Deciding to have PCDF & ACDF surgeries. help!
Posted , 8 users are following.
Hi All! New Here!
Just to warn you this is a little lengthy (embarrassedJ so I truly appreciate whoever takes time from their busy day to read it.
In 2009, I was diagnosed with Thoracic Osteoarthritis, Degenerative Disc Disease, and Fibromyalgia - and in November 2015 diagnosed with Cervical Radiculopathy. As you see, I have dealt with chronic pain for a long time, and I am tired of it – it’s exhausting and limits my day to day activities.
Anyway based on my MRI results and my physical symptoms - the surgeon diagnosed me with Cervical Radiculopathy and *suggested* a Posterior Cervical Decompression (PCDF) as well as an Anterior Cervical Discectomy with Fusion, ( ACDF). No pressure … he told me to just think it over and referred me to Physical Therapy.
Since the diagnosis, I am doing a ton of research and educating myself about my condition and the surgery.
Last week I asked my physical therapist what she thought of the surgery and she said, “I had time to have the surgery later”. (I’m 63 and not clear about what “later” even means This week my primary care doctor said outright, that I do not want this surgery because it may not relieve the numbness and pain, and does nothing for the arthritis in my neck, and there will be issues with scar tissue and that my condition is not that bad – yet. He suggested I get a second opinion. I agreed to get a second opinion.
Cervical Radiculopathy Timeline
January 2015 I developed a pinch nerve in the left side of my neck along with the slow progression of excruciating numbness and/or pain in my arm, fingers and thigh. In June 2015, my primary care doctor diagnosed me with pinch nerve and referred me to PT along with the suggestion that I get a back massage. I had tried PT before for my osteoarthritis and hated it. So, I decided to try yoga instead.
Through yoga, I relieved most of the thigh and neck pain and increased my range of motion. However, the numbness and pain in my fingers and in my arm became worse - along with the loss of grip strength. I informed my primary care Dr. in Oct of 2015, he referred me to an orthopedic surgeon, who of course ordered an MRI.
As I said, based on the test results, the surgeon suggested surgery but wanted me to first try physical therapy, this time I went. I started twice weekly therapy sessions in November 2015 and so far it’s effective. After 6 weeks of passive exercises, my arm pain had diminished significantly and the numbness decreased to a ‘low buzz’.
Because I was progressing so well - the week of Christmas 2015 the therapist changed to more aggressive exercises (10 mins on the treadmill, resistance bands, etc) I felt ok while there. However, by the time I returned home after the session the pain in my neck and back was out of control. I had learned many PT pain intervention techniques and I tried them all but the pain escalated. Numbness increased significantly in my thumb. In addition to that I now not only have pain on the left side of my neck but also the right - along with a considerable decrease in my range of motion on both sides of my neck. My grip strength decreased almost immediately and I am dropping things again. Thought it best to cancel my next appointment, ha-ha! Although I feel better, today I am still in pain - most movements makes it worse. At this point, I’m confused and not sure what to do next. My next PT appointment is on Jan 5th and I see the surgeon on Jan 19 to inform him of my decision.
My questions.
1. Without ongoing physical therapy –(i.e. the rest of my life) will the symptoms of Cervical Radiculopathy return? (Anyone have experience with this?)
2. With degenerative disc disease, overtime, will my disc continue to lose height and stack on top of one another causing even more pain? (So far because of this I’ve lost 2” in height.)
3. From the point of being diagnosed with Cervical Radiculopathy what is the longest time anyone has waited in deciding to have the surgery or not to have surgery?
4. Why would waiting for the symptoms to get worse be beneficial to obtaining a positive outcome or to justify the surgery?
5. Finally, why are some medical professionals against having this surgery? Has anyone experienced being discouraged from having the procedure and how did it influence your decision to have or not have the surgery?
I thoroughly understand this is a major surgery with a very rough and long recovery period. To be honest at age 63 – I am more worried about recovering from the anesthesia and if my body can withstand the actual length of the surgery, and those factors are certainly not going to get better as I age.
I also understand that I need to rely on the medical professionals’ opinions however, I have been ‘burnt’ in the past with so-called medical opinions. That is why I am seeking experiences related to this from ‘normal’ folks ---I need a different perspective from people who have dealt with this process.
Thanks so much for any feedback!
MRI Results
At C3-C4, mild diffuse disc bulge results in no significant canal or neuroforaminal compromise.
At C4-C5, posterior disc osteophyte complex with left-sided uncovertebral arthrosis results in mild narrowing of the left neural foramen. The canal and right neural foramen are patent.
At C5-C6, posterior disc osteophyte complex and facet and uncovertebral arthrosis results in mild to moderate canal and mild bilateral neural foraminal compromise.
At C6-C7, posterior disc osteophyte complex and facet and uncovertebral arthrosis results in mild to moderate canal and mild bilateral neural foraminal narrowing.
1 like, 44 replies
lindagkelly koko44558
Posted
First of all, bless your heart. I'm sorry you are going through so much pain. I am 61 and I was hurt in a car accident in 2003 and I have been through PT, injections, neurostimulators, drugs, 5 back surgeries, and accupuncture. I think your PT person is pushing you too hard. It may sound crazy, but I would suggest either massage therapy, or accupuncture if your insurance will pay for it. I agree that the surgery might not help with the pain or numbness you are having. I would suggest trying injections to see if they help - have you had any of those? I don't remember reading it in your treatments. One last thing, my daughter mentioned a book, I am trying to find out what it is, that is a psych thing. The book says that if you are trying to sleep or rest, but you can't because a particular part of your body - say your neck, is hurting, hurting, hurting. All of your attention is on the pain in your neck. Focus on the feeling of the soft pillow on your check, and find any other pleasant feeling, however small, that you can focus on, and allow yourself to drift towards that pleasant feeling. Just that little bit has helped me sometimes. If I find out the name of the book, I will share the information. I've had 5 back surgeries, some of which have increased my pain, so please consider surgery to be your last option. Best of luck to you. Remember, you are one of God's precious ones, and angels are watching over you.
koko44558 lindagkelly
Posted
I have a physical therapy session tomorrow. I have a great therapist! I responded so well to the therapy, I too thought I could handle more – not the case – back to square one!
Finding ways not to focus on my pain is a priority for me and over the years, I have collected an arsenal of pain management techniques and strategies. I agree massage therapy is the best – but I am no longer able to fit the cost into my budget. Acupuncture I have not tried yet – actually I believe my insurance covers it, so I may look into it later. Please let me know about the book I am always searching for new and better ways to cope with the pain. Thanks for offering that resource.
Linda you definitely have a very positive outlook about life to have endured five back surgeries, you seem to be doing ok and that's probably a result of your positive attitude! (I made the mistake of watching YouTube videos of the surgeries – yikes).
See … this is the type of feedback, support, and encouragement from you and others that is going a long way to help me get things into perspective. I feel better just from the couple of times I have posted on the site. Thank goodness, I found you guys
Thanks again Linda!
lindagkelly koko44558
Posted
Those surgeries are both very serious. I had similar ones to my lower back - 3 fusions in 2 days. Lateral fusion and a cage (through my left side) which damaged my femoral nerve so now I have aching and burning in my left thigh all the time. And an arterial fusion the same day L3-L5. Next day a fusion in my back - L2-S1. The fusion at L5-S1 has failed twice. And yes, the surgery was very rough, and painful with a long recovery period. I quit working last December because I can't sit any length of time any more. The surgery did not help with any of the existing pain I had, and in fact created more.
I'm close to your age - 61. You have to have your heart checked and a blood test and other tests before they let you have the surgery.
My daughter has a lot of the same types of problems in her neck that you have. She got a serious of injections that actually helped! You might want to try that. I'm having sympathetic nerve blocks right now for my legs which are helping (well not with my thigh) but with the numbess and tingling and pain in my feet and legs.
Good luck. Be careful. Also, google for reviews of the doctors you are trying before proceding. You'll learn a lot about your doctor that way.
Take care,
Linda
koko44558 lindagkelly
Posted
Thanks so much for sharing your experience - it was Very helpful.
In particular, I am glad you suggested I google reviews about the surgeon. (I’m surprise I didn’t do it before, I google everything - that’s how I found this forum lol!)
Anyway, I did my research (exploring multiple sites) and I am extremely pleased with the results. According to his peers and patients, this surgeon appears to be a highly skilled & respected orthopedic surgeon. On the local, state, and national level, he consistently ranks high as a top orthopedic surgeon. I also read over 50 patient reviews (there were many more) - no complaints other than the wait time for a first visit. He has 36 years’ experience as a spine surgeon – for me this is a very good thing , no on the job training ha,ha!
One of his specialties is combination back surgeries i.e. cervical/posterior surgery... as in my case. He performed 17 of this type of surgery in 2013 - not sure how many in the past 2 years, but I'll ask at my next appointment.
I must say I did feel comfortable during my 1st and 2nd appointments with him and now after researching his medical background my confidence has grown. So, I’m sticking with him. He is now officially “my" surgeon vs "the" surgeon. I am aware he can have an ‘off day’ or the results of the surgery may turn out different than expected … but I’ll take the chance as well as his suggestions for remedying the issues with my back.
Thanks again Linda for the suggestions! I sincerely wish you and your daughter the best on your road to recovery.
lindagkelly koko44558
Posted
koko44558
Posted
Hey again!
Beginning with my first embarrassingly long post … I felt better after writing my situation out. Then came your comments of support and experiences and that really helped me begin to get things in perspective vs just freaking out! I complete PT next week and see my surgeon the following week so now it is decision time.
I have decided to have the ACDF & PCDF surgeries. Some folks (medical, friends, & family) say …“well the pain and damage is not bad enough yet”… and I say … I do not understand why I would wait for more damage and pain to occur before doing something ‘now’ to head it off. It just seems to be a more proactive choice. For Me.
However, my decision is not based purely on alleviating my back pain, there is something about my spine ‘crumbling’ that just does not feel right. I recognize this is a major medical decision and a major surgery but if it does not work out…that will be on me. Nevertheless, after much research and weighing the pros and cons I have a great deal of confidence in my choice and more important in the surgeon.
Ok that’s my rationalization!
I’ll update my posts as this journey progresses as well continue reading and responding to posts on the forum!
Thanks guys! (For Real, Thank You!) Hugs!
iellen32 koko44558
Posted
All the very best and keep in touch with all of us!
X
lindagkelly koko44558
Posted
koko44558
Posted
An update:
Scheduled my ACDF surgery for March 14...the surgeon wanted to do it in mid Feb but I needed more time to pull things together. Before I left the surgeon’s office they measured me for and gave me the 'dreaded' neck brace/collar to practice using at home during daily activities such as - eating, sleeping, and going to the bathroom etc. I put it on a couple of days ago, but after about 5 minutes I removed it … I felt like a grape being squeezed – as though my head might pop off! Haha! I’ll give it a go again this week.
I do at times get anxious about the surgery and recovery, more so about the recovery - because I live alone. I’m going to rent one of those ‘recliner lift chairs’ to sit and sleep in for the first couple of weeks after the surgery - that should help. Of course, there are family and friends to lend a hand. We will see. I’ll keep you posted.
Hope all is well!
lindagkelly koko44558
Posted
I had a serious surgery too in 2013 and I was in the hospital and recovery for 5 weeks. To ease into going home, I went and stayed with a friend at her house for a week before going home. I also had a visiting nurse supplied to me by my insurance. You might ask about that. Good luck!
ellen82139 koko44558
Posted
lindagkelly ellen82139
Posted
iellen32 koko44558
Posted
You are and will be in my thoughts and in my prayers.
xxxx
koko44558 iellen32
Posted
I have decided to focus on the positive because when I don’t - I get caught up with what can go wrong - that makes me anxious and I start to second guess my decision to have the surgery. Grant it, negativity does edge its’ way into my psyche, especially if I’m overtired or overwhelmed. However, I have a mental check list of positives that I tick through to help me get back on track. If that fails, I give my sister a call and she ‘pushes’ me in the right direction with her no nonsense feedback … HaHa! Reading the posts on this forum is of great help also.
Thanks for the encouragement iellen I need it and truly appreciate it.
koko44558 lindagkelly
Posted
I thought about staying with one of my sons but their homes have a lot of stairs and honestly - grandkid noise doesn't work for me LOL! I did look into getting a home health aid and was relieved insurance will pay for those services. The surgeon said if necessary becasue I live alone he will admit me to a rehab for a short time and/or extend my hospital stay. So we'll see how it works out. Thanks for the suggestion and I will keep you posted on my progress.
hope all stays well...
koko44558 ellen82139
Posted
Glad you mentioned the bath board. I asked my surgeon about the toilet seat and bath chair, he said he can't prescribe it until after the surgery. Which I found odd because everything I read mentioned to take care of getting those things ordered before surgery. I hope the physical therapist or medical social worker will be able to get that process going while I’m in the hospital. I’ll also look into getting a V-shape pillow.
But listen to this Ellen - it’s crazy! I read an article about what is needed for “bathroom time” after spine surgery, which I gather, is a bit of a challenge. The article - written by an occupational therapist, pointed out that no matter how much family and friends want to be helpful they may not want to clean you up after using the bathroom. (Aww…so much for unconditional love lol!) Anyway, to resolve this ‘issue’ it seems that metal cooking tongs and flushable wipes will get the job done. Really!? Live, learn, and be surprised! I still laugh every time I think about it. Of course, now I have both on my shopping list. Just wanted to share that ‘helpful’ hint - pass it on if you think this will help someone … laugh!
thanks for the suggestions ellen!
lindagkelly koko44558
Posted
Linda