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New symptoms after the decompression surgery

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sujoud
sujoud

Hello all

I'm a 31 yrs old female, was diagnosed last january with chiari malformation I then I had my decompression surgery March 2014 but within 2 weeks after the discharge I had aseptic meningitis, CSF leaking & eventually thrombosis due to the central PICC line. I was told from the begining that the symptoms wont resolve totally but hopefully an 80% improvement. I started last Novomber to have attacks of headaches, neck pain, earache, dizziness & numbness in my upper limbs. I was terified I was relapsing this soon; so I went to my neurosurgeon where I did an MRI that resolved a major improvement though I still have some fluids in the surgical bed. My neurosurgeon found that he had nothing to do with my new symptoms so referred me to ENT who found nothing wrong with my inner ears, so again I was referred to the physiotherapy as those symptoms can be resulting from cervicogenic headache. The thing is the physiotherapist told me she never had have came across a case like me before & whenever I'm trying to contact my surgeon he is not answering me anymore which really bothers me a lot. 

Have anyone came across symptoms like what I'm experincing & if so anyone cares to advice me what might be next?! 

thanx 

1 like, 4 replies

4 Replies

  • nihilo
    nihilo sujoud

    Posted

    Hello sorry to hear that your surgeon is not keeping up good contact with you, my surgeon has been fantastic but it makes no difference really, once the surgery is considered to be complete you are no longer their concern (kind of like how a mechanic's job is to get a car to pass it's m.o.t. As long as it still drives, their job is done!) The main problem with this is that no other medical professionals really know much about chiari, I am constantly being turned away from my GP and told my symptoms don't fit but when I have done only the tiniest research, I have found my symptoms are "normal" in chiari sufferers and it is the doctor's lack of knowledge about this condition that is problematic in itself. I am 15months on from surgery and experience all the symptoms you mentioned above, my understanding is that most are from direct compression of the nerves in the brain, the brain stem or the brain itself. My ears are still ringing since surgery, have you seen this page http://www.conquerchiari.org/documents/presentations/SYMPTOMS%20Presentation.pdf. It helps explain exactly why we get these symptoms and not just a list of them. My point to you is this, never be afraid to try and educate or push a bit harder with doctor's, it is your health after all. When I see my GP he never seems to know the answers to my questions, but the next time I can tell he has been reading up and educating himself more on the condition. Educate yourself as much as you can, this will help you direct your doctor better on what it is you need and also help alleviate some stress as understanding symptoms can take the panic away from the situation. It all happens so fast please don't forget to look back on what you have already overcome and appreciate how strong you are. I'm sorry I don't have any professional knowledge to offer but if I can be in any way helpful please contact me
    • sujoud
      sujoud nihilo

      Posted

      I really appreciate those words; I'm not loosing my mind, my symptoms so exist & to others in a similar scenario. Im actually trying to keep whatever I'm having to myself because the last thing I want is to give my family a new thing to worry about. Wherever I'm heading I usually end up with the same answer, you look fine & there is no physical explanation to my symptoms to the point once one of the neurosurgery team asked me to go for a vacation, shopping, having multivitamins or to get married as I look totally well + the latest MRI showed a major improvement do I suppose to be super fine not complaining about headache or anything else.

      I need to know if there is a real chiari expert who knows what as a chiari patient I should expect & what kind of symptoms I should not be worry about in case start to pop up after the decompression, how long those symptoms will last & if ever will get worse. I know nothing is predictable but at least comforting the patient as those are "normal" !! after the surgery. I really don't know what to say or how to explain myself, I'm frustrated to be honest; I'm wondering if the dizziness will start to effect my daily routine in a while coz those attacks started to get a bit severe. Am I going to have a normal life after all? Am I safe to have normal child delivery without having a risk of relapsing again?! Am I goin to pass this to my future children?! Plenty of questions I have & I need to have some answers.

      Really thank you for what you've shared, I really needed it

  • stacey87853
    stacey87853 sujoud

    Posted

    hello,

    im 25 and was diagnosed with a chiari malformaion and a syrinx with i was about 15...i have similar symtoms to you but havent had decompression surgery ( hopefully i wont have to i have an MRI booked this friday as my symptoms have got worse) im not sure about the after affects of the surgery but i wanted to let you know that my dr is amazing and knows chiari very well and i thought that you may like to contact him as you dont feel comfortabe with your Dr.. im not sure if your in the UK but his details are Dr Casey in Bolsover Street London or RNOH in Stanmor. You can easily find him by googleing this. I hope he can even if he can just answer your questions about the future.

  • nihilo
    nihilo sujoud

    Posted

    Thanks Sujoud I'm so glad I could offer any useful advice to you, I hope the details stacey87853 has given you also help you to find a professional with a good knowledge of chiari. My surgeon often gives me information that directly contradicts what another doctor has told me or what I have read online. This makes me believe even more that there is very little proven knowledge out there even amongst professionals in comparison to more well known conditions. The hard thing with chiari is that it isn't always helpful to speak to another patient with it, even if they are the same age, height, gender and diagnosis the symptoms really are individual in each case and there is no info on why some suffer more than others. It is for this reason that I believe determination and strength of character is what will get you to your goals. I met a lady who had surgery 18months before me, she had 2 very young children and after a difficult recovery has returned to her life as normal and feels she has no restrictions because of her illness. She is back at work and also bringing up her new family.

    I have my own fears about my future, I deal with this by making the most of today, so if the worst happens I will hopefully have no regrets.

    In summary I am just trying to say that because it is so individual, you have to be the one in charge, even if that means telling a doctor you think they are wrong or demanding to see other professionals (today I got an appointment with a neurologist to answer my questions, I had to really push for this as my GP didn't think it was necessary). If there's something you want in life, it's up to you to decide if you can have it as no one seems to know enough to say otherwise. Please remember though that I am just another patient and these are my opinions based on my experiences. I would be happy to answer any other questions you may have. Take care.

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