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How to a Second Opinion (UK)

Posted , 5 users are following.

htch
htch

after some advice as to how to proceed. 

Ive had an appointment with a NS privately who has told me "I can have the decompression op if I want it". He didn't give me any indication as to whether he thinks I should have it or not or if it is medically recommended.

Now I totally get it has to be my decision but he gave me little confidence as to his chiari knowledge. I asked how many ops he had done and he wouldn't give me a straight answer just telling me that they do 100's of ops for similar things like tumours etc where they have to open the dura. 

Finally he he told me they do possibly 10-15 of these procedures a year at this hospital but still didn't tell me how many he does personally. 

He he may be very capable but the one thing I get from all the experiences from people is you have to confident with your NS and I am just not and don't feel I am in a position to make the decision on surgery ask just haven't been given enough information about the surgery, the process, the risks, etc. and same goes for not having it, none of the risks were explained I was just told it may be further damage. I wasn't told what type damage could happen or what the chances are or anything. 

I have a NHS appt with a NL in February as I didint cancel this when I went private. I want to see another NS that is experienced in Chiari am I best to keep this appt or go back to my GP and ask for referral direct to NS ?

INFO : I've had brain MRI and Cine MRI for CSF, it shows Chiari ( don't know measurement as I haven't been told ) and significant flow reduction to the posterior fossa. I only know this as it was in the referral letter form the NL. The surgeon did not tell me this. I ave also been sent for a full spine MRI after some persistence about some other symptoms. 

My my main symptoms are valsalva headaches. I have others but this is the main concern. 

 

0 likes, 36 replies

36 Replies

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  • clarey1
    clarey1 htch

    Posted

    Get phoning round on Monday to find your closest 'chiari guy'. Or lady! I found that most surgeon's secretaries are helpful, and have slightly more time to talk than a general Neuro department. Believe me, I called them all!!
    • htch
      htch clarey1

      Posted

      Thanks... Did you just call and ask to speak to secretary of each consultant ? Do they share secretaries or op have different ones ?

      our local hospital has about 10 NS's ! 

    • clarey1
      clarey1 htch

      Posted

      This sounds more time consuming than it was.......

      First of all, call the Neuro departments and ask if any of their NSsspecialise in chiari. That information is freely given.

      What I did then was research each NS online. The good ones are proud of their work and its really possible to easily find out what their specialty is, recommendations from patients etc. I know, I sound like a mad stalker but it's all out their in the public domain!! I also called a few GP surgeries and asked to which NS they would refer their chiari patients.

      I've just realised that I sound mental!! I've always been know as thorough when I do something!!

      Anyway, that allowed me personally to narrow it down to a choice of 2 NS. Then I found where he does private consultations and paid for one appointment. It also turns outbreaks gut feeling was right and he is highly respected.

      Perseverance!! Keep me posted. C x

    • htch
      htch clarey1

      Posted

      Thanks.... Done the online research to death on all my local NS and there is very little in the public domain although I know they do the surgeries 

      I will start calling on Monday. I've also found it very difficult to find info on which NS you can see privately most of the ones listed on Ann Conroy do not seem to do private. But I'm going to try calling the private hospital and ask them who deals with chiari also. 

      Great advice thanks all👍🏻

    • hayleybell
      hayleybell htch

      Posted

      .....Perhaps try calling The Walton Centre (The UK's  Neuro and spinal specialist hospital).

      They may know which NS you can see privately in the UK. Many of course will work for the NHS & see patients privately from different hospitals.

  • htch
    htch

    Posted

    So again thanks all for the great advice.

    I have my full spine MRI today and not looking forward to being stuck in that machine for so long sad

    I've been busy on the phone and spoken with both Mr Flints (QEB) secretary and Mr Buxtons secretary (Walton Centre) and both said I would have to speak to my GP about referral and didnt have any advice to offer on getting a private referral in my area, although I could see Mr Buxton privately in Liverpool or Chesire.

    I've also phone my local hospital and got the name of the NS who deals with Chiari (it was not the one I've seen privately) so when I see the private NS on Thursday I will be asking to be referred to back to the NHS and the "chiari" specialist and will take it from there.

    I also have a long detailed list of questions ready for him which are going to be printed out and given to him.... I am wondering if I am asking for too much detail but I feel I need to understand if I am to make an informed decision !!

  • clarey1
    clarey1 htch

    Posted

    Hi,

    Well done you! You're on the case!!

    Does the 'chiari' man see patients privately? I found the guy I wanted, saw him once privately then he transferred me to his NHS list for surgery. Worth phoning the hospital again to ask.

    I too was dreading the whole MRI thing. Mine lasted a little over 2 hours. Once you get used to the noise - which is surprisingly loud at first! - it's honestly ok. I even dozed off!

    All the best for today.

    • htch
      htch clarey1

      Posted

      I did ask if he did private and she said No, although I have seen him listed on Nuffield Health website so I will be following that up, I need to check with my insurance if they will pay for that as I have already had a follow-up with NS but I shouldnt think there will be a problem and if there is and I can get a private appointment then I can always pay as the consultation fee is not a huge amount of money !

      I've been in MRI before had my brain MRI and CSF flow study done just before Xmas and that was first time in there and it was a little overwhelming at first but soon got used to it... but I got pretty cold towards the end but had to wear just a gown as I was wired up to ECG for the flow study. Hopefully wont have to wear a gown today and will try and find a warmer long sleve top that I would be able to keep on !!

      According to the letter it is a Lumbar & Thoracic Spine MRI.. have no idea how long it will take but assuming it will be about an hour and if I am not too cold I may fall asleep as I am exhausted ! lol

    • clarey1
      clarey1 htch

      Posted

      The private consultation I had was only £250, which for me was well worth it because it really go things moving. Sadly I still had to wait 8 months for surgery because I wanted to wait for him to do it!

      I feel sorry for people who maybe can't afford it though, they'll just get stuck in the symptom - I believe everyone should get the help they deserve without having to go privately.

      Also, what about people who would not be able to research and be pro active in helping themselves? Sad indictment on the state of things.

      Re the MRI, they'll give you a blanket if you need one and ask. Much more comfortable!!

      Let me know how it goes! C x

  • htch
    htch

    Posted

    Had my second appointment with NS today's. It was definately better than the first and I feel a little better at the thought of him doing my surgery but I still have reservations. 

    Good news is is I haven no syrinx or tethered cord but my hand symptoms are not carpel tunnel so are most likely caused by the chiari  however still recommends surgery due to cough headaches and possibility of this causing hydrocephalus or syrinx

    we went over all the risks of surgery but he says he only done 5 of these surgeries but he is very experienced with craniotomy and spinal surgeries 

    i think I would still like a second opinion so I'm going to call to my insurance tomorrow and see if they will cover it. 

    • clarey1
      clarey1 htch

      Posted

      Hi, glad it went better than the first one!

      What hand symptoms do you have? My hand, leg and reduced sensation symptoms are all chiari related.

      5 isn't a lot of these procedures so I think you're right looking for that second opinion. C x

    • htch
      htch clarey1

      Posted

      Hi I get pins and needles in my hands very quickly when holding stuff he thought it maybe carpel tunnel but the tests show only very mild carpel tunnel. I also get aching / burning pain in my right arm and right thigh which has been getting progressively worse.

      I am suffering with neck / shoulder and back pain which is also getting progressively worse. To be honest I didn't even know that these symptoms were connected to Chiari until after I was diagnosed !

      I am not sure if he meant 5 in total or 5 per year as he was sketchy in answering this point and kept saying he does a lot of surgeries In that area

      of the brain and that they are all a similar procedure.

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