Living With Facial Pain

Is there anybody from Iowa on here?


Hi Sharon...So you have Geniculate Neuralgia as well as ATN?

I would think that the steroid shot would be worth a try with you demonstrating symptoms of both. I have arthritis everywhere and tmj as well, my chiro works on tmj. What are your symptoms w/GN. I dont think you have anything to worry about as far as pain goes because they use an imaging machine and you are given a shot of goofy juice prior to them wheeling you into the procedure room.

I was told that the block was very effective for TN...which is what my dx was at the time.

Reading your post here though, I think you might want to check around for a neurosurgeon in your area that has GN experience. I also am getting what's called a P-Stim Treatments...nerve stimulation that hopefully will train my brain not to respond to my GN attacks. This particular treatment has only been approved for use in the US for a bit over a year now but my NS says it has been very effective on her TN patients. So far for me, with Geniculate Neuralgia, not so much...I will go for my 6th implant next week...and keep holding on to my faith.

I sure hope you can find someone to try these treatments on you and pray that you respond positively Let me know if there is any more information that I can explain to you. Keeping you in my thoughts and prayers Granny.

Be sweet to yourself!


Granny said:

Hi shinglesdidit, I see you tried this steroid injection. I have been responding to you. I am atypical GN and ATN. I am interested in this injection. Since I am also tmj and the TN nerve is 1 mm away from the tmj joint I am wondering if this is worth a try. I have arthritis at 58 at every level of 13 plus surgeries for my spine, all levels. I am wondering if I am arthritic at the tmj joint too. Your experience tells me no. I am still very interested in PNS. Sharon


Shinglesdidit, thank you for the great feedback. I have to get some extensive back surgery again. I am riddled with arthritis as I said at all the levels I have been fused at, that is 3 cervical, and the entire lumbar spine. I wanted to see a DMD but mine is out of town, 50 miles on my insurance. I am almost sure from having tmj surgery I am arthritic in both joints, right is worse and after being told the tmj joint is 1 mm away from the TN nerve by an ENT and even my neuro confirmed this. I think I might benefit from an injection. I am seeing another neurosurgeon tomorrow for a 2nd opinion on my back but he is listed my St. Judes as a doc that might be doing this PNS for TN. I am aytypical, my neuro does botox for my neck and does go into my scalp, I was presenting with ON but since he has been going into my scalp my ear pain and pressure/fullness as decreased. But I have also been adding new meds and increasing my gabapentin. Baclofen and amytryptiline were added. I tolerate these drugs, bombed on tegretol and lyrica so I just keep trying.

I am rambling on here, I see somehow I thought no for an injection for arthritis but now I feel differently about that approach. I have had many blocks and injections, some not sedated, but with this one I will get sedated. I was thinking a DMD might be doing this but insurance is tricky when they only see them as glorified dentists and you can't get something like this covered unless a MD does it.

Have we friended each other? I am ATN and atypical GN. I have the constant 24/7 building in intensity pain, my ear lobes hurt, earache, full/pressure and I have a bitter taste or oral pain which I have seen as part of GN. I do think my nerves are misfiring so PNS might do it for me and a steroid injection for inflammation too. Thank you so much, you are a sweety, I see you responding to so many of us here and you have some great info to share. Sharon-Granny....I am expecting my 4th grandchild this year!


Shinglesdidit, I think we are friended on this site because I always get an email alert if you are responding to an entry I post on this site. Granny


Dr. Casey is a wonderful man as well as doctor. He was on the phone with me for an hour one evening and I live in NY. I eventually went with Dr Jeff Brown. They are both Pioneers in this field, but Brown happens to be in my backyard. Good luck with your quest. may your choices be blessed. eva


Joya-Eva, are you type 1 or type 2 TN? Surgery has not been offered to me as I am ATN type 2. Thanks, Sharon


Im from Iowa too! Has he helped, and if so, what kind of relief are you getting.

D said:

I go to The University of Iowa Hospital & Clinics. The neurologist that I see is Dr. Shivapour, and he I s fantastic.


Hi. Yes I am from the Quad Cities and I have an apt next Wed w neurosurgeon in Ia City. I have no idea what they may or can do for me.So far Drs haven't done much at all. NOt willing to try very many meds. After one visit to neuro I have bn referred to Ia City. I look forward to it hoping for some miracle. But not getting my hopes up yet.


Renee said:

Im from Iowa too! Has he helped, and if so, what kind of relief are you getting.

D said:

I go to The University of Iowa Hospital & Clinics. The neurologist that I see is Dr. Shivapour, and he I s fantastic.


Darkas10 said:

I am from Iowa. My son has atypical trigeminal neuropathy. We've been consulting with Dr. Casey in Michigan regarding my son's case. We do have a good local neurologist here in town but because no medications have been helpful at all in reducing his pain, now working with Dr. Casey in MI. It's about an 8 1/2 hr drive to see Dr. Casey. A lot of corresponding has been done through e-mail with him. We had no luck with Iowa City or Mayo Clinic in Rochester.

I am scheduled Fri for the mvd surg in Iowa City. I am still reluctant. There is NO way I can afford trips any further away. I sure wish I could as I don't feel comfortable w the surgeon there.