ACDF When will I feel better?

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Mary Grimley
New Member


Date Joined Nov 2017
Total Posts : 14
   Posted 11/20/2017 2:55 PM (GMT -6)   
Hello. I am new to the forum and have read quite a few threads. I had a C-5/6 + C-6/7 ACDF with cadaver bone graft August 24, 2017. I was never issued a collar. My insurance changed right after surgery, so I do not have access to the Neurosurgeon who performed my surgery. So I made an appointment with my primary only to find out he had quit without notice. I have seen a nurse practitioner twice, but she doesn't know a lot about spine surgery and on the second visit, she had forgotten I had seen her three weeks prior. She noticed my neck scar on the second visit and said, "You must have had an ACD." ?! I have nerve damage from pernicious anemia so I can't take opioids, the muscle relaxant Baclofen gave me vertigo with nystagmus and made me really sick. The one mild muscle relaxant I can take is Diazepam, but the doctors are squirrley about prescribing it. My drug of choice is 800mg Ibuprofen, but I was told not to take any anti-inflammatories. I have endured without post-surgical pain relief with just my trusty ice pack. I was told recovery would be 1 to 2 weeks, but now it has been almost 3 months and I am ready to give up. I am down to 107 lbs. I am afraid to eat when my husband is gone because I choke, and I don't want him to come home and find me dead like that. I have an appointment at a new clinic with a new doctor on December 18, 2017. What questions should I ask?

straydog
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Date Joined Feb 2003
Total Posts : 16294
   Posted 11/20/2017 4:05 PM (GMT -6)   
Hello Mary & welcome to Healing Well. First & foremost, go online to your health insurance & get the names of neurosurgeons that are on your plan. Check out each one online, look each one up on Vitals.com to see if any patients have posted anything. Then call your health insurance & ask to speak with a patient advocate type person, some even have nurses available. Explain how your insurance changed & you have been without a neurosurgeon since surgery. The insurance can contact the neurosurgeon's office directly & get you seen. This way you don't have to wait on a new GP messing around making a referral.

You should have been having xrays made on your neck to check the progression of your fusion to make sure it is in the correct place & to see how well the fusion is taking to become solid. It takes a good year for a fusion to become solid.

A NP or even a GP is not qualified enough to give you the proper care for your neck. I am floored you didn't get help sooner. No, drs are very, very hesitant to rx Diazepam because of the addiction issues with it. Because you are still having swallowing issues this far out, you need to be seen by an ENT specialist to make sure something else is not going on.

Again, get with your insurance to get in with a neurosurgeon. Holidays are coming up, it can take several weeks to be seen & you need an appt ASAP.

Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Mary Grimley
New Member


Date Joined Nov 2017
Total Posts : 14
   Posted 11/20/2017 4:45 PM (GMT -6)   
Thank you Susie. I will call my insurance today and see what they can do. I realize I have fallen through the cracks without anyone noticing, and need to be a better advocate for myself. It took 19 months from my injury to surgery, so I am understanding that the wheels turn slowly for someone with basic insurance. I'm an EMT and sometimes wish I had fallen at work.

I just now realized why I have hesitation about being a better advocate. I have a history of non-union fractures (fibula and 5th metatarsal) and a history of rejecting cadaver graft. I guess I am afraid of hearing the words, "This is as good as it will get."

Mary Grimley
New Member


Date Joined Nov 2017
Total Posts : 14
   Posted 11/20/2017 6:04 PM (GMT -6)   
I feel so defeated. I called my insurance, and they were not much help. I have to wait for my appointment on Dec. 18 with the new clinic and new doctor and have them make a referral. During the call, I remembered I had some Tequila left over from election night last year. Bottoms up.

White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3695
   Posted 11/20/2017 9:09 PM (GMT -6)   
Hi Mary do you have an urgent care Clinic near you or anywhere close by? If so check with them to see if they will accept your insurance, if they do, tell them the problems your having with swallowing and everything else, especially your history of cadaver bone rejection.( by the way I would have thought that would be a red flag for your surgeon, and he would have used your own bone for the fusion! My first fusion they done an autograft and took the bone from the iliac crest of my pelvis) Anyway it sounds like you should have been thoroughly checked a long time ago, and I would not wait till the 18th of December to see a doctor.! Try every Avenue you can possibly think of to get this checked out Soon!

Good luck to you and please keep us posted of your condition,! When your here on this forum your part of our chronic pain family and we all care about each Other! Welcome to our Forum!

White Beard
Moderator Chronic Pain
USAF retired in Sept.1991. I went back to school and became a licensed RN in 1994, I worked on Oncology and Med Surg, Disabled in late 1999, was approved SSD in early 2002! Diagnosed with: DDD and Multiple herniated Disks; Foraminotomy L3/4/5 Jan 2013; Posterior Articular Joint fusion Nov 2010; C5/6 ACDF Sep 2009; C6/7 ACDF 1985; Implanted pain Pump Jun 2014.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16294
   Posted 11/21/2017 8:18 AM (GMT -6)   
Mary, I agree with WhiteBeard try to find an Urgent Care that accepts your insurance & get in to be seen. The internet is great to use trying to locate drs. I suggest doing a google search for for PCP's & Internal Medicine drs in your area. Most of these drs will list what insurance they accept. If you find someone call & ask how long of a wait for an appt. Unless you are wanting to see the one in December.

That stinks your insurance was of no help. I know a lot of companies now have a nurse that assists people in finding drs. What about your anemia situation, nothing being done to monitor that either?

Now a days patients have to advocate for medical care & there is nothing wrong with that. That seems to be the only way we can get decent care.

Worst case scenario, you could call your surgeon & ask how much an office visit would be for a cash paying patient. Just explain he no longer accepts your insurance. Drs often will give a discount for cash paying patients. If you do not have a copy of your op records, you really need to get a copy for your own personal use. A copy should be given to any dr that see's you.

Keep us posted.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Mary Grimley
New Member


Date Joined Nov 2017
Total Posts : 14
   Posted 11/21/2017 6:28 PM (GMT -6)   
Hi Susie, I forgot the tequila last night. Probably for the best. Anyway, no one is monitoring my B-12 deficiency, so I buy the vials and syringes from Canada. My reality is that I end up seeing a new primary every time I go to the clinic, they only have 15 minutes, so I'm on my own with that. No problem. At least it is not MS like they thought. I called the Neurosurgeon and he will not see me as a cash patient. I looked online and there are no Neurosurgeons within 100 miles of here, so I will wait for my appointment with the new clinic and let them sort that out. I called the new clinic and asked to be put on the cancellation list, so if anyone cancels an appt., I move up the line. I called the Urgent Care, and a visit is $150 cash, and they only see minor injury patients. I did get the records from the Neurosurgeon, and sent my request for the hospital records today. I live in the Sierra Nevada mountains in northern California. We are still 2 miles from the electricity lines and are 100% solar. On the bright side...we have indoor plumbing, running water, and satellite internet. Only 1/4 of the people up here are so well off.

Thank you for your support. It meant the world to me to know that there are people out there that care. I will update if anything happens or changes. Until then, it's just a painful waiting game.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16294
   Posted 11/22/2017 9:00 AM (GMT -6)   
Mary, I am sorry to read that you are having such issues getting treatment. Other than swallowing issues, can you give us a little better idea what else is going on? Perhaps we can help you put a list of questions together when you see the dr on the 18th.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Mary Grimley
New Member


Date Joined Nov 2017
Total Posts : 14
   Posted 11/23/2017 4:37 PM (GMT -6)   
Hi Susie. My swallowing is getting better little by little. It still feels like someone is squeezing my neck, and I choke on food if I am not mindful. I have no pain medication. My drug of choice is 800mg Ibuprofen, and was told not to take that for 6 months post op. Today, the back of my neck is burning and my back muscles are in spasm. My left pointer finger is stupid and numb. My neck incision feels like a meat bee stung it.

So, I have a few 10mg Diazepam that I am saving. It's a mild, long lasting muscle relaxant. I might take one today just to get a rest from the pain. The constant pain is making me weary, tired, and maybe a little depressed. I don't know when I am supposed to feel better. Today, 3 months post-op, I feel the same as pre-op.

I have been thinking about the questions to ask the new doctor. I need to prioritize, and have a typed list with me when I go.

Have a great holiday. It's my husband's turn to cook supper, so yay for me.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16294
   Posted 11/26/2017 7:40 AM (GMT -6)   
Mary, I have been thinking about your situation. In spite of your lack of post op care, you seem to have done ok. I have to admit, no one has ever posted here about having such a surgery without the normal care afterwards. Generally the 6 month post op time frame is when people can see they are turning the corner. By now you should have been through physical therapy which is a huge benefit. You have definitely missed some steps so this will be somewhat of a hindrance for you.

Things to discuss with the dr; get an xray of your neck to check things out, ask for a muscle relaxer, don't bank on getting Diazepam but let them know it has helped, if you cannot get that perhaps ask for Zannaflex, I can't remember the generic name for it, Flexeril is a favorite with drs but it makes people groggy & I prefer not to feel like that. Discuss every symptoms you have listed here. In fact make a list since you may forget something. Also, discuss being sent to a physical therapist so you can be shown some gentle exercises to do at home. If you can manage 1-2 trips to one so you can be shown how to do things right it is worth doing. I realize you have distance to drive.

Have you tried any moist heat on the tight muscles? Moist heat is much better than dry heat. I usually wet a hand towel & nuke it in the microwave but you have to be careful they get hot. Alternate cold/hot. With heat no more than 20 minutes at a time.

Just some food for thought.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Post Edited (straydog) : 12/8/2017 8:51:47 PM (GMT-7)


Mary Grimley
New Member


Date Joined Nov 2017
Total Posts : 14
   Posted 11/26/2017 4:32 PM (GMT -6)   
Hi Susie, the neurosurgeon said the recovery time was one to two weeks. I think he mis-spoke in order to get me to agree to the surgery. Then he said he was going to do one level, and then he did two. He said my back pain would be gone immediately after surgery and the only pain I would have would be the incision pain. My expectations were apparently way off from reality, hence my fears that something was terribly wrong. This forum has educated me to the real facts, and knowing I am not alone in the world has helped my attitude tremendously. Thank you.

I wish sometimes I had a microwave. Or a heating pad. (they use too much electricity) But I have a hot water bottle and an ice pack to alternate cold and hot treatments. I have tried Baclofen and Flexeril and they both made me really high and I got vertigo with nystagmus. I will research Zannaflex. I will be needing to turn on the generator today since the weather has been stormy for days and our batteries are running low...so I will take the opportunity to take a long hot shower.

Thank you again for your advice and encouragement. You have helped me change my anxiety and depression into calm patience...with a side of determination.

Mary Grimley
New Member


Date Joined Nov 2017
Total Posts : 14
   Posted 12/8/2017 3:32 PM (GMT -6)   
I have been patiently waiting for my appointment with the new doctor on December 18. The clinic called yesterday and said the doctor was unavailable that day and rescheduled me for January 15. sigh. I was told there was no waiting list to fill cancellations. I told the receptionist that I give up and am going outside to smoke a cigarette. I just don't have any cares to give. 20 minutes later, she called and had an appointment for me this coming Monday. I wonder if they can call in psyche because I threatened to smoke a cigarette. If so, fine. I could use some talk therapy at this point.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16294
   Posted 12/11/2017 9:18 AM (GMT -6)   
Mary, I am happy to read that you got your appt moved up for today. I do hope something productive comes with this visit. Now a day, patients have to advocate for medical care, don't be afraid to do so, ever!!

Will be looking for a reply on how your visit went. Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16294
   Posted 12/24/2017 8:58 AM (GMT -6)   
Mary, I am checking on you, please give us an update when you can.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Mary Grimley
New Member


Date Joined Nov 2017
Total Posts : 14
   Posted 12/24/2017 3:44 PM (GMT -6)   
Hello Susie, I went to the appointment and saw a FNP. She said, "we don't treat pain here." I heard, "we don't care if you are suffering." Whatever. She said she could do nothing until I was "cleared" by a neurosurgeon which could take months to find one to see me since they shy away from pre-treated patients. Again, whatever. I did refuse to leave without a requisition for a cervical x-ray. She reluctantly complied, so I was able to schedule the x-ray for that afternoon. To my delight, the doctor at the radiology office called me into her office to review the films. That has never happened before. She showed me the x-rays and told me all the hardware was in place and the bone grafts looked like they were in the right place, but without an MRI, she couldn't be 100% sure. Of course. It was great news to know the bad fall I had taken a few weeks back did not mess with the hardware.

I called the new clinic and found since I had seen the FNP, my appointment with the Doctor had been cancelled. Sigh. I rescheduled for the Doctor for January 29.

I called my neurosurgeon on the off chance he would talk to me without getting paid, again to my delight, he talked with me and answered a few questions and told me I was on track, to continue with the physical therapy I had been doing at home (more about PT later), and that I could start taking Ibuprofen sparingly. Due to my age (almost 59) and the length of time from my injury to surgery (19 months), and my preexisting degenerative disc disease, stenosis, etc., I probably would never be able to work again as a medic. Okay. I sort of figured that out already.

I called my old physical therapist (from after my foot surgeries) and described to her the PT I was doing and asked if I needed to schedule a visit. She was amazed I was doing all the stuff she would have advised, and added one soft exercise to help my core muscles. I was doing the right thing all along. Yay.

I am learning how to pace my activities better so I don't cramp up, so my days and nights are less painful. I love my wonderful, yummy Ibuprofen. I am keeping the dose to 800mg every third day. Christmas is tomorrow. Not doing any Christmas is such a relief. No shopping, no cooking, no wrapping, no tree. It might sound pathetic, but those activities make me physically suffer, and letting it go feels like the right thing to do.

Thank you for checking on me. I am clearly not as depressed as last month, and realize time is my frenemy.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16294
   Posted 12/25/2017 8:59 AM (GMT -6)   
Good morning Mary. I am so happy to read that you have made a little progress in getting some medical attention. At least you know everything looks good on the xray & what a gem the radiologist was to explain everything to you. I don't think the NP would have done that at all!! This NP sounds like like one from hell, lol. The attitude is unreal. I have ran across a few over the years, not many, but I have asked myself why are they even in the medical field. I have called a few out too, I am the reason they have a paycheck, they work for me.

Yes, it can be difficult finding a dr to see someone that has had surgery by another dr. When I worked we ran into this when a client clearly needed to be seen by another dr. Especially if the surgery was fairly recent. It was explained to me by nurse the reason drs are this way with a surgical patient is a couple of things. The dr may not agree with the particular surgery that was done but the biggest concern is this one: if the patient is not doing well after a surgery, they often look to the new dr to be the one that can fix things & sometimes its just not possible. I understand both, however, everyone is entitled to the best care they can get.

I am happy that you got to talk to your surgeon, wow!! He sounds like a good caring dr. And then getting to talk to the physical therapist. I have to say these calls & the radiologist were a good Christmas present for you. Some reassurance can go a very long way for us.

Yes, pacing yourself is a must. I think that is one of the hardest things for us to learn. In my day, I was like that energized bunny on tv, lol. Never stopped, always going full blast. My daughter use to say, you are a crazy woman, you never stop, surely there is medication out there to slow you down, lol. Of course she is the same way.

Do not feel bad because you didn't shop or decorate & put up a tree. I have not put up a tree in 3-4 years now. I live in a 2 story house, all the decorations & tree are upstairs. The tubs are light weight & can be slid down the stairs. It's the going up & down those stairs that are a killer & being able to stand. I can't stand up straight at all, osteoporosis & arthritis has done a number on me. I went from being 5 "2" to 4 "11". The dr use to keep track of my height. I have a plan for next year though, my daughter & her ex husband's daughter have already said they will help put up my tree & decorate a little next year. We will have Christmas here next year. I ordered most of my gifts for the little kids online, thanks Amazon, lol. I was fortunate to get in one store that was not crowded & picked up the few other things I needed.

Keep doing what you are doing & pace yourself. Keep us posted on how you are doing. Happy Holidays to you.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Mary Grimley
New Member


Date Joined Nov 2017
Total Posts : 14
   Posted 1/20/2018 2:16 PM (GMT -6)   
Just a little update. Still waiting to see the MD. I'm placing bets that she will cancel again, but trying to stay positive. I got a letter yesterday stating that I no longer have medical insurance coverage. I don't know how that will play out. I was hoping to get some follow-up with this ACDF, and get the parathyroid tumor(s) removed before I lost insurance.

Question: If I work too hard, do I just get a few days of pain, or do I actually do damage?

Mary

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16294
   Posted 1/22/2018 6:15 AM (GMT -6)   
Mary for now you need to avoid strenuous activities. You have been very lucky to date with your neck, my advice is don't push your luck. You already know if you do something & end up in bad shape you access to no medical help. Is it really worth the risk? Almost 6 months out from surgery, if it were me & knowing how these neck surgeries are you need to be more patient.

Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16294
   Posted 1/28/2018 11:34 AM (GMT -6)   
Mary, I am checking on you, its been a bit since you last posted.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Copgirl816
New Member


Date Joined Jan 2018
Total Posts : 1
   Posted 1/28/2018 1:24 PM (GMT -6)   
I am extremely new at this....I’m scheduling my ACDF surgery for A5-6 for February in the hopes that I’m good enough to go on a 12 night cruise in mid April. Is this wise? If I’m doing this wrong please guide me in the right direction for this question and the many more that I have.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16294
   Posted 1/28/2018 3:13 PM (GMT -6)   
Hello Copgirl, if you would please start your own intro thread. You can copy & paste what you have posted above& that would be perfect. To start your own thread, click Post New Topic, put in a heading & you will be all set. Hopefully we can offer you a lot of good tips to prepare for your surgery.

Thanks.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Post Edited (straydog) : 1/29/2018 3:13:10 AM (GMT-7)


Mary Grimley
New Member


Date Joined Nov 2017
Total Posts : 14
   Posted 2/11/2018 8:41 PM (GMT -6)   
Hi Susie, It's okay with me if Copgirl used this thread. Hopefully, she will learn how to navigate this forum. Anyway, here is my update which I also posted on the Thyroid page: I was posting at HW because of questions about my spine surgery, but now I have another thing going on. My serum calcium is 11.1 and my parathyroid hormone (PTH) is 81. It does not take an endocrinologist to diagnose a parathyroid tumor (or two). It took me 6 weeks to finally get my primary to order the PTH. I have spent days on the phone with my insurance. (which wasn't cancelled after all) They say this is elective surgery and not covered. I say this is life threatening and I need a specialist endocrine surgeon to do the surgery ASAP. I have an appointment with my primary tomorrow and I am taking my pillow. I will not leave until I am satisfied that I am not being ignored and the surgery WILL be scheduled and paid for by my insurance, or the cops come to get this peaceful protester out of the waiting area. My ACDF (spine fusion) has never been adequately followed up. I have never had pain control. And I am cranky enough to be willing to get arrested to make my point. I am NOT depressed. I WILL NOT take Cymbalta to make me docile. I admit I am cranky. Almost 6 months post ACDF and I would not even think about taking a cruse. But that's me. Copgirl might be a whole lot younger and heal faster.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16294
   Posted 2/12/2018 7:15 AM (GMT -6)   
Mary, so glad to hear from you. However, I am sorry to read that you now have another health issue rearing its head. Wow, so when you thought your insurance was no longer in effect, you find out that it wasn't canceled!!

I do hope you can get this new situation taken care of. Please keep us posted.

Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums
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