Aa
Neurologist's visit a "bust"
I guess this is really not a question, but just a "sharing"...That's what we do here, isn't it? Had an appt with my neurologist today...was hoping to get another MRI to see what's going on...She simply said that she spoke with my NS ( the one that said everything is just fine) and he said that the radiologist read the last MRI incorrectly...so, in essence she's going along with his opinion...I suppose after all, she has no choice...he's supposed to be the "expert". I just can't believe this, considering the way I feel...TERRIBLE. As I said before, I NEVER felt this bad before the surgery...SOMETHING HAS TO BE WRONG! She did say..."I really recommend that people don't have the surgery"...I looked at her in shock...I was 11 mm and the NS said at the time "that I shouldn't wait very long to have surgery". She DID prescribe a new med (can't remember the name-the script is at the pharmacy as we speak...I'll update you all when I pick it up today) for what she thinks is Trigeminal Neuralgia in my face. Guaranteed to work, she said. She also told me that these facial nerves stem from the base of the skull where the Chiari is. Another reason that I think there's more to what's going on back there than they are able to diagnose. By the way, as I stood up to leave, I lost my balance so severely that I had to grab the door to keep from falling...she said "Bless your heart'! DUH....NOT WINNING (giggle...Chralie Sheen). Really can't wait for Dr. Rosner! Oh, I forgot...My husband ( who is the most wonderful man in the world) asked what she said...after I told him, for the first time he gave me the distinct impression that he thought I was maybe, shall I say, "inventing all of this"!!!!! I don't know about anyone else, and I know it's so personal, but our sex life has slowed down considerably because of how I feel all the time...sometimes I feel that he thinks it's an "excuse"...Especially now.
COMMUNITY LEADER
Glad to hear u r getting some relief from the meds....and many of us have found patterns with our symptoms and it is easier when we record them.....keeping a journal helps us see the larger cycles and patterns.....
Keep us posted on how u r doing : )
"selma"
Well...I have been on the infamous Carbatrol for a week now and have just passed into the next stage of having to take it 2X a day now...200mg 2X a day...No major difference...I can say though, when I get an "attack" at this point, it doesn't rise quite to the excruiating point it did before and doesn't seem to last as long...I just KNOW this is connected to the Chiari...There is ALWAYS a pattern...I feel increased discomfort and pressure at the base of my skull and then as that subsides the facial pain hits. Happens that way EVERY TIME! I never noticed the pattern before, but I've been paying closer attention...You can set a clock by it, it's so consistent!!!!
An EXCELLENT analogy!!!!!!!!! Like I said to Selma...That's what the Neurologist said...Ha, Ha...time will tell...no relief so far...day 3...
I agree with Selma... "guaranteed to work" doesnt happen. About like the NS that told me once I had decompression I would be cured. I agree running is a good idea. I dont think you have to worry about Dr Rosner being dismissive. You know your body well enough to know something is wrong. Instead of being dismissive I would imagine he will find things you werent even aware of.
Good luck and hang in there!
Pam
Good luck and hang in there!
Pam
COMMUNITY LEADER
[Carbatrol...Guaranteed to work].....run....nothing can be guaranteed to work....we r all diff and what works for one may not work for another...we r all guinea pigs and we have to try something to see if it will work.....JMHO
"selma"
"selma"
By the way, the name of the new med Neurologist gave me is Carbatrol...Guaranteed to work, she said. I read that's it's for epilepsy and may also be used for facial pain...took my first dose yesterday...had a "face attack" at dinner last night with friends (how embarrassing!)...It'll probably take about a week to see if it's working. Need to do blood work with this periodically to check my liver. Between this, gabapentin and vicodin, I should be a complete zombie!!!!!! Or wind up with liver failure!!! :)
Ahhhh. the on-going dilema (sp) of a Chiarian!! I will be sure that he goes with me so he can ask questions. I told him that if Dr. R thinks also that nothing is wrong...I will drop the whole thing and just grin and bear it. I really don't think that will be the case, though. I really believe I will get some justification! Thanks, Pam!!!!
When I went to Duke...The differential diagnosis (before the NS had a chance to review my MRI) was cerebellar slumping or a CSF pressure problem. After he looked at the MRI, he too said nothing was wrong. My sister is a total hypochondriac ( i love her dearly!!!) and sometimes, especially with everything I've gone through, my DH must think it runs in the family! The first thing I said to him after I told him what the Neurologist said as "I am not Pam!!!!!" Thanks so much for your kind words and support, Selma!!!!!!!!!!!!! I try to show him in other ways that I love him very much, like big hugs, unexpected "smooches", etc.!!!
Have an Answer?
You are reading content posted in the Chiari Malformation Community
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease
Hi...may I ask, did u have a CSF blockage? U mention the size of ur herniation, and that is not as dis-concerning as an obstruction and overcrowding,My thoughts now r that u could have cerebral ptosis(brain slump) from too much bone being removed.
Some drs do not like to "expose" the faults of another dr. I am sure once u get to Dr R u will find out more.
AS for ur DH....tell him I have no idea what that life is nemore and no it is not an excuse, it is one of the questions my NS asked.....we will be affected in this area too unfortunately and no matter how much we may want to share with our DH's it may not be possible.
I hope ur DH can understand the pain we have and that it is not just a HA either.....sorry that ur DH is not fully informed on how this condition is affecting u.
Hang in there
"selma"