Hi I have Atypical facial pain, and a neurosurgen out of John Hopkins did a glycerol injection and it is working. The procedure was last week. Anyone else have Atypical Facial Pain and have any had success with any procedure. It is horrible pain.
I saw my doctor at Hopkins yesterday. He thinks it's atypical. My condition has him somewhat confused. I am going for an MRI next week. The paper he gave me is titled "temporary nerve blocks for headaches/facial pain." After he gets the results, he'll know for sure. I don't know if they're glycerol injections. Mine has progressed gradually since January 2013, but it's getting worse.
Hi Liz. I can’t be sure, but it sounds like your procedure will be “nerve block injections”. These are different from glycerol injections. Nerve block injections are done usually with marcaine or lidocaine (a numbing agent) either alone or combined with a steroid. There are a series of injections done around the pain area - usually all the branches of the Trigeminal Nerve. Cheek, upper lip, side of nose, jaw, orbital area and the temple. They numb the area and of course block the pain until they wear off. Then, if the improvement of the pain is lasting, they are considered a successful treatment. Usually they are successful for only certain types of neuropathic pain. I had one series of injections 2 years ago. They were not successful for my very Atypical Face Nerve Pain. A word of caution, I had a horrific reaction to the shot that went into my temple - not an area I EVER before had any pain. My increasing pain was only ever in my left cheek. But the very, very prestigious & experienced Dr. said the “protocol” for the injections for face pain had to be followed & the temple (and all the other areas beside the pain area of cheek) HAD to be included & injected. I balked at the temple. I should have followed my gut!! Something went VERY WRONG. EXCRUCIATING PAIN in that temple began immediately and hasn’t left to this day 2 years later. That injection/mistake CAUSED A NEW PERMANENT PAIN AREA!! And the temple pain is so much worse than the cheek pain I originally went to Dr for!! His response - less than helpful. He said, “This has never happened before.” Then he was a bit standoffish & even uncaring. (His ego because of his mistake??) NONE of my strongest pain meds would even touch that pain. It was daily - I was in a fetal position screaming in pain! Now, 2 years later, it’s occasional (every week or 2) but just as excruciating. My neuro & my NEW pain specialist say that Dr injured my temple nerve with the placement of the injection. And he was a world-class, well-known dual Board Certified Neurologist & Pain Mgt Dr!! I DO NOT MEAN TO SCARE YOU about the Nerve Blocks. I just wanted to warn you about what COULD happen unexpectedly with a pretty low-risk procedure. Maybe I was an anomaly or unlucky. But I HAVE SUFFERED SO MUCH & SO SO regret having those shots. I TRULY DO WISH YOU THE BEST OF LUCK!!
Liz said:
I saw my doctor at Hopkins yesterday. He thinks it’s atypical. My condition has him somewhat confused. I am going for an MRI next week. The paper he gave me is titled “temporary nerve blocks for headaches/facial pain.” After he gets the results, he’ll know for sure. I don’t know if they’re glycerol injections. Mine has progressed gradually since January 2013, but it’s getting worse.
I am having one at the end of the month combined with a rhyzotomy.
I’m glad to see that it worked. I am scared, but have type 1 añd 2 and trigeminal neuropothy so treatment has been difficult. Life sucks so I’ll do anything.
Hi ZeldaSis, I'm hoping that after the MRI next week my doctor will have a definitive diagnosis. But I'm not ready to have any procedures yet. I would like to try more medications first. I've only taken a couple and I know there are more available. Mine is definitely bilateral, but what's strange is that the pain is usually on one side at a time, the left more than the right. Thank you for the advice/information.
Your welcome Liz. I hope I didn’t scare you! I feel information is power. I wanted to share my completely unexpected, life-altering, likely unusual outcome of the supposedly “no/low risk” nerve block injections. This way you can ask your Dr about about WHERE he will inject and WHY. And be so careful about the temple injection if that is an area your Dr will inject. Tell him/her my story! Also, I found out, too late for me, from my new Dr, that there’s a much better, safer method of injecting more PRECISELY, so the risk of hitting or damaging a nerve is removed almost completely. It is a flourescent-guided injecting procedure. Much more specific locations can be determined for the shots - to AVOID getting too close to a nerve to damage or hit one. If I’d known this was possible, I’d have INSISTED on having the most specific, precise method. Maybe your Dr will take this info into consideration if you decide to have nerve blocks done in the future. (I agree on trying all the medications you can try before doing any procedures.) Good luck Liz. I hope all goes well for you!
Liz said:
Hi ZeldaSis, I’m hoping that after the MRI next week my doctor will have a definitive diagnosis. But I’m not ready to have any procedures yet. I would like to try more medications first. I’ve only taken a couple and I know there are more available. Mine is definitely bilateral, but what’s strange is that the pain is usually on one side at a time, the left more than the right. Thank you for the advice/information.
Hi Summer,
I am glad to hear the glycerine procedure is worked. But, are you starting to have pain again if you may need blocks?
I have some form of TN2 and possibly supraorbital neuralgia. Dr. Lim, NS from Hopkins, performed a glycerin rhyzotomy on me 3 weeks ago. It has helped with the stabbing pain, but I still have a consistent dull pain. It also seems like my headache moved to the side of my head or the pain was always there, but the V1 area was more painful before the surgery.
Prior to seeing Dr. Lim, I had several successful blocks (none under anesthesia). Until the last two occasions I developed some kind of weird reaction, and my headaches increased after the last two injections ):
I agree the pain is horrible. I had a cervical fusion surgery last year for Atlantoaxial sublaxation and cervical instability. I though most of my pain was behind me after the surgery and then this pain kicked in. Whew this is tough!
I hope you find answers soon.
Hugs,
Trish