I've got bone spurs or something called "disc osteophyte complex" at c5-c6 causing foraminal stenosis
I'm 39 and got young kids and a dog. For the past 14 months I've been in chronic pain and life is very hard. The pain is unpleasant, always burning in my neck, stiffness and my left arm is weak so cervical radiculopathy as well. The problem is all on the left side despite a bilateral formation.
Mentally I'm very low and struggling. An active life is disappearing.
I'm just posting out of desperation really, if there is anyone out there who can suggest anything that might help or has worked for them......
Thank you in advance,
Matthew
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yorkshirelad1
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I’ve had some serious problems with L4/5 lumber spine with Stenosis.
After some 12 years plus I finally had an operation by a Neurosurgeon 10 days ago.
It was called a Lumber Laminectomy for Decompression for Spinal Stenosis.
Strangely an overnight stay which honestly needed to be longer due to the severity of the pain.
I also suffer from Diabetic Neuropathy which causes severe pains to my legs from the knees down into my ankles and sadly my toes which are so painful I feel I could cut them off at times.
Today is day 10 so tonight I’m going to have the 25 staples removed. I have a wheelchair and my son will take me to the hospital so I’ll let you know how I get on tomorrow.
But the last 10 days I have suffered with more pain than I ever imagined.
Intense pain in my lower spine with pain in my right hip down into my groin plus sharp pains in my shins and feet.
Getting in and out of bed although rolling as usual is so painful and made worse when standing.
I have an enlarged prostate so need the loo several times a night. 4 to 5 times.
So 10 days of hell which I’m hoping will start to improve soon.
Sorry to hear your suffering I don't normally reply to messages on here but what you have is a mirror image of my diagnosis but in C5/6 and C6/7, bone spurs, Disc disease, Bilateral Stenosis ect. So firstly a good relationship with your doctor is essential, I had an MRI scan and was basically told by the specialist that this was normal "wear and tear" but the pain and burning sensations I get in my neck and upper back does not feel normal. I take the usual medications. Anti inflammatory, sometimes over the counter but if the pain is really bad a course of Naproxen, I am also prescribed codeine but limit this to when I have very bad pain, I sometimes buy an drug called Solpadeine max,can only be bought from a chemist behind the counter, this also helps. Some people do not like taking medications but I want a life so I am up for anything. I also take CBD oil from Holland and Barrett.
One of the main things that has helped me though is the physio, I am also a busy full time worker but the stretches that you can do are a great way to keep your muscles from becoming stiff. I have a physio at my GP Surgery but I have joined Verses Arthritis, this charity is a god send for positivity and not all doom and gloom.
I also have a tens machine that I got from Amazon (sends electrical pulses to the nerves to Distract from the pain), I have a heated shoulder blanket , this is really, really helpful. I also use a cream called capsicum or any anti inflammatary cream can help.
I do hope that you can get some relief from your pain, I follow most of the things above and I am now managing to keep my pain under control. I have good days and bloody bad days but after four years I feel a little more positive
Hi lee, thank you so much for taking the time to reply. What you wrote really helps and give me some new ideas. How do you take the cbd oil? Orally? and what dose? I'm on mirtzapine for anxiety already so may not be able to do this. Will look into tens too as several people mentioned it but have always been weary as wasn't sure how to use it.
What is the outlook for people like us though? Will the condition just get worse over time or can it be managed long term? Surgery seems full of horror stories but the pain is wearing me down now after this long. What physio exercises worked the best for you? My specialist only gave me one nerve flossing exercise and that is all. Online I see a lot of physio focusing on chin tuck type moves. Any guidance would be great if you have it. Thank you again
Oh yea, and is there anything we should really avoid? I noticed any sport looking up or reaching seems out of the question now but I do some light weights in the gym when I feel ok but want to avoid anything that will make things worse obviously. Thanks
Hi, I take the Cannaray CBD oil drops from Holland and Barret, they can be quite expensive but I get them on line as I have an account with them so the last lot I got was buy two get one free, I get the strongest one at 1200 mg per drop (comes with a pippet dropper) I originally tried the normal flavour but that tastes horrible so I now get the peppermint flavour, five drops morning and evening under your tongue as apparently that gets into your body quicker, keep it there for a minute, you can also get CBD massage oils and creams which could work for people that can not take it orally.
My physio also advised to do the chin tucks, head tilts, head turns but also to try and tense the neck muscles when doing these exercises to build up muscle to hold my head up to take the strain off my spine, which kind of made sense to me, I also do light hand weights, again to build up muscle in my shoulders and back, I was advised to avoid sit ups and press up, anything that strains the neck.
I would also try to get a referral to a pain clinic as other people suggest, I find sometimes my mind is just totally focused on my pain and worry about the future and though I am completely open to any medical intervention and quite willing to take any medication offered I do believe the more stress, anxiety and worry you have contributes to the amount of pain you get so I combine drug therapy with natural therapy like the tens machine, CBD and heat and talking to people that are in the same position as you are.
On the Verses Arthritis website there are quite a few positive videos from people on how they cope and a few videos on what exercises to do so that may be worth a look. As for surgery, try not to look at the horror stories, statistics show that there are way more success stories out there,
hope you find this site a help and keep us up to date on how you are getting on xx
Thank you again, your messages have been most helpful 🙏🌟
Hi Matthew,
I’m sorry you are suffering both mentally and physically from the pain associated with the problems in your cervical spine.
Whilst I don’t have all the answers I sincerely hope that knowing you are not alone with how you are feeling is helpful emotionally and mentally.
In 2010 I underwent major surgery on my cervical spine so I can really identify with your situation and how you are feeling. I was struggling so much with the pain and an MRI scan showed cervical myelopathy at C4/5, 5/6 and 6/7 and signal loss within my spinal cord. The neuro surgeon told me that without immediate surgical intervention I would be paraplegic within weeks. I was so shocked, I told him that I needed to think about it .. crazy, I know, but it was a lot to get my head around.
I had the reconstructive surgery, the discs at all three levels removed and replaced with cages and artificial bone and spinal cord decompression. I’m not sure why I thought bone spurs wouldn’t grow on artificial bone, but they have and most prominently at C6. I’m under the neuro surgery team in Oxford but unless my spinal cord becomes compromised I won’t undergo surgery again.
What I do know is that many people have osteophyte bone spurs, some are lucky and never know because they don’t cause a problem. Have you considered asking your GP to refer you to your local pain clinic? If not, I would highly recommend doing so, I’ve found pain clinic invaluable, they are so clued up on our kind of pain, it’s not just about medication, they offer advice on coping mechanisms and emotional/mental support.
I have foraminal stenosis, though not formally diagnosed in terms of the issues I have. I have narrowing of the column in C4, as well as osteophytes in T4 (Fused twice since 2012), which were both diagnosed after a RTA in 2012. I've also been diagnosed with CRPS because of this. I'm actually on the path to 'paralysis' according to my spinal injury specialist, due to the nature of the issues in both these areas and as you probably already know from your own experience, operations are out of the question unless 'emergency' as operations on narrowing are high in terms of potential paralysation.
These are conditions that are not easy to live with, the pain, numbness, aches and shocks do take their toll on you mentally, but how you work with your pain, can help you manage the toll it takes mentally and so ease some of that suffering.
It got worse for me, as I found out in 2017, I have carpal tunnel in both my wrists, had surgery on my right wrist, which eased some symptoms, but has become steadily worse with others, including the aches and so I won't have my left wrist done.
To work with some of the mental pain I suffer with, I've gone back into education and I've turned that mental anguish towards a skill, that if I do become paralysed, I will still be able to feel like an active part of my families life.
With pain I've found various things have helped, mostly with cannabis oils and natural inflammation treatments, as well as some sprays to help. My neck and shoulders, I use both Deep Heat and Cooling Freeze, to help ease out the tightness in muscles, as this is where a lot of the pain comes from originally, my neck twigs the nerve, which then effects the muscles in my neck and lower back.
I'm sure you've already noticed the 'clicking' getting worse, but no matter how much the pain is from movement, you need to push through the pain sometimes just to ease it out.
Stretches in the arms, legs and neck, try and stiffen the muscles when doing so, as it pushes you to stretch harder and in most cases for me, it's all that is needed to stretch, crack and release.
Do a lot of research, learn the various techniques and don't just look at your condition from a single perspective of diagnosis, as other techniques for things such as CRPS, CBT, DBT and other therapies can help with both the psychical and mental health.
Above all though, stay positive and just look at it as another one of life's hurdles we have to overcome, remember you learned to walk at a young age, you can always do it again.
your positivity in terms of your situation is admirable, I hope I can mimic you in that way. Right now it's deeply challenging. Thanks for the suggestions
I’m sorry to hear that you are suffering, I’ve spent nearly the last 20 years of my life dealing with cervical & lumbar spinal injuries. My children were 4 and 10 when I was injured and neither remembers their Mum from before.
Mine began with a road traffic collision, hit from the rear causing a disc prolapse at C5/6, pain clinic techniques did not work, so 2 years later I had my first ACDF.
I was retired from work at 37 years of age following 3 years of trying to get better enough to feel human again.
I endure severe chronic pain from the top of my head to my upper back because of C5/6 radiculopathy, & Cervicogenic headaches. Other osteophytes grew and many years later caused a disc prolapse at C6/7. I tried further pain clinic treatments and only RADIOFREQUENCY ABLATION helped. It delayed my second ACDF by 5/6 years, although I did (and do) endure huge amounts of breakthrough pain.
I also have Carpal Tunnel in both hands, of which I had surgery in my dominant left hand but the radiculopathy from both damaged nerves cause me significant levels of pain.
Unfortunately, only a few months after the ACDF at C6/7, an osteophyte grew compressing the nerve again & the bilateral pain has shifted from being worse in my right shoulder/bicep to my left with the C5/6 radiculopathy as well affecting the nerve paths bilaterally but now being worse down my left arm and hand. Both hands are severely affected & I drop things regularly & have lost so much dexterity.
I believe there are developments at C7/8 as my left elbow and upper arm including the back of my left hand is terribly painful.
I had Radiofrequency again for the pain, all cervical levels bilaterally & it helped for nearly 2 years but has now worn off. The NHS are going to treat me with this procedure AFTER I’ve had it for my lumbar spine. I had all my 4 ablations privately because of long waiting lists in the NHS, it doesn’t seem as bad now.
Your neck pain/ muscle spasms are always exacerbated due to the heavy weight of your head.
TRY physio to strengthen the muscles in your neck & gain advice over the weakness in your arm. IF it was me, I’d be going back to my GP to have a further MRI (if your last one was more than 6 months old) to see how the disc/osteophyte has progressed & possibly further impacted on your C5/6 nerve. If that report comes back advising seeing a surgeon as there is progression with the disc/osteophyte then I’d consider seeing a neurosurgeon for his/her opinion. .
I have weakness in my left arm and a loss of muscle in my forearm, bicep & pectoral muscles but I’ve had discectomies & fusion and have been told by my neurosurgeon that it is a progression of my condition.
Now my lumbar spine was affected by two rare and serious conditions, impending Cauda Equina & spondylolisthesis (forward slipping of vertebrae) involving two of them. I had emergency surgery to strengthen, realign my spine and release the nerves that were being compressed. I have been left with many symptoms, some are debilitating and some are further life changing, including restrictive problems with my mobility.
Anyway, it’s necks were taking about here.
Try everything you can do to help with pain, other symptoms & your overall health, physical & psychological.
Mindfulness, meditation, walking, yoga, Tens machine, heat pad, cold roll on or spray, warm baths, massage gun.
Ask for a referral to a pain clinic and speak to your GP further about any potential changes in your cervical spine. You could keep a pain diary to recall symptoms, where in your body, what type, duration & when. You could ask for further medication to help eg Baclofen for muscle spasms or Amitriptyline to help you sleep & for pain relief (not everyone can tolerate the groggy feeling that you have in a morning). Physio is a good interim measure too.
thank you for your kind words and advice. You've dealt with an awful lot and I can only wish some things improve where possible for your condition, best wishes
Isn't it funny, how you find from an RTA that your overall nerves are 'FUBARD' and many issues come with it afterwards. I've found that many of the issues relating to my arms, is actually the carpal tunnel causing it.
If you don't mind me asking, how do you cope with the constant cracking when you move, as I've found it actually causes more pain?
My neck was damaged prior to being diagnosed with carpal tunnel, so the radiculopathy was detected on NCS first, years after the first MRI scans. I was diagnosed with Raynaud’s Primary a few years later, both my feet are more severe than both my hands are.
The only joints that crack are my left knee, it needs further surgery, a tibial tubule osteotomy, (my right knee has had a TKR & patella) and my left shoulder which clicks & sticks too.
It was yes, I was hit in 2012 on M18 (UK), front and back. MRI found I have osteophytes on the T4 vertebrate and narrowing of the C4 (Which when I sometimes twist my head, can catch and cause nauseating pain). Migraines are common place, sleep deprivation can be the worse at times though.
Went in to spinal injuries unit in Sheffield, as I was having numbness in my right hand, so went in for nerve testing and was to find I have server carpal in my right wrist and signs of carpal in my left. I can still function with the right wrist, but the surgery has actually made things worse, as I fractured the wrist when I was 16, 3 core fractures and 2 hairline, my wrist is twisted.
I also found out I have full right side weakness, so from top to bottom. I actually get clicks everywhere, neck, back, shoulders, legs, knees. If it can crack, it cracks. It's why I hate UK weather, as it sounds like I'm breaking in winter.
I have noticed numbness in my right foot, but it's not been enough to alert the specialists into doing anything, they've literally told me I'm going to get worse, before they can make some of it better.
Have you had any treatments for your migraines? Are they Cervicogenic headaches? If so, I have Radiofrequency ablation for those too, I hate the cold weather for its effect on the spine, all the symptoms & my other worn & worn out joints.
How do you deal with your numbness, you say medics’ “aren’t alerted enough to doing anything about it” ?
My right lower leg & both feet are numb from my impending cauda equina, my mobility is impacted by that of course & other painful symptoms from damaged lumbar nerves, I’m just waiting for radiofrequency bilaterally at L3/4 & L4/5.
I was originally under 'Spinal Injuries' unit at the NG in Sheffield, might have to get referred back, as my Dr's are bloody useless.
I've tried many, many times to get the headaches and migraines sorted, but always end up being told by Dr to take over counter medications, I've actually stopped going to see Dr now, as it's just a nightmare.
When I was under unit at Sheffield, the specialist pretty much laid out what could happen because of the injuries, numbness in feet is one of those degenerative conditions, I have to watch for it going past my ankle's, at which point I have to go in for another MRI (I've had three since 2012) and then be assessed.
Nothing is monitored, it's constant 'physio' referrals all the time, I can't even get them to take the 'sciatica' serious either, which is all on the right side.
It’s hard when only being monitored by physios or if you can’t get any assistance from your GP. I’ve met some physios who have tried to cure not just my spinal injuries when I’ve needed numerous surgeries but also my knees when I’ve had a congenital deformity in both, having had 9 knee ops so far, 2 more to go.
One option for seeing a neurosurgeon & im sure you’ll be aware of to pay privately, self pay not insurance. You don’t always need a referral - worth a try if you can’t get anywhere with primary care, just need the prerequisite up to 6 month old MRI scan.
I have yet to meet a physio who can deal with my complex case, fingers crossed that you’ll find one.
nortriptyline has been fine for me I’m only on three 10mg a day and it takes burning away in my neck and back yet my wife who has chronic pain syndrome takes 8 of them a day every one is different but we find it works well with no side affects and it manages the pain and burning nerve damage well.
I broke my back in 2020, but in 2022, major pain in back mainly on my right side basically shut me down. I also had a pinched nerve in my neck at c4-c5. Last month, I had surgery to remove c4, a mesh put in and a bone fusion. Thank God it worked. All the pain in my back is gone. My back is also fused from t5-t8.
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