Life at present

Hi there , just wanted to share where I am at present . I have just had a procedure called sphenopalatine ganglion block. My issues have been severe headaches especially eye pain and pain around my tmj region. I also have numbness around my bottom lip and have no taste. So my oral surgeon decided to refer me an anaesthetist who specialises in this procedure. Four weeks ago I had a local anaesthetic to see if I would benefit. It was very painful but my word it worked . The pain went my taste returned and the numbness eased. It was amazing but five days later the pain returned and the numbness and taste went back to pre procedure. So I have been putting long swabs soaked in local anaesthetic to numb this ganglion which had similar effect but it only lasted for 30 minutes. So yesterday I went to tHe hospital and had radio frequency pulsing to the sphenopalatine ganglion. The pain gas gone my taste has returned but we are unsure how long the effects will last if it lasts for 4-6 months but the anaesthetist says if it lasts less it’s not worth redoing the procedure has it has got quite serious issues including the risk of strokes. So unsure what to do when it returns. So any ideas would be great .

Thanks Foxy for sharing with us. I personally don't have any ideas what to do next but wanted to send you my healing thoughts. You have been so brave. I am sure hoping you get a lot of relief from your last radio frequency procedure. From your write up I was unsure whether the block itself caused the headaches and eye/tn pain?

Thank you . Sorry no this headache has happened following surgery two years ago to remove arthritis from my jaw prior to jaw implants being put in. The drs seems to think that the muscles had not been used faro about 15 years then all of a sudden they had to work the pain was awful. But it just has not settled and I have had more Botox than Bo Derek , have to go to the hospital nearly every ten days for local anaesthtic to be onjected into the jaw joint area and temporalis muscle. So this procedure was discussed but as I say it’s not permanent the last time they tried the block without the pulsing the effects only lasted five days so I am hoping this will work for much longer but was hoping for a long term solution . My gp is not helpful and I have found everything I have tried to do to try and make life easier for myself it seems people are deliberately making life much more difficult. I tried to get the local administered at a more convenient hospital as it is I have to travel on the train for two hours to have it now then two hours home by the time I have finished it is a whole day job andi am so exhausted it’s silly. But no gp worries about money for a referral they just don’t understand. Sometimes it is very difficult to stay positive. Thanks for your thoughts. I saw last night a clinic in London at st Thomas’s . A dr tom smith has anyone had any experienced here or not?

Hi Foxy...Have you spoken with or been examined by a neurologist? How about an MRI? Trigeminal Neuralgia is very tricky. and there are various types and symptoms.. Trip around our site,so you will be TN prepared for your next conversation with your physician My symptoms were misdiagnosed for 3 years by the Dental Squad. I'm embarrassed to say that I wasn't active enough and accepted what they diagnosed . I had unnecessary extractions, root canals and dental bills. Good luck and let us know.

Hi billon never been examined by neurologist. But there is a place in London uk that I have stumbled across. I have read quite a bit on your site and think it may be tn2. I have never experienced the shooting shock pain just the deep boarding headache that is made worse with eye movement. I am really at the end of my patience with my self I just have no rhyme or reason why this happened . Yes I have had loads of surgery but really this came out of no max fax surgeon has been so supportive we have accessed a surgeon over I the us and he was helpful but really nothing seems to help other than local anaesthetic which is not ideal as I can’t inject my face myself. I will have another look at the info on the site. And get my thoughts organised and maybe get a referral to this dr in London . Thanks for the response greatly appreciate it .

Look up to the groups tab above… There is a UK group there with resources there for you!