I wanted to say how pleased I am to have found this page. I was hospitalized back in July 2010 for four days with a severe headache, vomiting, and dizziness. I was released and sent home without any kind of real diagnosis. I felt better and was a new nurse at a new job, so I went on about my business. Over the years, I had intermittent bouts of restless leg syndrome, headaches, sleep apnea, neck/shoulder/arm pain, blurred vision, clumsy gait....the list could continue on and on. I would always attribute my symptoms to other things (I am an "older" nursing-school graduate). Flash-forward to October 2013: Over the last two months, the headaches got worse. I was diagnosed and treated for migraines by my primary physician. Nausea, blurred vision, trouble "finding words" when speaking, and my unsteady gait reared their ugly heads again. My PCP attributed it all to migraines. I continued to monitor my blood pressure, blood sugars, and saw my eye doctor twice. Clean bill of health. After having several days of blurred vision and nausea with more head "pressure" but than pain, I booked an appointment with a neurologist last month. He pulled my records from my 2010 hospitalization and the MRI and tests that were done while I was there. During my appointment he asked why nobody had followed up on the chiari malformation found while I was in the hospital!?!?!? My husband and I looked at each other dumbfounded! I had been in a great deal of pain and was on Dilaudid and Zofran around the clock, but surely my husband would have remembered the diagnosis that was given to us. My husband and I both recalled the hospital neurologist telling me that I had simply had a "thunderclap" headache and that the spinal tap to r/o meningitis had caused a CSF leak and that is why I had been so sick. That was all. Well, thank God for this new neurologist! He immediately ordered a new MRI and an appointment with a neurosurgeon. He started me on Topamax (before seeing the neurosurgeon) and I'm still taking it. I saw the NS last week and I'm scheduled for surgery on January 6th. I think I am most nervous about the surgery possibly not working. Probably because the NS won't "guarantee" anything. As a nurse, I know a surgeon's attorney will only allow him/her to say so much, but I'm scared of going through the pain of recovery...and not coming out any further ahead. Thanks for the vent.
I feel much the same way. I have been going through lots of Drs and psych places and all the tests are normal and then only thing they found in August was the Chiari. I think I am going to have my surgery soon too and am scared that I will go through all this and not be further ahead. But, as someone on here once pointed out: success stories don't need a support group. Meaning that lots of surgeries are a success and people move on and don't post about it.
I don't know how well you heal or what you have been through but I know that I have had many surgeries and heal very well. I also know that I listen to my body and try to be as active as possible during recovery (and follow the Drs orders I might add).
You will do GREAT! :-)
Welcome, we are glad you found us also.
My 18yr old son had his decompression surgery this past September and is doing great. Yes as Ophelia said, there are a lot of success stories and we don't hear a lot of them because they move on. Just make sure your NS is qualified to do the surgery! make sure he/she has done the surgery frequently. Having a great surgeon and a support group will make everything you are going through a little easier. Please don't hesitate to ask questions, we are all here to help.
Charlene
Aussie,this is what too many of us go through,I know the pain of it all.Please go to a specialist in the chiari field,that do a lot of decompressions each year.I am glad you have found this site,welcome.The people are the best support that means so much,I love and pray for all.Hope you find the right NS and get the help you need.
Aussie, glad you are here. It’s great to hear your NL was the one who took control got you answers, that’s rare around here! I just want echo what Lynn said about having the right surgeon- one who performs decompressions on a regular basis. Do you know what the decompression is going to include? Will you be getting a duraplasty? A plate to the back of your head?
Also, there are other conditions that are common to chiarians and important to be aware of. Not NSs screen for these. Hypermobility syndrome/ Elhers Danlos Syndrome is a collagen elastin problem that causes ligaments to become lax and stretchy, which can allow the vertebral joints to have too much movement, this happens at the cranio cervical joint too. It can cause a basilar invagnation too. Both of these are considered to be instabilities, and without intervention they will cause the same symptoms as Chiari. Do some research on Chiari and instabilities.
Dysautonomia is also a regular with Chiari, or anything brainstem. Take a look at that one too so you are aware and can recognize symptoms.
Jenn
Thank you all so much for your kind responses. I have a great deal of information to play with here and intend on doing some research. I appreciate you taking the time to answer. :)