Hummingbird syndrome

[NanBabs]

I forgot to say that when the neurologist gave us the definite diagnosis of PSP, he said that P's MRI scans showed that he had "hummingbird syndrome" at the top of the brain stem, a certain pointer of PSP. I had never heard of this before but of course I have 'Googled' it since ! Has anyone else either heard of this or had it mentioned in diagnosis ?

[Heady]

Hi, I am vaguely aware of this, but only from the Internet. Our consultant has never said anything, bar "Google it!"

Lots of love

Heady

[NanBabs in reply to Heady]

Yes, when we first heard of PSP it was in the follow-up letter from our consultation with the Parkinsons doctor over a year ago. At the appointment he mentioned MSA but in the letter the following week came the PSP reference too. I can remember saying, " What the heck is PSP ?" and then of course, I `Googled` it and the rest is history, as they say !

The only advice he gave at the next meeting, 3 months later, was which wheelchair he could recommend.

XX

[Heady in reply to NanBabs]

We must have had the same consultants!!! Caring bunch, aren't they!!!!!

Lots of love

Heady

[showaddy]

The consultant carried out this test first and then showed us the mri scan and you can clearly see the humming bird in silluette. He also demonstrated this when sitting in his chair which gave us such a laugh and I have never forgotten Dr Daffalla at HRI and his demo. He continues to explain and show us everything he can. It does help to understand the PSP as he uses basic language. A true gent who we still see every 6 months even though we know nothing can be done re any treatment.

[NanBabs in reply to showaddy]

It is good to have a doctor who you can rely on for support and understanding, isn`t it ?

[showaddy in reply to NanBabs]

Makes such a difference. Hope your doctor knows all about the illness and helps you as well. Takes care, Pauline xx

[Heady in reply to showaddy]

He needs to be stuffed and framed. A rare item, a caring doctor!!!

Lots of love

Heady

[abirke in reply to Heady]

The Dr needs to be cloned!

[Amilazy]

Hi it was the MRI scan that the neurologist said proved that Margaret had PSP. He said all the other signs: backward falls, slow blink rate lack of upward eye movement, we're all signs of PSP but were not conclusive until the scan. The hummingbird shape is caused by the loss of the supernuclear area of the brain leaving a thin beak like remains above the Pons area of the brain that forms the birds wing shape. Can see it on scans if you google "MRI scans PSP" or "PSP MRI scans".

Best wishes Tim

[NanBabs]

Thanks, Tim. I came straight home and `Googled` `hummingbird syndrome` as I had never heard of it until then.

[Yvonneandgeorge]

When George went into hospital and had a MRI they said from the MRI is was PSP, no ever mentioned hummingbird syndrome. The doctor we see is very nice and helpful. Yvonne xxxxx

[NanBabs]

I think it is important to trust your doctor and if you get on well with them, then even better !

XX

[peterjones]

yes mate nanna babs I have heard of the hummingbird syndrome from googling cause my neuro bloke told me to look it up although I sometimes think that the hummingbird has flown the coup I have hit my head so many times now hurt my rib the other day and 2 hours ago I fell again hitting my back on the bench top in the kitchen and then swinging around hitting my face on the edge of it my cheek bone must be bruised so I take it that the hummingbird has definitely gone away but not the psp shame is'nt it peter jones queensland Australia psp customer

[NanBabs]

What a good job you can find the humour in all this Peter !

[peterjones in reply to NanBabs]

i think its a good job I can otherwise id be a raving nut case mate with what has happened to my body these last few months matey peter jones queensland australia

[GillJan]

My hubby's consultant showed him his scan and you can clearly see a shape that looks like a hummingbird in the centre area. He explained that this is what clearly marks the condition at PSP. It the shading is not in the centre (PSP) then it is either Dementia or Parkinsons, depending on which side is shaded but I forget which way round, its wasn't important at the time as the diagnosis was key for us moving forward. I believe that the hummingbird shape gets more pronounced the further into the condition, but it is a good 6 months ago that we discussed this so my memory is sketchy.

[NanBabs]

You are right when you say that diagnosis is the key to being able move forward. I am interested to know that others have been told about the hummingbird because I had not heard of it before we were told of it.

[mthteach]

Is there a difference in the symptoms of the hummingbird or mickey mouse when it comes to PSP?

[NanBabs]

Sorry, I have no idea, I would have to Google it !

[Doglinton]

Our consultant diagnosed PSP from the symptoms and said the scan would confirm but didn't mention the hummingbird bit.

He was clear that there was no real help but sees us every 6 months to review and is very empathetic. Always says he will support us.

Jean x

[abirke]

Found the meaning all by myself. Just like you through Google. B

s never had an MRI so I'm not sure if theres a bird flying in his belfry or not. But I do know that this shape starting in the aptrophying mid brain and down into the brain stem separates PSP from all other neurodegenerative diseases. So If he has a hummbingbird , he has PSP. Now what...

AVB

[peterjones in reply to abirke]

my reply to your NOW WHAT mrs avb its supposed to be conclusive mate nothing very important you just carry on as you did before matey I wonder if they got all the xrays of people with psp and looked to see if we all had the hummingbird effect or did they just look at one and say and say oh look that looks like a bird I think we will say that's the hummingbird effect

peter jones queensland Australia psp sufferer

[abirke in reply to peterjones]

Indeed, whether it was one brain or a 1000, if it doesn't lend itself to a cure or a preventative, then does it matter? I would like to say that it does. researchers have found pattern in more psp people tahn in regular population; have come up with the same conclusion; and are using this discovery to help alleviate specific areas of the brain from atrophying.....right? Like most businessmen, researchers have to go where the money is. 6 in a 100,000 (That;s 1 patient for every 16,000+ people) is not a disease needing a cure.....ie not one needing monetary support! Who cares...... That soemone took the time to xray the brain of one with this disorder, and come up with this much stuff (The Butterfly Effect) helps me to believe there may be somebody,,,,(even if they are just a student finding soemthing to do there doctoral studies on) who is interested in PSP....

Eternal optimist- am I? or just one with her blinders on. To those researchers such as are reading HealthUnlocked, thank you. Again please feel free to use these posts as some form of research. We are your lab mice...use us!

AVB

[peterjones in reply to abirke]

ok mrs avb you have won me over mate I think you was a bit annoyed at me mate i am not on here to upset people there is enough upset all the time with this psp if I have upset you I am truly sorry by my attitude mate anyway regards to b for me matey

[abirke in reply to peterjones]

Oh My poor Mr And Mrs. Jones, how could I be offended. If anything I was offensive. I;m not even sure where I was trying to go with all my statistics. Too tired to write and wrote it anyway. But It's true, there's just not enough ill people to make PSP a valuable thing to look at. Now if we lump it in with other neurological disorders, then maybe we will be seen! You know how hard it is Peter, How many cancer patients do you know? How many alzheimers,or Parkinsons patients. These are the big three. With cancer being the biggest. (I know cancer isn't nuerological but it's the big sister all illnesses. ) And how many know what Progressive Supranuclear Palsy is! I went to my dr the other day, the intern had never heard of it....she's not the first....If I had told her my husband had brain cancer, she would have understood! I hope you had a good day, or about to have a great day. Keep your shoulders in the air and your feet on the ground sir. Greetings to your wife!

AVB

[peterjones]

dear mrs avb I can hear where you are coming from believe me and you are correct in what you are saying when I first saw my neuro bloke he said to me go home and google it perhaps its to envolved to talk about and you could take it in more if you read it on google what happens if you have no google or computer I know that's very unlikely but a lot of people are puter illiterate like me for instance I lost my writing skills in early psp so in a way the puter or lap top has been good for me to em even if it is with one finger and very slow as well but I will get there in the end matey not sure where yet though mrs avb I thought that was a good comparison with cancer sufferes and psp people and you are right there are not enough of us I believe for the big drug companies to spend there money on what they are not going to get back for a while in Australia there is only thank goodness about 1500 with it psp that is mate not sure what America is or united kingdome is but our population is fairly small 24 million

people so we are only tiny compared with china Russia and united states well mate I ve cornered myself and not sure how to finsh so I will just say thanks very much for your mail mrs a v b sorry to be so long winded over something that should have took me 10 mins to write or type instead of 1 and a half hours so take care mate hope you write again sometime peter jones queensland Australia psp sufferer

and don't I know it at the moment mate see yer