Hello all! I love this site because it seems that no one else understands. I am 14-15 weeks post op. I spent up until 4 weeks ago on steroids, due to an allergic reaction to the patch. This caused severe headaches and hospitalization. Anyway, for the past three weeks I have been having extreme headaches. Went back to the hospital last week, had an MRI and the NS said I didnt have hydrocephalus. They concluded that I must be suffering from migraines. After two IV's of migraine medicine I felt better and was sent home. Later that evening, guess what? Major headache! I took the Relpax (elitriptan) that they gave me, moved on to naproxen, then pain meds. I only got relief for a few hours. It is back and they want me to see the NL because they still believe it is a migraine. Who has a migraine for a month? I can't understand. I have had one migraine over ten years ago and this is not it. It feels like before surgery. Pressure, pain, eyes jerking around in my head from time to time. (they said severe migraines can cause this). Anyway, I am stressing out. My husband received orders to Turkey in October. I cant drive over a mountain and definitely cant get on a plane in this condition. I feel like i'm going to lose it. If I cant fly, my two year old and I will have to live with family until his return in 15 months. I am so sick of this condition! No one should ever have to endure this type of pain. I pray for all of you. Has anyone had a similar experience? If so, any ideas on what I can do. I also have the visual disturbances again and feel like something comes over me and then things begin to swim around me. I am back to being afraid to drive. Thanks for the help.
What post op complications were you experiencing? I have recently started the pressure headaches (attacks as I call them), strange burning (like my skin is on fire) in different parts of my body (face included), dizziness has returned when driving, strange heart palpitations upon sitting or standing (sometimes randomly), and the neck pain is back. Just curious because the NS said my MRI looked fine.
Hi I still have daily constant headaches and neckache and I’m nearly 8 month post op. Dues another op in June to have my patch removed.
Hope things improve for you x
Thanks all for the replies! Beeba, the surgery was supposed to correct my tachycardia yet I still sit about 114 resting! When i was hospitalized a few weeks back they did an orthostatic bp check. It seems as though I might have pots, because when going from sitting to standing, my bp drops and my heart rate jumps up. I will not be going to Turkey with my husband, as I was denied medical clearance (lol). I cannot imagine why... Beeba, how did you discover that you needed revision? Cheryl too? I am having constant headaches, the pressure type (you all know what im talking about). If I take enough pain killers I can make it through the day, but then I just have to start all over again. Strange things also happen like they did prior to surgery. This has been blamed on my "panic" disorder. LOL Of course I panic, when my body does crazy things without my persmission! Anyway, sorry for the rant. Any info you have will be helpful. Just being able to talk about it helps me.
Well, I did have the dural graft so I am not sure what this means. 6mm herniation that is no longer herniated and a cow patch (dura). Not sure why I still feel this way almost 16 wks later...sickeningly tired of trying to make it through yet another day. So disoriented all the time.
I spent four entire months on steroids, and have only been off of them for 5 weeks. I had an MRI of the brain and cspine with contrast that were completely normal. I think that rules out tethered cord and meningecele. I just keep searching for answers. Even though I am 80 percent better, I still want the rest back...
My name is Amy and my Husband Glen has this same problem. My advice to you is to get a second opinion!!!!! I am fighting now to get my husband to a new doctor. These doctors that think they know everything really upset me. You may not have hydrocephalus, but you could be suffering from a syringomeylia. Which is very common with people who have CM. I will pray for you that you get some kind of comfort. My husband suffers everyday with headachs and a lot of other side effects... Thinking of you and hope you feel better
Has your husband had surgery yet? If so, how long ago? Sorry so many questions I am just searching for answers. Does anyone know of a good specialist in TN. I am considering going back there so my family can help me while my husband is gone. Anywhere in TN is fine, I will find a way to get there.
Okay all, the situation has been figured out! I went back to the eye doctor and my retinal swelling is back. This means Hydrocephalus. Beeba you were right. My NS is scheduling a shunt placement. After blacking out again last night and these chronic headaches, I cannot wait any longer. Anyone else have a shunt?