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

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nvrthesame98
Veteran Member
Joined : Jun 2008
Posts : 6706
Posted 5/23/2014 5:05 AM (GMT -6)
Hello Steve and it's good to hear from you. Its also good to see your still mending and any progress is progress right?

As for the MM option that falls into a personal choice of treatment option and we try to respect everyone's choices and even lack of. I'm of the mind that whatever works best for your pain is OK. I've certainly seen time periods in this journey that I would have tried anything and I mean literally.

From someone who has decades of age on you and a decade and a half on the pain journey I can honestly tell you that my views on death and dying have certainly changed. Most of us wouldn't seek to leave this world by our own hands although my pain journey has definitely gave me "Kevorkian" moments. I have to recall lovingly the words of great wisdom my Mom inspired me with, "there are worse things then dying" and how very insightful that saying is to chronic pain folk's.

Our thoughts and views simply change with time and aging and it's not unusual at all to feel that way unless it becomes monumental in our thoughts.

Especially when you've suffered decades and as we start to lose friends and family and death takes on more realistic possibilities and we realize it will come knocking on all of our doors. In a sense we lose that immortality way of thinking that carried us throughout childhood and into young adulthood. The time comes when we realize we are not immortal and shouldn't be.

I hope you continue to enjoy the moments of your life in work and marriage as all too soon even these things come to pass for many. Thank you for sharing your journey with us and you will never know how many will gain insight and hope by your words. Its that reason we do what we do here.
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Abilene
Veteran Member
Joined : Apr 2014
Posts : 986
Posted 6/1/2014 1:45 PM (GMT -6)
Hello,
I'm new here-didn't find this site until I was well into recovery. I've read your whole thread and the suggestions for items that help. I even added a few of my own there.

I'm also older than you and am not shocked at your thoughts on death. It's just an expected part of life on this earth and I expect it to be far better. A friend says he is not concerned about being dead, but he is concerned about how he gets there.

Our family has also learned the value of having someone in attendance every minute spent in a hospital. I know if a hospital did not allow that we would go elsewhere.

I'm looking forward to your next update.
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therabidweasel
Regular Member
Joined : Feb 2014
Posts : 113
Posted 6/2/2014 8:54 PM (GMT -6)
Vickie and Abilene, thank you for your thoughts and I do mean it.

To be a little specific I have considered going to the party store and picking up a couple of bottles of helium so that I will have the assurance they are on hand if needed. I haven't discussed this particular with my wife, whom I tell everything. She knows I am finding less to live for (even though my life is pretty awesome) Anyway, doesn't buying the tools seem pretty far in the wrong direction? I will have a talk with a pain psychotherapist this week. The pain really chewed me last week, I'm not sure 3 percs is going to hold me for long.

I spoke with the MM expert who suggested particular strains with odd names as varieties that carry "lots of CBC and lower amounts of THC." I will consult with some colleagues that can do a little investigating for me and help me to assess whether I think these particular strains are something to consider trying.

UPDATE

This weekend we took a long ride (4hrs?) in our hot rod and I probably would have recovered from it but. . .I went fishing the next day in Boston harbor. DO NOT GO FISHING My neck is absolutely destroyed. I forgot my sunscreen and was in so much pain I failed to notice I was literally blistering in the sun. It was worst on the scar. As it turns out the friend of mine that had the exact same levels fused by a "lesser" doctor/hospital and he is doing way better than me, was on the same fishing trip. His neck was bothering him slightly at the end of the day, no drugs at all.. . .I was spiraling up in percs to a level one should not while out on a boat and barely able to do anything at all, even holding a rod over a rail. Fishing seems like a nice relaxing thing but the wave action just wears your neck to shreds. . .I sure didn't consider this possibility beforehand.

My friend wore a collar for only 2 weeks and was then encouraged to move his neck as much as possible. His surgery was outpatient and his scar was horizontal and below the beard! That part REALLY Pi$$es me off. . .I'm nicking my scar three times a day shaving. As for recovery, it could be that we are just different, or it could be the injuries themselves, or any number of things I guess. I was very happy for him. . .I would not wish the pain I was suffering on anyone, it was absolutely crushing.

Thanks guys for the comments etc. . .it's really helpful to know that others understand for real. . .which is a horrible thing to feel nice about I guess.
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therabidweasel
Regular Member
Joined : Feb 2014
Posts : 113
Posted 6/2/2014 9:20 PM (GMT -6)
Vickie,

Your mother's words are now my mantra. I was never told that as a kid and I spiraled into an adrenaline junky with no talent. . .bad combo. That is an important lesson a young idiot like me could have used or at least given a second thought. I never considered my self invincible, I just did what I wanted to do and suffered some of the bad possible consequences. . ."worse than death" needs to be drilled into any adrenaline junkie's head.

I've also tried to explain to people that the worst pain they can imagine (I prompt folks (daughter's boyfriends, etc) for what that is) is not bad enough to knock you out, at least in my case. I had no idea how much pain you can experience and not pass out; that pain is not something one can faithfully imagine I don't think. I have no words to describe it other than: a feeling ,not a thought, of awe that you are actually experiencing that level of pain consciously (or a 10 on my pain scale).

Well, today did not totally suck despite the fishing. I've actually not used pain meds tonight. . .but I cant feel my blistered facial sunburn either.
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therabidweasel
Regular Member
Joined : Feb 2014
Posts : 113
Posted 6/25/2014 9:05 PM (GMT -6)
Hi Guys and Gals,

If you are following along with TRW at home I am now 7+ months out. I went to see the pain shrink and she said I should draw repetitive sketches and doodles per a web page called zentangle.com and that she would call to schedule a follow up with me as she was unable to do it then. I dont know when I am supposed to do these doodles or why. 3 weeks later she calls me at 4pm while I am at work and asks if I can make an appointment the following day at 11. ***? I work in another state, this is the treatment a person with a rather detailed plan for suicide and thoughts of buying the supplies gets? Doodles and no call back? From someone who "specializes" in pain? What a friggin joke. My wife knows, told her after I wrote the last message. She is livid and I think she resents my thinking of voluntarily leaving her. I resent it too.

My pain has not really changed but C6 and C7, which were not fused are up to their old selves and have gone out on me 3 times in 2 weeks. I have a deformity where each vertebra rotates in the opposite direction and then gets hung up that way and inflames my nervous system and of course my neck. It is exceedingly painful, it seems even more so since the surgery. It lasts from 1 day to weeks. I have been having success icing it as much as I can stand for 2 hours and manipulating them back into place with my hands and neck flexion. Failing at that, this morning I succeeded with extension over the edge of the bed with the help of gravity.

Regarding the MM, I am told by someone whom I trust that the high CBC variety actually amplifies pain, although a few varieties were about as helpful with pain as alcohol, just without the hangover. This person tried 4 varieties that were recommended This is not enough motivation for me to seek it out, but I am still open to the possibility that other strains may be better or might work differently on me.

I had one last visit with my neurologist and as a parting gift he put me on Effexor, 25mg 2x starting out. at least in several days no effect, but he said it would take 3 months so I will give it that. One thing I can say for sure is I cant take it anywhere near bed time. I have been operating on 3 hours of sleep a night and I am not thinking well because of that.

I am hanging in there, I honestly cant say how and the only whys are my wife and dog. I hardly care about my career these days, just need a roof over their heads and food on the table/bowl. I feel like I could be just as happy sitting in the rain starving to death. . .I've had a plenty of hunger pains in my life, and I prefer them to this.

Geez I just noticed the skull and crossbones emoticon for the first time. Even I think that is a bit much. I'm sorry if this brings anyone down, it shouldnt. You dont know me, but I'm sorry if it does. THis is my only true venting as it is so disturbing to my wife.

Post Edited (therabidweasel) : 6/25/2014 9:09:32 PM (GMT-6)

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Abilene
Veteran Member
Joined : Apr 2014
Posts : 986
Posted 6/26/2014 10:19 PM (GMT -6)
Hello again,
I've read all your posts and I'm still here. Glad you talked to your wife. As a wife I would want to know that too. And would also resent it greatly.

Your description of your C6 and 7 going out and your manipulating them makes my own healing neck feel like a cakewalk. I've never been able to think thru pain clearly enough to devise a way to correct it. Where is your vertical incision, I assume just off center, but I'm curious. Another member here Taller Now also has the anterior vertical incision and lots of work was done. She is just 3 weeks out.

Looking forward to your next post. This does not bring me down. So vent away if that's what you need to do. Hope the Effexor does whatever it's supposed to do and also that you can get more rest.
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Taller Now
Regular Member
Joined : Jun 2014
Posts : 356
Posted 6/27/2014 9:45 AM (GMT -6)
Rabidweasel, I read through your timeline of events because I had an extensive C4-7 acdf with a big vertical incision like yours. First off, I am very sorry for all you have and are going through / been through. The surgery is more than I could have ever imagined but to not have a fairly reduced pain after this long of a time must be a crazy maker. I just had my surgery 3 weeks ago and am down to 1-2 norco a day unless I do too much then a lot more and the pain knocks me down hard. Doing too much is walking slightly more than the day before. I know even though people can have the same 4 vertebrate fused, that there can be a wide range of what the surgeon has to do in there to fix you. And that each person has a unique physical situation that requires treatment and perhaps limits success. But I am in a hard cervical collar for a minimum of 3 months 24/7. I wonder if you should have been stabilized longer? I am not even allowed to be in a car for 3 months as a passenger! I am stuck at home. I hope to work from home a bit after 6 weeks, but then only part-time. So it sounds like you still have a difficult time swallowing? Your situation reminds me of my low back surgery which they called failed. It relieved some of my pain but now I am stuck with the nerve damage, numbness and pain down my leg to my foot forever. They say it is due to mostly scar tissue and going back in would just create more scar tissue. Anyway, I am rambling at this point, but I am very sorry to hear of your lack of success on your surgery and wish the best to you. And hope that I will have fusion (because I have osteoporosis) and reduction in pain so I don't have to take pain meds on a regular basis. Although my doc said he could get my pain down to a manageable level....your input is helpful esp. on PT advice.
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therabidweasel
Regular Member
Joined : Feb 2014
Posts : 113
Posted 6/28/2014 9:43 AM (GMT -6)
OK, well here is a pic of my scar. You can see I cut the darned thing every time I shave:

VIEW IMAGE


I was immobilized in a soft collar for 3 months and the day I removed the brace was the best day of my life. Women and older people have higher rates of non-unions so some doctors require that they be in a hard collar. . .and I extend to you my deepest respect. The fact that you are doing so much 3 weeks out is absolutely incredible. 3 months out I could barely use a rice cooker to make myself 3 bowls a day. I would chew my neck off to get out of a hard collar for 3 months. . .I wear them on occasion when my neck is tired, but you get sooo many questions. . .

I never expected this surgery to reduce my pain, I have spinal cord damage and there is nothing it could do about that. I am saddened that my neck has started going out again because, as I said, it is extraordinarily painful. I would seriously consider a posterior fusion of C7 because I do want to lay down and die when it is out. I would probably start heroin if I had some in front of me when its out. Luckily, I have no idea how to buy drugs and dont know anyone that does.

I got some trigger point injections of depomedrol and b-something-caine. They said it would work best after 7 days, but it only did a little bit for three days and now 12 days later it is nothing.

Oh by the way my shrink called and canceled my appointment. I am so done with that moron. Three strikes is more than I give a medical doctor and this witch doctor isn't getting another penny from me. My wife is absolutely livid with her, scary livid.

And so I am talking to you guys. It gives me so much comfort to know people that understand are out there. People that get drawing doodles on a piece of paper is not going to do anything but allow me to contemplate the details of my ending. I need relief from this pain, it is a burden I can now, after 13 long years, hardly bear. I worked my butt off to get where I am in life and now I dont even care what is next.
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Taller Now
Regular Member
Joined : Jun 2014
Posts : 356
Posted 7/14/2014 3:13 PM (GMT -6)
Rabidweasel- How are you doing now? I feel for you. I cannot fully understand your situation but I get it. It is awful and you can't tell people how you really feel because they only want the positive stuff. It is like you have the plague if you are honest and say "I am in crazy pain and life sucks right now". I am so sorry.

I am a bit over 5 weeks post C4-7 acdf with similar preop situation as you (extensive work beyond just the fusion) and pain since 2005. I am very frustrated that I am still in so much pain. I barely do anything extra like a bit longer walk or visiting while sitting with someone for a couple of hours and I am in knockout pain and down for 1-2 days. I am so frustrated. My doctor said I could try to work at six weeks part time (I have to work from home since I am in a hard collar and not allowed to even be in a car as a passenger for 3 months). I am a scientist so I can do a lot of work remotely. I have clearance to be off for 8 weeks, but even then will have to work from home. I want to work just to have something to do....

At the end of August I get my X-rays, but because I have osteoporosis I don't have much hope of getting out of this hard collar soon. I can also relate with your depression. I am stuck at home, alone during the day, can't do anything because it hurts too much and going nuts. I am freaked out because if my bone doesn't fuse the consequences suck even more. I would appreciate hearing how you are doing at this point, even if it is a reality check. A friend came by who had similar surgery (one less level) and he said 5 years! I said OMG! And wanted to cry - and I don't cry.... This surgery is a big deal. Even my neurosurgeon made sure I understood that. He looked at my husband and said, "...out of the blue even 6 months from now your wife will look at you and tell you she needs to lay down NOW! So don't be surprised at the length of time this will take to recover." :-(

I have taken all of the meds you mentioned in your list. Baclofen never helped me and long story but sent me to ER once with other drug interaction, gabepentin made me stupid, and tramadol helped pain but makes me crazy in the head and hyper. Only thing I take now with limited benefit is lortab and Valium, diladid in emergencies. And of course, as you have found the doctors don't like to give you some of the stuff you really need. My youngest daughter is a surgical nurse and so she has helped advise me on some of the meds and the aspect of taking minimum to avoid building tolerance and losing effectiveness. You would think with all the studies and science going on that they would have effective pain killers.
Hang in there.
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Taller Now
Regular Member
Joined : Jun 2014
Posts : 356
Posted 7/14/2014 3:33 PM (GMT -6)
P.S. I too have a similar incision, from my chin to clavicle vertical. Still numb under my chin. My neck is 1" longer since surgery. Also, have to wear bone fuser 4 hours a day which I swear increases my pain.
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therabidweasel
Regular Member
Joined : Feb 2014
Posts : 113
Posted 7/21/2014 7:44 AM (GMT -6)
I apologize for taking so long to get back here. But I have finally taken a day off. I went with my wife to a nursery and we walked around a large garden and selected plants. She pulled the cart and I did not help lift, unload, or plant. Just the 1 hours and ten minutes of browsing. My neck is destroyed. I actually have been fishing in some very rough waters in the North Atlantic and each time my neck seems to recover to a little better.

My wife has found a job she likes and it is complete with a 20% decrease in pay. I dont know how I feel about it, but the decrease in money is noticeable.

My pain is staying the same while my medications are escalating. I guess I am building a tolerance. I have started seeing a hypnotherapist and a masseuse and my suicidal thoughts are reduced. I dont give a darn about my career at this point and I really just want to rest. We canceled our vacation plans this year, that was demoralizing. My dog is getting so old I just keep thinking every time I take him for a drive, or a pitiful "walk" or swim it may be the last. I have no idea how I will cope with losing him, I dont know if I can.

My life remains objectively awesome. I do things weekly that I never dreamt of as a child. But, I am still taking no joy from them and am a huge burden on my wife. I am seriously considering a big life change. I cannot stay like I am.

I am so sorry that anyone might identify with me. But I am so grateful that you guys are here.
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Abilene
Veteran Member
Joined : Apr 2014
Posts : 986
Posted 7/21/2014 8:48 PM (GMT -6)
We're still here any time you want to check in. I'm glad fishing is not as hard on you now-guess you remember the sun block.

You said in June you would consider a C7 fusion. Has that been discussed? Also, do you ever get good rest at night, even half-way good? I doubt it. Hope your 2 new modes of treatment work well for you!
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therabidweasel
Regular Member
Joined : Feb 2014
Posts : 113
Posted 8/9/2014 10:44 PM (GMT -6)
Fishing is great as long as my neck is not out, but it takes a significant toll. I am getting to where I cant really work a full week anymore. My PM made what I think was a very wise decision and put me on a 12mcg/hr fentanyl patch. I came home at 230 friday and went straight to bed. The neurogenic pain is not reduced as much, but I am no longer getting hives. . .not full blown hives anyway. I can tell when it is time for a neurontin without consulting my various medicine timers, pins and needles and crazy stuff. The 3rd day on the patch is killer and I have to take multiple percs to get through it. Waking up the morning I change the patch (morning 4) is hell on earth. Still, the consistent relief beats the socks off riding the roller coaster every few hours. I'm on 25mg 3x of Effexor and must be getting every side-effect listed. I wont go into details.

I saw my neurosurgeon for the final time. He was beaming with pride at the xrays of the reconstruction of my neck. Deservedly so, he gave me back some lordosis and I have plenty of room around my cord and am no longer at risk for paralysis. His face deflated when I told him that my pain had increased and I was now on a fentanyl patch. He asked what was wrong with my scar, was it not healing. When I told him I cut it every time I shave his face deflated more. I ended up giving HIM a pep talk as we walked out, I knew an increase in pain was a possibility. Even he said it and he also said in 23 years he had never seen anyone with cord compression at so many levels. . .although there are people with much more severe compression than mine. The really crappy part is that I have had significant acne for most of my life and 2 months before the surgery I began shaving with a double edge safety razor and the acne is disappeared. . .people actually comment on it. The scar just happens to run right through the middle of the worst spot to shave, insult to injury.

So hypnotherapy has been revealing. I was given a tool that allowed me to lower my pain (while still on meds above) from a 4 to a 3, maybe even a 2 but it only lasted 15 minutes at a time and I could only use it for 1 week.. The hypnotherapist asked my unconscious mind if it would mind blocking the pain signal and it said "yes." On further investigation it would seem that it does not trust me to not go out and do something stupid (like race motorcycles) if I am pain free. The therapist says that the unconscious mind is very protective. Heck, it makes sense. . .I probably would go out and race bikes or something. It will be interesting to see if I make any progress there. Although I still consider it witchcraft and doubt its ultimate efficacy. But I am an empiricist, and the pain reduction was significant.

No discussions of additional fusions (which would be posterior) have been had. But I feel like I am going in the wrong direction and the rate is accelerating. My suicidal thoughts are lessened, but I cant say why. Living as I am is just forcing myself to go through the motions. I enjoy fleeting moments of happiness, but I mean they are really fleeting, like a smile. I'm a foodie, but I dont care what or if I eat these days. I ate 3 slices of frozen pizza today. I only drink to kill pain, I dont enjoy a nice bourbon or scotch anymore. Geez I hope very few of you understand this. This is no way to live. My wife cries because she doesnt know what to do to help the pain and I think she is scared I may pull the plug. I've been making it by a week at a time for so long, it just seems like whats the point? I know it would devastate her, but it would also make her a millionaire. I wouldn't trade her for anything, but if I was a car I'd be rusting on blocks in some redneck's front yard, broken down and not worth repairing. Not a good car either, I'm probably an AMC Gremlin at best.

I think that's enough darkness for one night. Thanks for reading, be well.
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nvrthesame98
Veteran Member
Joined : Jun 2008
Posts : 6706
Posted 8/10/2014 2:27 AM (GMT -6)
Hey I had one of those cars! Lol eons ago! I'm glad you checked in yet sorry you've not seen much change in your pain levels. Don't write off the voodoo Dr just yet! As an old gal raised in the mountains and hollers of KY I can assure you some if not most of it works. As a Nursing student I spent 4 months rotation in the gross anatomy lab absolutely awed by how the human body works so finely in tuned to each system and needless to say I ended up in Neurology simply in the hopes I could gain the secrets of how the brain knows just exactly the body needs for survival and survival is its main objective at all times.

After 30 years I didn't figure it out but am no less awed today but more stumped from all I have seen. Pain ratings are one of those widely subjective tools used for interpretation yet it's useless most times because every persons views of pain are so greatly different. I have used this example here before but a repeat can't hurt. Lady comes in dressed to the 9s,6 inch heels, makeup and hair done to perfection and wearing the tightest pair of jeans they could have poured her into, got a gorgeous Coach piece of luggage slung over her shoulder and boy it looks packed! Complaining of back pain and giving us a 10 on the pain scale?? Really? We here see 10s used daily and I think we use more in trying to convey a point and not as a literal point. You would not see a true ten walking, talking, as most are as you described. Their brain seems to have pulled the shades on their window to the soul! If they're capable of comprehension they may nod at your question, their voice isn't usually in use, they appear completely relaxed yet when you touch them in any way it provokes an over reaction response like you've tazed them. They will rarely be able to follow simple commands. What you see in their eyes is downright scary and they are looking straight through you. You know, lights are on but nobody's home? They dont scream, cry, nothing just that look. So from your description I knew you had been there!

Okay enough of that let's talk about you and what may help. Ask your Dr if he's open to allowing a 48 hr changing schedule on the fent. Does away with that 24 hr lag time when the meds coming and going. Many CP fent users change 48 versus 72,very common. Next has cymbalta or lyrica been tried or just the Effexor? Which by the ways notorious for contributing to the "I could care less " state of mind. Maybe it's time to consider your going into full-time fishing mode and applying for disability? Then you would still be filling the bowls and plates but without the pressures of a career, well probably with spam instead of ham but it beats empty!

It's also a real possibility this surgery may be classified at some point as failed, to say so yets jumping the gun. As CP goes we all learn to respect others choices or lack of, treatments because as we always say what works for me isn't necessarily going to for you. I learned distraction therapy and I suppose your doodling Dr is using the website as just such a tool. Distraction is my number one modality to those higher on the pain scale numbers for me. I use music rather than pen. Hydrotherapy is my maintenance modality and I use that several times a week. So we all devise a plan in first line defense and use whatever works for us.

Glad you've talked those alternative thoughts out with your wife and angers expected from her so keep talking to her assuring her that the thought of leaving her never crossed your mind that you were merely looking for a pain relieving solution.

Keep putting one foot in front of the other, hold on to the hope a new day may bring with it answers or relief and keep the voodoo Dr, sounds like she knows her stuff! Above all keep putting words to others out here.
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therabidweasel
Regular Member
Joined : Feb 2014
Posts : 113
Posted 10/9/2014 4:36 PM (GMT -6)
If you guys are like me you are probably wondering how I am now, LOL. The good news is that I did get the fentanyl every 48hrs and my doctor is committed to keeping me in tolerable pain. I continue to see the hypnotist weekly although I have only been hypnotized twice. We're working on activities that will help my unconscious mind trust the completely-without-fear part of me that has evolved to full flower in my adrenaline seeking. I also had a friend practice using EMDR to remove a very specific symptom of my chronic pain and it's probably been as effective as the fentanyl is on the other pain. Nothing else has touched this particular pain in my shoulder except the EMDR. . .oh, and Salonpas. Those Salonpas patches work way better than any expensive prescription patch or compound medicine. But I found the EMDR shortly after the Salonpas and haven't needed it since. IF I thought my unconscious would accept it I would request EMDR for my whole friggin body! The bad news shall follow in the many pages below this.

First, the masseuse/holistic witch doctor saw me once. Told me to go get a $50 foam roller and that he would email me how to use it and subsequent visits we'd actually do some deep tissue work etc. This was just a 1.5hr meeting discussing my symptoms and possible treatments. It's been 4 weeks and I have not heard from him. I've only emailed a few times as I have been very busy at work. I looked up some youtube videos on how to use the roller and I'm using it with minor success. I must be witch doctor kryptonite or something, they see me once and disappear. I am seriously starting to develop a complex about it.

Which brings me to work. Among few other things I have done recently I pulled out all the stops and assembled two fairly complicated lasers in a single day. . .I believe the expectation was that it would take several people a few months. Not really what I was hired to do, but hey I can do it and it pays the same so why not? That seems pretty typical about this new job. They are the least efficient, most poorly run rag tag group of (mostly) Ivy league PhDs one could imagine. I literally ran projects more methodically in junior high. It is ridiculous. I am very ashamed to work there. So anyway the lasers nearly killed me, but people were impressed. That felt pretty good. 18 years of experience, top of my game and pretty highly respected with excellent references from the CEOs of companies where I have worked, multiple money-making patents. . .they canned me. THEY canned ME, that is a blow to the ego. They run solely on government contracts and haven't been winning many, so I'm out. The good news is I get to keep my insurance until the end of the month. Boy am I glad I'm not teetering on the brink with major health issues! The only positive note is my tenure with this company was brief and they had outstanding benefits so my surgery was basically free. It typically takes me 3 months to get a job once I've found a place that wants a me. But companies don't seem to be hiring much and never really do during the holidays, so I may be in for a long, cold, medically unstable and unfunded winter. I also do not want to, and probably cannot afford to, move, but since I am highly specialized it may take a lot longer.

SO yeah, not getting any better over here. The fentanyl almost feels like it isn't working anymore. I get no relief when I put on a new patch. I do get relief when I drink on top of a new patch, but I can barely force myself to have a drink these days, it's just a waste. I suppose that's a good thing, but it used to be something I really enjoyed. The other good thing is we'll be needing the money now anyway. Muscle spasms are now worse in my neck than before surgery. I thought the fishing was helping, but slowly realized that it wasn't, at least not anymore. The last few times I fished it was in a hard collar. As I've said before, I love food, but I could eat three protein bars a day and be fine. I've lost 15lbs. I didn't need to drop any weight, but I am by no means super skinny. Dont care about food or drink, dont care about job but do require funding to sustain life.

about taking disability. . .my pain doctor believes work is a good thing. That it distracts you from everything that sucks about this CP. I agree with her, at least for me. But in the same breath she tells me that driving to work (and I have a long commute) is a risk as I am technically under the influence 24/7. And I can barely make a day sitting in a $2k office chair on those drugs. I come home, eat dinner that my wife has fixed during my pre-announced commute, and pass out in my chair, most nights, but always thursday and friday. I didn't go to work today because my neck was thrashed. . .from wearing a tie all day yesterday during an interview. Anyway, I tried to get the CP doc to recommend I go to part time at work. That would have allowed me to keep full-time benefits. But she wouldn't do it. She is definitely not going to disable a 38 year old. I dont think I could live with myself either. There are so many people that have it way worse than me and are out kicking butt. I walk with a limp, but otherwise I look normalish + a frankenstein scar on my neck. They cant even really point to an MRI or xray or anything and say what is wrong. . .which is the predicament of a lot of people here I know. I am really, really suffering, but my work is who I am. It the only thing I do well, and increasingly is nearly the only thing that I can (sort of) do.

All that said it is feeling like a major life change may be necessary. I'm not sure I can do what it is that I do mentally on these heavy drugs. I feel almost like an imposter of myself these days. Taking a job with a company I have never respected, I am still sort of glad I'm doing "grunt work" so I dont have to do a lot of calculations and/or embarrass myself in the process. A major part of my success has been in the lab, and I am not sure that I can continue to stoop over a table and turn knobs all day. I can push myself to do it for 30 minutes at a time, but they tell me I am not supposed to push that hard. It takes all of my will. I'd really like to teach at pretty much any level, but I really do not do well in political organizations. Never have. My sense of humor is an acquired taste. For some (maybe that) reason I make really terrible first impressions on about 50% of humans, the other 50% grow to hate me over time. OK, enough job pondering its a pain forum.

As always I thank you for reading and appreciate any questions or comments.

In summary: What did I just type and why did I use so many commas?

Post Edited (therabidweasel) : 11/25/2014 9:41:45 PM (GMT-7)

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slowandsteadywinstherace
Regular Member
Joined : Sep 2014
Posts : 47
Posted 10/10/2014 6:21 AM (GMT -6)
I just wanted to say hello.... You've been through the ringer.... Huh??

I am 35 years old and understand the last of what you just wrote. Sometimes a major life change is needed.... I'm not personally ready to throw in the towel in regards to my career, but if that's what needs to happen, to ensure even a sliver of a decent quality of life, so be it. My job is incredibly physical and I think I may be slightly unrealistic about my return. Frankly.... It doesn't matter at this point. All I really care about is trying to get better. Manage the pain and hopefully see some of the symptoms go away once surgery happens.

Reading your thread makes me a little nervous.... lol.... It's good to read though. Sometimes we need those reality checks, so when things don't turn out ideally, our expectations aren't as high.... So I thank you for that. At least you are helping people like me.... I'm sure thats not exactly an aspiration of yours, but you should know that I appreciate it.....

I've been trying to look at all this with optimism. It can be hard to do. So much of my time is spent sitting here, unable to do stuff I want to do and I try not to throw pity parties for myself, but it's kind of hard not to. Constant pain and being stuck in the house will takes its toll on even the best of us.

Wondering how your experience with the MM has been. I live in NY and the laws are just starting to pass here. Thankfully I have a friend that helps me in that department. ;) A few years ago I blew out the labrum in my shoulder and I didn't respond to any of the pain meds. The only thing that helped take that edge of was MM. It is really the only thing that helps me even gain an appetite, to want to eat. I am also a foodie...lol. I have a love of fresh, delicious creations, but lately I just have nothing to give. I would rather eat a bowl of cereal than go through the pains of preparing a beautiful meal. Unfortunately I have 3 children (not unfortunate to have the kids, just that they require food...hahaha) that require feeding, so I suck it up and make dinner still, but it's always simple, easy meals that I don't really enjoy.... Sigh.

My neurologist, therapist and PCP told that if the MM was legal here, they would encourage me to use it and prescribe it if they could. Even though they know it's not legal here yet, they also know the benefits of using it. Especially for nerve pain. I personally have resisted all types of pharmaceuticals up until recently. I finally agreed to lyrica, because the nerve pain was getting unbearable.....

Have you noticed it helping your pain?

Chin up friend....I'm sorry for all you've been through. I sure hope things take a turn in your favor.....

Lila

Post Edited (lila w) : 10/10/2014 6:25:26 AM (GMT-6)

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therabidweasel
Regular Member
Joined : Feb 2014
Posts : 113
Posted 10/12/2014 11:03 AM (GMT -6)
Hi Lila! Thank you for the response. I really appreciate your feedback that you found this thread helpful. I want to help others as much as I can and as I've said before this also is the only place I can vent. I saw that your surgery is scheduled for early Nov. My advice is to do EXACTLY what you are doing with the trip. My wife and I did the same before mine and it was the best trip ever, even though I could hardly do anything. Also, do not worry. You can't psych yourself up for this one, but you can psych yourself out. One day at a time, one foot in front of the other. Learn as much as you can and be as prepared as you can be and let it ride. But I think all of us definitely get where you are coming from, it is perfectly normal.

Oh, as for being through the ringer. My life has been long periods of boom followed buy short periods of enormous bust. That's my lot and I've accepted that it is my purpose in life to serve as a warning for others. Thankfully the internet let's us do that.

Anyway, chin up, I'm a little different than white beard on this one. Think of all the possibilities, but think of the PROBABILITIES of those possibilities as well. Prepare for them with both in mind. We humans aren't good at understanding probabilities, but I know several people that are doing excellent after their ACDF. If you have had long-term cord compression like me, you might end up with my result. But even so, I think women deal with pain better than men and I know women are tougher than men, mentally and physically.

Finally, even in my situation, I am so far from the bottom. I now define the bottom as eating your cell-mate's methadone soaked underwear, like what happened in Kentucky recently. I am so far from that. Thank God.

PS. Regarding MM, it was a friend of mine also in CP that tried 4 strains for me. I'm only just becoming familiar with the terminology and the different types through an acquaintance. The ones that regular smokers say "hit the body" actually amplified his pain (which is friggin messed up) but the ones that "hit the mind" worked about as well as alcohol without the hangover. Once it becomes fully legal I may give it a shot, but I typically have to take urine tests for jobs so I may not. I am glad that you find relief in it. I personally put everything into the same class from coffee to heroin. You've got to know the up and downside and make sure that you are in control of your consumption and the exact composition of what you are putting in your body. I think MM will help with standardization and quality assurance, and that is a good thing.

Post Edited (therabidweasel) : 10/12/2014 11:11:29 AM (GMT-6)

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Abilene
Veteran Member
Joined : Apr 2014
Posts : 986
Posted 10/12/2014 1:26 PM (GMT -6)
Hello, it's always good to read your updates and especially good that you are able to help Lila.

I looked up EMDR. That sounded interesting! Another doctor disappeared? How many times has that happened? Chickens!!

Teaching sounds like a great career for you. I truly hope that or something works out for you.

I have no idea why you used so many commas but I was wondering how you were doing. And it sounds like maybe a bit better.
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therabidweasel
Regular Member
Joined : Feb 2014
Posts : 113
Posted 10/12/2014 4:29 PM (GMT -6)
Hi Abilene! Thank you for reading. I've been tempted to start a thread about EMDR for chronic pain if there isn't one already. It's really a piece of cake, but there is a special protocol for chronic pain.

In my case i found via hypnosis that my unconscious would not allow all the pain to be blocked. Even under hypnosis the conscious me was like "That makes too much sense to be wrong." I am STOOPID and would totally start sky diving or something. So what I am saying is that I don't think my unconscious would allow EMDR to work for large portions of my body. So before people consider trying it they should really think about whether they "need" their pain. Or maybe get hypnotized first. In my case it was total coincidence, the hypnosis preceding the EMDR. It took two treatments and I think one more would help.

Sometimes I am concentrating on work and therefore cannot access the "good" image I have stored in my mind. In those cases I have had reasonable success using bilateral audio stimulation through an app on my phone. There is all kinds of music for this, but I prefer just the simple tone.

As for the witch doctor, man i really thought we connected and when he saw my MRI and how awesome the reconstruction was he was nearly jumping up and down. I am afraid something abrupt may have happened to him or his business.
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Backtolife
Veteran Member
Joined : Aug 2014
Posts : 819
Posted 10/12/2014 5:54 PM (GMT -6)
Not to hijack this thread, but Lila, I've been using MM for several months now and I might be able to help you out, I learn quickly. I did post a thread about it within the last several weeks, I'm sure you can find it.
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Abilene
Veteran Member
Joined : Apr 2014
Posts : 986
Posted 10/13/2014 8:19 AM (GMT -6)
A thread on your experiences with EMDR would be great. I've not read about it here before. There's a thread "besides your meds, what is your most indispensible form of pain relief". Lots of good ideas came from that. Anything that gives others options to consider is great. I'll be watching for your EMDR thread.

Is you C6-7 still going out on you? Still no mention of fusion there?
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therabidweasel
Regular Member
Joined : Feb 2014
Posts : 113
Posted 11/1/2014 5:09 PM (GMT -6)
This time last year, before the surgery, i took a very relaxing beach vacation that really rreplenished my neck, i felt great for a few weeks. We just got back from a 50% longer vacation, purchased before getting laid off, where we did not do any activities; last year we did something each day. My neck feels no better, I only seem to have, at best, 4-5 hours of unsupported neck time each day, period. Today is the first day of us being uninsured. I am stretching my fentanyl as far as I can stand, same with the percs. Since I got off of Valium many weeks ago I have been having twitches, occasionally violent, in every muscle of my body...including muscles you cannot consciously recruit by themselves. I tweaked my neck pretty good when a single ab muscle fired and ripped my head 8 inches off the pillow as I was just falling asleep. I feel like even my intestines are flexing and conspiring against me. I read on here last night that these are the early symptoms of seratonin syndrom. I called my neurologist and pain docs, neither responded so I am dialing back on effexor because I do not want to end up in the hospital uninsured. I'll update the EMDR thread in a few days when I'm not wallowing Iin self pity.

I never answered about C6-7, yes, muscles in wicked spasm pull it out 5x a day or more. I really do not want a posterior fusion and I think I'd like to see about getting those muscles paralyzed with botox or something. I just need to get my truck fixed so I can sell it to buy some insurance. . .it's been difficult and now Iit is cold here. Heating my garage is very expensive...enough wallowing.

Be well.
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Sore2theCore
Regular Member
Joined : Nov 2012
Posts : 216
Posted 11/1/2014 9:52 PM (GMT -6)
I had a double disc. Acdf fusion in April. Great surgeon, reputation as one of the best in my area. And I am still healing. No way I could make it thru a day at work. Of course, I still have significant arthritis and other disc issues in my neck and low back so the fusion was only expected to help somewhat. At least now I can hold up my head.

And btw, I am typing here while having a good 7/8 level of pain. Sometimes the pain is so bad you push thru it to look for answers.

Wish you luck and healing.
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Sore2theCore
Regular Member
Joined : Nov 2012
Posts : 216
Posted 11/1/2014 9:58 PM (GMT -6)
@tallernow I have that bone growth stimulator too, and it makes my neck hurt more, it's like a deep ache.
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therabidweasel
Regular Member
Joined : Feb 2014
Posts : 113
Posted 12/12/2014 12:13 AM (GMT -6)
Today, Dec 11, is the one year anniversary of my surgery. It's been an eventful day in itself, but in summary: I am still unemployed with nothing for sure but many things in early stages. . .I doubt much progress will be made until the new year. Its not a comfortable situation. I bought my first month of Obamacare starting in January. Boy is it crappy HMO insurance compared to what I am used to, even the platinum plan, which was $1300/mo. My multistate plan includes exactly one hospital in a neighboring state and that is it. Not that I got the platinum plan, but at least we will have something. Water started leaking into my basement from my boiler chimney last night. I did my first ever masonry work today and I'm a little afraid to go down to see if it held. I really dont want to get out of this chair either. My truck is still on stands. I swear things are breaking around here like crazy and I am falling behind despite working myself to death. These are small examples of why I said recently that I felt like life was trying to smear me out.

One thing I have mentioned in other threads is if you find yourself paying cash for drugs in America, please be aware of the discount programs like goodrx; they even have an app for your phone. #2 know that many pharmacies will match the best cash price you can get, which has been tremendously helpful. I just pull up GoodRx on my phone, show the pharmacist the competitors price and it is done. There are two exceptions I know of: CVS will not match prices at all and Walmart will not give any discount on narcotics, including the GoodRx price, even though narcotics are listed as discounted. I just checked inside the app and it says that "some pharmacies may not honor coupons for controlled substances."

I am currently on 25ucg/hr fentanyl patch, 12mg tinzanidine, 2400mg Gabapentin, 100mg nortryptylin. I'm burning through old tinzanidine for economic reasons and then I will switch back to valium, which is way more effective for me. The jump in fentanyl (from 12ucg) kind of sucks. The old patch was half the size of a postage stamp, stuck well, and delivered meds smoothly. The 25ucg patch has a bladder of liquid, is bigger than a 50 cent piece, is prone to detaching due to its sheer size, and the dosing seems all over the map. Sometimes I feel really thin on meds and sometimes I get blasted with what feels like a massive dose. I miss the smooth delivery of the smaller patch, but my pain or my tolerance or both have escalated to the point that I needed to address it. This is still a smoother ride than short acting pills every 8 hours.

One thing that does suck with the fentanyl: I cannot sleep the day I put it on and I dont sleep much the second day. For the last many months I have been on a rough schedule of 42 hours awake, 6 asleep and repeat for 2-3 weeks then take a 24 hour nap with no warning. Until I go to sleep after the long nap I feel extremely sedated. But on average I feel fine during the day and being awake all night has allowed me to do stuff like post this drivel. When I was working I seemed to be able to make it work, although I definitely was not 100% mentally.

Pain-wise the slope is not in a good direction. I also definitely feel like the neurological involvement is increasing. My left hand below the wrist is almost gone and the right hand isnt far behind. My legs are leaving below my knees as well. In general those parts feel swollen and my skin feels like I have a bad (but not blistered) sunburn pretty much EVERYwhere, if you catch my drift. Even my face, which is mostly above the fusion feels sunburned. It is perhaps the worst of anywhere in my eye sockets, but my gums and tongue are very involved as well. I have not told my PM ANY of this because she would require me to come in before refilling my scripts and I do not have the money to pay cash for the visit. I haven't told my wife because I dont think I can communicate it in a way that wont scare her and I keep hoping that I'm just dehydrated or something. To add insult to injury I have a large bone spur that has risen out of my right wrist area this year. I'm right handed and can no longer make a twisting motion with that hand and over the last many weeks it has become fairly painful. I dread shaking hands at my interviews. On the good side, I can go a good 4 hours erect, maybe 8 if I am careful and not a lot of it is walking. I still cannot believe how long it takes to recover, if you can even call mine a recovery, from this surgery. My fusion looked great when the surgeon sent me on my way 6 months ago, WTH? Neck popping and gristle is very common and still disturbing. People pop my neck when they place a hand on my shoulder, my wife pops it at least once a day giving me a hug or maybe when rubbing my shoulder. The pops almost always provoke the neurological symptoms in my face and sometimes elsewhere. I sure don't want to have major surgery right off the bat at my next job, that did not work out well.

The surgery and after effects are only one of a few very negative things that have occurred to my wife and I this year. I mean, this year is definitely the worst year of my life and I have had some real doozies. I would tick them all off, but really, who cares? I can't. I am still seeing my therapist/hypnotist who is cutting me a very good deal after losing my job rather than breaking off my treatment. I tried to go less frequently, but that wasn't cutting it for either of us. I feel awful. This guy is worth every penny of full price to me, but I could only afford to see him once a month paying cash and I do need him more frequently. My friend also performed another round of treatment on me and expanded the EMDR to address another pain at the base of my neck. Thus far it seems to be doing a very decent job; it has been one week. The first EMDR, which was reinforced a total of 4 times, is still very effective. Through all of this ordeal, I think Gabapentin, EMDR, and Fentanyl have been most helpful, and in that order. I am really impressed with the EMDR and hypnosis is not far behind the fentanyl. So there are definitely many things for which I am thankful.

OK, well I cant bare to whine anymore so I cant imagine how you feel having suffered through reading this rambling post. I thank you and wish you much better than me.
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