I saw my NL today and now he says that I probably have Basilar Migraines and that is what is effecting my brain stem. He also said that the Chiari was probably incidental. WTH? How can Chiari be incidental when there was a syrinx? I had the decompression surgery for it. I am so confused and frustrated. He put me on a new med(promethazine) and upped the Neurontin from 900mg to 1500 mg a day. He also said jokingly that I am a bit OCD. I trusted him and now I am just so pist! OCD? Umm, yeah! I sure am! If he spent a day in my shoes....he would be a little OCD also. This is my damn life! I am sick of being in pain and having to see an NL that really doesn't want to look at the issues. I have an awful puling sensation in my spine, from my neck down. I asked him what that could be and he said he sisn't know. I know these docs aren't gods, but goodness sake. Don't bother to look into it. Oh and he is sending me to a balance doctor. I am so mad I could cry!
Does the Neurontin actually help you? I was taking 3600mg per day when I first became sick & they didn't know what was going on. I took Topomax with it & one day got sick of being exhausted and always in a fog. Finally I threw it away ....and there wasn't a difference without it pain wise. I am in no way telling you to stop your medication. It just didn't work for me. I went to a Balance and Ear Center. It actually helped me at lot. This is when they only thought I had a Cranial Nerve Disorder & did a test to see how fast sound gets from your ears to your brain. It was very long , painful & in the dark. But he referred me to a specialist at UVA Med Ctr....that sent me to Dr. Peter Jannetta in Pittsburgh, (the God Father of current Neurosurgical Techniques). As I look back at my Chiari journey and all the specialist & medication I have tried; I consider myself lucky to have found the right NS. I have tried many times to thank him for saving my life & keeping me from being a quadripledgic. He only responds " Tracy, You know who to Thank. I am just a vessel". It's very humbling.
Tracy,
Was this before or after your decompression surgery. I had been taking 1200 mg a day and dropped down to 2, there wasn't any difference. He just keeps on the Neurontin kick. I am furious and tired. I am in PA and was told by my PCP that I may want to look elsewhere. The more I read about the Basilar Migraines, the more I DON"T THINK I HAVE THEM!
I had been seeing yeloow spots here and there, but he seems to think they are part of an aura. It says that it happens an hour or less before a headache. These just happen whenever. Not in relation to the headaches. I am looking forward to the balance doctor. I hope he can offer some advise or help. Plus, my ears hurt all the time, "but look pristine." Especially my left ear. It never stops. And I read that basilar migraines cause pain in the back and side of your head. This pain is in the Chiari site. And then also behind my eyes. I feel like I did prior to surgery...same headaches. Thanks for your reply!
TracyZ said:
Does the Neurontin actually help you? I was taking 3600mg per day when I first became sick & they didn't know what was going on. I took Topomax with it & one day got sick of being exhausted and always in a fog. Finally I threw it away ....and there wasn't a difference without it pain wise. I am in no way telling you to stop your medication. It just didn't work for me. I went to a Balance and Ear Center. It actually helped me at lot. This is when they only thought I had a Cranial Nerve Disorder & did a test to see how fast sound gets from your ears to your brain. It was very long , painful & in the dark. But he referred me to a specialist at UVA Med Ctr....that sent me to Dr. Peter Jannetta in Pittsburgh, (the God Father of current Neurosurgical Techniques). As I look back at my Chiari journey and all the specialist & medication I have tried; I consider myself lucky to have found the right NS. I have tried many times to thank him for saving my life & keeping me from being a quadripledgic. He only responds " Tracy, You know who to Thank. I am just a vessel". It's very humbling.
Emmaline,
I would rather not go back to my NS. She is a part of the same facility as my NL. I would love to have a cine MRI done though. I know my body, but my NL just doesn't listen.
Emmaline said:
Nicolee, I'm so sorry! I feel your frustration! Is there a way you could see a NS again? I had no luck with any NL, only when I got involved with a NS did the ball get rolling.
Maybe a second opinion would be needed. And another Cine MRI would tell the tale...(((Hugs)))
I took Neurontin Pre Surgical & even before I got a CM Diagnosis. I did have Bi Lateral Geniculate Neuralgia cause by CM. Geniculate Neuralgia is a Cranial Nerve Disorder ......That makes you have pain in your ears. Please check it out if you have ear pain. It took me almost 4 years to get to the reason behind my ear pain. They decompressed cranial nerves4,5 &7.
nicolee said:
Tracy,
Was this before or after your decompression surgery. I had been taking 1200 mg a day and dropped down to 2, there wasn't any difference. He just keeps on the Neurontin kick. I am furious and tired. I am in PA and was told by my PCP that I may want to look elsewhere. The more I read about the Basilar , the more I DON"T THINK I HAVE THEM!
I had been seeing yeloow spots here and there, but he seems to think they are part of an aura. It says that it happens an hour or less before a headache. These just happen whenever. Not in relation to the headaches. I am looking forward to the balance doctor. I hope he can offer some advise or help. Plus, my ears hurt all the time, "but look pristine." Especially my left ear. It never stops. And I read that basilar migraines cause pain in the back and side of your head. This pain is in the Chiari site. And then also behind my eyes. I feel like I did prior to surgery...same headaches. Thanks for your reply!
TracyZ said:Does the Neurontin actually help you? I was taking 3600mg per day when I first became sick & they didn't know what was going on. I took Topomax with it & one day got sick of being exhausted and always in a fog. Finally I threw it away ....and there wasn't a difference without it pain wise. I am in no way telling you to stop your medication. It just didn't work for me. I went to a Balance and Ear Center. It actually helped me at lot. This is when they only thought I had a Cranial Nerve Disorder & did a test to see how fast sound gets from your ears to your brain. It was very long , painful & in the dark. But he referred me to a specialist at UVA Med Ctr....that sent me to Dr. Peter Jannetta in Pittsburgh, (the God Father of current Neurosurgical Techniques). As I look back at my Chiari journey and all the specialist & medication I have tried; I consider myself lucky to have found the right NS. I have tried many times to thank him for saving my life & keeping me from being a quadripledgic. He only responds " Tracy, You know who to Thank. I am just a vessel". It's very humbling.
Nicolee,
I am so sorry that you are being treated that way. I know exactly how you feel. It just makes you want to scream and shake people and say "I don't want to feel this way anymore. I am so tired" Or at least I did. I know it's easy to say but you should change doctors.I had decompression in 2001 and delt with a horrible nl for 11 years before I went back to a ns to get answers. I always thought the better she got to know me that eventually she would take me seriously and believe me. It never happened. She got it into her head I was a weak attention seeking house wife and no matter what I did she never changed her opinion of me. I did everything she told me to do visted dozens of therapists tried all kinds of meds changed my diet ect ect ect and nothing worked completely. It was an ordeal to find the doctors I have now but so worth it. OCD?? That is such an insult. Anyone that felt as awful as we do would be obsessed with finding an answer to our problem. That makes me so angry that you are being treated that way. You deserve answers and you deserve to feel better. And you deserve to be treated better and listened to.
Neurotin just made me tired. They kept upping my dose and eventually I could hardly open my eyes. Does it work for you? The balance doctor sounds hopeful. I had ear pain and I went to a Physical Therapist that did craniosacral therapy and it really helped with my face jaw and ear pain.
I hope that you find the answers to whats going on with you. You are too young and beautiful to feel the way your feeling. We are all here for you. Sending you {{{{hugs}}}} and prayers.
Wendy
I made the decision to see my PCP on monday. The crushing feeling in the back of my throat is getting worse. There is a NS who is local that I had seen for my herniated discs. He comes highly recommended. So I am going to try to get in with him, I am going to call my NS in the mean time and see what she says. I am also researching other options. I am not going to give up until I know that it hasn't reherniated. I am not taking all those neurontin either!
Thanks so much for the replies and support. I will keep you posted. And if things get any worse this weekend...I am not going to feel bad about going to the ER. I have never gone, always try to suck it up, but I am done giving a crap. Lol
Emmaline said:
I understand your frustration, but if you're not getting anywhere with your NL, where are you going? You're not getting heard. Maybe your NS would be agreeable to a Cine MRI. Sometimes we have to rethink and regroup to get the answers that we need.
Keep checking in with us, we're here.
nicole said:Emmaline,
I would rather not go back to my NS. She is a part of the same facility as my NL. I would love to have a cine MRI done though. I know my body, but my NL just doesn't listen.
Emmaline said:Nicolee, I'm so sorry! I feel your frustration! Is there a way you could see a NS again? I had no luck with any NL, only when I got involved with a NS did the ball get rolling.
Maybe a second opinion would be needed. And another Cine MRI would tell the tale...(((Hugs)))
So, I went to see my PCP today and she was helpful. She is also thinking that the headaches may be basilar migraines, but is not sure. (I am not buying it, I still think it's all just the Chiari) She is sending me for an MRA (MRI of the arties in the brain) then if that shows no abnormalities, she is going to send me for another MRI. She is refering me to Hershey Medical Center, here in PA. She wanted to send me there before, but my insurance at the time wasn't accepted there. I have heard only good things about them, but she is debating on sending me to an NL or an NS. She's not sure what to do yet. Overall, I was pleased with the appt. She is always very helpful and has my best interest in mind. So, for now I am just hanging in there.
BTW, I had an awful headache and nausea when I got home today. I took one of those Phenegran (promethazine) pills and layed dow. I woke up an the worst of the headache was gone and my stomache was not as upset. Not sure if it was due to the med or just the sleep. Lol :) Hope everyone is well!