Hi everybody! This is my first discussion post. I am so thankful for this site and hearing from everyone and your own personal struggles and thankfully some victories with Chiari. I am new to Chiari and have some questions about my first Neurosurgeon visit. I really would like to hear from any of you that have had a similar experience and method of treatment or method of exploration may be a better way to describe it.
Two years ago, I started with the dizziness and headaches. I was first diagnosed with Miniere's Disease until the dizziness became worse and caused vomiting. My ENT had an MRI ordered to rule out an Acoustic Neuroma. The AN was ruled out but a 10mm Chiari malformation was found. I was sent to a Neurologist because my ENT didn't believe that the symptoms I was having were from Chiari. Well it took a month and a half to get an appt. In the meantime, headaches became worse, blurry vision, ringing in ears, my hands are on and off tingling, numbness on my right cheek (on my face), and slurred speech like stuttering and clumsiness, word recall problems have developed. I have NEVER had any problems with any of these symptoms my entire life, including the headaches. These symptoms seem to have developed quickly and honestly are a frightening to experience for the first time.
When I finally was able to see the Neurologist, he did some physical tests on me and said that he was confident that I am suffering from symptomatic Chiari and got me an appt with a Neurosurgeon the next day. When I went to the Neurosurgeon, he asked lots of questions did some of the same physical tests the Neurologist did, but then said he was going to put me on Acetazolamide for 3 weeks and that during these three weeks I am to keep a journal of my symptoms and then 2 weeks off of the Acetazolamide, continuing to journal during this time as well and then he would see me back. That's 5 WEEKS! He also said that if this medicine lessens my symptoms, we would know that Chiari is causing my symptoms and if it doesn't help my symptoms, we would know that there is something causing these symptoms.
Has any one else been put on this regimen or method of exploration? With the way these symptoms have increased so quickly, I am a little freaked out and anxious...
I first saw an ENT & had the same tests & incorrectly diagnosed with many incorrect diagnoses but that's where our similarities end. I do though recommend you call your NL and ask for them to get you in to see another NS for a second opinion and why and if they think this is a good treatment option for your specific Chiari situation. You didn't say in your post if you had any CSF Blockage or how the Acetazolamide is working. Acetazolamide is generic for Diamox and is used to treat Intracranial Hypertension. When your CSF pressure is increased, it is forced to find new pathways and that is believed to cause most Chiari symptoms. I have Chronic Intracranial Hypertension aka Psuedotumor Cerebri, but haven't personally heard of this treatment approach. I am sure your NS is just being cautious before he recommends additional invasive treatment options.
Please try not to freak out. Call your NL and ask for a referral to another NS. Please do not stop the first NS treatment without consulting the prescribing Dr.
When I first saw my normal doctor about my bad headaches, nausea and vomiting she said it was from working to much and keeping my head in a downward position. She sent me to a PT who squeezed and pushed his thumbs on my neck and really made it worse so I went back complaining. My dr didnt seem happy but she ordered and MRI. Next day she called me left a message and said it was Chiari. She then referred me to the NS. I saw him and really was amazing. He did the normal tests, asked questions and explained in detail about Chiari. I was 18mm and he said that the decision was up to me but that with it being so tight and compressed I was a great candidate for surgery. I told him I would think about it and got a second opinion who pretty much did and said the same. I had the surgery a few months later with the first Dr.
Sorry I accidentally hit post. You should get a second opinion for sure. They should be able to tell from the MRI I would think. Maybe this DR isn’t familiar with Chiari and is uncomfortable making a decision.
I would not stop until you feel comfortable with what a DR is telling you - I ended up seeing 4 Drs and the last one was at UCLA, and that is who is doing my surgery. The first 3 Drs couldnt agree on what surgery I needed first so my DR sent me to UCLA.
Keep a journal of how you feel and keep a binder with all your records and try to get the CD for any MRI or CT - Good Luck
I experienced headaches so bad that I thought it was my hair, then the verdago then the segers. All the while with every different thing I would go to my doctor who told me it was allergies, over weight and my imagination. I and a family member told my doctor we were going to a different doctor. to see what they had to say and all of a sudden I was given an appt for an MRI, where they immediately saw the problem, during the process. Less than a week later I saw a nerologist who said "yes you have chari but not at the stage of great emergency. Then I didn't hear from them again for a while( about a month), but was given pain and verdago meds. Told once again that I would go to get help else where I got a call on a tuesday to do pre-surgery and by friday I was asked to come in that Monday morning.....
I would like to ask all those on this sight who has gone through the chari surgery and ended up with the nerves and muscle on both sides of your skull not attaching. I need to know how common is that with this surgery???? Please respond
I have been on diamox for 2 years now. It was given to me for constant dizziness before a lp shunt was put in . I was told the shunt would help my" high csf pressure". That I would not need diamox after shunt. I have not been able to wean down from the diamox without getting unbearably dizzy. I later found out my pressure was not considered high. I did not get a second opinion( big mistake!) The next neurosurgeon I saw said he could remove the shunt I did not need it.( my highest opening pressure was never over 20). I have not been able to find 2 neurosurgeons to give me the same diagnosis. I have had increasing symptoms over the last 6-8 months. Newest ones are numb toes, tingling hands, clumsy, blurry vision. Yes , this is frightening . I am scheduled to see a chiari specialist in Hendersonville soon. Thanks to the wonderful information on this site I am will be more prepared for my visit. I have been reading about so many that have similar sxs to mine. Dont just take one doctors opinion. Be sure to get a second one also. I hope every thing goes well for you.
Hi Marcy
Honestly like you I have never written anything on this blog either. I have read a lot and really felt like I had nothing to say because my symptoms weren’t as bad or as frequent as many others. I have felt better knowing I am not alone. Or making things up. Your message really struck me because many of the symptoms you’ve listed are the exact ones I experience regularly and randomly. Also similar process of diagnosis with Meniers and AN. My Nerologist doesn’t feel my 5mm hernia ruin isn’t causing the issues. But I have no other illness, no allergies, and take no meds. My Nero dr did have me do PT for my dizziness which did help and when it gets bad again , cuz it is never fully away, I do the exercises again. It’s is frustrating and very humbling to live with Chiari but my personal experience is to take one day at a time, do the best you can, not worry so much of what others think, listen to your body. Sorry I couldn’t help with med advice but know your not alone:)
Thanks everyone! I so appreciate your wisdom and openness to share your stories. This is a huge help. I am going to call the NS tomorrow and request an MRI of my spine. I did some research on the CSF blockage. From what I read this second MRI is necessary to see if there is blockage. Do you guys agree? I only had an MRI of my head and the very top of my spine.
As far as the "Diamox". I took my first pill last night. I woke up with some of the same symptoms, especially the tingling in my hands, but that has faded. I do have a slight headache but it is not as bad as the usual. I also have a strange warm sensation on the base of skull/top of neck. I am going to give this a couple of days. The prescription pamphlet says that it will take a couple of days for my body to get used to the drug.
I feel encouraged from all of you too, that if I do not feel comfortable with the treatment or methods that my NS is trying, I need to ask my Neurologist to refer me to a different NS. I am interested to see what he says about a 2nd MRI and if he doesn't think I need it, why? This 2nd MRI makes total sense to me. Thank you all again!!
Thank you for your honesty, Eybot and your sweet words. It's so comforting to know I'm not alone. :)
Marcy
Eybot said:
Hi Marcy Honestly like you I have never written anything on this blog either. I have read a lot and really felt like I had nothing to say because my symptoms weren't as bad or as frequent as many others. I have felt better knowing I am not alone. Or making things up. Your message really struck me because many of the symptoms you've listed are the exact ones I experience regularly and randomly. Also similar process of diagnosis with Meniers and AN. My Nerologist doesn't feel my 5mm hernia ruin isn't causing the issues. But I have no other illness, no allergies, and take no meds. My Nero dr did have me do PT for my dizziness which did help and when it gets bad again , cuz it is never fully away, I do the exercises again. It's is frustrating and very humbling to live with Chiari but my personal experience is to take one day at a time, do the best you can, not worry so much of what others think, listen to your body. Sorry I couldn't help with med advice but know your not alone:)
I also never post or respond to anything myself, people, family ect…just don’t understand what we go. Change, pain, and ect… Easier said. On my page I have a prayer I just posted from ben’s page it’s helped help me
I read you post and was just glad you posted it. I was diagnosed with CM right after I had an Acoustic Neuroma.
When I woke up I was sooo dizzy. They told me it would end before I left the hospital. But it has not.
Different Neuro's tell me different thing so I consulted with a bone specialist and he told me what to expect
with CM and he didn't think I needed surgery. But arms get sooo tight and I am beginning to drop things.
On the 15th...I will see new doctor....so I am hopeful that it will all work out for me. This dizzyness ican be just maddening. ANYBODY have this issue and can help?
I am so glad I found this support group. I had had headaches over the last couple of years, 1 a month that was severe but last month I startd having headaches every week and then the dizziness started, When my RT eye wouldnt focus I was thinking stroke. I was admitted to the hospital here in Longview Texas for 2 days while testing. I was diagnosed with a 10mm Chiari. This explains a lot of the pains that I have been having over the last couple of years. I too have been having issus speaking and trouble finding words the complete my sentences. My cognitive thinking has also been affected. My neurologist put me on Effexor to help with the migraines but hasnt helped. My NS here is telling me that the Chiari will not cause dizziness or blurred vision so I have an appointment with another NS in 2 weks, I want to see a Dr that has more experienc with Chiari. I am really scarred at this time.
I have a lot of the symptoms that you all are talking about. I am looking at another MRI soon and hope they can find out what exactly is wrong. I am sure that it is Chiari with other stuff on top of it. I have read the symptoms of Chiari and have them. The trouble swallowing is one of them along with the massive headaches and ringing in the ears. I have an appointment with a surgeon soon. My friend recently had surgery and he is feeling much better. He has given me hope for my situation. Best of luck to all of us with this crazy thing!!
I think you should find a neurosurgeon who specializes in chiari. talk to them, as I find them to be more knowledgeable. Ithink you are better off deciding with a surgeon wheter or not you should get surgery or just manage your pain& symptoms, & even then, do not hesitate to meet with as many surgeons as you have to until you feel comfortable. I think you will just know when you find the right one. In the mean time, keep educating yourself. If I hadn't, I would have stayed with the 1st surgeon I met, who was very compassionate, but because of my research, I found out his plan was completely dangerous & inapropriate! where do you live? There are resources here that can help you find good doctors