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Possibility of delayed pain management.

Guzzler

Master
Messages
10,577
Type of diabetes
Type 2
Treatment type
Diet only
Dislikes
Poor grammar, bullying and drunks.
I am due to have cordal sacral injections tomorrow lunchtime. On moday morning during a shower I noticed a patch of very dry skin close to one of the injection sites. As I had one scheduled procedure cancelled because of this in the past I lathered a moisturiser over the affected site and hoped for the best. It seemed better yesterday morning but just now I checked and the skin has broken and there is a small scab. I know that they will cancel my procedure due to the risk of causing menigitis by introducing bacteria so close to the spinal cord but I cannot beleive my bad luck.
I have been bedbound for over two weeks with increasing pain and have been counting the hours until my appointment. I do not know what will happen now. It is almost impossible to get an appointment with one of the seven GPs at my practice but I know that I can't carry on like this. Coupled with the fact that I do not want to start on opiates and that I am struggling with another area of ill health, I do not know where or who to see for help.
I do not expect answers from you all, I just needed an opportunity to tell someone.
 
Guzzler I have had nerve damage for the last 15 years but at first it was thought i had carpel tunnel and a trapped nerve in my elbow. In 2015 i had a SPK transplant which went well but with my sugars returning no normal level the nerve damage that 36 years came to light before the op i was taking paracetamol and when the pain was bad tramadol. After 4 months post-op the pain was getting to much as i was taking 8 paracetamol and tramadol a day, so they put me on amitriptyline and pre gabaline.. These made no difference apart from putting weight on, so i was referred to pain managament who gave me a lidocaine infusion every 6 weeks which dulled the pain for 7-10 days. It has been 2 years now and my infusion are every month now and we are going to talk in the new year about increasing the dose. The pain is all over my body but the main problem is has effected my bladder and bowel and there is nothing there can do, most days my hands and from the knee down go numb at some point which is not nice when you stand up and then fall to the ground because you have no feeling. All the consultants i see and there is a lot of them say it is caused by the diabetes and this may be as good as it gets but i have no choice as a single father of two i have to keep going for them but i no we as a family are missing out on things that we could do. That is why i try to plan things for the week after my infusion, i am a man but sometimes i cry with the pain and think my kids are missing out on things other fathers can do but they love me for what i can do and over the years i have only missed a few important things that matter. I even went to a parents evening with c-diff and was in so much pain that my parents came to the school in an ambulance to take me to hospital to the amazement of my children and about another 300 people who watched me get carried in to the ambulance. When my children came to see me in hospital they were both in tears and told me i was never to do that again but i said i am your dad that's what i do, to which they told me that they like their dad to be well and not to go to parents evening when i am supposed to go to hospital. So do not give up and keep pushing the doctors and if you are bad in bed then get them to come and visit you.
 
Overnight I have resigned myself to the fact that the procedure will not be carried out. Although the affected area is healing it is not clear and it is far too late to cancel. I will go to the hospital which is in the next town (costing me over £30 in taxi fares) as to miss the appointment would risk even further delay. My anxiety level is high if only because I have no idea how long I will have to wait for another appointment.
Pain level this morning has eased a little and it has surprised me that I have slept comparatively well, I fell asleep listening to a Two Keto Dudes podcast with Prof. Noakes!
 
Is this injecgion instructed through a consultant @Guzzler ? If so call your consultants secretary NOW. Explain everything and he/she will sort this out for you and write it clearly on your notes. Ask secretary if you can have the next cancellation, others must be experiencing similiar.
Please let me know you have called the secretary and the outcome.
This can be solved.
 
Oh@Guzzler,you need a big hug,just a gentle one so as not to cause you even more pain.Im so sorry you are having such a bad time.Pain is so debilitating and you must be feeling very low today.Vent away on here!Hope things improve for you and they are able to do the procedure,so that your pain eases.Well be thinking about you today,take care.
 
I'm going to tag @DCUKMod for more support. This can be improved apon, for sure.
If no money for this call @Guzzler use internet to acquire your consultants e-mail address and e-mail them, try and print a copy off for your records of their response and your attempt at communication.
 

The procedure is carried out by a Consultant Anaesthetist under xray. He will report it in his notes, a secretary can only report cancellation. I was told this by my former consultant who refused to do the procedure (it is basically three epidural injections) due to Erythema Ab Igne, at that appointment my skin was not broken but extremely dry and he said it was far too great a risk. He was very apologetic but I understood the reason, however, on leaving the hospital I burst into tears. At least today I am prepared for the same eventuality.
My thoughts right now are that at least I don't have to bare my ar** to two strange men.
 

Ickihun - Whilst I am very keen that @Guzzler receive their treatment asap, I'm a little unclear what your expectations of me are at the moment.

It sounds, @Guzzler, that when your injection was deferred a previous time, that it was for reasons of your own safety and well-being, which of course can be difficult to rail against.

I agree that a call to the Consultant's secretary is likely to be the the best way to a full disclosure situation, but there is also a risk that you, Guzzler could be making clinical decisions for yourself, without the benefit of the Consultant's expertise and close examinations/assessment of the situation.

Were it me, I'd be inclined to make the call, and or the trip to the hospital, but then I am neither experiencing your pain, nor am I fortunately, bound to taxis for appointments.

It is, of course, too late for tomorrow, but making reference to an appointment letter for myself for an NHS clinic, I am told that should I need transport to attend, I should contact a particular telephone number, as soon as possible so that this can be arranged.

I appreciate that waiting for transport to or from a hospital, when in pain could be very uncomfortable, or inconvenient, but don't they have such a service where you are based?

If anyone can be clearer on their expectations of me, I would be happy to help, where possible.
 

The appointment is for 12.35 today. Of course, I will attend. The affected area is close to one of the injection sites but the consultant may (fingers crossed) deem it far enough away to go ahead with the procedure. My worry is that it may be a bedsore, which I have never had but he will be able to tell me. As I said previously, he will put the reason for any delay in his notes whereas a secretary will only report a cancellation.

I am grateful for ickihuns advice but I have had time to consider my decision since yesterday and had decided to go ahead and attend rather than cancel. As you say, it is ultimately the consultants decision whether to go ahead with the procedure or not.
 
Just another pair of ears, which I know you are helpful in such predicaments. Thanks.
 
I'm pleased you feel more comfortable about your decision. Wishing you all the luck.
As my partner says "things are never as bad as we think or imagine".
I'm sure it will be adventageous whatever the outcome.

I hope your pain becomes less severe for a bit longer this time.
All the best.
 

Thanks, lass. Much appreciated.
 
In my area of Wales, hospital transport or assistance with transport is difficult to find, and anyone not fulfilling certain strict economic criteria, and often age related criteria, are not eligible.

My husbands recent treatment cost us £60 in taxis in total, as we would have had to take 3 buses and spend over 5 hours travelling and waiting for buses, and stop overnight and get another 3 buses back the next day.

Sending positive vibes for you @Guzzler
 

Fingers crossed for you Guzzler. A deferral is such a blow, if it happens, but sometimes the alternative has such significant implications.
 

I am eligible for Patient Transport but I loathe it. One point in particular about PT is that it is such a faff to organise it when you need a chaperone even when the advice to have a chaperone is made abundantly clear when having such procedures. My son has had to take a full day off work to accompany me, he booked this in advance so another reason not to cancel. Thanks for the hug, much appreciated.
 
DCUKMod said:
Fingers crossed for you Guzzler. A deferral is such a blow, if it happens, but sometimes the alternative has such significant implications.
Click to expand...

Thank you for the support. At least this time I am prepared for it.
 

Thank you, lass.
 
Will report back later, fingers crossed and thank you all for your support, you are Epic.
 
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