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Posted 9/14/2013 4:46 AM (GMT 0)
Hello. I am new here. I wanted to check to see if there are any TN patient's here. I was diagnosed with bilateral brain tumors in 2008. The first was removed in 2009. I lost my balance on the left side but with therapy did well. I had Gamma Knife surgery on the right side that May. It was like feeding the tumor Miracle Grow. It more than tripled in size, and caused severe damage to the 5th nerve. I am not a candidate for any additional treatments due to the extensive damage. So, I have chronic pain 24/7. I am seeing a pain management specialist, and he does what he can, but I will be like this for the rest of my life. I am very concerned about the new drug laws that the government wants to pass, and to see if anyone has any ideas on the days that I am unable to eat...have lost over 30 lbs. Thanks for listening.
P.S. Please excuse any typos...I have no balance on either side and my eyes tend to bounce around :-)
Posted 9/14/2013 9:24 PM (GMT 0)
Hello Nanajo and welcome to the chronic pain forum. I am sorry that you have to be here but very glad that you found us.

Nanajo every now & then we get someone to come through that has TN and they for whatever reason do not stay and move on. Even if we do not have anyone here with TN we will be here to offer you support in any way we can. Pain is just that, pain, no matter what the cause.

Yes, all of us chronic pain patients are very concerned about all of the new rules & guidelines in place for drs that treat chronic pain patients. It is getting harder every day and of course we see it being more difficult for certain states than in others.

I am guessing that you are plagued with nausea. Does your dr have you on anything like Zofran or Reglan to help with the nausea? I have a lot of nausea, hardly a day goes by that I don't have to take something for it. Mornings can be really rough for me and nausea. If you have not spoke to the dr about this you really need to so he can help you with this. Please keep posting & let us know how you are doing.....Susie

PS: Keep checking back weekends tend to be slow.
Posted 9/14/2013 9:27 PM (GMT 0)
I'm just throwing something out there, as I'm not familiar...

But what about botox injections?



Merrida
Posted 11/3/2013 2:19 AM (GMT 0)
Navajo, if you're still around please post again and I will offer what I can. I had to take a mental wet noodle when I read what Susie said about TN pts not staying around very long. Guilty as charged, not here but on the TNA support group forum. I guess you could call it survivor's guilt after mine was for the most part successfully treated with surgery.

There is help.
Posted 2/7/2014 6:15 AM (GMT 0)
So far nothing has been working for me... I was put on Tegretol for a year 300mgs twice a day.. an antidepressant that did not work and now I am trying Cymbalta 30mgs... it is making me sick to my stomack so I hope that doesn't last long. I am guessing that my next step is surgery. The doctor mentioned the gamma knife surgery but I am wondering which surgery is best to do and has the most success?
Posted 2/8/2014 9:35 PM (GMT 0)
You might want to look into trigeminal nerve blocks and/or pulsed RFA. The success of those would be a good indication of whether or not a more invasive and potentially harmful treatment option like neurolysis or gamma knife would be effective or should be pursued. I personally have had some relief from a series of ketamine infusions which is a relatively harmless treatment to try in terms of lasting side effects.
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