teadrinker

I've not been in your situation, but surely you're entitled to at least ask your PCT if you can have a second opinion? I would be just as concerned about having something so major done, so you are right to ask questions of your surgeon and proposed treatment.

Good luck

SillyYak

Funny you should say that. The thought of spinal fusion scared me witless & after two sleepless nights (along with my friend 'damien' the prolapse) I asked my GP about having a 2nd opinion at the National Ortho Hospital near me and she said 'I can't comment on a colleague' as she knows the consultant I saw at my local community hospital. I explained it was just by chance the Ambulance took me there so I'd like another opinion and I wasn't asking for her to comment on a colleague she knew but she just said 'well yes you are entitled to a 2nd opinion from another consultant there'. Which seemed odd to me as they'd still not be that impartial would they?

To add more hassle I've been complaining - whilst trying to heal my back - about an emergency admission the same week I was discharged from my local general hospital for the back problem to another one where I ended up in A&E following 6 hrs of acute gyny pain. A&E were going to admit me but instead said come back (on a stretcher again as I can't walk / sit properly) on Monday for an ultrasound which I did.

It was this hospital that I've been under for nearly 3 yrs for suspected endometriosis and tried a variety of combined pills. Never had I experienced pain like it and I phoned my GP who said call 999 as my back pain med wasn't touching the sudden gyny pain (triggered I think by a Mr Motivator physio that visited me at home and got me to do some abdominal pulls in and buttock squeezes whilst in bed). Which of course with hindsight I should've refused to do so as I was just outta hospital 4 days from the nasty prolapse. Anyhow - I finally saw the gyny consultant this weds whom another professor at the gyny department had referred me for to discuss a possible laparoscopy. Let's just say that he seemed bored and didn't have my notes to hand - despite me being stretchered in to see him (as they messed up me seeing him the week before), obviously I was worried about these journeys getting in the way of healing my back and so have complained to their Ops manager about one of the doctors I saw after my scan when I was then dumped in A&E for 7 hrs and not seen by any gyny specialist.

Long story short - at my Weds apt with the gyny consultant I felt he didn't listen to me - he didn't have my file, didn't take note of my back problem despite my explaining I'd like some non invasive scans i.e. an MRI to assess if I have recto endometriosis as I have ongoing issues there as well. Instead he recommended drugs to put me into an early menopause (in my 30s?!), and said 'I can't do the op tomorrow' (no way look at me Dr I am on a stretcher and can barely walk still).

So I called my GP today and explained how I've been getting no where for year with that team and asked for a 2nd opinion about the gyny stuff as the back op is still potentially a way off and I want to know what caused this sudden problem (and I've bleeding from the bowel after each 'movement' since 1st September & the gyny Dr was not interested in this despite my coeliac gastro saying last year - after a sigmoidoscopy that this problem, which was only occasional before, is a gyny issue not a gastro one). Instead the gyny Drs blame it on Gastro and vice versa and I get no-where.

My GP said 'the problem is our PCT doesn't let us send you onto the hospital you'd like for an opinion' i.e. a site of clinical excellence which my friend has recently been referred to for gyny cancer and discovered that the same hospital I have been at got it all wrong (in terms of her scan & MRI interpretation) luckily she is OK. Yet if my hospital still did major ops she'd have been under the knife without good cause by now. Disturbing. So the upshot is my GP said call me again next week and we'll discuss once I have the gyny consultant's letter and I'm happy to refer you for a 2nd opinion but my hands are tied.

PCTs:

So what I'd love to know is what is this patient choice business? Can I ring the PCT myself and ask to be seen at a hospital I want that is near me and better than the current gyny one? That's my main concern as the pain was so bad despite being on the strong meds for my back and I have no gyny diagnosis and am scared it could come back. Or may not be endometriosis at all but something else.

It's annoying that these 2 issues have arisen together. But at least I know what my back problem is and that physio/ injections etc will be tried first. So any op there is probably at least a month or two away. With the gyny issue I wouldn't trust the consultant I saw to cut a carrot let alone me. And all of his team I've seen over the last year have given me conflicting advice. He even ignored the recent ultrasound which suggested my ovary is attached to a uterine ligament (which my GP agreed with). Being self employed I'm keen to get back to being fit and able but it's so draining dealing with pain and dealing with the 'system'.

Any ideas?

dogbreeder in reply to SillyYak

Hi i have read you story, and it seems to me that one hand does not know what the others up to, and the so call specialist gyny con is so disinterested, you have every reason to complain. I suggest asking your Gp who he/she would reccommend to see, and if the answer is I don't know. Your question should be WHY !! as Gp's it's their job to work not only in conjuntion to PCT's on your behalf. HE/ She can reccommend outside your local consultants and with your previous treatment sernario, you should demand to have the ability to choose.

PCT's have been under major changes over the last two years and it seems they don't no whether the coming or going either, this give's you the upper hand so to speak, if you can find someone to be refered to they will have to comply esspecially if you put in a formal complaint either about the confused consultants, your appalling treatment in hospital, and lack of general knowledge all parties have shown you.

Complaints are taken very seriously as their all worried about their future, so the mere risk of getting a complaint may be enough. The real thing is much better, do not worry about this following you as It can serve you well as it say's don't mess with me, buck up these people. Stop them thinking we are all just slabs of meat or numbers.

In conclusion find yourselve a gyny Consultant that has a good name and get refered, as to your back do not have any type of injection around and esspecailly in your spine or you will end up with more than all this to worry about.

The injections they use are not licensed for use anywhere near your spine and there is very good reasons for that read up on Arachnoiditis.co.uk you will never risk your health with these ever again, I suffer from this Disease and it's agony to read that they are still shoving posions into the spine's so willfully, when they know only to well what can and what will occur. Your's Sue

Good luck, don't forget to ask for appologies from these people, they are only people not doing their job's properly, you would complain if you bins were not collected or some other person working for us was rude or unkind their is no difference honest.

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superannie

Hi if you get this weeks woman,s weekly dated 16th October there is a very interesting article about getting a second opinion. I thought of you as soon as I read it tonight! If you can,t get it, let me know on this site and I will type it out for you, cheers Ann

SillyYak

Hi Superannie - cheers. I'm holed up at my parents so I'll ask them to grab a copy as they usually buy it. Cheers - it's such a mindfield.

I got fed up and called my PCT last week (that was an experience trying to find an direct tel number for them online). Finally got someone via the press office. They're looking into what my local policy is - which will be handy as I've had another of the gyny team and I'd happily start from scratch somewhere else if I need too. It really is confusing - especially as the NHS are being battered with all the political changes at the moment.

Thanks for the post ; )

Lojo1617

Hi I have been in a similiar situation to you. Six year ago had a slipped disc at L4/5 S1. Was mis- diagnosed as having a muscle problem and had Physio for a year until eventually doctor agreed to send me for an Mri. After the results I was referred to a neurosurgeon who also pointed out my Degenerative Discs. I had my disc problem operated on and hoped that that would be the end of my problems. Unfortunately although I had slight pain relief in my left leg I was still in agony so was referred back to the neurosurgeon. He said spinal fusion would be the next step but it isnt to be taken lightly and it is a Massive Op and not always with a good success rate. Desperate I agreed to have it done but before he would agree to perform it I had to have a Discogram done and Blocks to both sides.

Mix up at the hospital and I ended up just having the Blocks and no Discogram. Anyway blocks had no effect on my pain and then after a lot of apologies was sent for the Discogram. This is where they inject something into your spine and if that disc is the cause of your pain you,l be screaming in agony. Fortunately/unfortunately discs 4 and 5 are not the cause of my pain so apart from awful pressure didnt experience the horror I was expecting. It also means fusion wouldnt work for me. Neurosurgeon has said that it could either be that Disc 3 is struggling to take the weight of 4 & 5, ( I am not overweight) could be nerve damage or a combination of both. In a nutshell Im still in a lot of pain ,take a concoction of tramadol, ibuprofen and paracetamol 4 hourly, maximum doses and although I get good days also have days where I cant put my feet on the floor. I was also self employed before this happened I no longer work. My doctor has said that "they are not quite there yet" with back problems. My advice would be to have the discogram and if it proves that 4/5 are the problem Have the op. 6 mth off work is better than a lifetime of agony. I was referred to pain management which personally found to be a load of rubbish. Relaxation techniques do not help proper back complaints. You will know that your bad back is not a bit achey!! like some people think of as a bad back. Good luck anyway and hope this helps a bit.

dogbreeder

Hi I would like to help, I had an steroid injection just for a so called problem with my lower spine, it was susposed to be a therapeutic injection of depo-medrone for a facet joint problem. I thought I was in pain before, but afterwards I was in a completely different level of pain (huge diff). The consultant would not see me for six week (the review) even though I could not move without help, extreme pain turns out I was trying to move bone on bone crushing nerves as i moved. I sort anothers opinion after six weeks, as the previous dr / con (very questionable) saw fit only to recommend pain management, not so much as an x-ray to see the damage he had caused. To cut a long story short the second opinion was I now had a ruptured disc which was not the case before, but as we all do we carry on. There was only one choose I had to have the fusion done, the fragments removed form the front and back of my spine. etc. A huge operation, but I had the best surgeon my husband's company and ourselves could afford. Even so, it's big step, if you can avoid it do. If not then their are a few things you need to know.

When they first touched your back, what injection / epidural did they give you ? as any liquid put into or around your spine could cause this disease & life as you have known it to be changed forever. This is not supposed to scare but to warn you, as the damage may already have been done by sloppy work with needles near your spine. Look up Adhesive Arachnoiditis, article by Dr Sarah Smith can be found on arachnoiditis.co.uk (Support Group ready to help)

You may read this and realise no matter what you do now will not make any difference to your pain, but if you can avoid our pitfalls you may stand a chance. However if you need the fusion opp like i did for basic stability of your spine you have no choose. But if their is a shread of doubt get a second & third opinion never rush in, because if you think your in pain now it's nothing to what may come. Ask your surgeons the questions has the damage already been done? If you have this operation will it increase the risk of you suffering the above ? Can you cope without such drastic surgery ?.

Please don't feel I am trying to scare you, because I have only one reason for writting this and it is so one less life could & should be spared. AArachnoiditis as we call it can be caused by just injecting sterile water into the gaps between the dura of the spinal cord. So any drug with its presevatives i.e (etoline gluicoil ? spelling) Anti-freeze better known as will distroy your nervous system for good. Any surgeon that dismissis this disease is lying to you. Can you Walk, can you function & continoue working as you are ? if not and you need this opp make sure it's the very last time anyone goes near you back. To reduce the chances of what happened with myself and fellow sufferers, afterwards you will get desperate for you health back & so you will try anything & everything they suggest, believe me I have been there and done it & with every new idea they came up with it managed to increase my levels of pain to higher & higher degree until you can take no more, When they susgest pain management programs then you know it's the end. That is the stage most of us got too before finding out the information I have passed on to you today. Please for your own sake read everything, find out if drugs are even lisenced for use in or around the spine, because they are not !!! none are they use at their own descretion, read the same print it will be there as this is not a new disease just very well hidden & not discussed with anyone not least the guipig their using it on.

I wish you the very best of Luck never give up hope but never give in to desperation. Sue X

dogbreeder

You can request a second third etc , reseach the local and not so local and ask your GP to refer you and insist you take your X-rays , CT's & MRI's with you also it they do any more MRI before or after the opp make sure it is a "T4 weighted" and "enhanced with gadolinom dye". this should show any scaring around the area which is how A Arachnoiditis starts even if it show nothing you will have a bench mark MRI for future reference. X sue

Bev1965

Hi

I have had a servical fusion 2 1/2 years ago, it was fine but over the past 6months I do find I am getting pain in my neck and an aching arm again but the meds do help keep it at bay (for now).

Hidden

Hi SillyYak....I have a similar condition to you, but I have been refused any surgery, even disc infusion...

Back in 2010 I got steroid injections done to L4/5, L5/S1...now I found that this procedure was no help to me, on which it has actually made my condition worse.

That's when I asked to get my spine infused, I was told no....too complicated with my condition...yes we all know the risks, but it's a risk am willing to take...

Joe

thenunn

Hi folks,I am off for a week on heavy pain treatment meds on top of my gabapentin cocodomal and know ,sadly in my erarea unless I loose bladder/bowel control or control of limbs,I will not be offered surgery. So its live with the pain and meds for me . It really seems to be a postcode lottery lol

Dblease

Hi, I also was told i have degenerating disc disorder after messing about for 12 months by the doctor saying i had slipped disc ect, I had to have a spinal fusion in September last year, my op was 10 hours long and I am still on morphine and have been for 18 months now I have physiotherapy & hydrotherapy sins my op. when I last went to see my consultant he told me it was looking ok but still very swollen but I am in so much pain still if not more down my leg and in my hip. I have no feeling in my skin down my left leg and the bottom of my foot I take each day as it comes but I have not had a night when I sleep more then 2 hours without waking in pain and I can not turn over myself in bed without some help. I feel like I am an 80 year old woman when I am only 38 years old.

I can not say I would be in the same mess I am in now if I would have not had the fusion or that it's because of the fusion as my back was so bad it was going on for years but all I would say is think very hard and if that's your way to having a normal life again I would take it and have the op, I have been told I will need another fusion in years to come going high up my spine but I will take it as it comes good luck.

razespain in reply to Dblease

Hi although I have not had a fusion I have degenerating spine disease, none operative. I have several permanent trapped nerves and even morphine although helpful not the full answer. I have feeling loss in left leg terrible pain in my leg, backside and lower back. Also terrible electric shock like pain in private bits and up my rectum. After loads of different drugs!!!!!!! At last a drug that helps big big time. Its called Pregabalin talk to your g.p. Keep trying you will find some real help. Cheers Ray.

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caityhasting

So I actually live in the U.S and I'm not sure if you can ask for a second opinion but I have had a spinal fusion surgery on L5 S1 with really amazing results. I didn't have a slipped disc but I broke my back in 2 places and because of a slight case of spinabifeda that I have my spine slipped forward. I was only 13 at the time and terrified of having a spinal surgery. At 15 I couldn't take it anymore and decided to have the surgery and it was honestly the best decision I have ever made. When they opened me up they found that the bones were not only broken but completely detached and floating around in my back and pinching nerves which was something they couldn't see on any of the scans. The surgery was such a success that I tried going back to competitive gymnastics which was a terrible idea and caused me to reject the hardware which they removed when I was 18. I'm now 20 and about to have my 3rd surgery to remove extra bone I have growing in between L4,5 if I wasn't so young I would be having another spinal fusion because of the results I had from the first. There will always be pain in that area even after your surgery but it will just be an ache from all the scar tissue that builds up and it wont be anything near what you are experiencing now. I know the surgery sounds really intimidating but it is only 6-8 weeks of pain compared to a life of it if you don't get it fixed.

UnluckyGirl in reply to caityhasting

What happens to your flexibility after a spinal fusion in the L3-L5 area? I need it and am scared to death

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conrad in reply to UnluckyGirl

Hi there. I had scoliosis at 19 and had rods put in my back. I am 51 now. Have done everything I every wanted to physically. Now at 51 have some issues at L4/L5 and L5/S1. Thirty years of pounding (we're talking kickboxing for 10 years, skiing, golfing, motorcross) and the discs are shot. Had a fusion a year ago at L4/L5 with really good results. Should have done L5/S1 at the same time because now it's become obvious that the disc is shot there also. (the still slight curvature of my spine makes the disc sit cockeyed on L5/S1). Going in for the second fusion in Feb. All, voluntary, at my request. According to my surgeon I have zero mobility in my lower back. However, your body will just take over and compensate for the lack of mobility for sure. At this age, I am still working out 5 times a week, still kickboxing (however no contact), could do a cartwheel if I wanted, can bend over and touch the ground flat handed. Now, admittedly, surgeon is amazed that I am so flexible...but my point is...your life doesn't have to change. Just know that it's all good and you will be able to life normally. I honestly don't notice the lack of mobility. I guess if you asked me to do a back bend that would not be possible (and I used to be a gymnast) becasue of the rods in my back. So my entire spine honestly is "fixed", with no movement. But like I said, I still do everything I want. Good luck.

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caityhasting

Obviously some flexibily is lost but it wasn't terrible for me but my fusion was also in a different spot. I know its scary but having my surgery done was really the best choice I made

missdiannedyas23

I had it did not hurt a bit uncomfortable it did not work I have same problems and a bitmore but no your pain I really do had also a drip in my hand to offer a pain relief it lasts over 2 hours slow drp did not work today had a full body mri now to see good look and everyone's different so could work for you x

Hidden

chasing my GP for months? Please get another doctor. I tried another at my practice and not only did he ask loads of good questions, when I needed tests they came around much faster!

Hidden

" he said the MRI showed I had Degenerative Disc Disease and probably needed spinal fusion" Really? I suggest you look up about this VERY carefully. I hear so many people worse off. They talk to me all the time. If your not in pain yet, it is wise to wait. Please....research!

Manorlady

I have same injury R4 R5 S1 fell 15 months ago had MRI getting worse no one cares have to see spinal units should have been sorted long before covid