Need A Stranger's Opinion

So, I basically need to know if I'm being way too passive or not. For those who aren't familiar with my story, here's a quick run-through. So, I've had ear issues my whole life, starting with ear infections when I was I baby to finding out I needed Ear Tubes when I was 5 years old (being practically deaf up to then). As you can imagine, I experienced quite a lot of ear pain for most of my childhood. In 2005, I started to experience some new pain that was extremely intense, and it wasn't until 2011 that I was diagnosed with Trigeminal Neuralgia.

Then, in 2012 I underwent two surgeries, and this is where I am now confused. I have always been under the impression that the MVD (Micro-Vascular Decompression) and the Rhizotomy were performed on the 9th Cranial Nerve. However, last Friday I was consulting with the Alaska Cyberknife Center, per a request from my Neurologist, and they told me something very different. From the notes that they had, the doctor said that the MVD was performed on the 7th Cranial Nerve (Facial Nerve), while the Rhizotomy was performed on the 9th Cranial Nerve (Glossopharyngeal Nerve). What was even stranger, and something that I had never been told before, was that some of my symptoms also can be attributed to the 5th Cranial Nerve (Trigeminal Nerve). While that may sound strange, considering I've been diagnosed with both Trigeminal & Glossopharyngeal Neuralgia, but both by doctors here in Alaska & the surgery team in Seattle have only mentioned the 9th Nerve. I have never been told by anyone before that the two surgeries were on different nerves.

So, basically I need to know if I need to start yelling at doctors or not. If it's true that I've had 2 semi-successful surgeries on 2 different nerves, than why wasn't I told so? Also, what is the chance they got it right at all? The doctor at Cyberknife told me that because they (Cyberknife) don't have a defined target for Radiosurgery, there isn't anything they can do. For a second time, I am to exhaust all available medicinal options before considering Cranial Surgery. Considering that the last time I did that lead to me having two of those in one year, I'm not too sure if I want to have a third & risk having the same result. I'm starting to feel a bit surrounded, I have to admit. Things just seem to keep working against me. ):

Hi Nameless - it sounds really confusing doesn't it. Check out the useful links discussion - there is a great diagram in there on which nerve does what. With ear pain, I experience that too - from all the conversations I've had with my doctors it seems to fall into a couple of neuralgias - GPN, TN, Occipital (seen some folk reference it in the conversations) and Geniculate all seem to have some form of ear pain at times. Striking back also flags Nervous Intermedium neuralgia as a potential cause too. Ultimately, I think you need to read up on the ones I've listed above - the Geniculate and Occipital groups are both on the TN community as groups so you may find some information there.

With regard to not knowing which nerves they've worked on - I can only speak for what happens in Australia - and over here, before any surgery or treatment can be performed there is supposed to be informed consent - so the doctor has to detail in writing what treatment and surgery they wish to undertake, and the associated potential risks and side effects. In the case of surgery, its detailed on the admissions form and you have to sign the document demonstrating that you understand and accept being treated by the hospital. Not sure whether this occurs over there, but may be worthwhile having a look at your admission paperwork and see if there is any mention there.

The other useful links are in our "useful links" discussion found here: http://www.livingwithgpn.org/forum/topics/some-useful-links?id=6313115%3ATopic%3A43444&page=2#comments

in the featured section its a lecture on "tides of neuropathic pain" what Dr Ken Casey talks about are the surgical interventions on nerves and neuropathic pain (think its on page 2). These are mainly in reference to the TN nerves, but what he explains is applicable to most facial nerve pain. He explains, why sometimes these interventions need to be redone.

There are also some good anatomy maps of which nerve goes to which area of pain.

Its probably worthwhile, if you can hold of a copy of the "striking back" book by Janetta and Casey through the US Trigeminal Neuralgia Association - or online.

Your best defence, when feeling surrounded, is knowledge - it gives you the ability to ask the right questions - so do some reading and get feedback - you're on the right path. You can't fix up retrospectively not understanding what the surgeries were on, but moving forward you can make sure that you clearly understand what the intervention is and why they think this is the better solution for you.

Hope this helps.

Fellow ear pain since childhood (infancy for me - when I was 1.5 they removed my adenoids because I'd had so many infections and abscesses) here.

Something I wonder is - was your nervus intermedius sectioned? I've read a fair bit and it seems that is often associated with ear pain, too.

Good luck. This sort of thing definitely stinks!