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Upcoming 4 level ACDF. Questions to ask?

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Chronic Pain
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(Seashell)
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Joined : Dec 2012
Posts : 1080
Posted 7/22/2018 3:14 PM (GMT -7)
Randi/Darla:
As Susie mentioned, it is best to be careful on the internet to not disclothe too much personal information. Sharing your first name should not place you at risk.

Any number of people browse and read support forums, without registering or posting. And then you have the search engines (Bing Bot) that scan, file, and store information outside of this forum during the wee hours of the morning when online traffic is less busy. Posts written on this forum can be downloaded to distant sites.

It is natural to feel angry and frustrated in the grips of ongoing pain. Pain is an unwelcomed companion. It is exhausting to contend with the irritating noise of constant pain, all while maintaining an outward appearance that all is well and A-OK to family and friends. Pain has changed the fabric of my being. Like everyone with chronic pain, I am doing my best to make the best of a difficult situation.

I no longer talk about my health with family or friends. Empathy and understanding disappeared when I failed to get better. I come here, to this forum, to find solace and connection.

Be gentle to yourself. Your healing is both physical and emotional in scope. Emotional healing often takes more time than physical healing of surgical wounds/repair.
- Karen -
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White Beard
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Posts : 3740
Posted 7/22/2018 10:50 PM (GMT -7)
Hi Randi/Darla I really do empathize with you on your swallowing difficulties, hopefully this will pass very quickly! This type of surgery has advanced so much since I had my first ACDF back in 1985. Back then I was still in the military but had the surgery done by a civilian neurosurgeon at a civilian hospital in Anchorage Alaska. I had a single level ACDF at C6/7 and I was in the hospital a full 8 days! LOL Completely lost my voice for over 3 months after the surgery and had swallowing difficulties for allot longer than that! Fast forward 25 years to 2009 and had my second single level ACDF at C5/6 was in the hospital 2 nights (supposed to be only one night but the Jvac drain was draining so much the doc wanted to leave it in an extra night so had to stay an extra day) but had no difficulties with that surgery at all.

Anyway it just amazes me how short your hospital stay was considering everything you had done! So many people especially it seems family and friends ( unless they've experienced this first hand) just don't understand how difficult and painful this type of surgery and recovery can be! But the people here on this forum do! And that's what makes this forum and it's people on it so special! So please (Above all be gentle and patient with yourself ) and with following your Doctors instructions to the Tee, you will hopefully do fine and have a complete and successful recovery!

And of course we're all here for you!

Wishing you all the best and a speedy recovery ......White Beard
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Darla
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Posts : 508
Posted 7/23/2018 8:11 AM (GMT -7)
Hello, White Beard! I think things change all the time in this crazy world. I was only kept in the hospital one night because the drains warranted that and I was ambulatory. I am so glad it was not longer because I did not get the care I could provide for myself at home, but don't get me started again, LOL.

Thanks for your stories and your kind words. I saw you had surgery in Alaska. I went there last year with my husband and we hope to go back next year. It is so amazing and beautiful and friendly but I sure would not want a whole lot of medical procedures there from what I saw. But you did great so what do I know. Thanks for your compassion. I don't get enough in my life and this group is amazing so thank you.
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Darla
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Posts : 508
Posted 7/23/2018 8:16 AM (GMT -7)
Hi Karen! As usual you hit a nerve. A raw nerve as I have too many of! I don't get better and that is why my friends and family have a problem with me. Luckily I have not burned my husband out yet, and I do much of the easy lifting jobs in the house, along with work, so I do not feel like a total burden but a chronic pain person can be a drag to many I guess and that is what I get from others. I had not put my finger on it but the problem is that I do not get better. I will heal from this surgery and I am sure do well, but it won't be overnight and I will likely have other surgeries. I average 1 or 2 a year. People send a message saying how are you and I should be fine in a day or two. Mind you I do not complain endlessly unless they catch me at a bad moment but it just seems to build resentment as though I am choosing to not find a solution and they tire of it. I don't even mind that except I question myself! And then blame myself. No more. I am Teflon now! A student of mine called it 'gray rocking' which I had never heard of but same concept...she had an autoimmune disease as well. Thanks, Karen. I want to be like you!
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White Beard
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Posted 7/23/2018 10:39 PM (GMT -7)
Hi Darla so you and your husband have been up to Alaska huh? I do hope the two of you have the opportunity of going back! I think it is absolutely beautiful country up there? Although it has been many many years since I was there! I spent 2 years in Anchorage at Elmendorf AFB in the mid 70's and then 10 years later in the mid 80's I spent 4 more years up there stationed at Eielson AFB about 30 miles outside of Fairbanks. Fantastic country, but the winters up there are unbelievably cold especially up there by Fairbanks! LOL

Good Luck to You

White Beard
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Darla
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Joined : Jun 2018
Posts : 508
Posted 7/24/2018 5:48 AM (GMT -7)
White Beard, I can't even imagine being in Alaska in the Winter, let alone actually having to work as hard as the military people do! We took a cruise in the summer and had great weather and were freezing most of the time! Thank you for your service.
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(Seashell)
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Joined : Dec 2012
Posts : 1080
Posted 7/24/2018 6:32 PM (GMT -7)
Times change and standards of medicine change . . .

When I was a newly minted physical therapist (circa 1983), it was routine for an elderly person with a hip fracture and pinning to stay 4 weeks as an inpatient. A total hip replacement was also a 4 week inpatient stay. Low back pain with a mild disc protrusion and radiculopathy was treated with bed rest and intermittent pelvic traction, typically 7-10 day inpatient stay. A stroke with unilateral paresis was also a 4 week inpatient stay with an additional 60 days of comprehensive rehabilitation. A new mother with an uncomplicated delivery had 4-5 days to rest before going home with her newborn.

A friend of my family recently had a double mastectomy (she has the gene mutation that makes her high risk for breast cancer). She stayed one night inpatient and was discharged the next day. She was discharged with indwelling drainage tubes and a chest compression dressing similar to a mummy wrap. She was not happy about the fast-track discharge. Her situation seemed cruel.

Some of the generous length of stays when I was a neophyte therapist were a reflection of lower hospital utilization as compared to present and less population density of large, urban cities. Quite simply: There were not as many patients. Inpatient volume was lower with less demand for inpatient beds. Many of the advanced technologies that are considered routine today were in early stages of development (CT, MRI, laparoscopic surgery).

Karen
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Darla
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Posts : 508
Posted 7/25/2018 5:27 AM (GMT -7)
Hi Karen! First, I am so sorry your friend has to deal with the additional stress in addition to such a tough medical situation. She is fortunate, though, to have you as a friend and I am sure that helps her a lot.

The stories of length of stay in the hospital brought back memories. I have been going through hospitalizations since I think 1978. As a freshman in College I tripped on the stairs and tore a cartilage in my knee. The repair of that required (?) a week inpatient. Back then you were admitted the day before a surgery, given lots of sleeping pills and other anxiety meds that pretty much sedated you the night before! The surgery involved cutting my leg from the bottom of my thigh to my calf. A big ugly slice. Recovery was in a long leg cast! Crutches and no weight bearing. After the cast finally came off I had extensive therapy to try and bend the leg again, as you can imagine. I had patellas that were off center and from hopping on the other leg for so long that one needed repair, too, and seems I never stopped being repaired. Every school break I was in the hospital for a long time. The rooms were usually 6 beds. The pain meds were too strong...shots of demerol and morphine frequently...And most of us smoked in the beds! Even though we were all immobile we were given strong meds and allowed to smoke in the room. What a potential disaster!

Thanks for sharing your information. You have had a different perspective on the changes...they are really amazing and much of it quite good! I appreciate your swallowing advice and think of it every time I have difficulty...Which is still frequently but improving. Have a good day, Karen and everybody!
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Darla
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Joined : Jun 2018
Posts : 508
Posted 7/26/2018 3:11 AM (GMT -7)
Hi Everybody...Does anybody remember being about a week and a half from their ACDF? I am frustrated that I am not better. I still feel like a truck hit me and trouble swallowing. Whoever still talks to me assumes I will be better each day, and I am really tired of that, but I am frustrated I still feel so bad. Tired of this. I am seeing the 'house' dr. from the hospital today. He suggested a follow-up which I think is to have me switch to him as a primary. I am not opposed to that since my primary is useless and knows nothing about me after 12 yrs. I have really low expectations for any of these people so we shall see. I hope everybody is off to a good Thursday. Thanks for listening and please let me know on the recovery question if you remember. Thanks!
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Abilene
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Joined : Apr 2014
Posts : 986
Posted 7/26/2018 5:30 AM (GMT -7)
What I remember is wondering why my dr or someone didn't tell me this is a LONG recovery-I was not on this site yet, my loss. I had been through other surgeries and did seem to get a little better each day. Not this one! I could not see or feel daily improvement. It was more like monthly at first, then weekly. It may have been easier to just tell people it takes a year to recover from this and I'm on my way or something like that.

You will get there but it's still very soon since that truck hit you! We are glad to listen, so keep on coming here, asking anything, and let us know how you are doing. Whatever is said here will certainly help someone else down the road.
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Darla
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Joined : Jun 2018
Posts : 508
Posted 7/26/2018 6:03 AM (GMT -7)
Abilene...big gentle hugs! Thank you.
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(Seashell)
Veteran Member
Joined : Dec 2012
Posts : 1080
Posted 7/26/2018 8:53 AM (GMT -7)
Darla:
Remember, too, that you are aging and older than you were with other surgeries. Aging does make the recovery process more irregular and protracted.

That you have an underlying auto-immune disorder is also likely at play with your slower than wanted recovery trajectory.

I have fragile health. I have made it clear to my medical providers that I will not agree to any further surgergical procedures. None. Zero. Nada. Especially any life-threatening situation that may suggest a surgical intervention is a “no go.”

I do not want to be in any worse condition than I already am. Quality of life matters.

Every surgery takes a toll on the body. There is a cumulative effect.

The human body really is a marvel in its creation. Every surgery, even a surgery with intended benefits, disrupts the body’s natural order of being.

Rest. Gentle movement. Nutrition. Listen to your body. It will tell you what it needs.

Best wishes moving forward,
Karen
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Darla
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Joined : Jun 2018
Posts : 508
Posted 7/26/2018 9:40 AM (GMT -7)
I have already learned so much from you. You are a wise woman. I am fortunate to have this opportunity to connect with you and I just want you to know it really means a lot to me. I can understand your decision on no further surgical treatment. I saw the 'house dr' from the horrid hospital today and he is amazing. Something I have not found in a Dr. since I was a child...knowledgeable, kind, and attentive. When I asked why my ribs and other parts hurt after the surgery he said from the surgery...somebody probably was leaning on you with their elbow. I actually had said before this visit I bet they dropped something on me!

After reading this post and your uplifting yet so sad comments I read your signature again. Today's Dr. said he thought I had connective tissue disorder more than the psoriatic arthritis I am mostly treated for. Much of what I take makes this condition worse and my medical providers have no concern about that or what the condition even is, really. So this was refreshing for me but I already knew I had it. I see you have it as well. I know everything you have contributes to your total person and makes each thing perhaps more of a challenge. Thank you for replying.
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straydog
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Posts : 18304
Posted 7/31/2018 5:42 AM (GMT -7)
Darla, you are two weeks post op & still in what we call the fresh stages of recovery from surgery. Can you tell if the swallowing is starting to get any better? I have had quite a few surgeries over the years & often felt like someone had punched me several times afterwards. When I would mention it to the dr, the standard answer was it was probably from being positioned. I knew at that point it would be useless to ask any further, lol.

We finally got a break yesterday from the heat. A front blew in & brought a few sprinkles. Certainly not enough to do any good. Our local lake is down 81/2 feet to give you an idea how bad of a drought we are in. The reprieve from the triple digits will last a couple of more days. I am enjoying my coffee on the patio this morning for a change. I had forgotten how nice it can be out here early in the morning. I get up very early, somewhere between 4 to 5 am. Sleeping in for me is 6:00am, lol. The dogs are appreciating the weather as much as I am. They love being out here with me in the morning.

I am off to water my plants. Take care.
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(Seashell)
Veteran Member
Joined : Dec 2012
Posts : 1080
Posted 8/8/2018 10:37 AM (GMT -7)
Darla/Randi:
It’s been about 3 weeks since your ACDF surgery. Yes?

Just want to check-in and see how you are doing, physically as well as emotionally.

Sending you healing energy and positive karma,
Karen
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Darla
Veteran Member
Joined : Jun 2018
Posts : 508
Posted 8/9/2018 9:41 AM (GMT -7)
Hello Susie and Karen! Thanks for thinking of me!

Susie...I force myself not to leave my bedroom before 4am. I don't even feel bad about waking up so early. Sorry about your heat. It can get so unbearable. I did not realize you had a drought as well. At least I have not heard of any hurricanes in a while, knock on wood!

Karen and Susie, I had my three week post-op today. I have been home most of the time so even the outing in the car and sitting in the Dr's office without resting my head was rough but I am doing really well I think. I do have trouble swallowing and he said that is to be expected as the esophagus does not like to be moved. He said it 'should' get better. But it has gotten better already so I do expect more improvement. He is a wonderful practitioner...Sat back discussing things instead of the usual rush you out-people are waiting. I did not realize how much was done! Involved hammers, screws, plates, wow. Really amazing I feel as well as I do! No brace, no special precautions. Wow. Susie, I do feel slammed, lol.

I wanted to ask a question...I have lost my senses of smell and taste. I think it happened in early June, prior to this surgery. I returned from a trip and we all got bad sinus infections...My husband who was with me as well as my son who was not. I juggled between taking the auto-immune meds (methotrexate mostly was the issue) and taking an antibiotic for the sinus infection. Tough choice. Perhaps I did not allow enough time between the two types of meds, maybe not, but after the sinus infection was resolved I still did not get my senses of smell and taste back. I thought it was the congestion but I can breathe fine. I am having a tough time eating because not only is the swallowing still uncomfortable but everything tastes like carpet to me. I can taste sweet or salty...that is it.

I brought this issue up to the NS today and he brainstormed with me but had no idea, really. I was distracted with the surgery but as I heal and still no smell/taste I am getting frustrated.

Ladies? Have you heard of this from a medication, condition, etc?

Thanks and THANKS for thinking of me!!
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(Seashell)
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Joined : Dec 2012
Posts : 1080
Posted 8/9/2018 11:00 AM (GMT -7)
I would not be overly concerned about a loss of taste and smell and decrease in desire to eat. It is all oar for the course with almost any surgery, and more so with a surgery involving the neck or face.

Anesthesia impacts taste and smell. It can take 4-6 weeks for the effects of anesthesia to metabolically clear through the liver.

I am sure that you have IV contract for either CT scan or MRI where the “taste” becomes noticeable within seconds of beginning the infusion.

Decrease in appetite is common post surgery. The body is focusing its efforts on local healing and is less interested in directing resources to the digestive tract for digestion. While it is helpful to up one’s intake of quality protein, most people already get enough protein for there not to be a protein deficit.

Hydration is the more important. Clear fluids, sipping throughout the day.

Do not stress about loss of smell or taste. It may be that some cranial nerves involved in smell/taste were stretched or placed on tension. It may be lingering effects of anesthesia or medication. All should resolve with time.

At 3 weeks post-op, it is important to make sure that you are getting up, moving, and walking. Short distances, frequently. Begin to build distance and tolerance for walking or other movement/activity. Maybe go to a local park and take in the beauty of nature, a cooling breeze, listen to the sounds of small sing birds. A change of scenery is inately healing.

One thing that keeps me “going” is my firm commitment to be up and moving. Despite pain. Despite advanced avascular necrosis of my hips.

Recovery is a process. Some days better than others. Overall, beginning to feel more like yourself.
Karen
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Darla
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Joined : Jun 2018
Posts : 508
Posted 8/9/2018 11:28 AM (GMT -7)
Thanks, Karen. I have had so many surgeries but never the loss of taste/smell. If anything, my senses were too sharp thanks to my overactive brain! This was a different surgery, though, so I am going to just wait since I can't think of anything else besides asking everyone. Good point about the anesthesia.

I have not gotten out too much, but I move A LOT. If anything I don't have enough rest. I think you are right about the change of scenery though.

Karen, I had AVN of the hip (not sure why one hip but glad it was not both) and my husband had it in both. We had them replaced. I know you said NO more surgeries but knowing what trying to move was like I wonder if you would ever consider it? My husband waited until he was crawling! I know your diseases complicate the issue but just thought I would ask.

Thanks for taking the time to write!
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(Seashell)
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Joined : Dec 2012
Posts : 1080
Posted 8/9/2018 2:56 PM (GMT -7)
Darla/Randi:
Surgery for a total hip replacement(s) is not a viable option for me
for a confluence of factors.

I have been on long-term + high dose corticosteroids for some 25 years - for treatment of Addison’s and treatment of MCTD. Corticosteroids are a double-edged sword. Amazing in providing immediate relief from severe inflammation and immune system modulation but with accompanying detrimental effects (osteoporosis, thinning of connective tissue, heightenened risk of infection, et al). The AV that I have is a direct consequence of corticosteroid use. Steroids lead to small fat emboli that get stuck in the small capillaries that nourish the head of the femur/hip and humerus/shoulder. Occlusion of vascular blood flow = bone necrosis.

Simply put, I do not have sufficient bone density to tolerate drilling and placement of a femoral prosthesis and acetabulum cup. It would analogous to drilling into a piece of chalk.

The Addison’s disease is an additional complicating factor. It is likely my body would not be able to tolerate the stress of surgery and necessary heightened endocrine response. I survived an extensive intestinal perforation with sepsis. Recovery was a long slog. Enough is enough. Never again. I do not have the resolve to endure another protracted recovery.

It is amazing that I am up and walking as it is. The avascular necrosis is advanced. It defies explanation. My endocrinologist looks at me in disbelief. My many years of distance running did benefit me in giving me an edge. I am a petite person of dimuiative body weight and this also is to my benefit in keeping me upright/walking.

There is no illusion but that I will suffer a pathological fracture at some point. I have beaten the odds to date. But I will eventually experience a devastating fracture. It may be at that time that I choose to forgo replacement corticosteroids and aldosterone necessary to keep me alive.

Good health is to be appreciated and cherished. Loss of health is not easily reclaimed.
Karen
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Darla
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Joined : Jun 2018
Posts : 508
Posted 8/10/2018 3:28 AM (GMT -7)
Karen...You were diagnosed with Addison's Disease and MCTD 25 years ago and have been on high dose cortisone for treatment of both for that time period, correct? Did you run the course with methotrexate as well and things along those lines or just the steroids? It sounds like being in good shape definitely has helped!
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