Support thread for those awaiting medical appts,tests and surgery

[ohyouBadBadkitten]

It seems that there is probably rather a lot of us who are impatiently waiting to see consultants, have tests or waiting for surgery. So a thread for you to vent in or post your 'hooray's'

me. Am waiting to see my cardiologist. been a bit of a catalogue of delays and getting lost in the system. I have a wonderfully supportive gp who has just calmed me down after me losing the plot a bit when I found I wasnt on the appt system.

How about you?

mhari i am going to gp this morning to discus meds and will be asking for referral to pain clinic. He was meant to refer me in the first place and for some reason I ended with an osteo referral instead...i presumed this was the place, and realised not when they could not prescribe drugs!

oh and I agree about knowing. it is like stuff is done to us without us being part of it all, it is so absent of realisation that we are people, not just bits of x-ray or scan in a folder to be looked at. the person asking for those results is the person whose life is put on hold while waiting, yet those with the results can be so flippant about it. its about US!

Hi Pavlov, I think we chatted on another thread a while back.
I've been back and fore pain clinic outpatients, and also see them when I'm an inpatient.
I've tried every sort of combination (of the medication that I can safely take).
Currently on fentanyl and oramorph.
They take the edge off but I still experience a lot of pain.
I tried gabapentin for nerve pain but had allergic reaction (face, head, mouth swelled up). I tried pregablin, didn't help that much (and not worth side effects as barely any benefit), and tried amytriptiline and it did nothing.
Some pay say though it's really helped them.
I'm hoping my next spine op may help reduce some pain, so they can take the pressure of part of the broken bone pressing on nerve.
I'm also waiting to be assessed for an intracathetal pump, where they would put a pump/tube straight into spine and deliver morphine (or whatever) straight to the area. Also going to assess spinal cord stimulator but don't even know if suitable. I find a TENS irritates my nerve pain, so very skeptical about SCS.

I go into hospital next Tuesday, then op on wednesday to remove lump/tissue from left breast, then they will reconstruct (but I'm not having implants coz it will probably require more future breast surgery)

Pavlov, do you have a spine consultant? Coz they were the people who first prescribed me pain killers etc (in hospital) then out of hospital. Then once they were stuck on ideas, referred me to pain clinic.

I find hospitals utterly disempowering too, and hate how low a priority informing me of test results can be, even when it's potentially life-threatening or holds potentially life-altering consequences for oneself. But I have stopped taking it personally, and ceased to feel guilty for pestering secretaries and admin people a bit when needed... I think they all know, deep down in themselves, that if they were in my position they'd be doing the same thing and rubbing against pretty much the same obstacles.

Sending mharhi and ginger and Reeny lots of unmumsnetty-type hugs for weekends spent in anticipation of next week's appointments and surgery.

I saw my GP for the last time tomorrow... she's moving . Certainly, we'd had our differences, but she was a fantastic advocate and very caring, honest and compassionate woman. I will miss her.

just waving for now. Got MRI scan results from GP. I am trying to figure it out, will post more later, seems it is a degenerative disc problem (ALL my lumbar discs are affected ).

Got some nerve pain medication, cant remember the name right this second, gebantin? prescription not in front of me. He has given me 100 tablets. I take that to mean these are long term...

I also have Utrasound scan appt for kidney stuff on 3 July, quite quick considering how long lots of people have had to wait. I am less concerned about this kidney malarky at the moment, not much going on negatively with my body in that respect and GP not concerned really.

It is all a headspin. I feel very very low. especially as kayaking is still off menu for now. Maybe forever . So it seems right now. So, Despite me wanting to just go to bed, let DH do the school run before work and put tv on for the kids while I wallow, I am going to force myself to take them to a friend's house and drink coffee while the kids play.

reeny quickly, no spine consultant, how on earth do I get one as GP does not seem to be wanting to refer me anywhere other than to continue seeing osteo for some unknown reason. I might call him back in a minute.

Pavlov Sound like a huge amount there to take in, especially when the words 'long term' and 'forever' creep into a discussion. I didn't know you were a kayaker. But I know there have been others on this thread whose illnesses have got in the way of their hobbies and interests... it's tough.

In the immediate term, though, is there any possibility of you seeing another GP? It does sound as though you could do with someone a bit more pro-active or assertive...

ok so I now know why my gp was quick to dismiss without referring anywhere. He went on holiday! I called back to question if there should be another referral somewhere or other since I saw him this morning he is on holiday for two weeks. there is another gp at the surgery back on monday, she is rather frosty.

So I called the osteo surgery where i go, and it seems this is the back pain clinic, just not at the hospital and the Doctors running it are ostepaths as their main speciality (main osteo is also a gp at the surgery). So, I guess I am in the right place after all. I have asked the main doctor to call me back to see what the options are, if physio is an option as well as pain relief.

BM thank you. I think, but not 100% sure, that what the clinical jargon is saying is, Degenerative Disc Disease. It certainly seems that way. Dehydrated lumbar discs all protruding, only one annular tear L5/S1 (seems common) with central broad based protrusion (across the area, explains bilateral sciatica I think), and some 'schmorl' nodes which look like they are protrusions into the vertebrae, rather than out. Not sure what that means how important that is, as vertebrae are apparantly in normal alignment and position. I worry though that if there are no proper discs holding them in place, what the long term implications are. But that is not for now.

As there is no apparant nerve impingement, the gp's opinion is learn to manage it and avoid things that can increase risk of further tears/protrusions (ie my 2yo I said?!). He said it won't improve, there is nothing I can do to help hydrate the discs, and they may dehydrate further. Marvelous.

Glad you're pursuing this. I hope you get the phone call back before the weekend.

Hi I hope all is OK. For some reason my phone will not let me browse up over so all I can see it BM last post :( . I hope all is well and hopefully my phone behaves soon and I will see above.

I had my Neuro and the Surgeon on the phone today. My Neuro said he can not do anything for me at the moment until I have given birth but he does not recommend a vaginal birth as it will build my pressure up too much and could make me blind, He also does not recommend any pain relief in the back of my back as my shunt is in that place.

As I know people with both of my illnesses can give birth Vaginally I phoned my Surgeon up and he said he can't see why not but he advises no Epidural or Spinal Blocks unless its placed by someone with the knowledge of Shunts and we will discuss this closer to the time. My Surgeon also give me my date for shunt surgery which is on 30/8 at 12noon :( it is 6 days before DD's birthday. I need to go in and speak to him and the Anesthetists in July.
The Surgeon has operated on pregnant woman and the baby is checked on a lot and it is safe. I'm more nervous for this surgery then I ever have been :( I know it will be easier getting it done whilst I'm pregnant then I'm not away from my DC when it is born and my DD. I will be roughly 18weeks for surgery.

I've heard that around the 16-20 week period is believed to be the safest for anaesthesia... though I'm really not surprised you're so nervous.

How are you getting on with the pregnancy now?

How is your vision at the moment?

(My last post was just a quick reply to Pavlov!)

BM he called back this evening! we had a good chat. discussed the results, he re-assured me it was not all doom and gloom and while it will not improve, I can reduce the episodes of acute pain, and now we know the diagnosis I can have some physio (or rather, will be shown some exercises to do). Still have the appt next week with osteo and he says that doc can go through things with me. He said it can't be fixed but the pain can be managed.

Really pleased he phoned... in my experience, Friday afternoon can be the worst time for getting hold of anyone in any workplace in any context me included probably so I'm glad the doctor took the time to chat to you and offer some hope. Did he have any thoughts on anything more you could be doing to manage until next week's appointment?

It's almost time to start a new thread! I can't believe it...

morning mb not a jot, he is leaving that to others I guess. He simply said when I feel able start some simple exercise, but like 5 mins a day, he said pilates was great (he said that before) but just a couple of minutes of the things I can do, don't leave it til i feel 'ready' to go back to a class or else I will go backwards weeks.

how you feeling this morning

Backpack, thats a lot to digest for you. How are you feeling about it this morning? It sounds like you have a surgeon that you can really trust. I guess, its just one step at a time.

Pavlov, glad you got to have a chat and hopefully it seems more positive now, though it is a difficult diagnosis to get your head around.

Feel rubbish this morning. Exhausted and big arthritis flare - very stiff and sore. pulse was racing for much of yesterday morning. dh has been poorly this week so I'm probably fighting his bug. Busy busy weekend - just want to go to bed :(

Good morning. I'm feeling a lot better than I ever have in a while... not quite so tired, so I think the Prozac is starting to work. Mood-wise, though, still slightly odd - sort of whizzy and bouncy - and I've also discovered that I've lost quite a lot of weight in the last fortnight which I couldn't really afford to lose... but I nevertheless think it's worth cautiously persevering for now as nothing else so far has helped with the tiredness.

How's everyone else?

Ooops x-posted with kitten Sorry you feeling so rough. Do you need to get out of bed?

Its utterly brilliant that you are feeling so much better :) just keep a bit of an honest eye on yourself.

I could have bowed out of today (I very nearly did), but it would leave others in the lurch and I'm already down on help due to other people being poorly or double booked.
Tomorrow dd has something on that is quite a big deal and she could do with support and metaphorical flag waving. No lie in either as its Fathers day and poor dh didnt get much of a birthday due to me being not well. He's feeling rough and could do with a bit of pampering (he was out of the door at 7:30 this morning to take dd to the stables and go off and do shopping poor chap)

I think I need to muddle through some how and just rest at every opportunity.

Backpack, there were similar concerns about me having a vaginal birth when I was pregnant, particularly with dd2. In the end, I was told that for me a vaginal birth would be safer than a c section, but that the pushing stage was to be limited to 10 or 20 minutes, I forget which. After that, then I would need an instrumental delivery. As it happened, I did need a ventouse delivery with dd2, but apart from her having a massive bruise on her head, she was fine, and so was I.

Dd1 came out in about 3 big pushes, because I had avoided an epidural, but with dd2 I had a bad reaction to an induction, and my womb clamped down into a contraction which couldn't release. Understandably, dd2 was not too happy about this, so I was prepped for an emergency c section, including having a spinal block. Luckily the doctors managed to stabilise my labour by throwing salbutamol down my iv line to relax my mega contraction (not so good for my heart), so I went on to have a vaginal delivery. The c section level of pain relief meant that I couldn't feel any urge to push, so needed help.

Have you decided which hospital that you are going to be booked into for delivery? Is it the one where your surgeon is based, or is that just too far away? For me, I didn't choose my nearest hospital, because it would not have been able to cope if I had had an emergency event. I didn't choose the hospital that my cardiologist is based at either, because that was just too far, but went for one inbetween which has an excellent cardiology and surgery department, plus very good obstetrics.

Pavlov that sounds tough news although positive to hear the things that can be done to help. BM yes glad to hear it is not just me feels like that about the hospital, they didn't phone me back and then I felt guilty when the sec said had been in surgery, me pestering on when probably saving someone's life..

I took prozac before and found lost weight on it, which is interesting as vaguely remember reading meant to be opposite effect..although could be wrong sorry! Bit stressy here..it made me bit zingy though, found needed to swim or something but then, if you can do that a little it's also good for endorphins. Hope it helps you I found it the best antidepressant, after having to try a different one as they wouldn't let me take it while breastfeeding. (I think preg ok though can't remember)

Hi to everyone else too, hope you have a good weekend, despite the goings on. I'm struggling to think of something to do for father's day tomorrow

Wow... the end of this thread. I cannot begin to express how much this thread has meant to me, particularly in the weekend before the surgery, in the early dys afterwards and in the really desperate days which followed. Thank you all for enouraging me to keep persevering through all my fears and through all the glithes in the system for the medical care I've needed. Before hearing all your experiences on this thread, I genuinely believed I was the only person ever to face lost test results and delayed appointments alongside the excellent and supportive and thoughtful care the NHS usually provides.

So thank you all. I hope you don't mind, but I've already started a new thread here..