Timescale of diagnosis to Neurosurgeon appointment

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Hi everyone,

I am 32 have have just recently been diagnosed with Chiari Malformation on New Year's Eve, after having tests and MRI scans for problems with my neck since April 2015.

I have a C5-C6 prolapsed disc in my neck and deterioration of my lower spine, but when I was told that I have Chiari Malformation, everything clicked into place. I realise now that I have had the symptoms for years but never thought anything of it.

My case was referred to a Neurosurgeon in Stoke by my spinal surgeon in Oswestry on 19th January.

My symptoms have become increasingly worse during the past 6 months, and I am now having problems with my levels of concentration, speech, and I'm also dropping and bumping into things more often.

I'm just wondering how long others have had to wait from initial diagnosis to an appointment with a Neurosurgeon.

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6 Replies

  • Posted

    Hi  stay possitive it helps .My daughter who is 19 was diognosed in October .She had  decompresion surgery on 29th jan got out of hospitial on the 2nd Feb .She is very possitive and has been since she was diognosed .She has suffered with problems since being 7 yrs . She now feels a lot better yes she has pain but it isnt pain like she has had for so long ,Hope you get appointment soon POSSITIVE Thinking 
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    • Posted

      Thank you.

      I'm not worried about any aspect of it really as I have a genuinely positive nature, which helps significantly. I'm kind of a 'just accept it and deal with it' person.

      I'm concious about timescales because my brother's wedding is in August, which I don't want to miss, and I booked a holiday (many months prior to diagnosis) to Florida for this October.

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  • Posted

    We are just hoping to get away later in the year I think it all depends on the hospitial you attened and the surgeon and what they sugest my daughters tonsil was lg so it needed doing he said she also had loss of feeling on left side as i say it all depeneds on hospitial and surgeon Hope it all works out well for you Keali .And enjoy youre holiday when it comes round

     

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  • Posted

    Hi Keali, I live in Dorset, I think you are so lucky to be diagnosed so quickly, I suppose stoke got a great CCG (clinical committee Group) - it took longer you are at least your NS have seen you already, so what did your NS said, did you have CFS blocked, what UK normally have to do, they following NICE Guideline, they ought to managing the symptom by giving medication, if the symptom can't be control then they will suggest for decompression, did he mention anything yet?, NHS has also providing all the patients as follows:

    1. choose and Book (all patients can choose and book the services they would like to be treated - ie if patient would like to choose to be neared their faily/friends/the best specialist/ even if the place if 4 - 5 hours drive)

    2. The waiting list should not be more than 18 weeks  (if they can't provide you less than 18 weeks - they will come back to you and giving you alternative choice)

    3. Patients have the right of better services - closer to home.

    So, basically we are so fortunate to have NHS - the best health care in the world.(no matter how many people complaining about it.. LOL)..so if you are worry,, go and call the ANN CONROY NATIONAL TRUST..the nurse there will be able to help you..there are llist of chiari specialist near you..or talk to them..but this site is fantastic..you can also go to to ask dr Sarah jarvis on this blog..she knows lots,even though er specility is in diabetis she knows a lot about others. Good luck...I am chiarin, I am waiting for my decompression - this was my 3rd opinion..it took me nearly 2 years to get to this stage...!!!!!!

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    • Posted

      I haven't seen the Neurosurgeon in Stoke yet, that is the appointment I'm waiting for. The diagnosis was made by a Spinal Consultant in Oswestry due to the Chiari being picked up on mri scans I had for my prolapsed disc.

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    • Posted

      Have you asked your GP yet, expalin it to him?, if you already been scan and being diagnosed that you had Chiari in April 2015, your Neurologist should have seen you..did you have pain terrible, did they tell you that you have CSF blockage (obstruction) like: when you moved to fast you have terrible headache, imbalance walking, sleep apnea, horrandeous ooain when coughing or sneeezing (really unberable..!!!) its really paining .I felt like a ton of brick hitting my back skull (Occipital) ..no drugs finally can control the pain..I really suffered tremendously..i had to resign from my job..I was in the blink of house bound,..I a much better now..but only then I am going to be operated I am still waiting after 3rd opinion..it took me 5 months to see my 3rd Neurosurgeon..now I am waiting another 5 months for my operation..you have to ask to be referred,theymight forgotten..if i were you..i will contact A&E when you have a fit..get thee ambulance to take you to the A&E and tell them you have MRI the result is you have CHIARI with that they will prioritise you...this is quite a serious condition..you do not want to leave it..you would like to get notice..by them..this is not life threatening condition..but you do not want to leave it because the longer you leave..in my personal experience..the worse it get..so..I hope this information help you a bit..make sure you drink plenty of water..and do not do too much mostly anything that give you strainning position..take it easy..try to get magnesium oil massage it on you neck..for me I feel grape seed extract help me to reduce my pain a lot...talk to your doctor ask them to help you..go to youtube look at mayo clinic..try to know about your condition..., the nonre you you know it the better you are..at least you can make your own decision..what you like to do with your own health..just remembr..every one condition is different..I am quite tough..but finally Ijust can't put up any longer ..I hope you can cope bttr than me..god luck!!
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