New symptoms after the decompression surgery
Posted , 3 users are following.
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
nihilo sujoud
Posted
sujoud nihilo
Posted
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 sujoud
Posted
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 sujoud
Posted
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.