I have been living in extreme agony the likes of I cannot articulate, in my left buttock, groin and leg. The hernia at L4 & L5 is pressing upon the nerves and is causing me to not even be able to stand for longer that a minute and I get problems going up and down stairs and so much more. I have been swallowing painkillers and muscle relaxants like sweets . Crohn's, GPA, disc degeneration and herniated discs pressing upon the main nerves into my left lower side
I was told I'd have surgery but when I went for pre op assessment the anaesthetist said he would not be prepared to do the surgery due to the vasculitis. I am at my wits end as they habe had me travelling to the private Circle hospital in Bath.
At my last consultation they anaesthetist said he would not be prepared to take the risk but the surgeon came in and said he'd arrange a new MRI on Jan 5th and if the hernias are the same or worse then he would operate.
This has now been all mixed up through lack of communication between rheumatology and surgeon. The rheumatology department want to start cyclophosphamide ASAP but I habe asked them to wait as the pain I am in is so bad that I have considered ending myself. My quality of life is so poor that it's just driving me down and it's a never ending spiral of me taking more pills to numb myself jjsy to be able to get by. I really habe never ever been this low and don't know what I can even do. No one seems to be talking to the others involved.
I got a secretary from the private hospital call today and say that my GP should habe had a letter informing him that I won't have surgery there and that I need re referring to my local hospital. I honestly can't take anymore of this. I can't even properly explain the pain. I will have a go. My buttock, groin and hip feel red hot pins and needles always plus the hip feels like I am being hit with an hammer persistently. My hamstring feels like,it's being pulled through my foot and it's twisted my left foot inwards. I then have spasms that have me yelping like a dog and I am basically housebound.
I am booked to habe the new MRI at this hospital Jan 5th but why bother if they will not operate
Also, I've delayed cyclophosphamide because the leg pain is the biggest thing in my life right now I wish I'd never mentioned the damned vasculitis
I am asking for ANY constructive advice I really am at my wits end guys when your quality of life means that even answering the door puts me into spasms of agony and waves of evenly pain then I don't know what I can do
It doesn't help that neither department is communicating with the other
If anyone can help then please do I am sorry but I can't take much more chin up and carry on just aren't doing it and although well intentioned, they are platitudes we ALL use at times, I know I have
I can't see myself being able to carry on with such pain levels for much longer I really am done if I habe to be re referred then it will mean going through the entire process again and probably 4-6 months of more agony and me turning into a hopeless opioids and benzodiazepine addict as they are the only thing that keep me here
So sorry for the long post but I am desperate
Jools
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Jools52
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It is possible the private hospital anaesthetist won't do it because they don't have ICU beds on site, many private hospitals don't and rely on the NHS to cover their backs. IF it can be done, the surgeon may have a post at the NHS and be able to do it there with the appropriate back-up.
Take a copy of this post to your GP (or get it delivered if you aren't up to it) and cc it to the surgeon - and emphasise the mental aspects of the unremitting pain. They do tend to wake up a bit if they think a patient might drive off a handy cliff and they may make it an emergency rather than a re-referral. Having the MRI done at the private hospital will mean you have no waiting time at the NHS, providing you have a copy.
The anaesthetist said they weren't equipped to deal with someone with the complications of vasculitis & normally the risks are around 5% but the vasculitis make it 50/50. The surgeon does work at my local NHS hospital so why I am being sent to the private place on 5th Jan is beyond me.
I will now try the official complaint. I've been to over 50 hospital appointments this year and prodded and tested. Obviously the rheumatology department want me to start the cyclophosphamide asap but they don't understand how this left sided pain is draining me of life force. I've broken and sobbed like a child over this and I don't cry easily. It's broken me on more than one occasion and the thought of this for much longer just fills me with fear, dread and not wanting to wake up.
Everything is just fine....., until I wake up. I now can't even do many basic tasks and it's extremely emasculation.
You were sent to the private place because the waiting lists are shorter by the NHS purchasing services fro them - it is part of the back door privatisation of the NHS. But the people who choose where to send someone are not aware of the limitations of the private sector for the complex patient - who will suffer when the NHS is privatised.
Rheumatology know there is no point you coming to an appointment but unless they delve into the central booking system all that sees is that you weren't there and sends out the standard letter. It wasn't like that in the old days - and they talked to one another!
PALS is probably the place to start - your GP doesn't have the clout.
Jules, you need to write an official letter of complaint about the delays, lack of information, lack of co ordination of care and lack of multi disciplinary working.
Your Rheumy, surgeon and anaesthetist need to get together to discuss your case. I know your GP is good, have they tried to co ordinate things for you?
My GP is pretty angry that the rheumatology department and spinal surgeon seem unable or unwilling to just talk to each other. I've had rheumatology tell me not to come to an appointment as bloods would not be in yet from the London then I get a letter saying I never turned up for the appointment. It really has been the most frustrating and upsetting year.
I have obviously said yes to the cyclophosphamide but don't want to start it until this has been sorted as they won't operate while I am on the chemo drug. I've been chasing and phoning yet no one seems to be doing anything and my GP has now written saying why do t they get together and talk, to formulate a plan ?
I am so sick of the goose chase and then having to re exp,son this to people who have not even read the notes. My GP is the cement that has managed to keep me going throughout this. I don't understand why they can't even call each other to discuss it.
Obviously the rheumatology bods want me to start cyclophosphamide asap and aren't really listening to my pleas of getting the leg sorted. It really is like talking to a wall. Start the cyclophosphamide and we will be done by March, when I then question the short period it actually turns out to be more like 6 months. First 3 infusions every fortnight then monthly. The irony being that since I upped the azathioprine to 200 I have been stable with no rigors or symptoms.
I am so very tired and lost in this. I pity my GP.
You can address the complaint to PALS, you can phone them to make the complaint over the phone as well.
As you have lung involvement I am guessing that any anaesthetist would be reluctant to intubate and ventilate you as your lungs may not stand up to the strain. It may be that something like Rituximab might be a better short term option than a course of Cyclophosamide. They do need to get together to discuss it !
That is very good advice as I would never have known of it let alone asked. Many thanks. I need them to talk first though. Something they don't seem to want to do. I don't mind admitting all of this scares me as I've no idea of what to expect and being on my own now, it's a big worry. I've been taking more of the painkillers and benzodiazepines just to get by and then that worries me.
I never thought I'd end up a paranoid, worried man. I really am a mess. I habe to ask my neighbour in so that when I habe a shower there is someone in the house who could help me out of the bath. I try to think of all the people who have it worse but it's not helping. I've never felt this weak and lost before. I jjsy don't know what to think anymore and I am becoming more isolated by the day
Jools, stay on this site, and keep people informed here, about how you are. People here are very supportive so don't think for one minute that you are burdening anyone. I am concerned about you, not only in relation to your pain etc, but also the fact that you feel that you are losing control and feeling suicidal. Everybody is here for you š
Still nothing been done. Had another MRI last week but no one is calling or writing. Seems I am being dragged into further addictions to opioids and benzos.
I'm so very tired of this, I really am. I've left so many messages.
I have my operation this Thursday 26th January. It's a dual discectomy and a decompression of the hernias that are pressing upon the nerves that are causing the agony. My GP and even my nurse wrote letters and it seems it had the desired effect. I am a little nervous as they habe to tell you of all that can go wrong but I just want this to be over with. Apparently the procedure will take around 2.5 hours and the surgeon seems pretty confident that it will stop the leg pain. He said that my back pain will not be helped but that it will stop the leg pain and I am overjoyed with that.
Please habe me in your thoughts from around 10:00 on Thursday and I will update you on how it went.
Nil by mouth now and have to be at the hospital for 9:00 hrs. Nervous and worried. I never used to be like this but I guess the years of intrusive tests, scans and biopsies have taken their toll. Am really hoping this is the start of a period where I can get my life back and try to enjoy what is ahead. I used to just turn up and let the doctors get on with things but I am really very nervous. I am not allowed to drive for 2 weeks and will not be able to lift anything heavier than a quarter filled kettle and I will heed the advice as I want this operation to have the best chances of success.
I will give an update once I am able. Please have me in your thoughts positively tomorrow morning if drawn to do so.
Ok good people. I had the surgery and when I was opened up it was found I needed a decompression plus discectomy x 2. I am miraculously without leg pain bu the road to recovery is long. Once I am recovered and allowed to do bending & normal things then I start cyclophosphamide asap.
I am just finding it hard to take in that I wake up without pain and have already stopped the oramorph and will cut the MST steadily.
I was in surgery 3 hours when originally was scheduled for a 1.5 hour procedure. It's very difficult not to bend as it's an inbuilt reaction. I feel very blessed right now though this year I feel will be the year I get my life back if the cyclophosphamide works.
One step at a time though eh x
I just found this, sorry I missed it earlier. I, too, had surgery for a herniated disc and nerve compression in the same place as you had on Jan 4th of this year.
In my case, the surgeon did consider GPA a risk factor but my right leg was (and still is) considerably paralized when I was admitted to the trauma surgery dept. (on xmas day as an emergency) and the pain was incredible. I spent the last three months slowly recovering with gentle physiotherapy as the vasculitis decided to include a flare up into the scenario. As my leg, esp. my foot, is still not quite responding (I can cycle and drive but walking is a sloppy affair), I am due to start an outpatient rehabilitation program daily for three weeks now and I have great hopes as I also have the odd days of unpleasant lower back pain and I would like to have the possibility excluded that this may be vasculitis related. It's really a challenge to have that on top of the vasculitis and I just want it to be dealt with and sorted.
The leg and buttock pain is totally gone and I feel a minor miracle has occurred but the lower back still hurts. The surgeon said this would be the case and he was spot on. I got so bad that I ended up buying the strongest of pain killers on the internet. I couldn't believe it would actually be sent by normal post. I am now finding myself cutting down on all pain relief but outmof addiction now rather than pain as the rheumatic/arthritic pain does not respond to the opioids and fentanyl. I was on a prescribed dose of slow release morphine for over 15 years but the pain was so bad that I bought the fentanyl as it seems I had a very lucky escape. On top of that I was popping benzodiazepines like sweets in an effort to knock myself out. You know how damned awful the pain is, when you can't even go to the loo without yelping. I was in an awful mess.
As far as the leg is concerned , it's as good as new. I tried to give the surgeon a bottle of decent wine but he said he couldn't accept gifts. His name is Dr Iyer. His full name is Venkatachalam Iyer and I can highly recommend him to anyone going through the same
Yes, getting rid of the leg and buttuck pain has been miraculous and I am still over the moon. The lower back pain comes and goes and every time I freak out for a while until the physiotherapist reassures me that it is muscular and bound to happen. I find that moving helps, regardless of pain and I rigorously stick to my regimen of twice daily 20 min back exercises as taught by the physio, a half hour walk (at least) and a 45 mins evening cycle (I have an e-bike). No matter what pain level. Other than that, I apply heat (hot water bottle, fango pack) any time I fancy and sit as little as possible. I tried all painkiller bar opioids with no effect, so struggling along without any.
Wow. I haven't done exercises as yet. I admire your spirit. I think I got so used to being a virtual prisoner in my house that I really need to break the habit.
I'm also pretty sure that the amount of prescription opioids and bought drugs have had an effect where I find it hard to find reason to go out. Hopefully the weather will properly warm up and I will venture out. I will seek help for maybe helping me with the dependence I'm now left with after 15 years of slow release morphine & oramorph. I found the GP was just handing those out plus the diazepam so easily. I am not into blaming anyone but had I known that you actually needed more of these drugs to get the effect it first had then I'd have been much more careful. I am now left to rue what may have been as I am positive than these drugs only served as a plaster, covering up something but not helping. I am aware of this and will be seeking help to hopefully get past this.
On my last but one hospitalisation, thenparamedic saw the tablets and oramorph by my bedside and thought I had maybe overdosed instead of it being the vasculitis. He pumped me full of the naloxone that stops the affect of opioids. I have to tell you, that was true hell. I had no idea I was so addicted and in that long night of the drugs being nullified, I knew I had to do something about it. I can't even articulate how I felt but it was something like extreme agitation mixed with unbridled rage and swings in temperatures. I do sometimes wonder if the benzodiazepines have maybe played a part in the vasculitis as they are finding out more, day by day, the longer term affects of them. They do know now they can bring on early onset dementia
God, this getting old malarkey is no fun eh lol š
Oh dear, what a stressful time for you. I hope spring and the warm weather will help with your situation.
Whatever path you want to try out re the opioids - ask the doctor you trust most on how to go about reducing or replacing them. Don't rush it by yourself. These drugs can be a godsend and clearly have helped you through a hard time. There are medical protocols to reduce them so that your body does not suffer unnecessarily.
But that should not stop you from getting help from a physiotherapist to start moving. I was told to do very little for the first 6 weeks after surgery, only some gentle muscle strengthening. But from week 7 onward, I have seen a physiotherapist twice weekly and we slowly built up a gentle daily exercise program. Nothing dramatic (I am almost 60 yrs old). She checks my progress and corrects any mistakes. Sadly, I still cannot lift/walk with my right foot at all, which is why I am now sent to this rehabilitation centre for three weeks every day (all day) where - I am told - I will have all sorts of physio and massage etc. incl. exercising and cycling in an exercise pool with warm water to my neck to support the body.
I am getting excited as I have read lots of good reviews about it. If anything, a change is a s good as a rest and the cabin fever is really getting to me.
Thank you. I have now started walking a friend's dog since reading your post and it's been fun. I've met a lot of nice people too. I did di up the garden too and cut the grass again. I'm feeling lots better for it. Many thanks for your input
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Newcomer
Newly diagnosed MPA pANCA vasculitis with PBC anitibodies
Stopping Thalidomide treatment; starting Cyclophosphamide (in addition to masses of other stuff)
Symptoms seem to be increasing but change hourly , daily ,!
ANCA PR3 Rising after finishing Cyclophosphamide and transferring to Azathioprine. 
