It has been a difficult week...yesterday the neurosurgeon said that I do have drooping of the cerebellum tonsillar portion of my brain into the spinal cord area, but it doesn't go low enough to be considered Chiari Malformation and he said that he would not do Chiari surgery even if I had it because of the complications. And he said that the clinics for Chiari in other areas he wouldn't recommend that I go to them because of their aggressiveness to do surgery. Does anyone have anymore information on those clinics? Has anyone as an adult had surgery? Has anyone else had plenty of symptoms of Chiari and other neurological symptoms where the docs get confused? He told me that I do have something wrong but he isn't sure what, that is exactly what I have been told over and over again.
He did suggest that I follow through with the barium swallow that the GI doctor ordered and the general surgeon also suggested to see if I have swallowing problems because of the brain connection and if I do then he will consider doing a Cerebral Spinal Fluid test to see if I have blockage of the CSF.
The General Surgeon said that if I do have problems with swallowing due to brain connections then he will not do the hiatal hernia surgery because it could cause more swallowing difficulties and make my situation worse.
The General Surgeon also suggested that I consider going to Mayo Clinic as did a neurologist.
I have balance issues, occular migraines (no pain, but visual problems), heart palpitations/murmurs/irregular heart beats, tremors, weakness of right leg and lack of refluxes on right side, problems with brain/hand coordination at times, neck pain and shoulder pain, numbness in my right hand, pins and needles in my buttocks areas, at times pain all over my back area, arthritis in my back, night sweats, sleep apnea, reactive airway (laryngospasms), voice changes.
Does anyone have any helpful suggestions. I am running out of ideas and my husband doesn't want me to stop going to doctors. Has anyone gone to Mayo Clinic?
Do any of you have other neurological problems with Chiari? Have any of you been told that you don't meet the strictest criteria of Chiari and yet have brain drooping and later find out that you do have it?
Thank you so much for your encouragement. Have you had surgery with relief?
Emmaline said:
Dawn, it sounds like you're getting the famous run around...It doesn't matter what size your herniation is. Any NS that says it makes a difference is not knowledgeable in Chiari. If he or she was, they would do the flow studies right now. So many patients have been led down this path that just wastes time and energy. Treating individual symptoms like they are unrelated is wasting your time....and it doesn't address Chiari.
If you can see someone else move on, if you can't then ask for the flow studies. Hang in there!
Educate your self as much as possible, so that you can have questions ready.
I had surgery 5 months ago. I went to the Mayfield Chiari Center and honestly they turned my life around. I did not find that they were aggressive, nor did they push me into surgery. They did however take me seriously, order a CINE MRI to see if my csf was blocked, and take the time to go over all my symptoms and answer all my questions. I have zero regrets on surgery and in 5 short months I've seen improvements in all areas. Don't give up hope! Try to find a doctor more knowledgeable about chiari!
Is the Mayfield Chiari Center in Milwaukee Wisconsin? Thank you for the encouragement and I am grateful that your surgery went well and even more grateful that you have had improvements in all areas.
Thank you,
Dawn
Anglyn said:
I had surgery 5 months ago. I went to the Mayfield Chiari Center and honestly they turned my life around. I did not find that they were aggressive, nor did they push me into surgery. They did however take me seriously, order a CINE MRI to see if my csf was blocked, and take the time to go over all my symptoms and answer all my questions. I have zero regrets on surgery and in 5 short months I've seen improvements in all areas. Don't give up hope! Try to find a doctor more knowledgeable about chiari!
Dawn, i have a surgeon minimizing my Chiari as well he says its not enough at 7MM to do the surgery and he believes my symptoms are from a bulging disc.
Have you asked for more tests? a full spinal work up CINE and a lower lumbar MRI? this way they can see the full picture then yes go to a doctor out of your area if thats what it takes. there is a list on here of chiari doctors you can look to see whats closest to you then ask for a referral. I had a horrible getting my other tests and referrals to the surgeons i wanted to see so it might be a fight with your insurance company or primary care doctor but dont give up keep pushing for your health.
Mayfield is in Cincinnati! I've heard good things about Wisconsin too though!
DMJMMHH said:
Anglyn:
Is the Mayfield Chiari Center in Milwaukee Wisconsin? Thank you for the encouragement and I am grateful that your surgery went well and even more grateful that you have had improvements in all areas.