Neurology Hospital in London

Ami2301

Hi all,

i am due to stay at the neurology hospital in London soon for either 2 or 5 days,
i was wondering if anyone has been to this hospital and if you could tell me what sort of tests they do and if they gave a diagnosis at the end of your stay/appointment.

Ami xxx

sleepy1

Hi Ami
I can't comment on that particular hospital but have spent some considerable time on neurology wards in the past.  They usually do things like MRI scans, Lumber punctures, Nerve conductivity tests.  All depends what they think the problem is, and most of it will be ruling things out.

Has your consultant given you any ideas what they think is wrong?

Ami2301

Hi @sleepy1
Thanks for replying!
Long story short, after Christmas 2016 my hearing suddenly deteriorated, then in March 2017 my central vision completely went overnight, my balance has also been affected and has left me in a wheelchair, I can no longer walk unaided. I was referred to the neurology hospital by Moorfields Eye Hospital (they have been fantastic) after discovering I have optic neuropathy (my loss of central vision), the consultants have not suggested any conditions/diseases, they try and figure out if all these problems are parts of one condition or multiple conditions and hopefully what's caused all this.

Ami xxx

sleepy1

Hello again Ami

Sorry to hear you are having such a tough time, it is especially disturbing when these things come on so sudden, I too was unlucky enough to be inflicted with an overnight scenario that left me unable to do much at all. 
As you probably already know neurology is a very complex area but I think the hospital you are going to is one of the best in the world with a highly esteemed team of neurologists.  So take some solace that you will be in very safe hands.

Have you asked what tests they will be doing?  Perhaps if you call the number on your appointment letter they will be able to give you a bit more information.  All the ones I had were really not that bad,  trying to sleep on a ward with other seriously ill people I found most disturbing.  Don't want to alarm you but just be prepared to see all manor of patients having fits, screaming, fighting etc.  Not their fault just a symptom of their condition........Certainly an experience that opened my eyes!

Hope you will soon get some answers from the specialists and a suitable  treatment that will improve your health.

Sending you all my love X Rosie

Ami2301

Hi Rosie @sleepy1
sorry that you too had to experience the same overnight scenario
my mum has just told me I will be having an MRI and a lumbar puncture (she didn't want to tell me til nearer the day as I panic) but they haven't told her about any other tests (as of yet). Have never experienced a lumbar puncture so am a bit anxious.
thank you for the reassurance, i just get so nervous so easily,
i fall asleep during anything (concerts when I was younger, smoke alarms - bad I know,etc) so hopefully sleeping won't be an issue, I sincerely hope, not just for myself, others who are suffering too, to receive a diagnosis and hopefully treatment that will help with our daily struggles.
much love
Ami xxx

sleepy1

Hi Ami

The MRI can be a bit scary if you are claustrophobic but other than that it is not painful at all, you just have to keep still while the scanner moves back and forth, they usually give you some head phones to wear with a choice of music to help you relax.

The lumber puncture is where they take some fluid from your spinal cord using a thin needle, a bit like taking blood but more difficult to do as they have to get it just in the right place between your discs.  Not going to lie it will be a bit painful and you might feel a bit sickly afterwards .  The main thing with this test is you really must must keep as still as possible during the procedure in order for the doctor to get it done safely and as quickly as they can.

I can understand why your mum wants to protect you (that's what mums do) but I think you are better off knowing in advance what to expect rather than face things head on.  Both these tests are very very important for you and although they may not give you a complete diagnosis they will most certainly rule a lot of things out and give a much clearer picture as to what they are dealing with.

Try not to panic about it as that wont do any good, get it over with done and dusted then you can have a nice nap. zzzzzzzzzzzzzzz Rosie

Ami2301

Hi Rosie,
i did have an MRI last April, was a bit daunting at first, I had ear plugs and headphones which helped, I could feel vibrations which made me feel slightly uneasy but I quickly tried to think of them as a.beat which calmed me down, the MRI lasted 20 mins but glad it was over with!

this will be my first lumbar puncture, as much as I am dreading it I know it needs to be done, will there be nurses around me while I have it done? I know I am 23 but I am still a bit of a scaredy-cat lol

Looking forward to the nap after, just hope people around me can put up with my snoring lol!

Thanks again for reassuring me about all this, really appreciate it

Ami xxx

121Dawn

Hi Amy
i go in the NHNN in queens square london at least once but usually twice a year. I have Idiopathic Intracranial Hypertension (too much cerebral fluid on the brain). It too caused me to go blind. This happened gradually unlike yours. I often lose all my left side for between 12-24 hrs. I lose speech/ taste-balance. My cognitive reasoning is all over the place. Before I had my brain surgery to place shunts in my spine and then one in my brain. I had to have lumbar punctures every week for 18 months. It a quick procedure as long as you listen and do exactly as your told. Yes there is usually a nurse to hold your hand. They are lovely in that hospital. I travel from Manchester to go there because I know I’m going to be given the very best care. They do MRI scans and CT scans sometimes they do them with contrast dyes to show and blockages or obstructions. They are very thorough. You will be well looked after in there x

Ami2301

Hi @121Dawn

Thanks for replying

18 months??? You are a very brave woman having to endure them for that long! At the same time I am glad you shared that as it reassures me that it's a safe procedure The only thing I am worried about is that my back can be really sensitive at times (from physical abuse when I was younger) so it's automatic that I tense up and flinch when I know something is being put on my back. 

I am travelling from Norfolk, this will be my first time at the hospital, was referred by Moorfields Eye Hospital.

Thank you for also explaining  about the dye as I am mod/sev deaf so I wouldn't be able to hear the consultants explain - my mum has to relay everything to me as simple as possible and can be difficult at times.

Lovely to meet you Dawn

Ami xxx

121Dawn

Hey Ami don’t worry about sleeping. All the wards are split into bays of 6 beds and it’s ysually very chilled out as a lot of the patients are regulars like myself. The nurses are the best I’ve ever met. They understand how very poorly people are that go in there. To have someone poking around with your nervous system and brain is intimidating to say the least. A trick I learnt was a sort of self hypnosis ( and before you fall asleep thinking ‘oh no , new age freak here lol’) I just love dolphins so I close my eyes and visualise Swimming with them. Holding their dorsal fins and have them take me on an adventure in the ocean. I can actually stay awake whilst having my head drilledvwith a hand drill and having what is known as an ICP bolt fitted in my head. I don’t feel any pain or anxiety when I do it and my surgeons are used to it now lol. Good luck sweetheart and keep us posted please hon x

Ami2301

Hey @121Dawn

Thanks again for thre reassurance.

Thanks for the idea, sounds like a really good way to help the nerves (obviously not literally lol) I shall think about a certain actor hehe  

I will definitely keep you all updated, its not til end of month but I already know I am going to miss you all! I haven't been able to keep away from the forum since I joined so 2-5 days is going to be hard lol!

Ami xxx

thespiceman

Hello @Ami2301 I hope everything goes well.  Take care.

Always in my prayers and thoughts.

121Dawn

Hey Ami
the Hospital has guest WiFi for free. You are still going to be able to chat. I want to know what ward your on. I prefer Lady Ann Allerton ward. X

Ami2301

Hello @thespiceman

Thank you as always, my good friend

Ami xxx

Ami2301

Hey @121Dawn

Not going to lie but I am so relieved you told me that! 

Are there lots of wards/bays?  I will definitely let you know which ward I am on when I get there

Ami xxx

121Dawn

Hi Ami
there are only 4 floors 3 of which have wards and the other has the theatres. It has 2-3 wards on each floor each usually has 4 bay and 4 single rooms. There is also a basement that holds all the dept such as MRI/ CT scanners ophthalmology etc. To the front is queens square and you have rehab wards there to the back you back on to great Ormond street children’s hospital and the ambulance bay is there. The hospital has no A&E dept. It does have a good cafe down stairs at basement level. You are allowed out just tell someone and be sure to give them your mobile number. I’ve be known to go to the local pubs for meals or a cheeky brandy and they are ok so long as you let them know and carry your phone.

121Dawn

Hope this helps. There is a web site btw the meals are fab. Just be aware you are given the normal menu but you can order of any. I particularly love the curried goat with rice and Marley stew. It’s stunning and very tender. Go on website for menus. You order all meal for the day every morning. There’s a cash machine in the foyer of the children’s hospital. There a Tesco on the main road. Just ask anyone. Anything else you can think of let me know.
regards
Dawn

Ami2301

Hi Dawn,

Hope you are OK

Thank you so much, I will be sure to have a look tomorrow

Do they try and do as many tests as they can in one day or do they space them out over the days?

Ami xxx

121Dawn

Hi Ami
i pretty much depends on availability also sometime they need to await the results of one to determine which others you need hon
Dawn

Ami2301

Hi Dawn,

Hope you are OK

Thank you Do you have to lay in a certain position(s) whilst having a lumbar puncture?

Ami xxx

121Dawn

Yes at first you sit on the side of a bed and lean forwards. Once they have done some locals and have the needle inserted correctly you will be rolled over on your side but still hunched over so they can take the fluids. You will be asked to cough either once or twice. This is to measure the volume. It will be noted your opening and closing pressures. After some samples have been taken. They will then ask you to cough again to pull out the ‘needle’  and stick a plaster over it. You will be required to lie flat for an hour whilst drinking as much water as possible to avoid a low pressure head ache. With this in mind make sure you do a toilet break just beforehand 
Dawn xx