ACDF post surgery fatigue and shakiness

I am nearly 3 months post surgery. I have fatigue and shaky/jittery symptoms as if overcaffeinated and/or stomach butterflies as if speaking in public. My balance continues to be an issue.
I don’t think this is understood by my doctor.

I have had these symptoms for nearly 14 months. I went through PT three different times
I had injections in my neck for 6 mos.
I had 2 ablations
I had PRP injection
I was finally properly diagnosed with “Swan Neck” and had ACDF in November - C3-C7
I have my 3-month check on the 9th.
The symptoms feel like extreme cafeination combined with the extreme butterflies when facing a speech in front of a large crowd and the attending fatigue .
We thought the surgery would resolve and if it is just a matter of an extended recovery that is one thing and I can deal with that. If this shaky, jittery, fatigue and balance issue(s) are something else, I need to get direction. I am going to press my orthopaedic surgeon but I have not had much luck with any doctor understanding this condition. I have had ridiculous good health until this cervical/spinal issue and ensuing effects and
Have no answers.
Any useful inputs would be appreciated.

Thank you for the feedback. It is useful to get some thoughtful input.
I take no supplements other than protein drinks which I use after working out - some cardio and weights. Doctor said light weight training for 2-3 months.
I have my 3-month next week and have scheduled a neurologist for 3rd week in February.
I plan to send my surgeon a concise but thorough write up on my status and symptoms.
I got sloppy and stopped taking am much fluids as I was told. I am back to drinking considerably more water.
My surgeon said after the 1-month that I could go back to normal life - travel, play golf etc. - there is no way I can walk or play golf with this fatigue and balance. 1/12 yrs. ago I felt like I was 50 - strong, active etc. this condition makes my feel 80 and just enough of a balance issue to make regular activity difficult
I have seen 14 doctors and no one seems to diagnose the fatigue/shakiness.

My experience with 2 highly educated doctors - MD’s - one a DO spine and pain the other Orthopaedic - both did stints at Harvard and Yale, they over-promise in consultation and hedge post surgery. Both suggest they can fix my problem . With both I described in writing my symptoms for the previous 18 months. Neither wanted to address specifically the cause of these symptoms and how they are coming from the nervous system and how and how long healing will return my nervous system to normal OR they just don’t know what is causing these symptoms and move me to someone who does know.
Now, if you are suggesting that these are coming from my nervous system and it will take 6-13 months but this is about healing and they do understand what I am feeling then I can live with that and just deal with the healing believing that they know what is going on and have confidence I will get better.. Your message suggests this is about damage to my nervous system - from the spondylosis and “Swan Neck” and the damage is still evident from my surgery and healing is longer rather than shorter but it should come then I feel much better. I know you are just reacting to my posts but you seem to suggest that some, most, or all is related to what I have gone through and how the surgery has a longer healing time.
Help???

1. June ‘22 - I bean to feel I could not maintain posture with my neck. It was pushing/protruding forward . My head felt heavy, a lot of tension and the beginnings of some shakiness..I saw a sports doctor MD and she wrote it off to the accumulation of posture issues, arthritis and age. She prescribed PT. MD#1
2. Two months of PT . Did not yield much and I left . I went to a Neurologist - she prescribed a MRI - Spey 22 - went back with MRI . She never discussed the MRI findings or pictures . No diagnosis just recommended back to PT
3. Nov. - new PT . Went through December until I required surgery for umbilical hernia. I constantly complained that I had this great fatigue, shakiness, chills-like feeling down to my toes and issues with balance. I was an athlete, worked out with weights religiously 4 days a week, heavy landscape work, dedicated golfer. All of these activities were now stopped because of these symptoms.
4. My PCP sent me to a neurologist - he found nothing but wanted me to set up an appointment for x-rays #4 MD - #3 set of my 2nd round of PT.
5. January 23 - PT not helping and MD#3 sent me to National Spine and Pain -#5 - We thought this doctor, a woman was our Angel. She said she could fix me with epidural injections and I Latinos at the end to burn off nerve endings- Her notes which I read referred to my condition as Spondylosis.
She set up aggressive PT with very good and knowledgeable therapist. I had monthly injections with follow-up with her Nurse Practioner. Injection follow-up in two weeks. Wait two more weeks and next injection. After the second injection the doctor stopped consultations - I went directly to the OR where we had brief chat about how I was doing and explanation of next injection.
6. I finally decided to think surgery was the answer and booked 5 appoints - after 3 doctors including Hopkins said I was not a candidate for surgery and said to stay with Pain Treatment I was now on Doctor #10 with another neurologist in between.
7. I wrote a letter to my woman DO suggesting my concerns about lack of consultation on my condition and how I am going to get better. I suggested her notes saying I claimed my condition had improved 80% were not accurate - (malpractice?). She never responded.
8. After 2nd ablation in June after which she said “give me 5 weeks” for it to fix my problem. 6 months and 5 treatments.
7. July 23 - 6th treatment - her OR assistant said I would get relief in 10 days. After 2 days I felt some improvement but it did not last.
8. During the six weeks before my next appointment I went to another doctor and he prescribed Plasma Injection - PRP - and said there was better than 60% chance of resolution.
This did not work. MD #11.
9. We went to movement disorder doctor #13 after another surgeon prescribed C-scan and consultation with Movement Disorder - - waste of time no diagnosis .
7. Sept 23 meeting with Spine and Pain - NP met with us to discharge us - we had exhausted Medicare prescribed treatments and they did not work. My wife pushed to have Doctor come in. Amazing she was not there from the beginning . After we pushed she finally offered up a last resort - Orthpaedic Surgeon.

10. October 23 - Dr looks at MRI and dishonors “Sean Neck” and says he can fix with ACDF and after viewing his video on what it involved we set a date for surgery - Nov 23
At every turn I sent an email to his MA outlining my symptoms and feedback post surgery was it will take time.
11. Feb. 1 - yesterday, after my long email DR prescribes another MRI and promise to get me a consultation with Neurologist.
12. I have my 90 day pot op next Friday.

18 months of my life lost with resolution on my spine BUT no resolution on my symptoms - fatigue balance shakiness.
Sorry for the length and trying to make it cogent is difficult

My work was in hi-tech sales management

The reference to the weight training and landscaping was to establish I have been fit and strong and athletic. I am or was in great condition. The landscape reference was about building an English garden for my wife and I which had to be put on hold and not completed because of this problem.
This is coming from my nervous system as you alluded and the presumption was that this would go away with this surgery. It hasn’t and none of the doctors I have seen have addressed or diagnosed these symptoms. You alluded to nerves getting jangled from the surgery and needing time to heal and reassemble or whatever.
If that is the case I can accept the time it will take. But absent an expert and educated answer I am dealing with a 18 month ongoing dibilitating condition that prevents me from doing much of anything.
My surgeon’s MA says he has seen this before. If so I expect he should have spent 10-15 minutes addressing what is going on, the cause and the resolution and length.
I have no faith left in doctors but you cannot push back too hard or think feel insulted.

I have had this feeling for 18 months. I cannot walk around Costco without having these feelings.

The ACDF surgery was done to fix the “swan neck” and get my neck “moved back” closer to what is straight up and down. Since there was great forward pressure pushing my neck forward it seemed that the fatigue and shakiness resulted from this condition. You alluded to the nerves having to heal and “re-engage” which suggested that maybe these symptoms are part of the nerve damage that needs to heal.
I have no other way to account for these symptoms except for resulting from a “nerve issue” - it is not muscular or skeletal.
Have you ever watched a video explaining ACDF? Just curious.
My MRI is Saturday and my surgeon meeting is next Friday so he will review and I am waiting for an appointment with a neurologist .
Question - do you not think these symptoms are associated with Nerves? Since I have never had anything like this and it started when my neck issue started and this is all tied to the spinal nervous system it seems a logical link.
I am lost hoping I can get back to normal energetic natural feelings able to walk with energy and balance.

Susie,
Thank you for all your comments - very helpful.
I had my MRI this morning and doctor will be able to compare this to previous MRI’s.
Doctor is working to get a consultation with his preferred Neurologist.
I agree that this is a central nervous system issue - nothing to do with musculature or skeletal . I’ve never had anything until this neck C3-C7 issue which makes it difficult to understand, explain, and determine what is is and it’s cause but it is nerve related and because it came on linked to the neck problems there is some linkage. I saw 4-5 neurologists and got nothing - no good questions, no diagnosis and no next steps which adds to my lack of respect for these guys. But I have to keep seeking an answer and a fix and, frankly, I am scared that I will not find resolution. Eighteen months of expectations that each treatment would get me to normal and the waiting for that day when I wake up and walk with the normal freedom I was used to. I am physically strong and feel otherwise much younger than my age but this has limited my life.

Sydney, in my first post to you, I asked if you had ever had your B12 & vitamin d levels checked, lol. I am so glad you had these checked. I had very low B12 several years ago, did weekly injections, eventually did monthly, then went to oral B12. To this day, my dr keeps me on 2500mg per day. Likewise, same with vitamin d, I was very low plus have osteoporosis.

Do you know what the results of the MRI was?

My brother suggested my symptoms might be linked to Diastasis Recti. An appointment in October with a gastroenterologist showed minor diastasis. Since the symptoms - core weakness, shakiness, abdominal issues almost doubling me over and the ensuing balance issues suggested this was worth investigating. I had an appointment today with a surgeon who treats this . He ruled this out as the possible culprit.
I am back to continuing my B12 shots - my 5th will be Thursday. I would ask this question - how long might it take to get my score for 244 to a normal level?
I am now thinking these symptoms are linked to nerve issues and will see my neurologist early April. I have no where to go with these symptoms and every time I try to talk myself into thinking I’m either improving or can fight through this I walk around and know immediately something is wrong and normalcy is not going to just happen.
There is something wrong and my only guess now is it is somehow in the nervous system in my core area. I would add that there is definite weakness in my core- I cannot pick up anything where my stomach muscles have to engage. In the gym I tried to do some curls with a cable using very light weight - less than half what I used to do - it was nearly impossible to pull up the bar and curl to my chest. Not good
Thoughts would be welcome