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Posted By : GFM - 4/4/2016 5:56 AM
Hello, I'm new here despite having looked in before surgery but now registered to join in.
I'm just over 4 weeks after ACDF surgery on c4/5 and c5/6. Immediately after surgery I felt amazing! I had none of the neck stiffness nor arm pain and numbness I had previous to Op. However, from about 3 weeks afterwards, and after doing very little, I have been experiencing quite bad arm pain and numbness although nowhere near what I had pre-op. Just worried why.
My voice, although my throat has never been sore, is still quite croaky and weak. I am also quite emotional, crying easily at silly stuff on TV etc, which is totally not me.! Otherwise, seem to be up and going ok.
I have absolutely no regrets in having the op, I am 45 years old female. ( I didn't actually have an option as my spinal compression was so severe by the time I was seen, despite years of doc visits, but that's another story!)
My only frustration lies in the amount of time the healing process is taking on my body as a whole. I am so slow in whatever I do and so easily tired, which again is not me. I thought that after 3/4 weeks I'd be back to normal again. I don't even see that being the case at 6 weeks?
Has anyone else, same age, had similar? I thought that my age would've enabled me to recover quicker. And has anyone else suffered a loss of patience in the process? Lol!

Posted By : straydog - 4/4/2016 6:48 AM
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.
Susie
Moderator Chronic Pain & Psoriasis Forums

Posted By : GFM - 4/4/2016 8:46 AM
Thank you for the reply. I didn't have much time to find anything before my surgery as had my consult to get MRI results on the Monday and was in surgery on the Friday morning! Never mind, it's good to see/read that other folk are experiencing similar issues and hopefully time will be helpful for us all. Not nice for other folk to be suffering but reassuring for everyone else to know that they are not on their own. Already reading some things on here has been helpful for me! Thanks again!

Posted By : Abilene - 4/4/2016 2:51 PM
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!!
Subclinical Hyperthyroidism; Sleep Apnea; Shoulder Impingement Syndrome.
Posterior C3 - C7 laminectomy and fusion 2 rods and 10 screws, local bone graft from surgery site-lamina and other bony tissue 12/17/2013
Thankful for my husband of over 40 years

Posted By : White Beard - 4/4/2016 11:52 PM
Hi GFM and Welcome to Healing Well Chronic Pain Forum! This ACDF surgery is not like getting your tonsils taken out , this is a major undertaking! As for the weak voice this is rather common with the acdf as. they move your esophagus out of the way to get at your cervical spine this can stretch things out a bit especially the nerves going to the larynx! After my first ACDF at C6/7 I completely lost my voice for over three months. Your voice will come back to normal over time as it takes a while for the nerves in that area to regenerate and heal!

As you have already been told and iI will also say it again. Be patient and gentle with your self and above all don't over do it no matter how good your feeling! We always end up "paying the Piper" when we do that! The bone graft will take time to grow to complete the fusion so it is important not to put to much stress on that area during your time of healing!

Anyway this is a great place to come for information and support and also just to vent your frustrations about your pain and surgery and the healing process! There is always a compassionate caring ear ready to listen so your not alone!! As the saying goes "misery loves company" well we all know what misery is so you have lots of company here! ha When your here on this forum your part of our chronic pain family and we all care about each other!

Again I Welcome you to the forum! I wish you well, be patient and gentle with yourself and as Abilene told you....."think fusion!"

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.

Posted By : Vic39 - 4/6/2016 9:27 AM
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 🤗

Posted By : Frankie66 - 4/19/2016 7:19 AM
I joined this forum about a hour ago in hope of getting an answer to the problem I now have and to put my mind at rest. I think I looked in the right place.
I had my spinal fusion c6-c7 on March 31st ,although my pre op symptoms have not all gone the difference is amazing. I am due back to work on Thursday (2 days time) by which time I will be 4 weeks post op but 2 days ago I started getting really bad neck ache both sides of my spine. Is this just part of healing process ?, I did not have neck pain pre op only arm pain and muscle weakness.
In my job I sit at a computer all day so I am worried that I will be damaging the good that has been done.
Any advice is very welcome.

Posted By : straydog - 4/19/2016 10:37 AM
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.
Susie
Moderator Chronic Pain & Psoriasis Forums

Posted By : Frankie66 - 4/19/2016 1:53 PM
Sorry about that - I am new to all this.
I have done (with help) as requested.

Posted By : Healingfromchronicpain - 4/22/2016 9:06 AM
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!!
Ruptured c6-7 disc and had discectomy & fusion surgery at 5-6 (bulging) and 6-7 in 2005. Developed chronic myofascial pain syndrome. After years of traditional treatments, mind-body based physical therapy helped me out of a death spiral of pain, although chronic pain still lingers. I sometimes write about my journey at https://healingfromchronicpain.wordpress.com/

Posted By : GFM - 4/26/2016 5:37 AM
Well, I was doing pretty good around the 5/6 week mark. Hardly any of the same pain I had pre op. Now I'm back to having a moan! It's 7 weeks past and I have tenderness and stiffness across the top of both shoulders and back of my neck. (Previously only right side affected). I've also had pain back in my arm and numbness back and forth. And now I am beginning to get the muscle spasms back in my leg periodically. They all seem to be triggered when I do a little bit more than normal or am slightly uptight about something, yet I am more relaxed in mind and body now than I have been for a while. I also don't have my voice back fully yet, which is no big deal and it's there, albeit coming and going and in a squeak, but it does slightly concern me. My consultant said at my pre op check that he would see me 6 weeks after my op. I have just had an appointment in for 18 weeks from op!? Is this the norm for others. My GP just fills out a sick certificate every 3 weeks and says that they do not require to see me to issue another one each time. I don't want to waste any ones time as what I am experiencing is far less than pre op, I just feel a bit anxious to get fully recovered and without pain. And now I'm not sure if I was told that all nerve pain would be gone or if there would be some residual damage or whatever? Boy is this starting to stress me out and worry me!

Posted By : GFM - 4/26/2016 5:39 AM
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!

Posted By : straydog - 4/26/2016 9:02 AM
Hi again GFM, I am going to pass a tip on, any time you want to add something to a post like what is above, click the little pencil icon & it will let you add something, lol. Don't worry about it, it took me quite some time to figure things out here. Had it not been for some friends helping me out I would not have figured it out. I am not computer savvy at all, lol.

Believe me when I tell you this & I know you are tired of hearing it but you are just still too fresh from surgery. Spine surgery is a booger, ok. Its a tough one to recover from & it can take up to 18 months or longer to completely heal from a cervical fusion. Meaning, for the fusion to actually become solid. Drs do not tell patients this unfortunately.

You will find that overall you will have periods of starting to feel pretty decent then wham, overnight that changes. This is normal as long as you have not done something to trigger this. Which you stated you over did it. Thats where most folks mess up is over doing. Its human nature I think when we test the waters but for your own sanity you need to lower the bar on your expectations right now & let your body heal. Get in tune with your body & listen to it, it will tell when its enough.

Are you on a muscle relaxer? If not get the dr to rx you one & take it on a schedule. Muscle spasms can wreak a whole lot of havoc on the body & its normal after surgery to have them. You are getting stressed because you seem to think you should be farther along than you are, that stressing causes your body to tense up & aggravates spasms.

If you will type in ACDF in the search box at the top of the page you will find members that have had this same surgery & you really need to read their stories. I think it would help you out in terms of what you cane expect as far as your recovery goes. If you start getting nervous about things, come here & post & get it off your chest.

If the headaches are bothersome, get back in with either the surgeon or your GP & let them know they are back. As more time goes by things should get better but its done in small steps.

Take care.
Susie
Moderator Chronic Pain & Psoriasis Forums

Posted By : GFM - 6/27/2016 5:13 PM
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!

Posted By : straydog - 6/28/2016 8:56 AM
So very sorry to read what you have going on after your surgery, not the outcome any patient wants to encounter. Personally, if this were me I would be looking for the very best neurosurgeon I could find & get a second opinion. I am not sure if you are in the states or not, I have no idea what type of insurance you have but I would not be willing to have another surgery with this one. He is being far to vague for my taste to go any further with him. I would look for a neurosurgeon that is at least board certified in this field, & if you can find one that is fellowship trained that is even better. I would not let an orthopedic touch me either & this is why. The neuros are far more trained to deal with the nerve issues of the spine than an ortho. Like I said, I am so sorry to read about what you have going on. The explanations you have been given are just not acceptable I don't think.

Granted when having these surgeries there is no 100% guarantee of not having issues, however, we see far less issues with cervical fusions than lumbar fusions. For whatever reason lumbar fusions seems to be pretty sketchy sometimes for the best result. You know each time a person has surgery that area becomes weakened. Thats just the nature of the beast. I have been trying to remember if we have had members that had cervical fusions done & then had problems but I cannot think of anyone. Like I said its usually people with lumbar issues.

What sort of post op instructions did this dr give you? One of the things we do here is to get people to be realistic about their recovery time. Drs tend to tell patients they will be fine in a few weeks & that is absolutely not true. The post op care at home is every bit as critical as the surgery itself. With no problems after surgery its at least a year before the person is totally recovered. That fusion has to become solid & that takes time.

Keep us posted on whatever you decide. Take care.
Susie

Posted By : GFM - 6/28/2016 10:03 AM
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?

Posted By : straydog - 6/28/2016 11:58 AM
First off, I suggest that you get a piece of paper & a pen & read your above post & start writing down your questions. Write down all of the symptoms you are having, every single one of them. It really is not good to rely on someone else to ask your questions because they are not the one living with what you have going on. In other words, be your own advocate. Do take another person with you to help listen to the answers you are being given. You have too much going on to settle for vague answers.

Somehow it sounds like your care has fallen through thru the cracks. Waiting all of those weeks for a post op visit is just nuts. Are you allowed to call & make your own appts with this surgeon or do you have to rely on his staff to call you with an appt.?

You are in a tough place no doubt, but once again, I would talk to my GP about a 2nd opinion before doing anything? Do you have ridiculous waiting times to see a specialist?

If you have a nerve that is being compromised you are putting yourself at potential risk of permanent damage. If a person waits too long this is a real possibility. The nerves have to heal on their own & no one can tell someone how long it will take. Thats the downside to nerve problems with the spine.

Like I said earlier off hand I do not recall us having any member that has had the issues you are having. I have been here a number of years & usually its the people that have had back surgery that end up with problems like you have going on.

Take care.
Susie

Posted By : GFM - 6/28/2016 5:18 PM
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!

Posted By : White Beard - 6/28/2016 8:59 PM
GFM I cringed when I read your latest posts! with the symptoms you describe and what they found on your last MRI, I don't think I would wait to long to get this surgery! Pain management with pain medications might ease the pain but it will do nothing to correct the problem or make it better, and waiting could always make it worse! What if you have a fall or get bumped or any of a host of different things like that? A situation of that type could easily turn your situation into a real like threatening emergency! Of course it might not, but with your condition I would definitely think it would put you at higher risk! So what ever you do, I would definitely be careful and not do anything that would put strain on that area of your body. Lifting, pushing anything that would put undo stress on your neck! Until you get this fixed! I have had three fusions in my cervical spine, so I have some idea of what your going through. It is scary stuff, and I understand what it is like having to use a medical system where you don't have the luxury of using a private doctor and surgeon. ( I was in the military when I had my first cervical fusion), and I spent many months trying to get answers for my condition when I finally did I ended up getting emergency surgery, and lost my voice afterwards for several months!!

Anyway I didn't mean to alarm you or anything, but I definitely would be careful and want to get it fixed as soon as possible! Remember GFM your not alone in this , all of us here on this forum are here for you! Please keep us posted on how you are doing what is going to happen. I wish you all the best!

Good Luck to YOU!

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.

Posted By : GFM - 7/4/2016 5:16 AM
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!

Posted By : straydog - 7/5/2016 8:59 AM
Wow, what a bizarre thing to happen. I would stick with my GP as she seems to be the only one on the ball. Communication really seems to be a huge issue. Who's idea was it to bring in the more experienced surgeon? If this more experienced dr feels surgery is an option & one that you are willing to do I would insist that he be the one to do the surgery. You really do not need anymore problems with more surgery. Please keep us posted.
Susie

Posted By : White Beard - 7/5/2016 9:26 PM
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
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.

Posted By : GFM - 7/9/2016 12:47 AM
Well, pre op admissions went well yesterday up until the point where I met my new consultant, who seems like a very nice bloke. He was in theatre when I was there but sent a message to ask me to wait to meet with him personally which he explained later is what he always does before operating on someone if he decides to take on the lead.

New consultant has now taken over my case from last one as he has more experience and a 'special interest' in complex spinal cord cases.

Op still going ahead but he needs a CT scan to determine what the mass is made up of before operating as depending on that, it will determine if it is more suitable to this time go in from the front or the back of the neck.

He also wants me checked by an ENT doc as he's concerned that there may be more damage to vocal cords than my notes indicated. This was something he said he was pleased he had seen me in person as only on hearing me, and speaking to me could he determine this.

He's off to Arizona for a couple of weeks (to work apparently as I jokingly asked if he was bumping me for his holidays) and upon his return he will 'fit me in' to his schedule and won't put me on a waiting list. (By NHS standards this is excellent!)

All in all I feel slightly more settled as I feel he is being very thorough and much more reassuring of the last chap, who incidentally I liked and trusted too, and I don't feel it was his fault, maybe just his manner, or personality.

New chap has explained that when removing discs they do not remove all of the disc material and leave tiny amounts so as not to totally expose the spinal cord. My interpretation on this occasion is that there may not have been enough removed and perhaps a little too much left over which can be acceptable to most people but in my case isn't as it is still pressing on the spinal cord. Either that or the mass appearing in the scan is calcification of some sort, hence making it a little trickier to operate on as a re-do. (His words, more or less). Either way, the CT scan should show what it consists of and therefore dictate the way forward.

So.... it's back to the drawing board and waiting patiently for me!

Posted By : nvrthesame98 - 7/9/2016 4:00 AM
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.
Vickie
CHRONIC PAIN MODERATOR


When something bad happens to you, you can let it destroy you, let it define you, or you can let it strengthen you.

Posted By : White Beard - 7/9/2016 5:37 PM
Hi GFM I am glad that your getting this all checked out, and getting a new surgeon who is taking a fresh look at your condition! Hopefully he can help you! You know when I had my first ACDF at C6/7 in March of 1985,(they did the surgery from the front right side of my neck) and I lost my voice for over three months afterwards, it gradually came back and I was told that the nerve going to the vocal cords was damaged in the surgery. Well twenty five years later, I had to have another ACDF on the disc above my previous surgery. This was at C5/6, and this surgeon wanted to do the surgery from the front left side of my neck, but because of my previous problems with losing my voice with the other surgery, the surgeon wanted me to have my vocal cords evaluated by an ENT before going ahead with it! After being evaluated by ENT I found out that my vocal cord on my right side were still partially paralyzed from that surgery 25 years ago. So the surgeon decided he would not risk going in on the left side, because if he damaged the nerve on that side, I could possible lose my voice totally and permanently, so he changed his plans and done the surgery on the front right side of my neck, that way if there was any damage to the nerve it would on be on the already damaged side!. Anyway the ENT specialist told me, he was surprised that more patients didn't have more problems with their voice after having this type of surgery, because of the way they have to pull everything out of the way, (Throat and Larynx) and stretching the nerves, to get at the spine. Anyway my second ACDF at C5/6 went smoothly and I didn't have any of the voice and swallowing problems that I had with the first one.

I will tell you that I hope you will not have to have the surgery done from the posterior ( back) of your neck! I say this because I had to have my third fusion at C3/4 done from the back and it was allot more difficult to recover from than having my two previous Anterior approach surgeries!! And allot more painful too! With that surgery they put in rods and pins on both sides my cervical spine,, and the recovery was allot longer! Hopefully you will not have to have that type of surgery!

Anyway I do hope that this all works out for you! It sure sounds like you have a good surgeon that really cares, and is going to take good care of you! Again please keep us posted on your condition and progress.

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.

Posted By : GFM - 7/11/2016 1:13 AM
Thanks again for your response!

I'm liking the new guy as he is very reassuring, answers all my questions thoroughly and his explanations always seem very clear.

I feel even more reassured having heard from you as he too explained that, looking at my neck with a scar in my right you would assume that they would avoid scar tissue and approach from the left. He said that this wouldn't always be the case as he would need to avoid any scar tissue which would make it a more difficult op, and therefore approach from the left. On hearing my croaky voice though, as I said, something that could only be flagged up I guess by hearing me, he then decided to put the op on hold till he got ENT to check my vocal cords.

Unlike my last doc, whom I felt was a bit reluctant to mention things like 'damage' to anything, the new guy just says it all matter of fact, in a kindly manner. This is something I personally need. I can be a bit soft hearted sometimes, usually in private, but the best way for me to deal with anything is to have the truth and the facts. I can then go away and digest at leisure and at least know what I am dealing with.

I started explaining this to new guy and said to him, hey, if having a dodgy voice for the rest of my life is my biggest issue, I'll cope, it's no big deal. It was then he explained that it was the potential internal effects causing this that might be the issue. Frightening, but at least I knew. The old doc just used to say 'Mm', and look concerned. New guy has explained his concern and now I get it!!

New guy has also explained that if damage, or paralysis is preventing my voice from returning then it is an option to go in on the right side again but slightly further away from my original scar.

The reason for the CT scan and suggestion of going in from the back is that he isn't sure what the mass causing pressure is, and (I think) if it shows as calcification then the back may be the only option. (This bit I'm a bit mixed up about, I don't exactly remember. It may be that if it is calcification, then it would be OK to go for the front again. One or the other, I guess, lol!).

Who would've thought that the issue of my voice would've had such a major part in the decision of the surgery!? totally makes sense when explained but I never gave it a second thought!

I'm just anxious now to get the ball rolling.

Posted By : White Beard - 7/11/2016 12:30 PM
The waiting game is always the hardest part! I think it is easier just to get it done and over with as soon as possible! You know GFM for most of those twenty five years I never noticed about my voice because when it finally came back after three plus months after the surgery my voice was slightly different anyway! The problem I had, that definitely bothered me the most was an abnormal gag reflex that developed after my first fusion! If I moved just right or put stress on my neck I would start gagging and retching! It was very strong and violent, and would go on and on for five or ten minutes or longer! I was still in the military and some of the doctors tried to tell me it was all psychological and all in my head. One doctor thought it was because of my tonsils and he removed them, while on the operating room table and totally out, the gagging and retching started up and they could not get it to stop! That surgeon said that it was definitely not psychological and there was something physically wrong! Ha,

As the years have went by, it has become less and less of a problem but I still have some episodes of it happening even now! But the military doctors never told me anything about my vocal cords being permanently partially paralyzed! I did not find that out till when I had to have that second fusion! And that was many years, after I retired from the service and I was seeing civilian doctors and surgeons! And I was also told that the retching and gagging problem was probably part of the nerve damage affecting my vocal cords!

Anyway I agree with you, I think it is best just to know the facts! Because then you can deal with the problem more logically! I hate doctors that are less than open and honest! I figure that they are working for me, and I deserve to know what they find or what they plan on doing! I hire them! So if they are not honest and forth coming..... then I can fire them! LOL

Anyway please keep us all posted on your progress!

Again Good luck to YOU!

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.

Posted By : GFM - 9/20/2016 4:44 PM
Well, I'm back again!
Ive been feeling pretty low as I was spending all my time chasing appointments. So I basically just recoiled into myself for a while trying to re-evaluate and find some inner strength.

Meanwhile, I have since had bloods done as I was complaining of excessive tiredness and I'm due to go for a liver scan because of some issue there.

My ENT check has confirmed total paralysis at the right hand (operated) side of my throat. My voice is therefore a little dodgy and it tends to disappear if I try to shout. The doctor said that because it has been 6 months post op there would be no likelihood of recovery of the vocal cords that side.

I now just await a phone call from my new consultant as to when and how he intends to proceed with my op.

I'm trying to remain positive as there's no reason why I shouldn't . Last time my surgery was semi emergency so I had no option. The risks with the vocal cords were explained to me as temporary damage, but at no point did I think it was likely to be permanent..

I feel somewhat cheated as I thought I would only have one lot of surgery to recover from and didnt realise I would have any permanent damage and still have to go back for more surgery!

I can still speak though which is a small consolation.

I was at a wedding last weekend and at night when there was music playing and people talking it was a total waste of time for me to even try and be heard. It's little realisation times like this that hit hard as to reality of things.

Anyway, I shall await my further notification and report in on what way things will be happening.

Posted By : White Beard - 9/20/2016 10:01 PM
Hi GFM It is good to hear from you again! I am sorry to hear that your vocal cords on your right side is totally paralyzed, I am sure that makes talking difficult, I know what I experienced and it was extremely difficult, so I really do empathize with you. If your surgeon does like my surgeon did on my second fusion, he went in on my right side again, since my vocal cords on that side were already partially paralyzed, from my first surgery. So even though he wanted to go in on the left side he didn't because he did not want to take the risk of paralyzing my vocal cords on my left side to.

Anyway may I ask you? do you still have some swallowing problems? Or problems with laryngeal spasms? Or is it just with your vocal cords and voice. ( which by the way is more than enough!) Anyway I am sure this has been a really difficult time for you! I know this is allot easier said that done, but try your best to stay strong, and know that we are all here to give you our support!!. Please keep us posted on how you are doing, we really do care!

I wish you well!

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.

Posted By : straydog - 9/21/2016 9:46 AM
Hello GFM, so very sorry to read what you have going on with the voice situation. The waiting is just horrible, try not to stress too much. I know easier said than done. Hopefully you will hear something soon from the surgeon so you can get on the road to recovery. I think it is wonderful that you have confidence in the new surgeon.

Please keep us posted on how you are doing. Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Posted By : GFM - 9/21/2016 1:50 PM
White beard. - I do still have some problems with swallowing but only a sensation as if something gets stuck, or if there is a lump there, and stupidly I feel with my hand and there isn't. My throats is often quite dry too despite drinking fluid most of the day. I was always very aware of drinking enough water but since my op am more conscious to be drinking regularly rather than drinking an amount, but it doesn't seem to make much difference.


My surgeon called today to explain that he was glad he had waited on the extra checks being done as the results from the ct scan indicate the mass is a huge area of leftover bone (?), and the ENT pics shows damage on one side of vocal cords, (which I knew). Therefore he has decided the best way forward is for entry via the back of the neck
He has booked me in for a pre op on 12 october and will discuss a suitable date then.

I'm not entirely sure what he will be doing as he spoke about relieving the pressure of a compacted nerve. He also spoke about drilling and I'm assuming its to remove the bone, but I don't actually recall him saying that the bone will be getting removed despite pressing on my spinal cord. How stupid of me now to pick up that bit correctly!?

I may just give his secretary a call to confirm. My mistake, but it was only on hanging up that I became confused. I think I'm fine whilst listening and then hang up and start imagining things.

Posted By : White Beard - 9/21/2016 4:50 PM
GFM what your describing with swallowing is very similar to what I have, it isn't all the time but sometimes when eating or drinking, it is like the swallowing mechanism stops, and if feels like the food or drink is just stuck in my throat. If I stop eating and just wait a few minutes it passes and the food or drink goes down. But if instead I continue to eat or drink I start choking and it all comes up! So I just have to be careful when eating or drinking.

When I had my C3/4 fusion in November of 2010 they did the posterior approach, ( going through the back of my neck) I had forty seven staples down the center of the back of my neck from roughly the base of my skull to the top of my shoulders, I called it my zipper. I will tell you going through the back is allot more painful and takes allot longer time to heal. For me they ended up putting in rods and pins on both sides fastened to the vertebra to hold it all together. But my neurosurgeon told me in advance that it was going to be a tough surgery to recover from, ( he was definitely right!) but after I was all healed up, I was glad I had it done! But it took many many months and allot of physical therapy before that day came! I guess the best thing I can tell you is prepare yourself for a really rough time, and that way if it isn't that bad you will be Pleasantly surprised! For me that always makes things go a little easier! I try and Prepare myself for the worst, then if it turns out to be not that bad, it is just a big bonus! LOL

Good Luck to YOU GFM!

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.

Posted By : Ammonite - 9/21/2017 11:23 PM
Hi I had an acdf February 2017 and developed both myofascial cervical and thoracic muscle spasms from hell. Ended up in the ER twice within 5 days of being discharged. A combination of muscle relaxer & pain meds control the spasms. 5% idocaine patches, gels, & icy hot & heating pad help. Take your meds prophylactically. do NOT wait until ur in extreme pain before taking ur meds With both of these do NOT drive until u know how it effects you. Some of the best sleep ive ever had. Dont wait until you' re in severe pain b4 medicating;because its harder to control.I've also had steroid injections that help.
Umfortunately, it looks like I may have to deal with that as a side effect. I've tried Gabapentin, unfortunatrly I developed joint pain & swelling all over my body so that had to be discontinued. however it was kind of effective so you might want to look at that as a possibility. With Lyrica I ended up with a 70 lb weight gain years ago. 1/3rd of the weight acdf., because the acdf hardware displaced & restricted the tube. The nice thing it wasn't painful, & i kept well hydrated easiest diet ive ever been on. Puddings, ice cream, apple sauce. I even managed to get a doctor to write a script for chocolate pudding & icecream w/ 60 refills (as a joke). Good Earth sells a Sweet & Spicy tea, Celestial Seasons has a tea for the throat, soda feel good on the throat old or luke warm foods are best: mashd potaoes w/ cheeze, cream soupswasn't hungry at all.
i also developed GERD and that's quite annoying it's to the point where my throat and tongue are really really inflamed swallowing isn't any fun obviously you don't want to lay down immediately eating and be careful about what you're eating drink lots and lots of fluids if you got if yoIu're having problems with their is lidocaine it tastes horrible but it will numb your throat and after about 3 days doesn't taste too bad kind of like glue, remember that experience from kindergarten. One of the other posts mention that you were still very early in your recovery. And that is absolutely true don't assume that these problems aren'At going to go away and keep a positive attitude the best thing I found for my neck after the surgery was a pillow that they gave me at the hospital and unfortunately you're not going to be elevated 6-8 inhes, unless u have an adjustable bed, which GERD asks you eat9 but you have to remember treat the acdf because that's going to cause the muscle spasms and bother you more than the GERD but I love my little pillow and I can't ever imagine going back to the pills that I had before because it's cut out shape just kind of cradles your head and remember at 3 weeks to put it bluntly they basically slashed your throat and bored battery acid down your throat is what it feels like so taking care of your neck during the recovery period is absolutely essential but have a sense of humor about it and lots and lots of questions and stuff like that will probably ended up with the gastroenterologist and the barium swallow test and the modified barium swallow test and the nasal gastric examination of your esophagus that's not too bad and they have yummy green applesauce and graham crackers so if you remember being kindergarten you get a couple bites of those and yeah if you have a barium swallow test they might have a speech therapist involved (don't accept food from srrangers, she laces her food w/ Barium.any food from the nice lady because she has an agenda and the food the pudding is laced with barium so it really doesn't taste very good (just kidding). Above all, keep a sense of humor.

Posted By : Abilene - 9/22/2017 7:23 AM
Hello GFM,
I just wanted to tell you I admire the patience you have shown in waiting so long to get results and plan your treatment. If you had to "recoiled into yourself while trying to re-evaluate and find some inner strength" that must have worked very well for you.

Posterior surgery is a difficult recovery but I have no doubt you are strong enough to handle it, you have proven your strength in this long wait. I hope the surgery will be scheduled soon after that Oct. consult so that you can get started on your recovery!! I'll be watching for updates.
Posterior C3 - C7 laminectomy and fusion 2 rods and 10 screws, local bone graft from surgery site-lamina and other bony tissue 12/17/2013; Hyperthyroidism; Sleep Apnea-update-it's gone after a 25 lb weight loss; Total Knee Replacement 2012 and 2017.
Thankful for my husband of over 40 years

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