Neurosurgeon on Tuesday

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Evening all, 

Just wondering if anyone can advise what to expect from my first visit to see my neurosurgeon on Tuesday.   I was admitted to hospital back in December after a CT scan and MRI  showed I had a Chairi Type 1 5mm.  During that time I was not really seen only brief 5 - 10 min chats with the doctor. I was told I had fluid showing and talk of a shunt was mentioned. I was then discharged and told I would be followed up in 3 months (had my CT scan two weeks ago).  Since leaving hospital  have not been right (I know some of its worry) but can't lift anything without getting pain in back of head and neck. Also been getting bad headaches in the front and side of my head.   I am also suffering really bad weight and muscle loss.   I also suffer bad floaters and blued vision and eyes seen worse ( I wear glasses but noticing a change)

Can anyone please tell me what to expect from my first appointment?  I really need some reassurance from the surgeon as the last few months have been hell where I am worrying. 

Many thanks  

​Dan 

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  • Posted

    Hi Dan

    What you have described about fluid on the brain is exactly what I had. I completely understand what your going through.

    So my first appointment started off with the neurosurgeon chatting with the results of the mri scan. After he gave me observational tests I.e walk in a straight line, keep head straight and follow finger with eyes and say the vowel a e I o u. After he said he could see the signs psyhically and started the dusscussion of what the next steps were such as decompression therapy. How long to wait and etc.

    That was my first appointment.

    hope all's will go well as can be Tuesday.

    If you got any further questions just drop me an e-mail.

    Let me know how Tuesday goes.

    All the best

    Jon

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  • Posted

    Hi Dan

    my advice to you would be to write a list of your symptoms, try and start with the most severe. Secondly, write a list of questions that you would like to ask the NS.

    Appointments are usually about 15 mins, so after a chat with the NS, any questions that have not been answered already you can ask. 

    Jon offers great info regarding your appointment. I had the standard neuro tests done whenever I saw a neurologist or doctor. When I saw the NS it was just talk.

    He explained what the MRI results of my brain and full spine showed (very important with Chiari to have a full spinal MRI done to rule out syrinx)

    We discussed my symptoms and then how he could help. We talked about the surgery, how it may help the valsalva headaches (which it has) and decompression surgery, the recovery & risks of the op.

    Any care you have with a NS for Chiari, it is important to make sure that they have plenty of experience in Chiari, do not be afraid to ask what experience they have of this condition.

    Have a look at the website The Ann Conroy Trust, very informative.

    Glad you have an appointment tomorrow, it is tough going when your symptoms interfere with you daily. I am sure the appointment will offer you some reassurance, it is daunting when first diagnosed, but there of plenty of great folk on the forum here that will help you every step of the way and of course your NS.

    Let us know how you get on.  🙂

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  • Posted

    Well I had my appoitment today. I have more fluid and pressure after 3 months so they want to fit a shunt.  Scary stuff!  I am being put under another surgeon as the one I see has a one year waiting list.   He said the headaches will just get worse and you can lose you sight if left  sad
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    • Posted

      Hi Dan

      Sorry to hear your news. I understand what you are thinking and feeling now you have heard that.

      I am glad you are being given to another neurosurgeon though. Hopefully you will be sorted with the operations very soon.

      I have a shunt in my head going into my abdomen. Admittedly I took me later mg to get over that than my decompression surgery however I think all my energy was there into recovering from that. But I did and now the head aches have gone for me.

      When are you due to see this other neurosurgeon?

      Take care

      Jon

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  • Posted

    Hi all, me again with more questions smile

    So I have now had a letter from the hospital and it makes things more confusing as it sounds not that major.    

    It states the following

    CT shows possible very slight increase in the size of his ventricles. There is certainly no decrease and his hydrocephalus persists.    It goes on to mention I think we should offer him insertion of a ventriculoperitoneal shunt.  and ten on page two it then states this may NOT cure symptoms of neck pain and may need to still offer surgery on the Chairi at a later date!  

    So the way this reads it don't sound like I need to rush the surgery?  I just wish I knew if I could carry on as I am now or am I putting my health at risk. The shunt seems fairly major and would rather avoid if I can.     I just wish a Dr would say if you don't do this in a years time this will happen etc etv just so I'm clear.

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