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apologies for another post about this but I feel extremely vulnerable

AJLang

AJLang

Well-Known Member
Relationship to Diabetes
Type 1
Received letter from neurosurgeon today. Extracts include:
nerve conduction studies which show severe sensory and motor peripheral neuropathy consistent with known diagnosis of diabetes
MRI of cervical spine shows a disc at C5/C6 level which is abutting the cord effacing the CSF space around the cord. The [spinal] cord is flattened and there may be some signal change within the cord itself.
C5/C6 ACDE operation discussed but I cannot guarantee that that will improve your symptoms as there may be some overlay of the diabetic neuropathy as well.
It may also be that the paralysis is caused by the C5/C6 disc but again there is no guarantee of this.

Obviously this is in addition to my other health issues.
I'm so trying to embrace each day at a time but worried sick with the symptoms of this that are getting worse along with the changes to PIP as we're also reliant on carer's allowance. I ftry tofight so hard but never seem to win anymore.
 
dont know wot to say hun am sending you lots of love and hugs Wish i could do more
love gail
 
It is totally understandable that you feel anxious and vulnerable Amanda. There is so much happening that is out of your control and that must be really scary. I think all you can do is take one day at a time and try to focus on whatever good things you can do and ignore the bad stuff that you can't do anything about.
I am not medically trained so I can't comment on all the technical stuff in your post but I wonder if a second opinion of a highly qualified professional might help you in terms of accepting the decision you have made not to go for the surgery or perhaps change your mind.
Much as we would love to, none of us can change the bad luck you have been dealt health wise, but I am sure we can all greatly sympathise with your horrendous situation and I honestly think that you are an incredibly strong person mentally to cope with it as well as you are, but totally understandable that the impact of it will keep hitting you in waves. Hopefully you will gradually get better at dealing with those waves of vulnerability which I imagine are very similar to grief but it will take time as all grief takes time to process.
Sending (((HUGS))) as I have nothing else to offer except to say that we are here to listen and empathise. XX
 
I think a second opinion is a really good idea. Also, sometimes writing things down - pros and cons, definitely nots, priorities, etc - helps you get clear in your mind about the best way forward for you.

Wishing you the best as always. You deserve some luck and I really hope something helps you even if only a tiny bit x
 
So sorry that the letter has confirmed your fears that your neuropathy and spinal issues will not improve.
You have had such a lot on your plate it's not surprising you feel vulnerable and anxious.
As Barbara said, you need to give yourself time to deal with the impact both emotionally and practically. Try not to worry about the PIP changes at the moment. Easier said than done, but focus on you and your family 's wellbeing. You have shown a lot of resilience and have the support of people here too.
Sending you much love xx
 
Thank you very much everyone, your support and suggestions are very appreciated.
I also value the suggestions about getting a second opinion. However, it's at times like this that I put on my "PhD/academic researcher" head and trawl through all of the literature to help guide me. My conclusion is that my body is not strong enough to have surgery that takes a minimum of 6-12 month recovery, no guarantee of success or preventing further surgery, it won't reverse what's already happened plus the risks associated with the actual time in the operating theatre. Nothing that I've read contradicts what the neurosurgeon said so I need to focus on managing the symptoms and dealing with minimising the fear of how it may all progress. Obviously I will keep an open mind if things worsen. I just need to remain as positive as I can xxx
 
Much love to you. You have a good grasp of the science which makes it very stark for you (sometimes ignorance gives us a buffer). You don’t need a second opinion about the surgery but do talk to your GP about how you feel about it all and see if there is any support they can give, whether a visit from OT is helpful to see if there’s anything around the house that can make life easier or which you might need in the future. It can help you to cope if you can see you may have options further down the line to make life easier even if you can’t do anything much about the medical side. And please don’t apologise for starting a thread. One of the joys of forums is there’s always someone here and it’s by choice so anyone who clicks on your threads wants to be there and to support you.
 
AJLang said:
I'm so trying to embrace each day at a time but worried sick with the symptoms of this that are getting worse along with the changes to PIP as we're also reliant on carer's allowance.
Click to expand...
You’ll be fine with the pip changes, if you need a carer then you’ll get 4 points in one item for needing a carer help and you’ll keep your pip.

It’s people like me that will lose pip, I get 4 points for mobility as can’t walk 200m, which means already no mobility award. For daily living I get 2 points in 4 categories but don’t score 4 points in any category, because whilst I need assistive devices I don’t need a carer. That means today I get standard daily living only, which I spend on taxis. From the changes coming in I’ll stop getting anything. People who need a carer to help with daily living tasks should continue receiveing though
 
@AJLang - It must all feel very stark reading this in black and white. A discussion is different, and I think sometimes our brains protect us from the hard stuff by making some of those conversations a bit fuzzy and grey in memory.

Were you talking to my OH just now, he would be very sympathetic to your plight, but he would also ask you what changed today from yesterday, aside from words on a page. He would also suggest you put the letter somewhere safe, and accessible, but just to take a day or two to get over the body blow of the black and white.

I think you are very brave to take the decision to reject surgery at this point. I'd be inclined to think were I in your shoes, I'd want the surgery, but I'm not sure my decision would necessarily be based on the a sensible and rational thought process. You are a strong woman.

Take it steady AJ. You have had a lot on your plate for a long time, and now more, but you'll handle it in your own way. I truly believe that.
 
AJLang said:
I'm so trying to embrace each day at a time but worried sick with the symptoms of this that are getting worse along with the changes to PIP as we're also reliant on carer's allowance. I ftry tofight so hard but never seem to win anymore.
Click to expand...
No idea how long your award was for AJ but no changes will be made until the end of your award and reassessment. If on the assessment you scored 4 points in any of the daily living questions then you are again safe.
IE if you have higher rate and scored 4 points for one question and all the others added up too either 8 or 12 then you have nothing to worry about.
Do go and check out the benefit forums for reassurance and take no notice of the scare mongering the press so love to tout.
If you have a 10 year award then just stop worrying as it's a very light touch review as in the office staff tick a couple of boxes and renew.
 
Hi @AJLang

Sorry you are in this position and all I can add is and as others have said, a second opinion may be worthwhile if only for clarification
 
Pumper_Sue said:
No idea how long your award was for AJ but no changes will be made until the end of your award and reassessment. If on the assessment you scored 4 points in any of the daily living questions then you are again safe.
IE if you have higher rate and scored 4 points for one question and all the others added up too either 8 or 12 then you have nothing to worry about.
Do go and check out the benefit forums for reassurance and take no notice of the scare mongering the press so love to tout.
If you have a 10 year award then just stop worrying as it's a very light touch review as in the office staff tick a couple of boxes and renew.
Click to expand...
Thank you @Pumper_Sue for the reassurance. Although I got the full 24 points for mobility I only received 11 for daily living with the highest being a 3. I didn’t appeal it at the time because I didn’t have the energy. It was a 5 year award which ends in July 2026.
 
AJLang said:
Thank you @Pumper_Sue for the reassurance. Although I got the full 24 points for mobility I only received 11 for daily living with the highest being a 3. I didn’t appeal it at the time because I didn’t have the energy. It was a 5 year award which ends in July 2026.
Click to expand...
The changes don't take place until November 2026 if I remember correctly and as you were only one point short for a full house (higher rate) it might be worth your while taking some advice from CAB or another organisation to see if it's worth your while putting in for a new award now due to change in condition ie your condition has become worse. suspect you would achieve the 12 points needed and receive a 10 yr award .
it's 12 points for high rate mobility and 12 for high rate daily living.
If you didn't do it at the time ask now for the assessors report as you will get all the scores and the reasoning for the points given.
This gives you a head start on how to improve your scores.
Must admit I was shocked when I read my assessment report, and rang the DWP to say it wasn't correct pointed out the errors and fully expected the award to be lowered. But no they left it as awarded and thanked me for my honesty saying quite cheerfully I was only going to get worse which was taken into account.
 
@Pumper_Sue - sorry Sue, you know I have a weird sense of humour, and when I read you telling us about the DWP's response, I instantly remembered Ian Dury & the Blockheads single, "Reasons to be Cheerful" - and let's face it Ian was a polio survivor in the first place so always physically disabled and was fully aware that the chances of him reaching ripe old age were low - and it's actually the 25th anniversary of his death right now - of liver cancer.
 
AJLang said:
Thank you very much everyone, your support and suggestions are very appreciated.
I also value the suggestions about getting a second opinion. However, it's at times like this that I put on my "PhD/academic researcher" head and trawl through all of the literature to help guide me. My conclusion is that my body is not strong enough to have surgery that takes a minimum of 6-12 month recovery, no guarantee of success or preventing further surgery, it won't reverse what's already happened plus the risks associated with the actual time in the operating theatre. Nothing that I've read contradicts what the neurosurgeon said so I need to focus on managing the symptoms and dealing with minimising the fear of how it may all progress. Obviously I will keep an open mind if things worsen. I just need to remain as positive as I can xxx
Click to expand...

So sorry to read this @AJLang

I know how hard this news has been to deal with after a long sequence of knocks and setbacks.

So difficult and there are no easy options available to you it would seem. Sending every good wish your way that you are able to remain strong, and stay positive. <3 :care: <3

Fingers crossed for you if you opt for a reassessment of your PIP award in the light of your changed circumstances. If you were awarded more accurate points based on how things are now, which led to a little security for a few years, it might at least offer you a small comfort in these difficult times.
 
I couldn't make my life up at the moment and I'm feeling so sorry for my partner Mark.
We went for a lovely trip yesterday to a beautiful place called Foxton Locks. Lovely and peaceful with gorgeous weather and beautiful drive through some countryside we hadn't seen before.
Just as we were getting home my brain couldn't think and then I couldn't speak at all. That's normal for me for a few minutes at a top time. Neurologist thinks it's migraines.

Except yesterday the inability to talk continued and continued and continued. The only way I could communicate with Mark was by typing on my phone. Very frustrating. After 45 minutes Mark phoned 111 for advice. They sent an ambulance!!
They phoned the oncall stroke team! (at this point I'm thinking that you couldn't make it up after everything else that's been going on health wise). 3.40pm in an ambulance with blue lights! 4pm Could start talking in a whisper but that was it. No room in hospital so stroke consultant, stroke registrar and another doctor came to ambulance. All getting a bit surreal by now.
Had an urgent CT scan.
By 5pm was back to talking normally and was told if CT scan was normal I could go home. Yay I thought.
CT scan was normal. But now they want me to have an urgent MRI scan and to go onto clodiprogel until an urgent stroke appointment within the next fortnight.

Unfortunately I literally can't do the MRI because I am totally claustrophic and still have flashbacks to the last time I tried one. All other subsequent MRI's over the years have been in an open upright MRI. So I phoned the private people but they said upright MRI unsuitable for checking strokes as not strong enough.

So I can't do the MRI and the side effects for the clodiprogel look risky, especially given hat I already have bleeds on the
eye.

Mark and I talked last night and I worry for him about what is happening to me. We've both agreed that I cannot do the MRI and that I will think over the next few days about the clodiprogel. I already take long-term aspirin as I precaution (I know that I have to stop the aspirin if I stop the clodiprogel).

On another note, that may relate to this. I had a neck cartoid artery scan two years ago and that was totally normal and clear. Cholesterol last week was 4.3 and blood pres normal. But I am overweight and do enjoy my wine. So going to try to drink little and in turn that could help me lose weight.

Sorry for the long essay. At least I hope, it shows that brain is working as I can type this 🙂
 
It never rains but it pours. I’m so sorry you’re going through all this. I hope you get some answers as to what it likely was.
 
Oh my goodness @AJLang 😱 :care::care::care:

Do you think it may have been a TIA?

Cutting back on alcohol is generally a good move health-wise. Shame it’s so enjoyable really!
 
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