Please help, need some input for chronic head pain for 20 months

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kjtawz
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Date Joined Aug 2012
Total Posts : 5
   Posted 8/12/2012 4:28 PM (GMT -7)   
My husband woke up from his 4th back surgery 20 months ago with a horrible headache. It starts at the neck and goes to his forehead. We have seen 26 doctors now and no one can help. They are suggesting the Diamond Headache clinic in Chicago or the Mayo Clinic in AZ. I have read a lot of reviews on Diamond and it seems it works best for migraines. My husbands pain is not a migrane. It is a burning headache that NEVER leaves. It has caused him so much suffering and his will to keep going is dwindling. He is getting very thin because he doesn't want to eat because his pain is always at a 6-10 pain scale. 6 if he is on his pain meds, which he is on 30mg MS Contin ER. His back is not good still and has a lot of pain still. I feel something happened during that surgery but doctors say it can't be a Spinal fluid leak because his pain is even worse when he lays down. Can anyone help us?

mpowell1
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Date Joined Aug 2012
Total Posts : 4
   Posted 8/21/2012 6:24 AM (GMT -7)   
Go to Duke University in North Carolina to see Dr. Linda Gray, a specialist in locating CSF leaks. Most docs don't know how to treat them nor how to locate them but she does. Haven't found anyone else in the nation with as much expertist.

mpowell1
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Date Joined Aug 2012
Total Posts : 4
   Posted 8/21/2012 6:25 AM (GMT -7)   
If his pain is worse lying down could be high CSF pressure. If it gets better when he stands then it very likely could be. Again, Dr. Gray in North Carolina is the expert!

kjtawz
New Member


Date Joined Aug 2012
Total Posts : 5
   Posted 8/21/2012 7:47 AM (GMT -7)   
Thank you for your comments. I have been told by the 26 doctors we have seen that because it gets worse when he lays down that there is no way it is a CSF leak. I think it is the only rational answer but they think I am crazy. Can you give me more info on Dr. Gray? I would like to try and find her and speak to her office. Anyone that could help me in any way would be appreciated.

mpowell1
New Member


Date Joined Aug 2012
Total Posts : 4
   Posted 8/21/2012 8:48 AM (GMT -7)   
Sure. 919-452-9502 is Horace, her assistant's number. Call that and ask to set up an appointment with her. As I said, it could be high CSF pressure which Dr. Gray is also well versed in treating. Acquire all of his health records and Horace should be able to help you get in contact with Dr. Gray.
 
Google Duke Medical Center Dr. Linda Gray and you should also come up with information. It's a long road to recovery with these CSF issues but don't give up !
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