Neuro surgeon appointment and CCAS ?

[Guardsman68]

Hello friend’s,

I had an appointment with a neuro surgeon yesterday I wasn’t hopeful of anything different than what I had been told before. But I was hopeful of some sort of news that would give me some hope. But the realization soon kicked in once we were five minutes in the room that all hope had gone. So the lesion I have is inoperable as it’s in the brain stem and cerebella and it’s just to dangerous and could make things a whole lot worse if they tried.

As far as neurologist’s I’ve had contact with this fella was absolutely outstanding he explained everything and how my diagnosis of CA had come about so for the first time in ten months I feel that I have some sort of understanding about how I have reached this point. He was very empathetic and generous with his time and answered all the questions my wife had which was important that she had these. My wife and I were with him for 90 minutes which is unheard of as with my usual neurologist I normally get 15 minutes and the door opens so that’s me done for four months.

But I must give a big shout out to Fallguy for his recent post regarding his CCAS diagnosis. I asked the question and I was surprised that the neuro wasn’t familiar with this but to his credit he went off and found out what it was. I informed him that I was having CBT when I attend the neuro rehabilitation unit which I go to twice a week for physio and the therapist had mentioned FND?? So with this information the surgeon has now made a referral for me to have further tests for a more accurate diagnosis of CCAS but after looking at all my symptoms he say it was more likely CCAS than not.

So thank you to fallguy for putting this information on here and to everyone else for the vital information and positive messages always posted here 👍🏻

My message would be don’t always take what the neurologists says as gospel as from my experience they don’t always know everything they just want you out their office as soon as you challenge them. keep challenging them as they are so quick to pigeon hole everyone which is so wrong as we don’t all have the same symptoms we are all unique. Keep pushing to find the answers always ask for explanation’s of how and why they come to that conclusion.

Apologies for long post 🥴

Stay strong keep well and never surrender

[paul456]

Really glad you had some positivity with your appointment it makes you feel better knowing that someone understands your condition, the more the medical world understands a medical condition the more help you should get 😊

Good post that and good news.

Keep us all updated on how you get on as everybody on this Website cares.

Who Cares Wins.

[Guardsman68 in reply to paul456]

Hi Paul

Yes it makes such a difference when we have a positive experience with medical professionals as it’s not always the case well not in my experience anyway.

Thank you for the support 👍🏻

NO SURRENDER

[ww-wibblywobbly]

Good that you've finally had a positive appointment. This neuro surgeon sounds great xx

[Bearbonny]

So glad to had such a worthwhile appointment the consultant my son sees at the London hospital is also very good . If only there was more public knowledge about this illness as many people have not heard of it . This illness is so hard to cope with at times . Keep going everything stay as positive as you can

[wobblybee]

🙂 I was once talking to a GP about my ataxia..I was thinking about being tested for Gluten Ataxia. He told me..there’s no such thing as Gluten Ataxia. You either have ataxia, or celiac disease. Then he googled and apologised.

🙂 I’m glad you had such a positive experience.

[Guardsman68 in reply to wobblybee]

Hi wobblybee,

Thank you 😊 yes we have to keep asking questions and challenge the medical world when it comes to ataxia, I was quite shocked at the lack of understanding about the CCAS side of ataxia but hopefully now this neurologist has learnt something new and educates himself and maybe some of his colleagues so they can take the blinkers off and see the whole picture.

Keep well And no surrender

[wobblybee]

🙂 NAF (the National Ataxia Foundation..ataxia.org) have a number of videos on YouTube.On one of them, Dr Jeremy Schmahmann discusses Cerebellar Cognitive Affective Syndrome (about 12 mins in).

He is an authority on the diagnosis ‘Schmahmanns Syndrome’

Unfortunately the direct link failed..

You can log onto YouTube..and search for ‘National Ataxia Foundation Schmahmann’

[Guardsman68 in reply to wobblybee]

Thank you for info I’ll check that out be good to get a better insight of this 😊👍🏻

[wobblybee in reply to Guardsman68]

🙂 You might also be interested in this..CCAS is not new..it was identified many years ago..

cerebellumandataxias.biomed...

[Guardsman68 in reply to wobblybee]

I’ve taken your advice and I’m just watching the video you said and it dates to 2017. See I’m one of the population that had never heard of ataxia until I was diagnosed so The more I’m discovered each day about it I am learning how to deal with it well I’m trying 🥴 if it wasn’t for fallguy post I probably wouldn’t have known about it. But thank you for all your advice I really appreciate it 👍🏻

[Hidden]

Hi Guardsman. I am absolutely delighted that you had a positive appointment meeting with your Neurologist. Having someone who is very emphatically understanding towards your needs must have left you feeling good and wanted. Your Neurologist must have found your case very interesting. I hope you have more positive news regarding your physical and mental needs in the near future. You say you were having CBT. Am I right to think that this stands for Cognitive Behavioural Therapy? I went through this treatment around 25 years ago. I personally found it very helpful. Much better than any form of antidepressants I was prescribed prior to this. I was diagnosed with Cerebellar Ataxia in March 2010. A year later I was referred to the Physical Rehabilitation Unit at the Southern General Hospital, Glasgow for both physical and psychological assessment. I was an in-patient for five weeks. It was after this when I was diagnosed as having Cerebellar Ataxia with Cerebellar Cognitive Affective Syndrome. Wishing you all the best for the future. Take care. Iain

[Guardsman68 in reply to Hidden]

He fallguy, thank you I really appreciate that. Yes it was definitely a positive appointment I wasn’t really expecting anything to come from it but I was given a glimmer of hope a few weeks back that their were three surgical options so I had some hope but that was all taken away on Tuesday. Although I knew it was inoperable it was still devastating news. But we push on now 🥴 so the CBT is what you described it is early stages for me at moment but it will definitely benefit me and I definitely won’t take the mind bending meds they offer. It’s hard enough as it is without all that stuff. I’ve been referred to the Sheffield ataxia clinic and I’m being booked in for an assessment for CCAS. Thanks to your post I feel like I’m not actually going mad and these symptoms are really. Top man fallguy. Thank you and take care. NO SURRENDER!

Lee

[Hidden in reply to Guardsman68]

Good luck with the assessment. You mentioned FND in your post. If you don't mind me asking, what does this stand for?

[Guardsman68 in reply to Hidden]

Thank you 😊 well FND is functional neurological disorder. This is where the software of the brain is not working so the functional parts of the brains software are jumbled up and miss firing. The symptoms are very debilitating and people can have a whole array of different symptoms from seizures, mobility, speech, fatigue, memory well too many to list. Quite a few people are diagnosed with it when they have chronic pain it can just shut the brain off. Also severe migraine sufferers get diagnosed with this. I can understand why FND can be diagnosed for people with these symptoms but it is very often diagnosed quickly and then several years goes by and then people can get a new diagnosis of MS or Idiopathic cerebella ataxia. It’s a mine field really but neurologist think that it’s psychiatric as well as chronic pain. But who knows but people who suffer with this are not always believed and Gps don’t really know about it from what I’ve read people have a hard time getting the correct diagnosis and treatment it’s often said it’s all in your head well no SH_IT rather it’s all in your brain. 🥴

[Guardsman68 in reply to Guardsman68]

Well that’s my spelling mistake for today 😟

[Hidden in reply to Guardsman68]

Yeah I can relate to your ' its all in your head' nonsense. My first diagnosis was 'severe neuropathy'. This came from a very empathetic blood specialists who did a series of neurological tests after blood tests taken were negative. It may sound a bit odd being tested for neurological disorders from a blood specialist, but I guess my doctor had passed on concerns regarding neurological problems she thought I may have had. This was the turning point for me that led to my current diagnosis.

[Guardsman68 in reply to Hidden]

It’s not very often you find a medical professional that will actually recognize a few red flags with symptoms and actually act on it so it’s a good job she was aware of neurological symptoms. But it’s a long long road to get neurologists and physios and OTs to give a unified diagnosis one will say one thing and another will say something completely different which can be really frustrating. It’s hard enough having your life turned upside down you just want to get the correct treatment and support to try and fight back to this awful condition. NO SURRENDER

[Hidden in reply to Guardsman68]

The final diagnosis should come from the Neurologist. He/she is the one that specialises in neurological disorders and diagnosis. Yes it may take time but they have to be sure so as not to give the wrong diagnosis.

[Guardsman68 in reply to Hidden]

Absolutely agree with that but definitely frustrating for people having to wait probably for years to finally have a correct diagnosis I’ve heard of people waiting for a few years

[Hidden in reply to Guardsman68]

Yeah Can be very frustrating

[nycgeordie]

There's never any need to apologize for a lengthy post when it is informative, insightful and obviously helpful to others in so many ways.Good luck with your challenges.

[Guardsman68 in reply to nycgeordie]

Thank you friend 👍🏻