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Severe pain three years after acdf
pacdom posted:
I am a physician assistant/acupuncturist/teacher. I fell at work four years ago, sustaining a head injury, C6 spinous process fracture and C6 disc protrusion.

I was rushed to the ER. The short story is that no x-ray was taken of my neck...just my head due to the severe laceration over my left eye. I had immediate pain on the right side around c5-6. My left wrist, shoulder and both knees were also injured.

Unfortunately, this was a worker's comp situation and xrays were not approved until 6 months after the injury and were misread. The fracture was later diagnosed by a physician giving me an epidural injection. Believe me, "Oh my God, your neck is broken", is not what you want to hear during that, or any procedure.

I continued to work and "man" up, because that is what you do in my profession (even if you're a woman). The pain in my neck continued to get worse with eventual pain and parasthesias down my left arm to the 4th and 5th fingers. I dropped a loaded syringe one day at work; fortunately, it landed in my shin and not the patient.

After that, I decided to have surgery. I had already consulted an ortho spine surgeon and a neurosurgeon...because of the fracture, I decided to go with the ortho guy, which could have been my first mistake in the whole fiasco.

Anyway, I woke up from surgery with the original pain gone and a new and impressively severe pain on the right at the level of someone has a meathook in there and is pulling with all their might....My family was at my side when I woke up and the first thing I said was, "something is wrong!"

My surgeon did not take my complaints seriously(another long story). One other neurosurgeon said I now need a foraminectomy, but later changed his mind after a negative emg, another neuro said if it was between me killing myself and surgery, I could twist his arm to do another fusion at the level below my current one. A third neurosurgeon reviewed my records and imaging, had his assistant call to tell me, "it isn't something he would operate on". Another pain doctor said she would do botox to ease the spasms, but called my attorney the next day to say she had changed her mind.

This is very frustrating. The CT myelogram clearly shows a lesion at the level of C8 where my pain is. I'm a PA and I can read the darn thing! It is known that a acdf can cause the disc below to protrude almost immediately after surgery. I think this may be the lesion on the CT...

I have tried EVERY treatment I know of: acupuncture, massage, chiropractic, prolotherapy, meditation, yoga, nutrition, shamans. I am becoming one of those desperate people in pain. My heart is broken, as a PA, but especially as an acupuncurist, I never thought I would be dependent on narcotics just to perform minimal activities of daily living. I used to run marathons, cycle, knit, make jewelry, ski and had just a wonderful all around life with a fiance of 10 years who left me. Ironically, he is also a healthcare provider and was afraid I would be permanently disabled. Most of my friends have abandoned me because they just feel they don't have the time or energy to help...or maybe they just don't know what to do anymore.

I have been forced to move to the south to live with my parents. I am contemplating spending the rest of my life savings to go to Mayo Clinic.

I am hoping to find some support here. Thanks for reading this(if anyone did). Maybe my suffering will make people out there thinking about getting an acdf to think twice....If anyone has any advice I am more than willing to take it and would also be thankful for prayers. I just want some of my life back to that I can help others; I miss being there for my patients...

charity1234 responded:
Hi Pacdom,

I cannot offer and word of wisdom to you right now as I have never dealt with anything like this but I just wanted to say I am so sorry for all the suffering you are going through and the pain you are in. You will be in my thoughts and prayers, sending gentle hugs to you!! I am curious to read what the more experienced people on the board and those who have suffered from back/neck issues will have to say but please know that I will be thinking of you!

gailb54 responded:
Hi M,

I wish so much that I had some good answers for you. I only have sympathy and I really do feel for you. It infuriates me that your surgeon didn't take your complaint seriously. It's another version of the "It's all in your head" attitude. What is it with so many docs who will not listen?

I'm not a back/ neck patient, but others here will post and perhaps will have something to offer you in the way of suggestions. I'm RSD/CRPS, at least I think I am. Sometimes on the weekends it can be slow here and you might not get many responses right away but keep checking back for 24-48 hours.

Do you have a doctor in mind at Mayo? My best friend wants me to go there but my life savings is already gone. Can you work at all? It sounds like you can't. Are you on disability? Anyway, I was just wondering if you have any specific knowledge on Mayo that you were hoping to look in to. I'm near Dallas and have been shocked at how hard it has been to find someone who might be a bit more knowledgeable in what I need. We have a good teaching hospital here, too, but the one doc I saw there was a big disappointment. Another doc referred me and I had my hopes up and this guy spent just a few minutes with me and suggested amputation with very little information. I didn't go back. Are you near any other hospitals/ clinics that might not be as expensive as traveling to Mayo? Maybe someone here could suggest something if you say what state you're in.

I'm so sorry about your fianc? and friends who have abandoned you. I have had the same thing with my friends and have a bit of a broken heart myself. I think you're right about them not knowing what to do but it's just so deeply hurtful. I've been shocked at the long time friends that have just decided to turn their backs on me. I would never have thought they would have done this.

It sounds pretty pathetic, but it has helped me to read this board daily and be "around" others who at least believe me and know what it is to suffer with pain. I pick up ideas from time to time that have helped and some days and nights (like tonight!) it's been nice to just read a post from someone here who seems to care. You might try coming here for a while and see if it just helps a little bit. You have so much knowledge and training that could help others. Along with your willingness to share what you have learned through suffering, I think you could be very helpful to others here while you're not able to be helping out at work. There are many people in pain who come here and I really believe your experience could touch lives in ways you might never even realize. I do hope you'll think about it.

What part of the South are you in? Are your parents supportive? Have you tried doing more jewelry or anything since moving? I tried painting a bit after the pain became an ordeal. Sometimes it was a bit of fun but often I got frustrated and felt like it made the pain worse. Haven't done any of it in a few months now. My pain went out of control a few weeks after I had surgery on my little toe almost 3 years ago. I was in Colorado that year and had surgery there and all I could think was "You mean I can't ski this year?" I had no idea all the changes that were to come. I won't give up yet that this is all permanent. Not yet. I hope you can find answers that help you.

I feel like I can't offer much, but if support and prayers are something you want, I can offer that. If you find answers that help you, please let us know. I hope you can feel better soon somehow.

Take good care, gail
cweinbl responded:
"Pacdom," you said, "I never thought I would be dependent on narcotics just to perform minimal activities of daily living." Neither did I.

I've been in constant severe pain for 39 years, since my L5-S1 disc exploded just after my 17th birthday. I too have tried everything. In addition to three disc herniations and four failed spine surgeries, I tried a corset, brace, TENS, traction, acupuncture, biofeedback, physical therapy, kinesiotherapy, injection of steroids and anesthetics, non-steroidal anti-inflammatories, cortisone, rhyzotomy (radio frequency denervation), off-label medications (anti-depressants, anti-convulsants), combination of long-acting pain medication with breakthrough meds and meditation. I've been through two pain clinics and tried everything that they had to offer. Yet, I'm hardly better off now.

However, instead of feeling bad about being "dependent upon narcotics," I'm grateful for them. With powerful combinations of narcotics and off-label drugs, my days are mostly tolerable, as long as I remain horizontal. Without the narcotics, I would have decided to stop living years ago. So, I am happy to be dependent upon opiates. Moreover, just one narcotic (Fentanyl Transdermal) gave me 9 added years of a wonderful career. Maybe I should have said that I'm "delighted" to be dependent upon narcotics.

Each of us must deal with what life dishes out. I was a vocational rehabilitation counselor for 7 years. During that time, I worked with paraplegics, quadraplegics and people with terminal illnesses. Compared to them, you and I are very lucky people. Life with unrelenting severe pain is an exercise in perspective. There are millions of people who will never be able to sit up, walk or care for their bodily needs. Each day, I realize how fortunate I am compared with them.

If you must feel sorry for someone, feel sad for people like us who have no access to narcotics, or those unwilling to take them. Despite constant severe pain and a career that ended far too soon, I am grateful for the medications that help me manage my pain. Life must certainly be terrible for those of us who cannot benefit from narcotics, who cannot access them and (ironically) for those of us who refuse to try them.

Perhaps this was not the "support" that you requested. If so, I'm sorry. But, for each each of us who must live with chronic pain and use medication, there are countless others with chronic pain who are unable to use narcotics, unable to move, to care for their bodily needs or even to get out of bed. I reserve my pity for them.
teresakitty2 responded:
HI pacdom,

I relate very closely to your story because I was an ICU RN who was hurt on the job but kept working through the pain as we are taught to do. Then I got hurt the second time which resulted in me being permanently disabled. (L4-5 herniation and tear with subsequent microdisectomy that failed; S1 nerve impingement, FMS/CF, hyperthyroidism and menopause).

It is devastating to one day be at the top of your game enjoying your life and you job and the next, have everything wiped out by one accident. Now you are an acute and chronic pain patient yourself with limited physical abilities and activities involving a totally different lifestyle. It is a grieving process, one that has taken me a long long time to accept. At first, I was like you in trying everything possible to fix me. However, after two painful years of having injections and other invasive procedures that only added more pain, I had to surrender to the pain and a new way of life. Don't mean give up, no just changed my thinking into a more positive way.

Like Charles said, it is definitely not a defeat to take narcotics if they help you. I also have been on a Fentanyl patch for 6 years which allows me the most pain relief possible. Don't have the highs and lows of short acting meds, never have felt drugged or any other negative side effects. It just allows me to function as best I can without as much pain as I would have otherwise. Also currently am on Trammadol for BT pain which helps mildly like if I want to go out to eat briefly. Like Charles, I'm usually horizontal most of the day with short breaks of getting up to do light stuff. Can walk about 10 minutes with a cane until get sciatic pain and need to stop. Have accepted my limitations and now enjoy photography mostly of animals and nature. You said you knit and make jewelry. That is a beautiful skill that you can always enjoy.

Know losing your friends and fiance was devastating. So sorry that it happened to you. It makes you realize what is really important and how very blessed we are for those true friends and family members who continue to care for us no matter what. Like you said, some people don't know what to do and it is uncomfortable for them to be around us. Others look at us and say, "you don't look like anything is bothering you." There have been times when I wished I could rip my spine out of my back and wear it on the outside! They don't see us when we are up all night for days and have had no sleep because we still "look fine." I have learned not to worry about what other people think of me. Just do what I have to do to be out of pain.

Am glad to hear that you have the support of your parents and that you are surrounded by your family who love you. With your wonderful personality, you will be able to make new friends in time. You are already doing that here. Hope you will stay. You have much to offer.

Hope the Mayo Clinic will bring you positive answers to get relief from your pain and suffering soon. Teresa
freedom1960 responded:
pacdom: I too, can relate as I have some pretty bad spinal conditions, but have NEVER had a surgery. That could change, but not for now. That's a very last resort. I'm surprised, in a way, and in another way I'm not, that one of the first, if not THE first treatment you tried was surgery. That should always be last. I avoided two surgeries so far by getting nerve root injections after epiderals didn't work at all(do they ever?). But after the injections, I felt better and worked for 5 more years! I also have RA and my Rheumy was trying to get me to stop working about 3 years before I finally did. But as Charles wrote the very best "article" I've read from him (he's our resident genius-LOL) and he said it all, and perfectly, be glad you have those narcotics to allow you to do your job, hug your kids, or whatever it is that they help you do. Many people have no narcotics to take when they would do them a world of good, either because they can't find a doctor to prescribe them(many sadist doctors out there who just don't understand-I hope as a PA, you're not like that with your patients who need relief). And then there are the ones who are lucky enough to be offered the proper drugs but won't take them, even though they desperately need them. I don't understand people who could benefit refusing them, but I did till I could take it no longer. I do understand to a point, but not those who can only lie in bed without them when they could actually have some semblance of a life with them.

But good luck to you, but stay away from chiropractors! They broke my neck for me! Just cracks in two vertebrae. But still!

Good Luck to you, and if functioning means strong meds and biofeedback and whatever you must do, do it. I do! I must take my meds to get the edge off, then i go to my office, turn on my computer and put a relaxing screen saver on with some light classical music and put myself into a trance-like state. That can last me for half the day when I'm done and you must know what you can and cannot do too. But just start with the drugs. the other methods are really what helps me the most. Self hypnosis, biofeedback(same thing, I know) but a bit different when done my way, and you can find your own way. A shrink taught me how to start and then said to try different things with music, visual, and just using my noggin! LOL

Again, Good Luck to you, and God Bless,

annette030 responded:
I feel your pain also. I wish I had some kind of answer for you.

As you have read in the posts before mine, many people live in chronic pain. It sounds like you have tried everything else, now try the opiates. None of us ever thought we would need daily opiates to keep going. My best friend at work, (we were RNs in an ER), told me when I stopped working, "Now you can take your pain meds the way you teach your patients to take them and they might even work." She was right, at that time I was using short acting opiates and only taking them when the pain was really, really bad. Wrong! I am on SSDI and now I use my pain meds wisely and they work better.

Am I living the life I thought I would be living? NO! But, I am living and I am happy most of the time. I am not paralyzed.

I strongly recommend volunteer work for everyone, but especially for those who are forced to stop working and miss it. I know what you mean by missing your patients. I have volunteered since I stopped working in 1997-8 at various places.

Take care, hope to see you again.

Hugs, Annette
hurts2beme responded:
I am sorry I would have to agree with Charles... I would do anything to be prescribed the narcotics I need to help ease the pain even if just a little. I pray everyday for that but I also thank god that I am not worse off than I am (there are alot more people out there in this world I have to remind myself that needs my prayers more than I do)... Yes, I get down about being in pain but I am hoping one day a Dr. will wake up and give me the relief I need in meds. I will add you to my prayers and I hope you realize taking pain meds is not a bad thing if you "need them" to function.
pacdom responded:
Dear Charity:

God Bless you for sending your thoughts and prayers; I am incredibly grateful you would take the time to respond....

pacdom responded:
Dear Gail:

Thank you so much for your kind message and willingness to share. I am so overwelmed all the responses I have gotten. I think you are right when you say I will acquire new friends from this site. Finally, I feel as though I can connect with people who understand. I think my pride as a caregiver was getting in the way of asking for help, but I am glad I did.

It is difficult fitting in here in Kentucky and also a bit akward living with my parents at the age of 45.

I have been thinking about your situation all day and I hope you don't mind a few suggestions, although I'm sure you probably know all of it already.

Acupuncture: I have had success with several patients with RSD. One woman in particular who was chasing after a shop lifter and had her hand smashed between the shopping cart and a wall (at Walmart of course)...anyway she seemed to get days are weeks of relief from just one treatment.

Capsaicin(sp?)cream(Cayenne pepper cream: Can be used topically on small areas

Ketamine Coma is a new, risky but seemingly promising treatment for RSD. Ketamine is a general anesthetic which is used to put the patient into a "controlled" coma for up to two weeks. This apparently gives the body a chance to re-wire the nervous system. Most of this is being done overseas in Germany, but I thought that you may glean something from just researching it.

Most of all I will pray for you too. I am keeping a list (on good old fashioned paper) so I don't leave anyone out of my daily prayers.

Thanks again and keep in touch. Michelle
pacdom responded:
Dear Charles:

Thank you for your response and putting things into perspective.

I also use Fentanyl patches and thank God for them. However, I do have to say that part of my shame about it is that I honestly get very judged by doctors I go to and work with. I have also had the experience of having pharmacists and physicians refuse to fill my prescriptions as if I am an addict.

It sometimes is more difficult in that sense when you can actually walk (most days) because people tend to look at you and just see a "healthy, ok...pretty woman and say, "what can be wrong with her?

In short, there are days I do feel lucky, but to be honest there are some where I just don't. Thanks for the reminder.

pacdom responded:
Dear Teresa:

Thank you, Thank you, Thank you for taking the time to respond to my posting. I know you know what I have been through. There were days I would walk out of ortho surgery just crying, call my fiance (the head of a pain clinic) and he would just say take another pill....

And thank God I'm not the only one going through this pain and menopause at the same time. I have read the meds can start that whole process early, which I think it has in my case, as I am only 45.

I didn't mean to make it sound like I am not grateful for the medications (I am also taking Fentanyl transdermal and Ativan at night). It seems like most docs want to focus on when I will detox. I don't think they understand that there might not be a surgery that will just fix this and I certainly know I can't live with the pain as it is for the rest of my life without meds.

I can totally relate to your desire to "rip your spine out and wear it on the outside". Can you do stuff like a little beadwork? I could tell you the internet sites to get the materials. I taught myself how to knit propped up after my first surgery.

My next surgery is on my left wrist. It has to be done, but I am now afraid it will interfere with the hobbies I love. I will think very long and hard about another neck surgery; that is why I want to go to Mayo. I thought if I got a firm answer like, "there is nothing else we can do", then I could move on with my life and just learn to live with this as you said.

I would love to connect with you again or help you in any way. Michelle
pacdom responded:
Dear Rick:

Gee, a lot of people got weirded out by my own personal shame about the narcotics. Please don't get me wrong...I am grateful for them AND I ALWAYS give them to patients who need them; I 'm sure I'm a softy in that respect, given my background in alternative medicine. Many of my peers are so afraid of being sued.

Also, I must have given the impression I went right to surgery...just trying to avoid long story. I tried everything from acupuncture, yoga, meditation, epidurals, traction, trigger points, massage, prolotherapy, herbs and lots more before I finally lost the use of two of the fingers of my left hand. I fell on July 25, 2005 and didn't get surgery until October 31, 2006.

Right now I can't go to is hard to go into a trance like state when doing minor surgical procedures, pap smears and treating choking toddlers(I'm in family practice medicine now). I would like to go back to doing a little acupuncture...maybe soon.

Anyway, good luck. PS After years of being a massage therapist, acupuncturist, human being....I try not to EVER be judgemental of my patients...I wish more doctors were like that. M
pacdom responded:
Dear Annette:

You are so right. Thank you so much for the support. Your best friend is also right. My therapist always tells me he wished I could get more narcotics than I do since I don't work....he says he wishes I could just have days where I zone out...I do too.

Hey, do you or anyone else here know how to go about getting SSID. I have been really stubborn about that too, but am going through my life savings faster than I thought possible. In a way, I am scared of that too, because I have heard horror stories from patients trying to get it.

I was over 30% disabled three years ago and haven't been rated lately, but am sure it is closer to 50.

Again, thank you so much, your message was very comforting to me and I hope to connect with you again if you ever need anything. M
pacdom responded:
Dear Sarah:

Thank you for your support.

I can only imagine the trouble you may have had obtaining medications which are right for you. I don't know your situation, but you never know how another person can help. Let me know I ever can.

I have had plenty of hassles getting the Fentanyl, which I finally had to ask for. It is sad, but patients have to be very strong advocates these days.


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