I went to the ear, nose, throat specialist for a follow up as well as the neurologist today.
I had a CT, then met with the ENT, and he referred me to surgery for Eagle's syndrome. He injected lidocaine into the back of my throat where I have a terrible knot of pain by the roof of the tonsil. It seemed to go away when it was numbed up. He said on the CT the bone was long enough to be a problem on both sides.
One thing that caught me with the eagles thing was:
-Nerve pain running down the neck shoulder and left arm to elbow, little and ring finger, numbness, tingling, achiness, and occasionally swelling.
-Shooting eye pain, top inside corner of left eye.
I've had both of these specific symptoms and the arm part has perplexed everyone else....but I get the pain, tingling, and numbness down my left arm to those 2 fingers specifically. The numbness went away when I started nortriptyline.
Then I went to the Neurologist I've been waiting 6 weeks to see who referred me to get the MVD, and he said the ENT's conclusion is absolutely not related to the nerve pain in the front of the face. He gave me percocet, maxed the cymbalta prescription at 120mg/day and said I should consider the radiation knife and reconnect with the surgeon that performed my MVD.
So now I'm supposed to schedule the surgery for eagles, which he said they go in through the back of your throat and "chip" off the end of the bone that's sticking down.
Based on what I’ve read I’m leaning towards the ENT, get a second opinion with another ENT if you’re able too. Although i do agree with Neuro that you should connect with your Neurosurgeon.
Differential diagnosis for Eagles includes TN. You responded to the injection which is also diagnostic as well your ct shows elongation. Facial pain is also a symptom as the facial nerve is involved.
I would further investigate the eagles syndrome, as well as the surgery but you just had major surgery so I think some time is needed to gain strength etc, but that’s just my opinion. I’m not a doctor just a friend…
Don’t jump into anything, read and research as much as you can.
I’d stay away from gamma knife for now, that’s a destructive procedure that may not be necessary.
Check out the Eagles board here at Ben’s Friends as well http://www.livingwitheagle.org/
Huge ((( hugs ))) as you navigate your options in the coming days…
How soon did the pain start again after your MVD in April?
How soon can you get into see the NS that did the MVD? I think you need to ask him some questions about Eagle’s Syndrome and if he considered it. Also about glossopharyngeal Neuralgia.
Was a CT done when you had all the imaging before MVD?
I get the pain down the neck, shoulder, arm, fingers too, when I’m really triggered or have been doing way more than I can handle. My neurologist says its “convergence”.
So sorry you’re going through all this again so soon.
Did you notice this after the mvd meaning your neck, arm fingers because I did even before I left the hospital. Not pain but the numbess and the two fingers really bother me when I go to pull my pants up or pick something up. So when I went back for my 2 weeks check up the assistance told me it was a touch of carpel tonel syndrome, and to put a brace on my wrist. Look up that syndrome.
So sorry to hear that the Cymbalta issue caused you so much pain again. I know it takes a long time for regeneration and healing of nerves. Here’s hoping this will settle without having to have surgery again, or an ablative procedure and that redoubling of the meds works. Take good care.
Bellalarke
I think Mimi's comment was great and has covered most of what I have to say.
By "radiation knife" do you mean Gamma Knife?
Conflicting Doctors - Happens to me all the time. You might sort it out by going to the nuero surgeon and see what he says because he might say that he thinks it is Eagle's Syndrome too or he might say "radiation knife" is not called for. Then you may have only one alternative. ---- Or, go see other doctors for a second opinions to be more confident of your choice.
The fact that the ENT doctors sees something there, a bone that is in the wrong place, does seem to carry some weight as opposed to the Neuro who does not see anything but goes by pain symptoms as told to him by the patient. Also the specificity of Eagle's symptoms you say match yours also tends to point to Eagle's. But the fact that the MVD worked for seven weeks could be proof of something going on with the TN. (I have been told not to do gamma knife because it is destructive and another doc told me he has done it in the past and does not recommend it, BUT another surgeon told me she would do it and that the radiation would be so little and the damage to the nerve would not create a problem.)
The good thing is that you seem to have some choices that doctors support to relieve your pain. Some of us don't have that choice. The bad thing is that you have to choose between them. A little more research and consultation and I hope you find your way.
I can feel / hear your frustration! And rightly so. What’s with the mixed messages?
You deserve an explanation for the sudden change / cancellation of surgery.
Are you able to connect with your neurosurgeon? He should really weigh in, considering he just performed your MVD.
I’m so sorry you’re dealing with unanswered questions…
Lee, while everything is so up in the air I’d tell your a neuro how you feel about Gamma knife or any procedure at this point with so much uncertainty… any chance you can get referred to another ENT for a second opinion re the Eagles possibility?
Are the meds helping you get some pain relief? I hope so.
Positive thoughts, hope you get some answers soon…have been thinking of you…
Mimi
This really is a tough situation to figure out. Gamma knife has risks. Your surgeon may tell you that he will make the power so low on the gamma knife that the chance of permanent damage is very low.
The ENT personally owes you an explanation for the cancellation. See if it is possible to get one. Write a letter to him/her. I once resorted to snail mail when email and phone did not work. You have something on your CT (Was it a 3D CT?) that showed you had the specific indicators for Eagle's and then you also have the symptoms, it's worth following up on.
If your original ENT won't help, try to find another Eagle's Syndrome doctor referral on the livingwitheagles.org site. Also try to find other TN doctors on this website.
The MVD surgeon may actually agree that you have Eagle's. At least he needs to explain what may have gone wrong with the MVD. Why would a gamma knife work when the MVD did not? ( I would guess he thinks your TN is damaged at it's base where MVD surgery is, so removing blood vessels from it really is no help if it is damaged, so the gamma knife will destroy pain signaling nerves so you will not feel the pain?????) If you have something like Eagle's Syndrome or Sphenopalatine ganglion issues, would the gamma knife help that or just complicate things? If you have pain in your throat, why would the gamma knife help that? How many TN sufferers have throat pain? Would gamma knife help pain in your neck/arm/fingers? (The answer is "no" according to the surgeon who did my MVD.) I believe neck and shoulder pain can be involved in both Eagle's Syndrome and Sphenopalatine Ganglion Neuralgia, but not TN. Don't do the gamma knife unless you are very comfortable with his explanation.
which is a webpage on Glossopharyngeal Neuralgia (GN) by a Dr. Christopher Winfree in NY who distinguishes GN, eagles syndrome and TN as three distinct syndromes.
First, TN does not have pain in the throat as a symptom, but GN and Eagles Sydrome both have pain in the throat as a symptom. So, sounds like you got GN or Eagles. And it distinguishes GN and Eagles Syndrome by a CT finding a elongated styloid process (compression of the nerve by a bone) for those with Eagles Syndrome, so it sounds like you got Eagles Syndrome. Compression of the glossopharygeal nerve near the brain stem by an artery, not a bone, is GN.
The first choice surgical treatment for GN is an MVD on the glossopharygeal nerve (not the trigeminal nerve) near the brain stem on the artery that is compressing the it. The second choice for GN is gamma knife surgery on the glossopharygeal nerve (not the trigeminal nerve???).
But it seems according to this webpage that you, Shindig, have Eagles Syndrome, not GN. You should ask the neurologist if you have Eagles Syndrome and need a surgical removal of the elongated styloid process through a minimally-invasive approach through the tonsil or neck. That is my understanding from reading this, see what your neuro surgeon says. (If you don't understand what I am saying, email me in private.)
Perhaps Atypical Glossopharyngeal neuralgia? My throat pain is more like a strep throat that goes on forever (it seems). Shindig, is your throat pain intermittent or constant?
My neurosurgeon thinks he can help with the facial pain and the hemi- facial spasms but the throat and scalp pain may not be related to TN. same with shoulder, down the arm finger sensations is still up for grabs…
