I am new to this forum, but have been in other forums for various problems. This one is the newest of a long list, my file at the neurologist has volume 1 and 2.
It started early last fall with a weird smell in my nose, a burnt appliance smell. My ear, nose and throat doctor gave an all clear and said to go to a Neurologist, MRI found, MRA confirmed a large MCA behind my left eye. I had surgery to clip it in November 2010 and was sent home a few days later, two days after that, I has several seizures. The surgeon said it wasn't the surgery that caused them and said to see a Neuro. to find out why I had them. The smell continues on and off ever since it began in the end of Sept. 2010, only going away for about a week when anti-seizure meds were increased. I have been reading about all kinds of seizures trying to figure things out. If any one has any input, please do so.
I live on Eastern Long Island in New York and am looking for a very good neurologist thet is knowledgeable about all types of seizures, I am beginning to think I am having Olfactory seizures.
I am not sure how far you're willing to travel, but if you could take a trip to NYC, I would recommended going to the Neurological Institute of New York at Columbia Presbyterian. http://www.cumc.columbia.edu/dept/neurology/
By no means wanting to contradict your surgeon - but you’ll find time and time again on these boards that people experience things post surgery that surgeons insist have nothing to do with the surgery. Mainly this seems to fall into category of ongoing headaches and sometimes numb sensations. It’s very good to check it all out, but keep in mind too that I believe surgeons (or anybody) don’t really know how each person will ultimately respond or show side effects. No matter, it’s important to have them looked into and managed - you’re being pro-active and will be fine. It’s great that you are a survivor! Welcome to the boards - they are wonderful and so supportive.
Have you researched the cranial nerve anatomy for the location of the Olfactory to your MCA aneurysm? All of that should be visible on the angiograms and /or the MRA which either the neurosurgeon and/or the neurolgogist likely have, or will, explain.
Yes, Jaycie described the shared experiences well...
Yes, I have had several EEG’s including 24 hour. I was going to an appointment with that doctor when I was there, they told me he was running a half an hour late. I sat there in the waiting room for 2 hours, was then put in an exam room and sat there for another half an hour. I went to the receptionist, got my co-pay back and went to another doctor appointment I had scheduled. I do have another appointment with him in about a week and a half and will go to it to get the results from him and make an appointment with another doctor. I have a huge bundle of MRI’s, MRA, CT’s and others all read fine.
Hi James and Welcome to the site...if you never had seizures before the surgery, not sure how can think that they have nothing to do with the surgery and/or at least the annie...? However, I feel you are in the right direction to finding a good neurologist...my neurosurgeons...did a great job on the surgery and the complications, but really donot deal with the after effects, etc., but my neurologist has been a big help...
Good Luck...and you will find much support at this site...glad you found us...
I was thinking that he was covering his back side, thinking pending law suit. All I wanted was a straight answer and didn't get it. I am by no means saying he is a bad surgeon, I would recommend him to a friend or family member. I have been in this position before, searching for answers, with other illnesses and did get things figured out. I know this will all come true for this one as well. The problem is not being able to drive legally after the seizures and the Neuro not willing to give my license back.
I understand this is a patient support group and that there are people in here sharing there experiences. I just hope to gather info to arm myself when I go to the doctor.
No, I never had seizures before and the weird phantom smell started about 2 months before finding the aneurysm. The problem they are having is figuring out if the smell is related to the aneurysm. One Neuro in the hospital said the annie was probably there for years and with the smell just starting just adds more questions. They think the smell is an hora to a seizure that never manifests. I just started reading about Olfactory seizures and will be presenting that to the Neuro when I have my appointment.
Another problem I an having, just to add another one, my Dura is not healing. I participated as a test subject for a new Dura seal and 4 months after surgery I am still leaking fluid through the dura where they opened my skull. I have a followup appointment with the surgeon in a month and a half to discuss that and what to do about it if it doesn't heal.
They have all been just days in my life, these past 15 years.
I feel for you with the driving restriction. Several years ago (which is to say several yrs prior to aneurysm discovery) I had what are believed to be 4 partial complex seizures (no loss of consciousness) in one day. Never before, never since (tho on Lamictal since then). I couldn’t drive for 6mos which was really challenging, especially w 3 young kids. Now I’m told that I can come off the Lamictal since I’ve been seizure free for over 2yrs, but when I do - no driving again for 6mos just in case seizures return!!! Think I’ll be staying on the Lamictal for a long time!
For got I had an article from a friend... of a survivor...w/note on taste / smell
The full email will not transfer from our reply line to the save line...
...search Seattletimes.com ... put in Rebekah Denn (reporter) in search line ...the third article down .. After near tragedy , wine ... in the article it notes the neuro concern for taste and smell