreaming you'd think I was attending a friggin exorcism. Both of the kicking and chasing squirrels or whatever the hell is going on there. But seriously, no sleep. . .at all. . .every. . .other. . .day. Abilene on OTCs very infrequently. I am glad for you, but it is more perspective I wish I didn't have. . .I am upping Fentanyl Saturday and I am already tired of the side effects. I have this horrible feeling that I once again need to up my pain tolerance and just cut everything, but I am really losing the will power to handle it. The Jedi mind tricks have helped, but they don't address the majority, just a really annoying particular.

D6, we had a Curmunken. That's a deboned cur (Shetland sheep dog in this case) stuffed with a deboned kitten (a tabby) stuffed with a whole family of deboned chipmunks. The cat fat really moistens the dog & 'munk and the chipmunk meat is just so sweet, like their milk.

All Y'all: The truck; don't mention it, sigh. 4? months and it is still on stands in the carhole, but nearing completion due to a great deal of help from a couple of pretty experienced mechanic friends. I just need to lower the transmission, replace the fuel lines, and then put it all back together . .which is not as much work as it sounds. It probably still wont be done this year. I also didn't shovel, that was all running a snowblower. For you Floridians, they are self-propelled. They are definitely not as easy to use as a lawn mower, but its definitely not shoveling. And, all I did was cut a path in the back yard for a cur toilet and clear the path to the wood/tire pile.

All that said, my wife said no more snow blower for me. You ladies just can't imagine how hard it is for me to take that kind of sass from her! But, I AM still recovering from a week ago and today I got to drive an hour to and sit for four. . .at the unemployment office! For no reason! And then wait an hour for a doctor not to show! And wait at the pharmacy to pay full-price cash for my meds! I really need sleep. See, thread polluted, I ruined it. You just had to keep hounding me, didn't you?turn
Posted 12/5/2014 4:27 PM (GMT 0)
Hey TRW...If you're the one milking the chipmunks, there's your pain increase right there!  As for the Fentanyl, I used the patch briefly in 2005-06 with PM.  Back then, it wasn't prescribed (for me) @ 48 hr. change.  I was on 50 mcg per 72 hrs.  The relief was amazing, but the withdrawal on that 3rd day was a BEAST.  I couldn't handle it, so I went rogue and abandoned PM altogether to just "tough it out".  In January of this year, I waved the white flag of surrender (for me) and enrolled in PM.  I'm thinking it was a HUGE MISTAKE, on many levels.  My doctor is a nut case (moody, and truly "never the same")  So far the meds I've tried are less than stellar, while my body has been riddled with horrid side effects of being "opiate naïve".  Add to that my inability to afford meds without prescription coverage, I remain on IR med because ER too expensive.  I SWEAR that this IR causes rebound pain.  I know without a doubt, it causes severe aggression and rage.  Let's just say I'm using a lot of BBs and my Red Ryder ain't Santa Claus.

Keep your sharp wit honed, as laughter is sometimes the ONLY medicine.

~~Dixie

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