Hey all…
I’m soo fed up with this, I’ve been suffering with Chiari for years and my neuro guy is so rude. I’ve started with really bad puns and needles in the heels of my feet which is new for me?? And worrying as I understand it is known as being caused by nerve damage so i rang my neuro secretary concerned as I feel terrible in general, apparently he is ‘too busy’ and I was told to call my gp for advice! (Same excellent service not!) meantime my neuro contacts my gp?! And has told my gp that although yes I do have Chiari he thinks my heel symptom is more related with depression!!! How disrespectful? How can heel pins and needles be depression? Someone please advise here… My gp has now suggested I go on anti depressants and see if my heel Pins and needles go away ️x literally lost for words
Hello
I was told too that depression could explain all my symtoms even though I did not feel depressed (more homicidal towards medical professions who mentioned the surmised connection!). Prior to my surgery, I just pushed forward into seeing a neurosurgeon who did surgery no question. Afterwards, after symptoms were still a concern and depression was starting to come up in the conversations, I was getting miffed again.
I went to see a psychologist to see if I was depressed (people in the depths of depression are not always clear thinkers!) and she said no. In following conversations with medical professionals I was then able to say with certainty that depression or other mental health diagnosis were not a concern in my symptom presentation. It helped me and doctors to focus on other avenues
As an aside in regards to pins and needles, that can be a symptom of CHiari but also gentle neurodynamic gliding exercises can help the physical nerve structures with their help after being stressed by the Chiari brain malformations. It is worth a shot and remember that you cannot force people into having the knowledge to help you. THey either have it or they don't and move on if they don't - no point in wasting your time.
That is really useful positive advice thank you, it’s just what I needed to hear, sometimes it’s a lonely illness I feel no one around me understands. Thank you for your supportive words x
These people are painful. Have you seen a chiari specialized NS yet? If not you need to, doesn’t mean you have the surgery but you need to know what is really going on with you- full picture. If you need the NL get a new one. This guy is terrible and should be fired. As for the GP… I wouldnt take a med that doesn’t sound or feel right, so if it’s not sitting right with you don’t take it. May be time for a candid discussion with your gp- it’s time for her to get on board with helping, not hindering.
Jenn
Thank you Jen… Yes he is suppose ably a NS that has knowledge of CM1 although he said my only relevant CM symptom was straining head pain and my other symptoms - pins and needles head pressure double vision, vertigo etc etc is is not relevant to CM1 he has awful manners and treats me like uneducated idiot I feel medically neglected xxx thanks again xx