Feeling frustrated! Went to see the neuro surgeon today was pretty much told nothing can be done. It’s something I have to live with. I started getting symptoms 6 months ago and they are slowly getting worse. I’m told to see my neurologist…Maybe they can help with the headaches… The monster that lives in my skull that I swear is trying to claw its way out, are the worst. But the balance issues, poor coordination, and painful tingling in my fingers is something to get used to. REALLY?. Not sure what to do next.
If that profile picture is your MRI, see another neurosurgeon(and see your neurologist).
Another opinion never hurts(preferably someone with significant Chiari experience).
That is my mri… I straighten the picture so its turned the right way… I’ll talk to my neurologist and see what they say… If its the same thing… I’ll find someone else… Thanks
Welcome Bella!! I so understand your frustration. I have been symptomatic for about a decade now and misdiagnosed at least a dozen or so times. I have been given every med under the sun, even Lyrica for a short time which I had a readtion to lol. I am still currently undiagnosed but with the combination of lots of online research and symptoms that took a nasty down turn recently I have restarted the battle to a treatment. Migraines are bad but you're right the balance and dizziness is the worst! Keep fighting until you get the answers you need!!! You will over time find a new normal, and be able to handle more of the sypmtoms but make sure you are heard and keep looking until you find the doc who makes you feel heard. Some days are horrible, some days not so bad. Try to reduce the stress and noise in your life and try to start recognizing triggers for your symptoms. :) Always here if you need to chat or vent!! <3 Wishing you a pain free night
Thank you… I was diagnosed April 15th… Good luck in your search… If you need to vent as well I’m here… I’m going to find a new set of drs that want to do something more than blow me off… I’m learning it’s something to get used to… Now if I can quit hitting my head at worth I might just be OK… Lol…
I went threw that for 2 years! Every doctor I went to said there is nothing wrong with u u are just going to have to live with the pain. I new in my heart there was something wrong with me because the pain I felt was so bad. I would cry. I couldn’t sleep I was ill. But this new doctor I am see at Vanderbilt said I had a syrinx that is causing my problem (I might have spelled that wrong) .I had a decompression surgery in May 2012 by another doctor. I just pray this helps the pressure in my head.
Dr. Trumble hit the nail on the head! Don't just seek a second opinion, find a NS with CM experience. It is crucial to find the right NS and NL. Check the recommendations list on this site. It is quite helpful. Good luck!
-M
I went and had the nerve study done to prove that the Paresthesia was not part of any carpal tunnel or a pinched nerve. I get to go back on Wednesday to speak with the neurologist to see what is the next step to take is.. Keeping fingers crossed.. I will look at the recommendations to see what might be in my area.. Still frustrated.. My Primary doctor has been a dr for 35 years and I'm the 4 case she has ever seen.. time to find a new primary..
lol.. this is too funny not to share.. lol .. so I went and had the study done as I stated.. My Primary dr calls today and requests that I splint my wrists at night to help with the carpal tunnel.. Really??? at what point did she miss that I have none in my left and very mild in my right?? What is splinting my wrist going to do?? The symptoms are far worse in my left.. COMPLETLY FRUSTRATED over this new development. as I stated time to find a new primary. Lol..
There is a whole list of therapies that can assist with the chiari symptoms. Unfortunately, physicians tend to live in a surgery or medication solution zone.
Neurodynamic exercises for the "carpal tunnel" symptoms
Primitive reflex exercises for the balance and dizziness and vision
Oculomotor for vision
Lots for cognitive
Enviromental/lifestyle changes to help with fatigue and brain fog.
And, yes, like other people state, you need to find a surgeon if that is the road you wish to take.
Wishing you patience in your Chiari journey