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PIP for vestibular disorder and eagles syndrome 1 month 3 weeks ago #264566

Dear The HUD,
Thankyou for your reply. It sounds like you have a pretty good understanding of some of the problems I have related to Eagles. The symptoms are a little bonkers and it is so difficult to understand let alone explain. I have pretty large Eagles. Last measured in 2018 as 6cm on the left and 8 on the right, I am on the list for a CT with high contrast which should give more detail as to where they are. I know where they are though because I can feel them protruding into my throat. I can literally flick the one on the left with the back of my tongue! If I gently press under my chin, I feel something pushing my tongue and I cough like mad. I have been told they are impinging on the carotid and this as well as a skull abnormality squeezing the internal jugular gives rise to raised intra-cranial pressure. Odd symptoms such as face tingling, numbness, palpitations and chest pain are apparently because the styloids are squishing all sorts of cranial nerves and reduce blood flow. Also irritating the vagus nerve. But, even though this has been discussed with my consultant and he has explained the bizarre symptoms I do not have this written down. I simply have the diagnosis with very little evidence of the effects. My GP does not 'get it' either and although she has written a report about some of my difficulties she refuses to comment on the conditions themselves. Having read your post, I am going to start a daily mantra " its not the condition...".
Surgeries
Some surgeries have been mentioned..
Removal of the styloid left and right ( 2 separate surgeries)
Resection of the transverse process of the C1 to improve right intracranial flow.
Superior semi-circular canal obliteration ( Sounds awful)
So 4 surgeries have been outlined, each carry risks of further damage, may not work and even if successful will not resolve all symptoms until all 4 surgeries have been completed.
But, there is no actual plan for surgery yet. I fall into a category which is complicated and it is unusual to find someone with a combination of these conditions ( Probably not that unusual, just undiagnosed). He has identified a cohort of about 30 that he is aware of. Therefore the consultant is delaying any surgeries until he can discuss with the MDT and seek advice from other experts in the field. At that point I guess we will decide which one to go for first? So the timeline was a long one anyway considering no clear clinical pathway, the amount of surgeries required and the amount of healing and recovery between surgeries. Covid though has really disrupted the timeline and I am been told not to expect even the CT scan anytime soon let alone surgeries. Will the possibility of surgical intervention ( at some point in the future) mean that PIP may not be awarded in the interim? Crikey, this is a worry.
Thank you again for your reply.
Take care
A

PIP for vestibular disorder and eagles syndrome 1 month 3 weeks ago #264591

Hello Alea,

Any evidence you wish to submit as part of your WCA should be sent direct to the DWP, not submitted via your journal. Confusing – I know! This could include a letter from your GP stating that you should be given a telephone assessment since a face to face assessment would cause you overwhelming distress. (If you are able to get such a letter then I would suggest that you also let your work coach have a copy since it supports your requests for reduced attendance at the job centre. Since you cannot use a portal, just hand your work coach a hard copy next time you see them.)

If you are finding that your current commitments are detrimental to your health, it is worth trying to explain that to your work coach. Rather than just ask not to do things, perhaps you can suggest to them alternatives which would be healthier for you and hopefully acceptable to them?

You suffer from conditions which are less common. I just googled them to find out more. It is quite possible that your work coach does not have any appreciation of what life is like for you. If you go to our PIP resources page PIP resources and scroll down a little you will find a heading ‘PIP Diaries’. At the bottom of that section there is a template. If you use that, or something else, to record over a week the impact your conditions have on you, you just might find that your work coach is a little more sympathetic.

Catherine
The following user(s) said Thank You: Alea
Nothing on this board constitutes legal advice - always consult a professional about specific problems

PIP for vestibular disorder and eagles syndrome 1 month 3 weeks ago #264612

Hi Alea
I have problems with my balance &hearing. I had a home visit from a physiotherapist to assess my trans from dla to pip. She had no understanding of how debilitating my condition is. I was on high rate dla for both care & mobility. After her assessment I went from high to lower care & nothing for mobility for 2 years.My ENT consultant issued me with a strong letter to support my claim. Changed to high rate again for both on the Mandatory review. I hope this will encourage you to appeal.
Kate
The following user(s) said Thank You: denby, Gary, LL26, Alea

PIP for vestibular disorder and eagles syndrome 1 month 2 weeks ago #264916

I THINK THAT YOU ARE BEING BULLIED BY THE VERY PEOPLE THAT ARE SUPPOSE TO BE HELPING YOU SEND A LETTER TO THE SECRETARY OF STATE WITH ANY EVIDENCE THAT YOU HAVE AND ASK FOR THEM TO INVESTIGATE THE PEOPLE THAT ARE NOT SUPPORTING YOU. TIN GODS THEY TRY TO BE.
The following user(s) said Thank You: LL26, Alea
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