ACDF c4/5, cc5/6, ongoing issues

Hello again & thank you for making your intro post. More people will see your post & respond. Well, you are in good company here, as we have had many members have cervical fusions.

Your are still in the early post op stage of recovery & many of the things you have mentioned are normal. The feeling great, then not feeling so great, the voice thing usually is better in a couple of months. It is true the younger we are the easier it is to bounce back from most surgeries. However, you have just had a very traumatic major surgery so cut yourself some slack & lower your expectations of yourself. Sure drs tell patients they will be well in 6 weeks because they read that some where in their text books. Well, that is simply not true & does not come close to the reality of what a patient actually goes through when they have these surgeries, not even close. Reality is, it will take you a good 18 months to totally recover from your surgery & at that mark you will know how successful your surgery has been for you. If there are going to be any residuals from the surgery you will know by then.

In the mean time use this time to take care of you. Listen to your body it will warn you if you are doing too much. Don't over do things, this is where we see people mess up in a major way & then pay for it. People tend to think if they push their way through it will make things heal faster, not true so don't go there unless you are willing to take the risk. Above all be patient, lol. You can do this. I wish you would have found us before surgery, we have a group of members that put together a list of helpful things to have & do before this surgery. If you will look in CP101 at the top & scroll through towards the bottom you will find their info. I am betting there is something in there that can help you out.

You mentioned being a little on the emotional side, a lot of us do this after surgery. I honestly think its the anesthesia that causes this. I have had many surgeries & each time I go through this blue phase but the good news its temporary.

Again, welcome aboard & take care.

Welcome to the THINK FUSION CLUB!!!

Fusion is the goal of your surgery so please be patient and don't do something to keep that from happening. The pain you are having might be your body telling you to take it easy longer and let it heal properly. Six weeks is a typical recovery time for many surgeries, but you have had Major Surgery with a slit in your throat and your spine moved around. My doctor would not even check for fusion for 3 months, and even then it was just beginning, not solidly fused. That takes a year or longer. I'm also sorry you did not know all this before surgery but as you said there was not much time then. I'm glad you got quick relief, now just take it easy on yourself and you can expect to have that again. Ice was my best relief for a very long time, plus just sitting down in my recliner. Is there anything that makes you feel better? Are you taking muscle relaxers?

I hope you are not needing to go back to work or have to care for small children. Those two things make many people rush their recovery and often they don't get the best healing and relief possible. Some people try to push themselves too soon, walking too far, playing with pets, or some other exercise....that's not good. This is your time to pamper yourself and get the best recovery possible.

I was looking for a certain post by a younger woman that I thought might be helpful to you. Finally found it...it's the one you posted on first, so I guess you read that.

THINK FUSION!!

Hi GFM I am also 4 weeks post op acdf and like you I had instant relieve from the surgery unlike you I had a lot of time to research and seek advice before hand. The hard thing for me is that this is the best I've felt in over 12 months but I'm not allowed to do anything like other people have said don't rush your recovery the other day I did a bit too much walking and I couldn't believe that's all it took to make me tired and for me to feel a bit of pain in my neck and the thing is before surgery I was a big walker. As for the arm pain my neurosergeon said that it is normal for that to happen on and off because things are settling down after major surgery and also the fusion is also happening when it first happened to me a couple of days post op I did stress but my neurosurgeon told me not to worry unless the pain goes off the charts. Doing nothing is very boring but just think of the long term benefits. I hope your recovery goes as well as mine is and just remember baby steps 🤗

Hi Frankie & welcome to Healing Well. Since you have posted on another members thread & we don't want to hijack their thread I will make this a short one, lol. You should be concerned about returning to work so soon after your surgery, especially at a computer all day. Being off work 4 weeks is just not enough time at all.

If you would please copy & paste what you have posted above into a separate intro post. That way all members will see your post. We have lots of members that have had this surgery so you are in good company. Thanks.

I know your frustration firsthand! I had c5-7 fusion in 2005 when I was 40 yrs old. I expected to be back and active after a couple weeks but like others have said, it's major surgery and can take a long time.

After 3 weeks, the major post-surgical discomfort came down for me, but I still had a lot of pain for months (the pain was different from the awful nerve pain before the surgery--it was concentrated on the opposite side of my surgery and was burning, jabbing, debilitating pain). When my pain was still really bad after 9 months, I found a new doctor who diagnosed me with Myofascial Pain Syndrome, which has now been a 10+ year journey. So in my case I guess I didn't have a normal recovery, but at least the excruciating nerve pain and numbness are gone and I have the function of my arm back.

So all I'll say is listen to your body and take it easy the first few months and hopefully it won't develop into something else like MPS (which I later found out can be triggered after surgery).

My best advice is don't overdo it and listen to your own body because the surgeons don't know how your body feels. And even when you feel a little better, take it easy. It's so easy to overdo it. The key I think is patience, which can be very hard for some of us (it certainly was for me). Best of luck to you!!

Oh, and I also have a right aided headache back predominantly like cling film over my right eye wig pain down right side of my face. Am putting this down to me stressing but this was present pre op, and seemed gone for first month or so afterwards. Apologies in advance for my rambling!

It's now 14 weeks since op and I have had another MRI done at the request of my physio as she felt my right side was weaker, losing strength and just general concern for the level of pain I had. She's such a sweetie.

Last Thur I had a GP routine check and mentioned I hadn't got any results back despite chasing them weekly and she promised to chase for me. She also prescribed artificial saliva as on checking my throat said it seemed excessively dry, and my voice is still very croaky. On top of that as the pain is getting worse, not unbearable but still bad enough to go back on meds, I am also getting more tired. All in all a bit of a step back I felt. She then also ordered blood screening which I'm still waiting on.

That evening I got a call from my consultant saying there were some 'issues' and that I should see him in clinic the next Monday and prepare for more surgery the following Friday. Not what I expected at all.

I arrived today, Monday, after driving myself to hospital, to see him. He then said that he has changed his mind after seeing me that I am not such a semi emergency to be treated as he thought by concern from my physio and GP, but my scan has shown that my level 5/6 discectomy still shows signs of pressure on the spinal cord which would account for pain. Level 4/5 repair is ok but not 100% but as good as it will get. No explanation for level 5/6, just that it can sometimes happen.

He then put the fear in me saying I have 2 options: go for repair upon repair surgery, which magnifies the risks in comparison to the first time OR go for pain medication, increasing as required and attend pain management clinic until such time it becomes a semi emergency for surgery or it actually heals itself. No difference!

I feel as though I am now losing the plot! I get that it's not as immediate an urgency but how can pain meds help if surgery is required. What benefits are there to waiting?

Pre surgery the last time I was taking painkillers every 2 hours of my waking day! Something I will not be going back to and actually gives me the fear more than the thought of further surgery.

Ive come away to have time to consider whilst he consults with a management team to their thoughts. I feel surgery, and at this stage, not further down the line would be a good option for me. I certainly didn't think I'd be repeating any of it.

Has anyone else had to repeat any levels and if so, at what stage after the first repair!

I actually live in central Scotland, where we have our National Health Service (NHS) and am being treated in Edinburgh. Private care because of the extreme cost is not an option and as I have never had private insurance with work and to be fair have had fairly good health all my life it wasn't something I considered. In hindsight, how useful would it be at this point? However, at this stage even if a company would consider me for insurance purposes my current problem wouldn't be covered, for obvious reasons.

The doctor treating my has very good credentials, in so far as my limited knowledge goes, but I have to admit I am not happy about the vagueness of his diagnosis and explanations at the moment.

Pre surgery I was told he would see me in his clinic 6 weeks post op as this was standard. Post op, in HDU, he told me all was ok, and there were no complications. I waited at home for my 6 week appointment and at 5 weeks called to chase it to be told it would be more like 10'weeks. I then got an appointment through for 16 weeks to then have a revised appointment for 19 weeks post op.

This, I'm afraid, is entirely normal to have in our NHS as we are monitored by our GPs. I am lucky in that I have a good GP who initiated this whole investigation and I also returned to seeing the physio (NHS too) that I was seeing pre op. The physiotherapist actually discharged me whilst waiting on my initial MRI results, which incidentally got 'lost in the system', hence why I ended up being emergency op. Hey ho! Definitely not a straight forward case am I?

I also have not only pain all up my arm, into my underarm and around my shoulder and at the back of my neck, but have now got shaking (albeit alight, and not always) back in my hand as well as weakness in my grip. My leg also takes frequent spasms and although not particularly painful I have a limp like a kind of sciatica type reaction in the leg (although not sciatica as I've had that when pregnant and know what it feels like and it's not like this). I also have tingling, pins and needles and numbness all down one side of my face, (again, intermittent but consistently since before my op which I thought was coming from the neck issue), as well as a blurry eye and the sensation of a runny eye despite it being dry.

Crikey, reading it over I sound fit for the rubbish bin, lol!

All of the symptoms described in the previous paragraph I mentioned to the consultant and his only explanation was that it wasn't coming from the c5/6 level pressure and that wasn't what he was concentrating at the moment. Stupidly, I ran with it and concentrated on the discussion on the pressure still occurring and forgot to ask what then would be causing the rest of the symptoms and what would be done to establish cause? Something I will remember to ask the GP when I'm next in as I'm due to see her before the consultant gets back to me with his discussion conclusion.

And at my next consultant visit I will be sure to take someone in with me to ask the questions I stupidly forget to ask!

It would also be good to hear if remaining pressure is something that someone has had, and left alone and been able to live with without it getting any worse. (I've probably asked this before, apologies if I'm repeating myself).

And, even if anyone has any thoughts as to what I should be asking in order to get some better answers?

Thank you for your reply, it really is a good help. Some of it I know and realise but feels better having someone say it to you to reassure you that you are right.

At the moment I am just really scared because everything is so vague, because my care is consistent with NHS but not consistent with my treatment, it, not regular enough and too many inconsistencies with my MRImeesults being 'misplaced', not once but twice! Then to have a panic phone call from the consultant when seeing my scan (his words, not mine)!only to be told he is undecided when seeing me a few days later.

I feel as though I am not moaning enough to get results, eg those who shout loudest get results? I probably need to be a bit firmer and succinct in what I am saying, and what I am asking, rather than just accepting that every pain or weakness may be down to recovery. Clearly I am only recovering from a fix at one level (c4/5), the other level hasn't fully worked (c5/6), going by he reviewed MRI, which he showed me compared to pre op MRI.

Once I calm down a bit and become rational again I will stop my rambling (hopefully, lol).

Just grateful to have this medium to bounce my frustration against at the moment. And it's been a great help so far!

Thanks for the reply and the support White Beard.
So... The plot thickens!

I received a call from an unknown doctor on Thursday morning:
Doc: how are you?
Me: ok
Doc: I'm just checking how you are as I have a note to phone you?
Me: oh, ok. Why is that? Who are you?,from where?
Doc: you're not expecting this call, are you?
Me: em, no, well, at least I hope not!?
I explained I was in for a consult with a surgeon in Monday, supposed to be getting an op on the Friday, and then he told me I wasn't. So I was starting to get a little worried.
5 mins later my own GP calls back. She had asked receptionist to schedule a phone consult and they had put it in in the wrong doctors column. Whew! Easy mistake but still a wee shock!

My own doc then proceeds to tell me that she had chased my MRI results down a second avenue and eventually got them and wanted to let me know it wasn't so good. No shock there I told her, I've been in to see the consultant 3'days ago but he's now NOT operating at the moment. She seemed slightly confused as to why the delay. Neither of us can work this one out!

Late afternoon I decide to go out for a while to pick up a prescription, for my throat which would you believe, couldn't be found!? I waited 10 minutes for them to finally locate it, although I was beginning to feel like I don't exist!

I return home only to have a missed call and a message left from pre admissions department at the hospital. Their department was closed so I had to wait till the following morning to call back, which I did first thing.

I am scheduled for a pre op admission appointment this Friday 8th July and for a further Op next Thursday 14th July, where my consultant will be assisted with another more experienced consultant, whom he did speak about with me at my last appointment. Obviously it was only a receptionist who I spoke to who was unable to tell me anything further but said I will have a chance to meet and ask any questions I may have with the 'other' consultant. They will both be sharing the operation next week.

It going to be a long few days until this is happening but I suppose at least it is going ahead. I feel as though I am being awkward by expecting someone to have at least called to explain why it is happening now as my consultant implied that it wouldn't be until after he came back from holiday, which is in August. I would really like to be included in their discussions regarding me!!

My GP,is such a great person. I realise she is restricted in what she's able to do but she is certainly making all the right referrals and is chasing results when she can. I just feel that the GP surgery and the hospital aren't communicating, despite everything being electronic!! My GP file shows no communication from the hospital regarding anything since 4th March, date of my op, despite having had an X-ray, and an MRI scan, both of which should be recorded.

I am so grateful to have been on here because it is at least some sort of detailed trail as to how I have been feeling during recovery, and at last it is dated. It's actually a more detailed log than what my GP seems to have been privy to!

And so my saga continues. I have a checkup with my GP this Thursday to discuss blood results, which she requested a week ago and no one contacted me to arrange a nurse appointment. The GP has said to come in anyway and she will do them herself. I'm kind of feeling that maybe I shouldn't waste her time but I want to make sure that she is still continuing to monitor my care and keep me informed of it where the hospital just seem to be doing their own thing, and forgetting to keep me updated.
What a pantomime it all seems! Lol! I'm sure you guys think I can't get any more dramatic. I thought that last week too to be fair!

Let's see what this week brings, meanwhile I'm practicing my positive thinking!

Have a good day everyone!

GFM I guess the plot really does thickens!!! But I am glad they are taking a more serious look at it though! Please do keep us all informed of your developing situation. We do care!

I do wish you all the best and hope this all works out for you! And remember we are all here to support you!

Good Luck to YOU!

White Beard

Well I guess at least be thankful your care seems to be moving albeit every way other than forward first but getting somewhere right? Here I thought we had a complex confusing healthcare system.

Good luck all the same and hopefully this novel will have a good ending.