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Old 06-19-2015, 03:01 PM #101
NicoleM10 NicoleM10 is offline
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NicoleM10 NicoleM10 is offline
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Join Date: Jun 2015
Posts: 1
8 yr Member
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Quote:
Originally Posted by momof4 View Post
Hi,

I am new here and have been searching for more information regarding recovery after surgery.

My story: I had mild headaches with an occasional "big" one for several years but in July '06 they blew up. They became intense daily with very severe headaches every couple weeks. The daily ha intensified to the point that I couldn't handle any noise, movement made it worse and of course light sensitivity increased. After several doctors treated me with no results I was referred to Diamond Headache in Chicago where I took loads of drugs but the headaches continued to worsen. I lost feeling in my fingertips, had increasing difficulty swallowing, the right side of my face sagged, daily toothaches, ringing in the ears, loss of balance, etc.

Against my Diamond's doctor's advice, I found a neurosurgeon that said that I had a "small" chiari and pulsating artery in my spinal cord that needed more room. (I may not be describing this in correct medical terms!) The surgeon is fabulous at surgery and I would recommend him in a heartbeat!

I woke up from surgery in February with a huge relief to my headaches. My struggle has been the recovery. My neck is so weak and I feel that I have come to a standstill. If I am up too long my neck will become sore and feel inflamed in the back to the point that I can't move it at all and it feels like my head will fall off. If I push it to far, I will get a headache although not nearly to the intensity that I had before. If I really overdo it, which means that I don't lay down 3-5 hours of the day and sit at my office desk for about 3-4 hours in the morning or try other activity, I may be totally flat in bed the next day in misery.

It has been just shy of 6 months since surgery and I am starting to wonder if something has gone wrong. The surgeon is caring and intensely intelligent but doesn't seem to like the follow up issues. The nurses will sometimes say that this is normal and sometimes will say that I should be doing better. I am not getting a clear answer. The dr finally authorized physical therapy but limited to only flexing my shoulderblades and stretching my chin in and out. (my chin doesn' go "in") He said no aerobic excersize or any other neck strengthening activities.

What do I do? The surgeon lives about 8 hours away and travel is difficult. He doesn't seem to think that I need to come back. I am longing to become stronger, both in body and neck and am starting to wonder if it will get better. I am healthy, just 39, average weight and no other health issues. I would love to hear your thoughts!

Thanks!
motherof4
Motherof4,

I am basically in the same exact shoes as you. I'm 6 months post op. I am 27 years old and other than corrective (unrelated) heart surgery at age 2 I am in normal health. I had my surgery December 10th, woke up the night after surgery feeling amazing. the day after I left the hospital I went Christmas shopping. I went back to work January 19th cause I felt that great. March rolled around and EVERYTHING came back. Headaches, dizziness, lightheadedness, ringing ears, temporary hearing loss and now neck head and shoulder pains. I actually have pins and needles and burning sensations in my left shoulder on a daily basis. My incision is still soar to the touch and so is my neck. I did an MRI for my 3 month follow up and even though everything looked great I told my doc that I feel horrible. My neurosurgeon referred me to pain management. Pain management referred me to a new neurologist. Both gave me prescriptions that were just a complete waste of time (Gabopentin, Trokendi and Zomiltriptan). . FINALLY my neurosurgeon's office decided it's time to come in for another visit... I hope you find something that works for you. And although I wish you well, it's a relief to hear that someone is experiencing something similar to me and that I am not just going crazy. If you know of anything that can help please reply. I will do the same!
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