Hello everyone,
I am new to the group and wanted to share my story. I have had facial pain since 2009 but it had gone undiagnosed as TN. In May of 2010 I was diagnosed with a Brain tumor on my brain stem. In 2011 I had 2 craniotomies to biopsy the brain tumor. It is a stage 1 pilocytic astrocytoma which is benign at this point and was unable to be removed because it is mixed with healty tissue. However it is considered malignant due to the location of the tumor. Since the tumor has not had any growth in the last 2 years I have decided not to do chemo and radiation until if or when the tumor grows, I am just being followed by frequent MRI’s.
Having the brain tumor has also caused me to have increased intercranial pressure and I now require a shunt to keep my pressures normal. The shunt is in my brain and drains into my abdomen. I had my first shunt placed in August of 2011. Shunts can become finicky so I am now on my 4th shunt. So that means that I had 7 cranial surgeries in a year.
So that’s a little history and now I'll explain my TN issues. In May I had a flare up and ended up in the hospital for pain control. The had placed me on Tegretol and Baclofen but I was unable to tolerate the Tegretol due to some crazy side effects. Pain management performed a sphino-palintine ganglion block (transnasal) and it worked great so I had these done every 4 weeks and was pretty much pain free.
In October my shunt malfunctioned concurrent with a TN flare up and I ended up back in the hospital at Research Medical Center since this is where my Neurosurgeon is located. Since I was having the TN flare up we decided to try a Percutaneous Balloon compression. I had success for about 2 weeks and then the TN returned. So my Neurosurgeon recommended a 2nd balloon compression.
I had the 2nd balloon compression done and instanty in recovery woke up in even more intense pain. The entire right side of my face including my tongue is completely numb. Its numb but painful, constant deep ache. I also lost the strength in my lower jaw muscle. I am unable to have the force to bite through any kind of meat or anything crunchy or tough. I can’t even feel my teeth meet on this side. It has been 4 weeks with no improvement. I returned back to the hospital about 2 weeks after the procedure because I just couldn’t take it anymore. I was put on several different meds such as lyrica, Neurontin without any success and had horrible side effect from them. I was discharged without any real answers except to give the nerve time to settle down.
My fear is that I have ended up with Ansethsia Dolorosa. I know I have to be patient and give the nerve time to heal but this is so much worse than the TN that I was dealing with before. I am not a good candidate for most of the medications to treat TN so I would welcome anyones advice on any homeopathic therapies.
This is my story in a nutshell. I look forward to interacting with some of you from this area.
Good luck to you all
Jessica