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Old 03-01-2011, 08:07 PM   #1
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Join Date: Sep 2007
Location: colorado
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bahamalady HB User
pain from nerve damage

In 2007 I had open brain surgery to remove a cyst/tumor. About a year later I started having pain around my scar and a small bump developed. After having a CT scan they decided to go in and see what the mass was that had developed under my scalp. Turns out it was my hardware from brain surgery ( even though I was told they didn't put any in) my skull had shifted and the hardware had came loose. After they removed it along with some damaged nerves I felt good. But about six months later I started having severe pain, worse than anything I have ever experenced! And have been living with this for almost three years now. My doctors say that I have severe nerve damage and have tried to treat me by putting me on every pain killer under than sun. But it's to the point that they don't even help anymore and they pain is keeping me from leading a normal life! I'm just looking for someone how has chronic pain from nerve damage or any ideas of treatment? Also my doctor said that maybe doing an operation with the "Gamma Knife" could kill the nerves. Has anyone ever heard of this?

 
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Old 03-14-2011, 03:17 PM   #2
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Join Date: Mar 2011
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E11YearsOfPain HB User
Re: pain from nerve damage

Hello

I have been in similar situation for going on eleven years. I have had a few facial reconstructive surgeries--the first with metal (and bone) plates...after a few years (from 1991 to 1998) it was pretty much ok, then started having swelling (left side of face--sinuses were shattered which is why plates were used), and "sinus" infection one after another. Finally had surgery in 2000, and they found the metal plates had become loose and had a bone infection in my face as a result. BEFORE YOU HAVE ANY MORE SURGERY--like the gamma knife, please see a couple specialist and do your research. Typically, from what I understand, when the nerve is damaged, it is damaged. I have been living with severe, suicidal pain for so long. I sought out surgical solutions, either they were all different solutions, or the ones I did trust, said that nothing really could be done (well, there were a few options, like a neuroectmy, something like where they cut the nerve, but chances of it regrowing, and with a percentage of worse pain to boot. I am now on Pain Management...you just have to find the right mixture of meds, and don't bother telling family or friends about your meds and or regimen...for too many reasons for me to go into right now. It has been hellish...It is considered a Suicide Disease...one of the most painful conditions known to man (see Trigeminal Neuralgia sites and they discuss other neuropathic conditions such as this. I can write more later. Just be careful with surgeries...I have seen more people damaged then fixed by them. I don't know where they get their success rate numbers, because in all my years, I have yet to meet one..though they may be out living their life and not have time to come back and say hey this worked. I know I sound negative..it is a negative situation. It will take years to comprehend how much your life has just changed. I am sorry. Like I said, I am open to questions or info, just let me know if you are interested. Good luck. and very sorry you have to deal with this.

 
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Old 04-23-2011, 03:26 PM   #3
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Join Date: Apr 2011
Location: Bahamas
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AndrosLady HB User
Re: pain from nerve damage

Hello Bahama Lady:

I also live in The Bahamas - Andros - and I had (I hope and not have) trigeminal neuralgia for 15 years. In January 2011 I had a surgical procedure called microvascular decompression and woke up from anathesia free from facial nerve pain. Gamma knife, as I understand, is not the treatment of choice. It is a nerve destruction technique that most likely leave you with facial numbness. MVD, on the other hand, relieves the pressure on the trigeminal nerve, provide longer lasting pain relief and is far less likely to leave you with facial numbness. I was treated by Dr. Ian McDowell in Nassau and I recommend him to you. He sent me to Dr. Jacques Morcoes in Miami for my surgery after medications failed me.

 
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