Title: 3 Month Check up.
Kirst77 - December 8, 2011 08:34 AM (GMT)
Hi to all and hope that people are as well as can be.
I thought that I'd write a posting due to now being 3 months post op and had my appointment on Tuesday for a check up. I also on Tuesday got the second opinion report on the recent mri scan I had done which I was told first that there was nothing wrong and all was fine.
I'll start with the scan report first as I said it had been reported that all was fine and had summed the wholoe scan up in one sentance, but the second opinion report which I'm so glad I had done say's a little different. L5/S1 facet joints asymmetrical. L1/2 disc degeneration and bulge which looks like it's going up the L1 disc but axial views are not available (they were asked for but were not done). Also it has been found that I have facet athrosis at levels L4/5 and L1/2. I not sure if this affects anything (in the long term) to do with the ard I had done at L4/5.
I travelled down to Southampton for my 3 month review and to be honest I wish I hadn't. I waited 2 hours to have a x-ray done then I wasn't in the consulting room for no9 more than 5 minutes as we were practically shoved out. I have always had only good things to say about Mr B, but from the responses and the manner in which I was spoken to the other day my opinion has changed. I told him that I was in more pain than before the surgery and I explained about what was happening. I also told him I had had another scan done and I had it with me so he could have a look at it. He declined the offer of looking at the scan, so I told him what the report said in brief and his reply was that everyone has this so it's nothing to worry about. I was told that all is fine with the disc all is in place (which was the only good thing to come out of the day) but that there was no explanation as to why I was in so much pain still. He had the attitude of someone who basically couldn't be bother and had somewhere better to be. He wouldn't even let my partner finish what he was saying as he moved us out of the room.
I was left feeling disgusted by the way we had been treated. I was also left with the feeling, that yet again, someone was telling me that it was all in my head.
I am very glad that the x-ray was normal. But I am still in so much pain. My pain I feel in upper part of lumbar and lower down at the very bottom in the buttock area, I maybe think they may be issues with my SI joint. I am left feeling gutted. I know things aren't right because of the pain. I was left with an appointment for 6 months time with Mr B.
The only up side is that I know I have now been accepted by Nottingham (Mr Grevitt) I just have to wait for the to review as to when they want to see me, whichwill be on the 12th for the review. I have all the scan's, x-rays and reports / letters to take with us which I am hoping will save some time.
What topped all of this off was that on Monday I fell and have hurt my foot. It's very swollen and painful. Walking is made even more difficult. My luck is really down. I know I'm not the only one who has to fight for everything but it is so so hard and I 'm tired of doing so. I'm fed up with constantly having to prove myself and feeling like people are thinking it's all in my head.
I have now been put on anti-depressants which I'm not particularly happy about but I know I have to try something as things can't continue with the way I'm feeling. A referral for some talking therapy has also been put in place to try and help the depression.
I'm just hoping that the new doctor will look into things a little more and I'm given hope or some treatment, don't really care what is offered as long as it helps.
I know this christmas is going to be a difficult one for many reasons but I will muster something up so that the kids don't see me all miserable.
Alastair - December 8, 2011 08:59 AM (GMT)
I have to agree that the treatment that you had them in Southampton is totally unacceptable, but maybe you are just viewed as an NHS patient and I'm afraid NHS patients simply have to wait for stuff. Maybe Mr Boeree because you were as it were an NHS patient only really had 10 min for you which is all the time they are allocated for NHS patients. Certainly it was a big letdown for you.
It's going to be interesting to see what is said at Nottingham, again it looks as if you're seeing them on the NHS, so don't expect any red carpets but it'd be interesting to know the sort of reception you get there.
It sounds as if you have got facet joint problems, I wish someone would hurry up and get a solution for these as there is millions of people out there with this problem.
Please keep us updated as to how you get on on the 12th
very best wishes,
Kirst77 - December 8, 2011 11:04 AM (GMT)
I don't see them on the 12th but this is when they review my case as to when I will be seen. I agree that the treatment is different if NHS to Private. When I went to see him privately he was more 'interested' and had more empathy but none at all for NHS. If 10 mins is the allocation time then I was only in there for half that and I was his second to last patient. I understand the time restraints for NHS doctors but it's so wrong that doctors have more interest and empathy with the private patients!
I am not expecting to have an appointment that quickly as again it is NHS as we can not afford complete private care, it's been one off appointments that we've had.
To be honest Alastair I don't know much about either facet joint problems nor SI joint problems so if anyone has any infor they could share I'd be grateful. I am too unsure what this means on a long term basis as to what to expect but I'd guess this is impossible to say as everyone reacts to this condition differently.
Take care all.
alyssa.star - December 8, 2011 11:57 AM (GMT)
I'm sorry I don't have much info on these things but I was diagnosed with Facet Joint Arthritis at L4 but I am now fused to L4 but considering the extent of my problems (also SI joint problems, mainly left sided) I know the SIJ (this was said to me by Mr Wilson) is the biggest joint in the body yet with naturally already having very limited movement gennerally, if this gets irritated and causes even less movement in the joint I think this is when there are problems if that makes sense... Although please someone do correct me if I am very wrong - which wouldn't be a 1st lol.
In mid 2010 I had the left SIJ denervated and it helped that joint. Although it seems that things are coming back with a vengence kind of thing.
I'm sorry that's not much use but I just wanted to give you a shout, :)
Take care... Lyssie xx
ajj1001 - December 8, 2011 02:20 PM (GMT)
So sorry that you had such a bad time, especially after travelling all that way. He just mustn't "get" how bad things are for you at the moment and be putting it down to the usual post op recovery.
I had perfect facets when i had my ADR but that is what went wrong when the discs started to have problems. The joints showed up as more and more problematic but i knew that things were right well before anything could be properly seen. I had to keep insisting that I wasn't imaging things and was taken seriously as I had the five intervening years without a single complaint.
Facet joint problems can be diagnosed by looking at them with scans & diagnostic injections. If the injections give relief then more longer lasting options can be considered.
Hope that this all gets properly looked at by Mr Grevitt when you eventually get to see him.
Turbogirlie - December 10, 2011 11:40 AM (GMT)
I hope that your case is reviewed properly on Monday & your appointment with Mr Grevitt comes through quickly. I am sorry to hear that you had such a bad time in Southampton and have been put on anti depressants. It's not in your head, but I know how you feel.
I also understand what you are saying about NHS & Private. When I went to Spire (under the NHS) Mr Shackleford had time, my first review was ok. My second review was at Warrington Hospital, he was running over an hour late, and when I finally got into see him, felt rushed - think it was only 5 or 10 mins that I got with him, and then almost shoved out - didn't get to discuss some of what I felt that I needed to. For me, Warrington is a 200 mile round trip, which I managed to make on my own, but felt dejected after.
Take care & big hugs. B)
Hurtyback - December 11, 2011 01:28 PM (GMT)
(((Kirsty))), you poor bunny, you are having such a rotten time - no wonder you are depressed! Let's get this clear - being in constant pain causes depression, the depression makes pain more difficult to cope with, but it does not mean that the pain is 'all in your head'.
I'm sorry to hear that your appointment with Mr B went so badly, there is no excuse for that whether you are being treated on the NHS or privately :angry:
As an aside - have you had your injured foot looked at? Limping on that won't be doing anything to help your back problem ...
Kirst77 - December 11, 2011 02:28 PM (GMT)
Thanks for all the replies and support I do gain some strenght from this.
I have had my foot looked at as I went to the hospital some after. Nothing broken but think there may be some ligament injury. It is getting better but doesn't help the situation. Especially with the nerve pain in that leg.
I have my case reviewed tomorrow by the new consultant taking over my case. Hopefully soon after I should receive an appointment, hoping it won't be ages to wait. I am thinking of perhaps making a private appointment with him as I sure there won't be enough time at the nhs appointment to go through everything. Also if any other scans need doing we can try and get it done ourself. We can't afford complete private care but if we save a little we can do something to sjpeed things up a bit. I read about a lot of people having CT scans to help look at things. What do others think? Would this be helpful if we tried to get one done?
Many thanks as always :D
Lynda - December 17, 2011 11:12 AM (GMT)
Oh Kirsty, I am sorry you appointment was so rushed and the surgeon didn't look at your new mri scan and can only imagine how disappointed you must have felt after the consultation. Its good that the disc is positioned well though.
I think you should wait to see what Mr Grevitt suggests when/if he see you rather than paying for private CT scans. Did you hear the upshot of the case reivew yet?
I hope you turn a corner soon...... many people do seem to between 4 and 6 months..... and the pain begin to improve. Have the anti-depressants helped with the pain at all, they can have good effects on nerve related pain?
Kirst77 - December 29, 2011 11:25 PM (GMT)
I haven't posted for a little while, partly because things have not changed and is still causing me a lot of difficulties. Then there has been Christmas or which I hope everyone has have a great Christmas and that your New Years in fab too. :D
I am hoping Lynda, that things start changing for the better soon. I really don't want to see this going on long term and to be honest, I don't know how much I can take.
Lydna I have seen a very slight improvement on the nerve pain, since starting the anti depressants, but nothing to shout from the roof tops about. What has improved is my sleep. I take the tablets and soon after I am knocked out! The only down side of this is that in the mornings I could stay in bed rather than get up! :rolleyes:
I have heard from the case review Lynda and I have been accepted by Mr Grevitt but thats all I know at the moment. My doctor has written another letter to him to see if things can get moving and also to include some more information on other symptoms, so we are hoping this will mean we will hear something soon, but as with all surgeons I know the waiting times are long.
Unfortunately the near constant pain is still there, with very sharp stabbing pains when I move (not all movements, but can come without warning), sometimes causing me to 'wobble' on my feet until I get my balance back. This is getting more and more as time goes by.
I am very stiff in the mornings with pain in other joints as well. I presume that if there is arthitsis in my back, then it could be in other joints too. My fingers and knees are the other areas. At times I find it hard to straighten myself whilst standing because of the pain and stooping eases it. Although I know this is not possibly the best thing to do, sometimes it's the only relief I can get when walking around.
Over christmas movement has caused a lot of pain but I think that is because I have or I have attempted to do too much but on the other hand if I rest too much then this cause pain and stiffness also ... can't win either way!
It seems that any movement that causes pressure / compression on my spine hurts if done too hard. Such as sitting down, after streching, and walking. Again hoping that this settles soon. I really hoped that things would of been a lot better by now with it being nearly four months since the operation but like you say Lynda some people see an improvement around 4-6 months so I guess there's still hope.
Thinking of all those out there in pain and sending them my thoughts, take care and Thank you.
Hurtyback - December 31, 2011 12:44 PM (GMT)
((Kirsty)), I am sorry to hear that you are still in so much pain. I hope that you will not have to wait long to see the new surgeon, and that he will be able to offer something that will help.
Lynda - January 3, 2012 03:09 PM (GMT)
I too am saddened that you are still suffering so much pain and hope you get seen very soon and the source of your pain is identified and treated appropriately.
Thinking of you.
Kirst77 - January 5, 2012 12:16 PM (GMT)
I am feeling completely dispondant & wounded today. I have telephoned Nottingham to see if there had been any progress in regards to an appointment with my new surgeon, Mr Grevitt. I have been told that his list is very long as he only has one clinic a month and that I am looking at a considerable amount of time before any appointment being allocated. At the news of this we thought perhaps we should see him privately, as we have done before when living down south. I enquired about this as to the cost and what I needed to make the appointment, again another telephone call ended in disappointment. I have been told that Mr Grevitt does not see anyone who hasn't got insurance and even if he did he wouldn't see me as I am on his NHS list already, as it would complicate things!
I am left feeling very emotional and to be honest be side myself. I really don't know what to do. My GP has written a number of letters to the hospital as he wants me to be seen asap because of the amount of pain I am in, but obviously we haven't got far. I do have a high pain threshold but I am left grounded by this. My quality of live is nothing if it weren't for my kids & my lovely partner. I only go out if I'm with him as the last time I did I fell over badly hurting my foot (still causing extra pain at times) & generalyl it's only to the food store as I can't manage anything else. The rest of the time I'm in doors not doing very much. I try to help with the chores but to be honest, even sweeping the kitchen floor leaves me in a large amount of pain so most things are out of the question. The worst thing of all is that I can't interact properly with my children, my 14 month old is not picked up by me & hasn't been for a long time. I just don'tr know what to do as I'm so so drained.
I'm sorry to go on but I need to air this otherwise it'll build up inside, as I'm sure you all have been through. Has anyone else come across practices such as what I've been told in regards to the private appointment?
I have an appointment with my GP about a unrelated matter so I guess I need to have a discussion with him then. I use to be under a pain clinic but not any longer so I wonder if this is a path to go down.
I apoligise again for my negativity. Hope people are as wellas can be & keeping out of the stormy wind if it's in your area. Take care.
Alastair - January 5, 2012 01:39 PM (GMT)
I bet if you got your GP to write to him he would see you Privately - -- there is nothing like a bit of money to focus the mind. I bet if you talk to his "private" secretary she would make an arrangement for you, explain that you'd see them on the NHS but needed an urgent checkup. I don't know what he charges but it's usually around the £200 mark.
I bet it was his NHS secretary you spoke to?
It is quite within the rules of NICE for specialist to see you switching between the NHS and the private sector, it is also approved by the BMA.
Kirst77 - January 5, 2012 02:06 PM (GMT)
Alastair unfortunately it was his private practice secretary I spoke to & I explain the situation but she said was that she couldn't help. I also explained that I had seen my old consult in this way before & her response was that some do practice in that way but not Mr Grevitt. The explaination was that private & nhs appointmemts do not sit together well, it makes things complicated & it would put a delay on the movement of my progress through the nhs. I don't understand that myself as it's what I did before & infsct if it wasn't for my own personal circumstances, the progreds on the nhs was quicker plis cheaper for the nhs as we paid for some appointments & a scan ourself. She also said that eben if he did see nhs patients already on his list he wouldn't see me as I have no insurance - he doesn't see people who self fund!
I'm in disbelief really as I've never heard this before. Will see doctor & explain things & see what can be done.
ajj1001 - January 5, 2012 02:44 PM (GMT)
On the positive side at least you are on his NHS list and he will see you even if it takes some time. It is very unlikely that he would do another procedure until you are at least 6 months and most likely 12 months from your last op. If you could get an approximate time for a first appointment then at least you would know what you are looking at. My only suggestion to expedite things is to be assessed by the pain team and see if they can send a report through to Mr Grevitt though this might not get you seen sooner.
If his time is completely filled by referrals he has to take because they have insurance then maybe there is none left for self funded patients. These talented surgeons have hugely busy professional lives and have to make some tough decisions.
curlyshirl56 - January 5, 2012 08:32 PM (GMT)
I have never heard this - I have, for years, had private consultations and then transferred to NHS list and have never come across a Consultant who wouldn't accomodate this. As you say its a win win situation. I really hope your GP can be creative and find a way forward for you and also get you an urgent pain management appointment also. Whilst you are in this much pain its impossible to manage the hurdles we have to climb over to get treatment.
Its truly appalling and Im furious on your behalf.
Let us know what GP says.
Hurtyback - January 6, 2012 11:59 AM (GMT)
(((Kirsty))) I have never previously heard of a surgeon who would turn down money! As has been said, I can only assume that he is so busy with insured patients that he doesn't need more work. No help to you, I know :( . I do hope that your GP is able to think of some way of working round this, it is not acceptable that you should continue in so much pain :angry:
Kirst77 - January 20, 2012 01:34 PM (GMT)
Have not written for a little while as I have been dealing with alot of things and the depression certainly doesn't help.
I am still waiting to hear back from another consultant who has been looking at my x-rays & mri scan in his own time (see other post re: Correct Position of the M6L) In short it seems as though my ADR which I wa told was fine is in fact not fine and it seems it isn't correctly positioned, hence why I am now very worried about more movement if I move in certain ways . Will keep people updated with this situation once I get more infor.
Today was never going to be a good day. Woke up in lots of pain duringthe night and it's not settling today. After the surgery I had developed a numbness at the top of my left thigh into the groin area, I was told that it would settle as it's probably a nerve a little disturbed during surgery. Well it would get very painful... like a really bad sunburn with the skin red raw. My gabapentin was increased to the maxium dose and this seemed to settle the pain. The numbness is still present and unfortunately the pain seems to be coming back bit by bit, not sure if a visit to the doctor is needed but it's not helping my sleep.
I have recently been referred to a pain clinic in Derby which I was so pleased about. I had been perviously under a pain clinic for serveral years down south but was referred to a consultant and my appointments ended for some reason. I don't know what it is with me and I know that a lot ofpeople get their fair share of bad luck but I seems to be bad luck central! I was suppose to get a telephone call from the pain clinic on the 3rd February but recieved a phone call from them this morning and for some unknown reason they have said that the consultant has already looked at my case and has said that they can't offer me any appointment so refusing to see me I don't understand this. I asked why I have been refused but the lady wouldn't tell me just said to wait a few days and a letter is being sent to my GP explaining why so I am to make an appointment in a few days time.
I really don't want to be in this pain, the pain clinic was like a last choice so now I just feel as though no one is willing to help me. No one at my local hospital - Derby is willing to help. The consultants said I had too much wrongfor them to deal with, the phsyio was useless although being in the hydro pool was good I was left on my own I couldn't make my last appointment because I had fallen over and badly hurt my foot and I haven't heard anything since. I feel so down and I really don't want this pain for a minute longer. The medicines do help to a degree, I can feel when my patches are nearing the time for change as the pain starts to get very much stronger. I know don't know what to do!
ajj1001 - January 20, 2012 02:54 PM (GMT)
Pain clinics sometimes will not deal with people who have involvement with surgical teams or say they view surgery in the future to deal with their pain as a possibility. There might be an alternative, such a referral to a consultant anaesthetist, which your GP could help with.
I had a bad experience with my physio after this op which has meant i have had to find someone outside of the NHS (the first time I have ever done this as i am staunch supporter of the NHS). Some of them just don't listen, its very hard being persistent to find someone to pay attention to your symptoms when struggling with day to day pain.
Try writing down what has been going on and how your pain has been so you have it to show to the GP, it can be hard to communicate in a 10 minute appointment how bad things are but a written record of it shows how serious it is.
Kirst77 - January 20, 2012 07:14 PM (GMT)
Thanks Ajj, I just find it completely unbelieveable! Fortunately I have a great GP and is fully aware of the difficulties I have at present and is in just as much disbelief as I to the position I find myself in, not just with the pain clinic but as a whole. Luckly this is one thing which I have my side. The whole surgery will bend over backwards to help.
I had a phone chat with my GP and he has said to wait for the letter from them, see what they have to say and their reasons for refusal. He will then call me back once he knows and can then think about the next course of action. Hopefully the letter won't take long to arrive.
Hurtyback - January 21, 2012 03:16 PM (GMT)
(((Kirsty))) what a nightmare!!
Gilly - January 22, 2012 07:11 PM (GMT)
So sorry that you are having to go through all this, it is bad enough finding out that the operation hasn't been done as it should have but having all these problems to get some painrelief is terrible. No wonder you are feeling depressed. Hope you get to hear very soon.
Kirst77 - January 23, 2012 12:35 PM (GMT)
Many thanks for the replies & the support it means a lot. I have had confirmation that the disc doesn't look good. It is also thought that the facet joint don't appear to look normal at the level of the adr, L4/L5 & perhaps other levels. The general thought at the moment is that I'm 'going into lordosis'. Not 100% on what this means. The next plan of action is to get a CT scan to look at the facet joints. I am going to try & see if my GP will help me out on this one & get it through the NHS, if not then we will save & self fund one. The doctor who is helping me has said he'll look at the CT scan then perhaps I'll see him privately & get it all in writing. I guess this will then be passed onto the doctor whom I am waiting to see in Nottingham, not sure yet. I am hoping I'll perhaps be taken on by the doctor whose helping me at the moment but I think I'm cluching at straw at that. At least I have a action plan at the moment, I haven't taken the usual route but. I've had to.
If anyone knows of any places where I could get a low cost CT scan that would be of help. :)
Things are still difficult, walking any distance is do able but I suffer for it. Sometimes it's difficult to straighten up from bending or even just getting up from sitting. But there is some hope appearing amongst the clouds... I think!
Alastair - January 23, 2012 02:50 PM (GMT)
lordosis is when you have too much curve in the base of your spine, that would be the reason that the plates of your ADR looked so close together in fact almost touching at the back. They did look just a fraction forward (anterior) to me, but not much.
Maybe you've got other problems with facet joints and stuff that was not diagnosed initially. I hope it sorts itself out because the implant looked lovely to me but just a little bit anterior
hilaryh - January 25, 2012 11:06 PM (GMT)
I'm so sorry to read your story, and I really hope things are looking up for you. It must be really hard to cope with such young kids - mine are 8 and 10 and that's enough of a challenge!
I'm waiting for surgery in 3 weeks, and I've mixed private appointments with nhs throughout with no real problem. I saw Mr Lam at the London Bridge Hospital for the initial consultation, and then at his nhs clinic at Guys hospital to get on the waiting list for surgery. Then I went back to London Bridge to have the discogram done as the nhs wait was forever, and then back to Guys for the actual surgery.
I did quite a lot of research at the start and was told by various nhs people that the 'private / public' mix and match is every patients entitlement, and they should have no problem with it.
I don't know if that helps at all, but good luck with everything.
hilaryh - January 25, 2012 11:15 PM (GMT)
I've just realised I replied after a mail from page one, and didn't read to the end of them so mine doesn't make much sense!
Sounds like you have lots going on and while I can't offer any useful advice, I just want to say all the best and hoping your pain improves soon.
Jonathon P - February 14, 2012 08:15 PM (GMT)
just been reading through your posts and am shocked and appalled by the apparent lack of support you seem to be experiencing from everyone,save your GP.
I have no idea why you have been refused a private consultation to speed things up a little as others on this board,including me,have benefited from same.
Also the refusal of your local pain clinic to see you is strange given that they would be simply treating your pain and not your condition,as mine does before my surgery.
I can only hope that,eventually, you can see the surgeon without too much more delay.
In the meantime,have you thought of writing/speaking to your MP.They are usually very good at sorting this sort of impasse out,I would certainly give it a go as you have nothing to lose and (possibly) everything to gain.
Thinking of you.
dreamer - February 15, 2012 09:50 AM (GMT)
Big hugs, how incredibly frustrating and difficult to deal with - just awful, I am so sorry and sending you hugs!
Wrt the facet, did they say what the problem was? I have a congenital issue which means I have no facet at all on the left, and although it didn't rule me out for ADR it was something they had to consider. In the end they fused instead (l4-5) so perhaps that is an option ultimately.
I hope you manage to see someone - I find it strange that he will not see you - is there another surgeon who would see you at least for a chat? I am sure mind would but we are down south and he doesn't work on nhs (which scares me for the future but tyats another story!)
Kirst77 - February 18, 2012 04:04 PM (GMT)
Thanks for all the support it really does make a difference. I am no futher forward in seeing the consultant I am waiting to see in Nottingham. To be honest I feel as though I have given up the ghost on that one.
There has also been no improvement in my pain, in fact if anything it has become worse. I am now practically house bound, I am still going out but this isn't very much and for definately not for long. My sleeping which had improved due to the anti depressants has now return to the usual, waking in pain and only able to cat nap after this. So the use of the oramorph has increased again. and the emotional and physical feeling of being drained has come back with avengance. I wish that I could report some improvement now that I am 5 months post op but unfortunately I can not. I feel very dispondant as I feel I have been left on my own with this. My GP is great but his hands are tied as he has tryed every route that is open to him. I can't increase my fentanyl patches any further as I can not tolerate it and makes me very ill.
I am not sure why but I have now got a numb area on the top of my left foot with some nerve pain coming from it from time to time sometimes going up my shin, something else I need to see the GP about as in a week in it hasn't got any better.
One good thing is that I am still in consultation with another top consultant (via internet) who has reviewed my MRI and requested for me to get a CT scan of which I had done yesterday. The appointment was badly organised and as a result of a nurses insenitivity I had to calm my 13 year down as he thought I was going to get cancer but thats another story. It seems that nothing can be straight forward with me, not even just a scan appointment!
So on Tuesday I will get the CD from the CT scan to this doctor and he said he will review things from there. So I am hoping that I may at least get some answers. I am also hoping eventually to be transfered to this doctor as it makes sense has he has all my information in relation to the scans. This now is the remains of any hope I have left.
Also my old employer has a professor friend who is a radiologist and she has said she will ask him to do a second opinion on the CT scan, I guess always usfeul to have!
Hilaryh yes the children are very demanding and a challenge but I have my dear dear partner who a while ago give up work to become my carer and he looks after all of us. It gets very stressfull for him and I have said we can get a carer in so that he at least has some time to himself but he says he couldn't do that. But he is a great great peron.
Jonathon P I am also in disbelief over the pain clinics decision. In the letter which was sent to my GP it stated that they did not want to treat me until I have seen the consultant because they need to know what they are allowed to do which wouldn't do harm to my back! But what am I to do in the mean time? but they have no answer to this, as you say they would be treating the pain not the back problems. They are sticking to there decision so I stuck in regards to that.
I have thought about writing letters but I wonder who would listen to me as after alli their eyes there are bigger things for them to deal with. I use to work in a pharmacy and I recent saw my older boss who I now have a great friendship with and she has said to perhaps write to the pct but again I am uncertain if this will even get a reply.
Dreamer I don't knoiw the exact problems with the facets. I have been told there is arthritis present but nothing other than that at the moment just that they don't look normal. I should think or at least I hope to find out once the scan is looked at. I am having correspondance with another consultant but at the moment this is not officially. The doctor is looking at things from me in his own time and he is certainly a very good man as he could of charged me for what he has done to date but hasn't. I am very gratefull for his input and I am hoping to see him as patient/consultant in the long run. In fact I am seeing GP on Monday morning and this is one of the things I will discuss with him.
I thank you again for your support.
Gilly - February 19, 2012 06:35 PM (GMT)
You are having such a terrible time Kirst, and how awful for your child with the confusion over the CT scan - it so annoys me when people don't think. I sincerely hope that this new consultant comes up with some good news for you. I know how awful it is being housebound and having to rely on everyone and being in so much pain.
You take care now
Love Gilly xxx
Kirst77 - February 21, 2012 07:09 PM (GMT)
Many thanks for the support. I have delivered my CD of my recent CT scan to a consultant to look at. He will get in contact with me when he has a chance to review everything. I am hoping a action plan will be put into motion along with some answers.
Hope people are as well as can be.
Gilly - February 21, 2012 07:34 PM (GMT)
Good news Kirst - got my fingers and everything else crossed for you!!!
curlyshirl56 - February 23, 2012 12:07 AM (GMT)
And me! Everything that will cross without me falling over :rolleyes:
Heres hoping.... xx
Kirst77 - February 24, 2012 09:43 AM (GMT)
Thank you for all your support and for crossing everything! I have got the first of two opinions of my recent CT scan. I have got two people to assess this CT scan as I have had many things missed before and they have been clear to see. The second opinion I have a professor looking at the scan, I am very luckly as he is a friend of my old boss who has said he will take a look for me, I'm very pleased with this.
The first states a few things but he isn't experienced with adr so nothing has been mentioned regarding this matter. It says that:-
There is slight kyphosis at the thoracolumber junction.
Loss of height of the superior endkplate of L1 and L3. Narrowing
of the lateral recesses bilaterally. At L3/3 there is ossification of
the anterior longitudinal ligament on the right, together with small
osteophytes. Posierior disc bulges demonstrated throughout the
I am worried also as at the level of the adr the vertabrae looks clearly out of line and the disc at L5/S1 is awedge shape. I am no expert but have done lots and lots of reading and research. A little two much perhaps but I am a person who likes to know everything and understand everything. I have seen pictures and scan's and it looks similar to what subluxation looks like. One thing that isn't mention is anything to do with the facet joints but I have already been told by two independant consultants thyat there is some facet arthritis and the facet jont don't look normal at all.
Anyway the one major thing that I'm worried about is what will happen once I am told the opinion of the surgeon I am in consultation with via email and who is looking at my MRI and the recent CT scan. I am hoping,if lady luck is on my side that this surgeon will take me on on his NHS list but if this does not happen then I really don't know what will happen. I know it'll be sorted out one way or another but the fear of unknown is playing a major part at the moment!
I guess I have some answers at present so I will wait for the consultant to get in touch and for the other opinion.
I hope that everyone is as well as can be and that all take care.
srajan0929 - February 25, 2012 12:17 AM (GMT)
hey kirst, i am reading this after talking with you over the phone. i am extremely saddened by reading your story once again. clearly there is something wrong with the placement of the ADR. it might be putting too much pressure on your facet joints. Obviously, the redo will involve fusing the area in situ. please keep up updated on your progress...
Alastair - February 25, 2012 08:59 AM (GMT)
From what someone else said about yours CT scan, there looks as if there could be a considerable amount of other problems in addition to what your surgeon fixed, don't know anything further can't say anything further
good luck with this
Hooch - February 25, 2012 10:29 AM (GMT)
Raj, Kirst had it done under the UK national health system not as a private patient.
It's a bit hard looking at the x-ray you posted Kirst as it was taken at an odd angle and poor quality, but if your spine has indeed been driven into segmental extension... that is not good.
I hope that the segmental extension is at least partly due to a loss of muscular proprioception. Has anyone introduced you to lumbopelvic positioning exercises? Have you tried any rehab? Or does that stuff just not help at all?
Kirst77 - February 25, 2012 10:30 AM (GMT)
Thanks for the replys.
Alastair I do feel as though the amount of things I am up against is increasing by the day! It doesn't help that I don't completely understand the full extend of not only whats wrong but what this all means in relation to the pain I am in. Also the long term outcome & in the short term what can be done or not done to help either all the problems or to individual ones! :o (I dont ask for much <_< ! perhaps I need to lower my expectations :huh: )
I am just hoping that I get the full results soon & in turn get to see the consultant quickly.
Srajan0929 it was good talking to you & I hope that you are able to make some informed decisions soon. Remember though that in my case there are a number of things wrong, so my outcome is not necessarily the usual & perhaps not the case to use in research either for or against the M6L as these other problems are maybe partly to blame for the results I have. I think perhaps the thing to take from my case is to make sure that you are investigated properly before the surgery. At the moment my thoughts are that I wasn't investugated enough to ascertain exsisting problems that may of gone against having ADR surgery.
You are the only one who can make this decision, one which you can live comfortablely with. I think one main question to ask yourself is how much is it affecting your life now. Good luck with your trip and pshyio. :)
I haven't contacted Mr Boeree fully as yet to inform him about these problems I am having, although I did tell him about the pain & the facet problems at the 3 month check. I haven't done so as yet because I want to wait until I had all of the facts & all of the details of the scan's & the possible solutions. I am not sure if this is the right thing to do but I feel it is as I do not want to say it is the fault of the disc if this is not the complete picture.
Many thanks again for all replys and support it does mean a lot.
Kirst77 - February 25, 2012 10:52 AM (GMT)
Hooch our posts just missed each other! :)
At the moment things are still being investigated. I am waiting to see a new consultant as I moved to a different county, I have been told that I will have to wait a considerable amount of time before seeing him & I would receive an appointment 9 weeks before the time, I've still not heard anything & it's been 3-4 months since he accepted me. My GP has wrote a number of letters asking for me to be seen urgently but there has been no response.
I am however in consultation with a highly respected surgeon who is looking at my scan's and telling me his opinion. I am hoping that he will eventually take me on on his nhs list as my GP has said he would be happy to send a referal.
So hopefully I'll get the complete picture soon & see the surgeon in question... fingers crossed anyway.
I have been told of some exercises which I do try to do but at times it's difficult. I had some pshyio in a hydrotherapy pool. I had 7 sessions then couldn't make the last one as I had fallen over & badly hurt my foot. Since then I have not heard a thing so have had no follow up. :(
For some reason I get the feeling as if the medical profession are allergic to me so stay as far away as possible! :o