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Specifics on possible types of surgery

Posted , 9 users are following.

manctofu
manctofu

Hello everyone

I'm new to this site, and found it after researching Chiari Type 1. I was diagnosed with it about 18 months ago, along with syringomyelia. My symptoms are mainly terrible migraines, nausea, neck pain (including a 'rice crispie' clicking noise when I shake my head), and, strangely (at least to me, probably not to a specialist) chest pain on the ribs near the heart. This last one the specialist says is the syringomyelia as it's in line with where the cyst is located in my spine and is likely the nerves being compressed causing pain around the side/front.

I hadn't really had back pain until recently, but lately I even have trouble moving around and am in agony virtually all the time, so am worrying the cyst may have expanded.

Anyway, I saw a specialist in Brussels, where I live, who is something of a celebrity here as he's had his own reality TV show following him around the ward. I'm told he's a leading authority on Chiari and syringomyelia. Unfortunately he was rather brusque and I didn't get to the bottom of things as I'd hoped. What he did say though, was that there were two forms of surgery available to me: the first is less invasive, has an 85% success rate and - the surprising bit - has a recovery time of just two weeks! The second is more invasive and takes longer to recover from. Naturally he advises having the first procedure.

I was going to go have it, and then I read on here some of the comments from people about their recovery, and they sounded a lot worse than two weeks. So I'm wondering, has anyone had a quicker, simpler procedure where they were back at work two weeks later?

I know it sounds a bit crazy, but this guy is an authority on it and I wonder if it's a procedure that he himself invented?

Thanks in advance and wishing you all well.

0 likes, 27 replies

27 Replies

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  • clarey1
    clarey1 manctofu

    Posted

    Hi there!

    I had the less invasive surgery 5 weeks ago.

    No way would I have been able to return to work after 2 weeks!!

    I'm struggling with wound infection, ended up briefly back in hospital, have had 3 courses of antibiotics and am exhausted.

    Maybe some people could but brain surgery is a big procedure and recovery varies from person to person.

    Keep me posted as to what you decide to do.

    C x

    • hayleybell
      hayleybell clarey1

      Posted

      Hi Clarey, just butting in, sorry....

      i am intrigued, how did they do it? Keyhole?

    • clarey1
      clarey1 hayleybell

      Posted

      No, Hayleybell sadly. Opened up the back of my head like the other procedure! Loads of my skull gone so they needed to get right in there!!

      C xx

  • hayleybell
    hayleybell manctofu

    Posted

    Hi....

    I am not aware of a 'quick fix' surgery with a two week recovery?? But, surgical techniques improve and evolve all the time.

    ( I am not a medical professional). 

    I was very fortunate to find and be operated on, by one of the best UK neuro surgeons that specialise in Chiari & syrinomyelia. (I do not have syringomyelia)

    From what I understand, the surgery we are all familiar with is "Posterior Fossa decompression" surgery. Depending on the shape of your skull will be the decider if you also need surgery to remove and/or reduce your C1 and C2 (laminectomy) I needed removal of C1 and part of C2, (must have had a big brain, lol) 

    Many surgeons, esp in USA put a 'patch' into the dura to create more space. My surgeon did not, the risk of infection and rejecting the foreign body of the patch is very high, so I was thrilled that I felt I was having a less risky surgical technique performed and reassured by his success rate.

    The dura did heal itself, (this is quite new, I believe, after many studies showed improved recovery )minor leaks can occur, which are common and heal themselves, mine did. No infection! So many fellow Chiari patients struggle with the patch. But recovery was not 2 weeks! So, I am really keen to hear how and what he will do!

    I reckon it might be the keyhole surgery, which of course would be far less invasive, but I have no idea what the success rate is and if further surgery is often needed, or not.

    It would be great to hear that a less painful and invasive surgery is available.

    Do let us all know how you get on and what it involves, I for one, am intrigued!

    good luck and hope you are on the road to recovery really soon 👍

    • htch
      htch hayleybell

      Posted

      hi Hayleybell... did you also have the cerebellar tonsils shrunk ? My NS has told me i need part of the skull, part of C1 and the dura opened to shrink the tonsils and then a patch put in to make more room.

      I'm very interested in anything that involves less risks and fewer complications !

    • hayleybell
      hayleybell htch

      Posted

      Yes i did but no patch, as If left, the dura will heal on its own.

      Will greatly depend on your NS though.

       

    • htch
      htch hayleybell

      Posted

      Thanks...didnt ask that question so another to add ot my list !
    • lou03553
      lou03553 hayleybell

      Posted

      Hi I know this post is a while back but i wondered if you would be prepared to share the name of the uk surgeon who operated on you. I was diagnosed with chairi 1 and syrinx and am getting gradually worse, headaches, balance, fingers and foot going dead, neck pain - my etc etc! Thanks v much lou
  • htch
    htch manctofu

    Posted

    Hi, I am also in the process of making a decision for surgery and would be very interested to hear more about the less invasive procedure.

    The only other procedure I have heard of is similar to tethered cord surgery but is being used on people that do not have tethered cord (Section of the filum terminale ).. I have done no research on this and have no idea what the technqiue involves and if there is enough research done to say if it is effective or not. Could he be referring to this ?

  • manctofu
    manctofu

    Posted

    Hi, first of all thank you for all your replies and apologies for not saying so earlier. I am seeing the neurologist again in about a month, and this time I'm going armed with lots of questions. I will report back when I find out more about it as I still can't understand how he could be so confident of a two-week recovery.

    In the meantime, my symptoms are worsening every day and i basically have a searing headache all the time. I take paracetamol + codeine (which has to be prescribed here even for small amounts, not sure about the UK?), and I worry about being addicted as I need lots of relief. I also work in a pressure job that requires high levels of concentration, and I have an 18 month old girl to look after, so I feel stuck between a rock and a hard place.

    Anyway, enough moaning (sorry). I'll keep you all posted.

  • manctofu
    manctofu

    Posted

    Update:

    Well, I went back to see the professor about surgery, but it turns out my headaches aren't being caused by my Chiari. I'm a little embarrassed, but I think my situation could still be useful to know about, since we Chiarians have trouble finding a diagnosis. In my case, it looks like a red herring, as the headaches I have, although they're really, truly horrendous, are not being caused by my malformation, because I don't get them through exertion.

    Apparently - and I apologise to those of you who know this only too well - Chiari headaches are brought on my coughing, sneezing, straining or exercise. Mine aren't, so they're unrelated, and I need to resume my search for a diagnosis, as MRIs of my head show nothing untoward. My Chiari is 8mm, which he described as 'relatively small'.

    I'm pleased because I won't need surgery, but worried about what it could mean, and frustrated I still don't have a diagnosis.

    So, hope that helps someone even a little bit, and I wish you all the best.

     

  • clarey1
    clarey1 manctofu

    Posted

    Hi,

    My headaches are not brought on by exertion, sneezing, coughing .... they are just there, to some extent, all of the time. They are completely chiari related! I would maybe think of getting a second opinion just to check? Also, size of the chiari is irrelevant - it used to be that nothing under 5mm would be considered for surgery but that has now changed.

    Find a Neurosurgeon that specialises in chiari.

    • manctofu
      manctofu clarey1

      Posted

      Hi, thank you for replying.

      I did suspect this. The thing is, the guy who told me this is one of Europe's leading neurosurgeons. He even has his own TV show in Belgium! So I was very surprised.

      I have managed to get an appointment with another one, and will report back on that too.

    • clarey1
      clarey1 manctofu

      Posted

      Hi,

      Just remember..... Mary Berry has her own TV show, but I wouldn't let her operate on my brain!!!

    • manctofu
      manctofu clarey1

      Posted

      Ha! Indeed. Although to be fair I would let her bake me a cake.

      The TV show thing is probably a bit misleading - it was a reality-type show following him in his job as one of Europe's leading neurosurgeons.

      His opinion was that, as my headaches occur at random and are unrelated to exertion, they are so unlikely to be caused by the Chiari as to make the surgery unnecessary.

      As I said I am seeing another neurosurgeon in a month for a second opinion and will report back.

       

    • hayleybell
      hayleybell clarey1

      Posted

      Absolutely! I would ask her to make me something delicious though 😂

       

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