I'm new to the forum and would like a little advice.
A little bit of history for me, I have always had back pain for as long as I can remember (my mum says it's because I used to lift the crates in the pub we lived in as a child). The pain was nothing I couldn't handle and kind of got on with it for many years. Around 5 1/2 years ago I knew that it had got worse and I'd been to see my doctor a couple of times about it but nothing worked. I asked him if he would refer me to a back consultant as I have Bupa and he did. I saw Mr Mclaren at Spire Portsmouth and after physio didn't work we decided on a treatment of epidural spinal injections. These worked like a treat for 3 1/2 years but then the pain came back and so I had the injections again. This time I only got relief for 4 months. I went back to Mr M and he referred me to a pain management clinic to see what they could do. Four different pain relief injections including discs and facet joints (the last one included radiofrequency something or other) and I'm no better. Although saying that, I don't now get that terrible searing pain when the back totally locks anymore, just constant pain.
Dr Bayliss (pain management) has referred me to Mr Dare who I saw last wek. He thinks that the best option will be disc replacement to my lower discs (S1/L5 and L5/L4) although he's hoping he can get away with just one. He wants me to have another discography done and a bone density scan to ensure that the disc replacement is viable.
If thats all ok, then he can probably get me in for the surgery by the end of March. Whilst I was hoping not to need surgery it was pretty inevitable as I have exhausted all other options.
It's a bit of a scary time. My quality of life is pretty poor at the moment, unable to walk far, go to the gym, stand for long periods of time etc. We discussed the possible outcomes of the surgery and the feeling from Mr Dare is that I should be much better by June which is 3 months after the possible surgery date.
I want to be realistic on my recovery time and not expect too much too soon. We are going on holiday to Greece in May, should we postpone/cancel the holiday (or the surgery)? It's a relaxing holiday so I won't be doing much but even so...
Any advice very gratefully received.
Michelle
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daisychain007
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I haven't had the surgery you are having, but I did have an emergency laminectomy a few weeks before I was due to go on holiday and as such I can tell you that you need to be declared fit to fly by your consultant. I had to cancel my holiday (although the rest went still) and the insurance would only cover the cost of the flight because the accommodation was still being used.
Also insurance can be an issue following surgery. I had an existing policy but they wouldn't cover me for any problems related to my back so I had to take out additional cover the next time I went away which was limited to things connected to my back and cost >£200 if memory serves. I went in March following surgery in November.
I was very limited with mobility and still in a lot of pain when I did go away but as it was an all-inclusive type thing I just took it easy and had a very relaxing time with my family.
I can't tell you how long your recovery will be but don't be surprised if it takes some time. I am still recovering 18 months after my (second) op but then I couldn't even stand up let alone walk when I had the second op.
Good luck as a holiday can be just what the doctor ordered!
Thanks Ade, my travel insurance won't cover the holiday as it's a pre-existing condition. I'm not sure how different your surgery was to mine. Good to see you have some improvement though. I really think I will need the holiday by the time it gets here, just hope I can enjoy it (and i'm allowed to go!!).
My surgery was to remove some bone from the vertebrae to relieve the pressure on my spinal cord. The holiday I had planned was after op number 1 and then it happened again so it was a good job I didn't go in the end.
You can still get insurance for pre-existing conditions but might need to use a specialist insurer and it costs a lot. For me it was worth it because the prospect of being stuck abroad, unable to walk and possibly not allowed to fly home was not something I was happy to risk. And paying for any medical needs personally (before they would do anything depending where you are) was also potentially hideously expensive.
Add into that the possibility of special arrangements on a plane (such as needing multiple seats as happened to a friend of mine) and an ambulance to get back from London to the midlands and it made the £200 seem like a worthwhile outlay.
The specialist insurers i use are called Columbus direct. Worth getting a quote IMHO. Bear in mind that you need cover in place from when you book it (or as soon as possible) in case you need to cancel (if it would cover cancellation costs that is).
I can recommend lots of physical therapy following surgery as strengthening core muscles and doing lots of stretches etc has been a major factor in my own recovery and helps to support the spine (which in my case has been weakened by having 7 slipped discs and 2 bits of bone missing).
I recently had pretty much what you're looking at. I had a decompression fusion with disc replacement at L5-S1 with caging. My surgery was Jan 30 - so I'm a little over 3 weeks out. I feel so much better than I did prior to. I wasn't able to walk more than a few minutes at a time, stairs were nearly impossible & staying in one position (laying, sitting, standing) was not comfortable for more than about 5-10 minutes at the most. I have no more leg pain (and they were both excruciating) at all. That was instant. I woke up from surgery & it was gone.
My back itself, is also better already, though I am still very limited in what I may do. I was terrified of surgery, but had tried everything else. I am so happy I did, yes already! Seriously though, the first few days were hell. No joke. But, you get through because you have to. By day 4, I was doing much better! Left the hospital on day 6 to go home.
I doubt I'd be ready to go on a holiday in May. I am so scared when I'm in public, that someone may bump me, that I am very slow and extremely cautious. I hold my purse out behind me and cover my back with my hand. Lol I'm sure I look crazy! Talk to your surgeon - they are the ones who deal with this most often. They know more than we do. 😊
Best wishes with everything & keep us posted with your decision! Take care.
Your surgery sounds a little more complicated than mine (hopefully) but I am so pleased that you think its worthwhile. I have no doubt that I'll feel better for having it done (some days you can't imagine feeling worse!) but it's always the fear of the great unknown. Discography booked for the 8th March so we should know quite soon what he's going to do.
Just a suggestion but a vital one in the Opinions of All who now suffer from "Adhesive Arachnoiditis" due to Failed Back Surgeries and Missed Epidural Steroid Injections. A MRI with Contrast Gadolinium will "see" any or all Nerve Root Damage inside your Spinal Cord. All L1-5 and S1-4 should be seen including the Thecal Sac.
In every person who suffers from Adhesive Arachnoiditis it's the most fought for MRI that both Doctors and Surgeons do not want to do or at the very least aten reluctant because they probably already know what the "root" of the problem is.
I am not a Pessimistic Person, or being pessimistic but being honest about what our "Doctors" can not.
2 weeks later now, and I'm no longer concerned with outings. I am able to do more, last longer while out & about and yesterday I even sat in a hard chair at the doctor's office (for my kid, not me) for over a half an hour!! I haven't been able to last over 5 mins in years. So that's huge!
Best wishes for tomorrow with your discography! Keep us posted 😊
Blooming awful! I had a discogram last year when I was heavily sedated but still able to speak (without knowing it). When I came too I was surprised to know that I had been 'very vocal'. This time they gave me a small dose of diazepam to make it feel like I've had a couple of glasses of wine then went for it. Oh my gosh it hurt like hell (well she stuck needles in my discs, what did I expect?!!). The poor nurse who was looking after me almost had crushed fingers! But the good news is that 2 of the 3 lower discs are causing the biggest problems, the third is being a pain but not as much as the other two. She's prescribed me some strong painkillers with codeine in them even though I said I was intollerent to codeine. She said that a lot of people are but she's not heard of anyone being poorly on these so fingers crossed. So, onward to Monday when I have my follow-up with Mr Dare.
Dihydrocodeine. Made me feel dizzy and totally spaced out the first time I took one but they've been fine since then. Does the job though, didn't leave the sofa all day Thursday other than to make a cuppa and visit the ladies!
So I saw the consultant last night and he wants to replace all 3 discs. Surgery will be either next Wednesday or in a couple of weeks time. This s**t just got real!
That will come so quickly! It's only a few weeks away. I'm happy you have your date set now. Makes planning easier.
Make up some extra dinners to freeze & be sure to stock up on things you may need. It will be a bit before you are ablw to run to a store again. Ask for help from those closest to you, as well.
Best thing I had was what I call pinchers. One end you hold & squeeze, the other has 2 parts which go together to pick things up. Like a sock, toy, blanket, etc. I used mine daily! One of my kids broke it last week, but it was great while it lasted, lol!
If you postone the operation will you be able to properly enjoy the holiday in constant pain and unable to walk far? What are the penalties for cancelling the holiday now as opposed to just before you travel, if that were necessary? You have no real way of knowing how your body will recover and in what time scale so I guess it's a gamble. Greece will still be there later in the year. Hope the surgery helps with the pain.
All questions we have asked ourselves! No I don't think I would enjoy the holiday too much. I'd lose all the money spent as my travel insurance policy does not cover pre-existing conditions.
I'll just take each day at a time and hope that it's ultimately worth it!
It will require research by you and depending on how supportive a Husband you have - for the time being - if you both research you can have not only one but probably a few " Well Informed Disscutions with any Medical Professional. Don't be afraid to challenge them. Especially the all so "confident" ones. Every Surgery- they get paid Huge Bucks. I'm not saying these well Educated Professionals don't deserve what they make. They do. It
in reply to
Sorry, Daisychain007....continuing here. I'm afraid if something has al
in reply to
.....I need a serious cup of coffee! It's on the go now!
If something has already happened due to those "at the time" wonderful Epidurals, you need/must learn everything and anything about the Dangers of these "off lable" uses of Epidurals and the Steroids used in them.
I don'tknow what to say about the fact the Epidural Steroid Injections "just wore off" but your symptoms are worse if I understood correctly? All my Epidurals wore off too, hence going back for more of the "feel like dancing now" with much less lower back and sciatica nerve pain. If yours were like mine, the Epidurals are usually done in "sets of three, two weeks apart" - if the "three" are needed, sometimes it's only two Epidurals. They can last anywhere from 2-6 months varying in dosage, time and the individual patient.
An Epidural given for Childbirth can show up years later with "nerve clumping" inside the Spinal Cord Nerves. It's serious Intractable Pain because it's alwaya progressive but could possibly at times lay Dormant for years. The Contrast Dyes that were used then ate no longer used today.
Do you know if Depo-medrol was used in your Epidurals. Your pharmacist would know if you haven't any receipt. It only takes a piece of fine paper for that Needle to just go a little too far -you'd need a magnified view of how little. You won't be told this Michelle. You won't. It will be hidden as a Medical Errors are. You can research about it which is very easy or trust Dr.Dare. It's totally up to you. They're all swell Doctors until there has been a mistake. To Error is Human and Doctors of every variety are Human.
I agree with hello poster It is good to be educated about adhesive arachnoiditis if you are considering an elective non emergency spinal surgery - primarily for pain. It is a very real risk which there sadly does not seem to be much transperancy around in the medical community.
Here are a couple of links that have been of interest to me. These sites have been useful to me in considering pain management generally too.
If you have good mobility- walking, bowel and bladder function at this point, for some these are things to be celebrated and not taken for granted. Surgery will not neccesarily get rid of pain. For some people surgery sounds like the best thing they did for others it has been a sentance of intractable pain through arachnoiditis.
Best of luck with your planning & decision making & the surgery if that is what you decide. I would not be booking anything that involves sitting up on a plane for a couple of months.
Sounds as though you may have Adhesive Arachnoiditis. I pray so hard and long that.these Steroid Epidural Injections into our Spines get banned and banned for good around the Globe. I also pray that people not rush into Back Surgeries as these two things are the cause that leaves Patients with the Progressive Desease of Life Long Intractable Nerve Pain that is beyond ones imagination if one does not experience this horrific neuropathic pain no one can even begin to comprehend the Pain. It worsens monthly tothe point where one litteraly thinks that they will lose their mind. The reality of this condition of Adhesive Arachnoiditis is NIT THAT IT IS RARE but that it is usually always caused by the hands that are supposed to heal. We seem to have an abundance of Doctors willing to go ahead with Procedures (because it's more important to line their pockets with lots of greedy money while knowing what risks they take every time. Not being cognitive of the concequences of Failed Epidurals and Failed Back Surgeries all gun-ho, away they go. We are then left at the mercy of a few rare Doctors who then will admit what has happened and why we ate in so much Intractable Pain that many have concidered or contemplated committing Suicide because the suffering is ignored for years. Completely ignored. The cowardly Doctors will treat the patient as if it is something that they did to cause such great pain or treat the Patient in an even more undignified manner which is that the pain is all up in ones head. People research Adhesive Arachnoiditis. There is an abundance of Medical Material available. Do not let any Doctor accuse you of using "Dr.Google. Ever. We have minds and are quite capable of learning just what happened to us through Medical Errors. I'm asking that everyone not just go with the flow and believe Dr. Whomever is going to make things all better after shoving needles ( only takes one). And promises a little Back Surgery will fix you up.and you'll be back to your regular routine in no time. The fact is Failed Back Surgeries along with Thousands of "missed" Epidural Steroid Injections have ruined people's lives for ever. We are left completely disabled for the rest of our lives. It's appalling the number of Patients that ate left to suffer because the Medical Community will not admit Error.
Always be deligent and remember, that nice smiling face in front of you is only thinking of self monetary gain. When your turn is finished their off to the "next". Then they sleep at night while their Patients are left to live in Shear Hipeless Hell that one could never imagine to be so horrendous.
May we have our prayers answered by a "Higher Power greater than" the "Power of Ignorance" in which our Pain Management Physicians and Surgeons pocess. It's a Business just like everything else with only Profit in mind. They are not left to see you suffer. They do not have the courage to look you in the eye. They will stay upon their pedistals with no cognition what so ever. Only when Patients stop signing papers that have the pen there alond side, start refusing to sign before one gives you 100% and nothing less of "Complete Informed Consent". Take a month if need be. Research surrounding Nerves. Please don't chance Permanent Disability because any Doctor is so overconfident that once they are done you will be as good as new. This is just not true. After the fact - it's ALL.too late.
Thanks, hello hello yes I do suspect I have it as my nerves have been referred to as branching - sounds alot like 'bundled' but it is not so easy to get confirmed. For me back surgery was not elective in that it was an emergency, so it is much easier to see the glass half full after getting that surgery. I still have the daily nerve pain and I hear your words of struggle and do understand the feelings that come with running a daily marathon in your body and with the nerves.
It sounds like you have had really a rough time with Arachnoiditis yourself. I feel myself this forum is a safe place to vent and let it out too at times. I am so sorry to hear if it was caused for you in medical interventions, maybe without proper consents?
I agree wholeheartedly that everybody should fully research this not so 'rare' disease before accepting spinal needles, epidurals and any elective spinal surgeries. I am very wary of any of these in future now I have awareness of the disease and understand the nature of it contra indicates any further disturbances.
I hope the original poster can take this in consideration on their health journey. It is a very personal and huge life decision to decide to have surgery or not to have it. I understand if you leave some compressions too long can be dangerous too and make any surgery moot. Yes it is very true it must be your own informed decision of what to do and when, as it is us that lives with the consequences of action or inaction of docs. Take care
Just a quick update to say I am now 9 weeks post 3 level ADR and feel great! All back pain has gone and the sciatica I got around a week after surgery lasted for around 5 weeks but tailed off. Just left with weaker legs than before (due to the nerves being messed around with) but my physio is going to show me exercises I can do in the gym to gain strength again.
My biggest gripe is that my scar gets scratched a lot by my clothes (I can't wear loose fitting clothes all the time) but that's a small price to pay!
Hi, I am 9 weeks post 2 level adr and was going well until a walk outside tired my hips. This was followed by a pinch which was followed by left leg restlessness. How are you going now? As I'm a bit freaked out :/
Hi, I'm going to see my consultant tomorrow as I've been really struggling for the past 2 weeks. I have pain in my back in exactly the same place as before the op, granted not as bad, but it's affecting my walking (I was walking 5km everyday up to 2 weeks ago, now I can barely manage 3km and its a much slower pace) and I'm having to take pain killers again. I'm hoping that it's to be expected and that I haven't done anything more serious.
Ah ok, I know there were no screws, the discs had a jagged edge which once in place wouldn't move. I'm sure it's fine but it's strange that I can go a good 9 weeks pain free and then bam, it's back again!
My consultant has assured me that the issue has nothing to do with my discs. Prior to the surgery I had treatment on my facet joints and that's what he thinks is the problem. The facet joints are still causing me an issue and he thinks he may have a solution. I've had nerve ablation in the past but they can grow back causing the pain. There is a new procedure where they can burn away the nerve for good! More physio and lots of painkillers (doctors orders) and then I'm back to see him anyway in October (if not before).
Just wondering how you are going ? I'm 14 weeks post surgery and still can get weird feelings. Sometimes it feels like my legs are going to give way, then the feeling is gone. Long recovery gets tiring :/
Hi, not great! I think the discs have settled down well and the nerve damage in my leg is definitely easing but the pain from the facet joints takes me back to pre-surgery days. I'm seeing my consultant tomorrow and I'm hoping he's going to start the process of getting rid of the nerves in my facet joints for good so I don't have to spend much longer like this. At the moment, it feels like the disc replacements haven't changed anything.
Hi, quick update. Today I had injections into 6 of my facet joints to see if it gives me any relief from the pain. If it does, Mr Dare is going to carry out the new surgery where he totally kills the nerves on all 3 levels.
Hi All, I had the surgery to burn the nerves in so of my facet joints. Unfortunately, this didn't work. We then tried working through the pain and excerising to see if that helped and it did for around a month but then the pain got unbearable to I had to stop.
I went to my consultant. After a recent MRI scan he suggested we try diagnostic injections into the L5/L6 facet joint as that one looked the most worn. I had this done in April and I got zero relief from the pain. I went back to see him last week for the follow-up. He was surprised there had been no pain relief and said we should try L6/S1 next. My issue is that Bupa will only pay for one more diagnostic injection. if the next one doesn't work they will need a letter from my consultant for another one and then they would consider it. So when I mentioned this to my consultant he suggested we go down the Spect Scan route which may (or may not) highlight the bones which are hurting the most. I have been referred to my local hospital (Southampton General) but have to wait in line along with the NHS patients as well so I've not idea how long I will have to wait. So I am trying to see how long it will be before I can get the next facet joint injections and keep my fingers crossed. If he finds the facet joint that's causing the problem he said he can fuse it (nice!).
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