Support thread for those awaiting (and undergoing and recovering from) medical appointments,tests and surgery: PART TWO

[BreastmilkDoesAFabLatte]

This is a continuation of this thread, started a few months back by ohyouBadBadkitten as "a thread for you to vent in or post your 'hooray's'". Everyone is welcome, regardless of the nature or duration of their illnesses and whether or not they have a diagnosis. The last thread dealt with a real diversity of long-term and acute conditions, as well as many of the mental health challenges and fertility questions commonly associated with them.

We should probably add the standard sort of disclaimer about not necessarily being qualified or insured to offer proper medical advice, which means that if your symptoms start to sound a bit scary you'll get a few of us rather assertively shoving you in the direction of your local A&E department. As madsometimes puts it, "A&E for Mumsnetters would have Boden medical gowns, Farrow & Ball paint schemes and fruit shoot free vending machines selling organic elderflower presse. Pinot Grigio would be dispensed at wine o'clock. There would be public information posters warning about the dangers of googling Dragon Butter... the injuries resulting from Friday night threads would be quite horrific." However, we all know the reality of medical emeregncies to be signifiantly more stresfull than that, so if it's not life-threaningly urgent, we'll hold your hand and chat and support and speculate on the basis of the reasonably half-informed knowledge gained by our own life experiences.

Welcome. The kettle is on...

mad I think i am seeing him as a Doctor, who happens to also be an osteo and an acupuncturist, as he seems in control of where to go with my back issues.

He has made me feel stupid, childish and like I am making a hug deal about nothing, that it is my frame of mind making this pain so severe. Despite there clearly being evidence of a disc problem.

He also said he wants to see me again in a couple of weeks as 'you could do with a bit of support' wtaf?

Oh dear. Medicine is not very good at coping with patients whose symptoms appear more severe than test results would indicate... I've come away from cardiology appointments with the exact same 'nobody is listening to me' feeling of frustrating. Don't take it personally.

Please, though, don't dismiss the idea of CBT. It's something that has been proven to be really effective in helping patients with so-called 'medically unexplained symptoms' and in managing the pain associated with chronic illness. Just because it's being suggested doesn't mean that you are being suspected of imagining the pain or of making it up.

Its not that I think he thinks I am making it up, rather that he thinks it is all in my head. thats how I feel, that this pain is made significantly worse because I have other life shit going on. Well, I just have normal life shit going on. He has indicated that despite me having clear obvious signs of sciatica and back pain, and lots of appts that show physical signs of back problems (swelling, loss of lordosis etc) that this is psychological because I am stressed, and the symptoms are presenting as worse than they actually are because of my state of mind.

I absolutely disagree. I know what pain I have experienced. I know the MRI scan was over a month ago and things can change. It was because I stupidly tried to put the circumstances under which I found myself putting my back out into some context, and to get some re-assurance that pain radiating into my neck and arms was not significant, that he comes up with clearly that I am a fruit loop with all kinds of hypocondriac symptoms.

and I now I feel extremely tearful and frustrated, and like I am being a drama queen, that is really not that bad and I have just made it worse by dwelling and not having stiff upper lip and getting the F on with it.

and the thing is, the symptoms I have are medically explained. I have lower back pain in the location of the prolapsed disc, and severe sciatic pain which is consistent with a prolapsed disc. I cannot see why he is blaming stress.

And I know CBT can help, it can help come to terms with pain that will not go away, i won't dismiss it as a long term plan, but right now it makes me feel even more like I am just being neurotic and there is nothing wrong.

I shall stop the meds, and see how I get on. If the pain should not be this severe and this episode is going to end with me cracking on with life as normal, I don't need long term gabapentin.

ok. I have had coffee. I am feeling vaguely calmer. I called the surgery where is Dr is based and asked what their role is. They are 'back pain clinic' not the pain clinic that i would usually be referred to at the hospital This guy is not a Dr, he is an osteopath, and the other Dr is a GP who specialises in back pain and they are a 'local referral route' or something.

"The Lumbar Spine Pathway provides a secondary care triage service for adult patients with lumbar pathology. Patients are triaged by specially trained extended scope physiotherapists to decide on the best management of each case, which can include further investigation (MRI, XR, Bloods etc) and onward referral. Referral is guided by protocols agreed by neurosurgery, orthopaedics, pain clinic, rheumatology and physiotherapy. The aim of the pathway is to provide GP?s with a common access point for all specialities and avoid re-referral or cross-referral.The target group of patients is those that are not improving with usual management (time, medication, conservative treatment), or are more complex (e.g. mild neurology)" - The Pain Clinic at the hospital. which I need.

It goes on to say:
"This service differs from the acute and sub-acute back pain services in that they provide treatment based in primary care for patients within six months onset. Scans and caudal epidurals can be arranged but there are no direct links to secondary care" = this acute/sub-acute back pain services is what I was referred to - the Back Pain clinic.

Now, I am guessing that the back pain clinic is because it was classed as acute/within 6 months (despite it going on for two years, I only made a fuss at christmas). So, now it has been 6 months, and it is continueing, I will push for the Lumbar Spine pathway. The fact there has been 'neurology' suggests I should have been referred before now, but I have not, nevermind.

I am going to the GP tomorrow armed with this information and requesting an onward referral pronto.

you don't really need to read all that. I am just venting. I am not upset now, I am cross.

Pavlov, did the doctor tell you to stop the meds? You know that you are suffering from pain, and your MRI wasn't normal, so don't just stop if the doctor has annoyed you today. BM is right though, try whatever is offered to you. If it reduces the pain, then that is great, if not then nothing lost.

Anyone want to hear some good news? I got my ablation date today . It's July 11th. I could have had next week, but that wasn't possible for me. I still haven't found a date when I can see the pre-assessment nurse, because the date offered clashes with me going to the Hampton Court Flower Show, and I'm not missing that! The admin person is going to check other dates with the nurse and call me back. I'm at the hospital next week, and the week after for appointments, so hopefully I can be seen when I'm there anyway, but maybe that's being over optimistic.

I'm too pleased to be feeling wobbly, but I expect I shall need hand holding nearer the time when it sinks in that I am going to allow someone to burn the inside of my heart.

mad that is great news! but at what they are going to do! And enjoy the flower show!

I am going to just keep on with the gabapentin and go marching to see my GP, tomorrow. well it is not my GP as he is on holiday, it is the other one. She has just signed me off sick for another week no questions (before my osteo appt) as she says I have to get over this properly before going back to work as it will set me back a long time if I am not ready. So that means she at least does not beleive this is just in my head, I hope at least.

I just don't want to take a ton of meds that maybe i dont need, if what i need is just to sort my shit out mentally.

Oops, cross posted with you, Pavlov. Definitely ask for a referral to the pain clinic, but keep with the back pain people too (if possible). You might find that the hospital clinic has a horrendous waiting list. I'm quite that you were seen in the primary care stream because of the fact that you are having back and kidney problems being evaluated simultaneously.

I think the primary care stream for back pain sounds fab for most people. Hospital medicine can be impersonal, and generally makes you feel like you are on a conveyor belt. I also think that conventional medicine isn't always great for back pain.

mads oh I so glad you have a clue what I am talking about!

the problem I have with this primary care stuff, is, he is not doing anything that the hospital route would not do. He has not done any osteo related stuff, no physio, or exercises or guidance in how to manage this acute phase. He seems to be about 'do we need to worry/go down the surgical route? no? ok well nothing more needs doing/sort your head out love and off you go'. I don't want hand holding, or sympathetic raised eyebrows at how difficult this is, i just want some ideas on how to help it. And referring me on to yet another place where there is a 6wk waiting list to even be seen before they figure out what to do with me, is not inspiring me with confidence. But then, if this was simple, if the mindfield that is the referral process was simple, quick and easy, we would not be having this thread i guess!

anyway, I am feeling calmer thanks to coffee, MN letting me vent and my DD coming home from school. I have just started the very late preps for her birthday celebration and it is about time my family started to take a front seat again. I will concentrate on them for now, what will be will be and what route will happen will happen.

And I lurch from thinking my kidney stuff is something and then nothing. GP thinks it is nothing significant, that many people have stuff like this going on inside without even knowing it and it is usually only found incidentally, my last bloods showed normal kidney function no previous issues etc. However, this guy today said he was not sure, kept referring back to it and how it is probably a red herring, and pain does not suggest kidney, but, when he checked my leg reflexes etc he checked my stomach and sides/ribs quite carefully. I wonder if he was feeling to see where the kidney(s) was? anyway, there was no pain, apart from a very vague pressure into my sciatic nerve, but I think mostly as he was pressing onto my back. He did not show concern, but also, his attitude seemed to be void of expression. So, now I am thinking. Should I be worried? why did he keep on/check? I reckon he was just being nosey as apparantly one kidney has Docs getting their med students in to observe!

I'm sure your kidneys are fine too. Surely your blood tests would be abnormal if your kidneys were causing problems. It's just one extra layer of crap to wade through.

Is your dd's birthday today? I hope she has a lovely day.

I know deep down my kidney(s!) is fine, as I am almost 35 with just the odd UTI in my lifetime, normal blood results etc. Like you say, just another thing to bother me until I know for sure. And, another thing for the docs to fuss about instead of what they should actually be concentrating on. but hey ho!

Not today, next weekend but have not sorted anything for it, inviting people to her 'do' yet. So getting on with that or else nothing will be happening! Now, if I had left it until today, that would be really disorganised of me

Hello again, Pavlov, I had something similar with an osteopath when I went to them about the scar tissue, I think it's something about they look at your body and mind holistically, how things can pull on other areas too eg with pain. I found it a bit annoying when the adhesions were really causing me problems, I was told things like my system was sluggish and not to go down the 'surgery route' rather to try and adapt to them. Like it implies you have a problem not dealing with it properly, so tough when it's quite serious and actually have been offered surgery for it. Maybe the Pain Clinic might be good to have a go at too.

Anyway got back today from laproscopic surgery on Tuesday for (I've now found out) a single adhesive band which had attached in a loop, the small intestine to the abdominal wall. They just went in with a telescope and got it, so really hoping it doesn't return, have been trying to jog on the spot, take anti-inflammatories vitamin e, all in an attempt to aid healing hmm..i know it could return, but in the meantime am glad I had the op as intended without further cancellation, and didn't have to have a re-section, which was something which could have happened. They haven't done anything about the ovary though, on the left is all pinned up with scar tissue they said, they couldn't really see it. They didn't seem worried about it, but I am. It hurts.

I found it much better being a planned op at the hospital, rather than through SAU / A & E, got to see a specialist colorectal nurse for example, which sould have been useful in the past. A quiet small ward too which was good, all in all a much better experience than in the past, oh, apart from after the op when again were no beds ready and got stick in this sort of room where people seem to go after the op- it's like a sort of bus station really- oh and when just going into theatre they put a needle through the vein in my hand and have a massive bruise there- they were very kind though and especially the nurses were lovely.

Best wishes to everyone else going through tests and surgery.

Hello Pavlov, just wanted to add I know how you feel 100%, similar stuff has happened to me so many times. As Mad says, its just layers of crap and you get so tired wading through it.

Mad - ablation sounds scary, but I can understand your relief at getting a date sorted out.

As I have joined sort of late in the day, I am way behind in knowing what people have or might have, so bear with me, I am just making sympathetic noises are the moment!

oh, it reminds me of my pregnancy and birth thread, we had our names, EDD and location and then had to change to name, birth date then location , periodically, there was a list!

For the record, I have (just diagnosed) a herniated l5/s1 lumbar disc (as i there is a tear in the annular wall), other lumbar discs are protruding but not torn (bulging) and all lumbar discs are dehydrated. pain I have is currently acute, but has until these last two weeks been low level and chronic since my last 'relapse' at christmas, apart from flare ups of around 2-3days at most in between. Mostly sciatic pain but also back pain, and currently lots of both. In addition to this, on my MRI scan they incidentally found that I have a fused or 'horseshoe' kidney, which means that while in the womb,my kidneys joined together at the bottom, and did not end up quite where it was meant to. It might, or might not be aggrevating my back problem if there are issues with this (which there are in around a third of people with this defect, but usually that occurs earlier on in life first in the form of UTIs/kidney infections, which I have not suffered from). It is most likely as put by the osteopath, and GP, a red herring and nothing more than incidental. In terms of the system. I have been referred to the osteo by my GP at christmas who has done very little to be quite frank, two lots of acupuncture and a lot of sympathy. I have had a caudal injection (steroid into the lumbar spinal area) to help with sciatica, worked for a short time, given by his boss and recently an MRI.

Oh, and, not sure if i told you all, I have a date for US, 3rd July. Probably did, while high as a kite on drugs over the last couple of weeks .

So, thats where I am at. Nothing at all major compared to some of the very traumatic experiences others have had to face here.

Mhari oh that makes me so much better about what you have said re the osteo. Especially as he said to me 'lets focus on you. this is, after all about you as a person, as a whole, and not just about your back, so lets not think L5/S1. Lets think 'pavlov'. He was extra-ordinarily patronising . I would not mind so much but he has not done a jot of work on my back in terms of ostepathy, apart from two quick sessions of acupuncture while I was already there, in 6 months!

I dont know if I should go to the GP today and chat about it all, about how he seems to be clouded by this sense that I am struggling to manage/am stressed and this is actually why I am pain, rather than I am struggling to manage/am stressed because i am in pain. He dismissed the problem as relatively minor, where my GP was clearly understanding that it would be completely expected for me to have pain, and the consultant dood at the 'back pain clinic' understood that it is normal to have 'flare ups' which this is. This gp is quite straight talking.
What do you all think - go today and chat, different gp, wait til my gp is back (nice but does little) or wait til monday? i guess I want it all done now. which it is not going to be, and that frustrates me.

Pavlov Trying to see the GP today sounds a good idea, if you can get an appointment. My wonderful-yet-just-left-the-practice GP was always happy to make appointments for me simply to chat things through, and it sounds as though kitten had found doing that really helpful last week... and any competent GP will understand that being in pain is stressful, and should be able to listen. Honestly, I do understand how you feel, and the frustration of being patronised and being fobbed off. It sounds as though most of use have had similar such experience.

And mad [nethuns-type-emoticon] about the ablation date... so glad it's not too far away. And glad that your period did arrive in time to justify you declining the initial date... is your DH having a good time away? Consider your hand very firmly held. You have been a fantastic support to so many of the rest of us on here.

bm it is actually very reassuring, although not good, that others have experienced similar. It makes me feel less upset about it all.

And I really do want to thank you all for helping, i know I have taken a lot of thread time to rant, and really appreciate it. You are all going through enough stuff of your own and yet still take the time to support others

and I hope you are able to build a relationship with another gp like you had with your most recent one.

I'm still feeling really well, but still losing weight, and fast... so much so that I'm now significantly underweight. A colleague breezily told me yesterday that there's a rumour circulating the office that I'd been off work so long due to an eating disorder. Oh fab

Given that the exact same weight loss happened last time I took Prozac I'm not surprised, but I know that I cannot afford to lose any more. And given that I've been here before... yes, I know how to gain weight, and it does involve eating more. But I do find it hard to do. And after all I've been through with the surgery and the pain, it feels like yet another thing to cope with.

Does anyon have any tips? I might start a more specific thread...

Ooops x-posted with pavlov... thanks. You'll see from the previous thread how much ranting I've done on here!

At the moment I can't ever imagine ever, ever finding another such understanding GP. But moving practices at this point would be such a faff that I'll start by trying her colleagues...

Quickly popping in between weather gazing.
Mad, that is ace about your date :) remember, it is only very teeny little burns. We'll be here for you.
Pavlov - I'm going to have a good read later rather than just skimming now but I'd consider carefully bout what you need from your gp appt and whether you are likely to get what you need today.

Hi all,
Thought I'd pop back and give an update,
I've now been for my referral at the royal free and saw an expert in neurosarcoidosis, he's getting me in on the 9th of July for 5 days of tests to see which organs are involved and grade them? Then will come up with a treatment plan.
It's such a relief to talk to someone who knows what theyre talking about,
I'm still seeing the local hospital too, for check ups but it looks like the new consultant is going to coordinate things.
My breathing isn't too bad at the moment I had pleurisy a few weeks ago but it's on the mend
And other good news is I'm getting married tomorrow. Very nervous and excited :)