Danielle, if it's not too late see if you can get a Fiesta 3D scan, they are much more accurate that the regular MRI's
Danielle, you asked: "Would you happen to know what the common steps are after finding out you need surgery? Which surgery should I try as a first resort and what happens after that?"
For Geniculate Neuralgia, MVD is pretty much the only effective surgical option (at least that I know of). Not all MVD surgeons do the variation that addresses compression of the Nervus Intermedius, as that compression zone is typically deeper and more difficult to reach without moving a lot of nerves around and risking collateral damage. I believe I have heard that Patel may be one of those who does, but you'll need to consult with him. FYI, the surgeon I mentioned in Great Neck Long Island is Jeff Brown. He'd be another option if for whatever reason you and Dr. Patel decide he isn't the right practitioner for what you need.
All varieties of cranial neuralgia are basically diagnosed by symptoms. It's next to impossible to definitively rule in or rule out a specific type of compression until the surgeon goes in and looks around. I know that's a tad maddening, but it is what it is.
When you see Patel again, do make a point of giving him the home page Internet address for Living With TN. Some of the members have had good experiences with him, and others among his patients may benefit from the support and information they find here.
Go in Peace and Power
Red
GPN = Glossopharyngeal Neuralgia, generally believed to be a result of vascular compression on the 10th cranial nerve rather than the 5th.
Red
freeSpiritDanielle said:
Somethingforkate,
I haven't heard of GPN vs GN. I will look into that now. Thank you so much for the info. I don't want to keep repeating myself, but I do have a MRI scheduled next week. I hope I find something out and can get some help here with the next step...whatever that is. The NS did diagnose me with GN, thanks to this site, I determined my diagnosis on my own. Simply amazing!
Thank you so much! I can't figure out how to add you as a friend, so please add me, if you don't mind.
Danielle
Sorry FreeSpirit for my paltry response. I have just added you as a friend and would love to talk but the pain is so bad that I've been screaming the house down for weeks. XXX
Hi. I have a MRI scheduled Friday followed by an appointment with the neurosurgeon. Has anyone had alcohol or glycerol injections in the vein? I have read that the success rate of those are slim, because the pain returns. I am wondering if anyone else had this done and what they think. I want to have knowledge of all of my options for my appointment on Friday. Thank you in advance!!
Glycerol Rhizotomy isn't done "in the vein". Glycerol is injected into an area adjacent to the trigeminal nerve in one of the cavities of the skull beneath the brain. The procedure has the least time persistence of any of the surgeries used in TN, with pain relief generally lasting a year for about half of those who receive it. Glycerol can be repeated; I've talked with patients who have had six or more of them over the years. It tends to last less when pain has come back repeatedly.
See our articles under the Face Pain Info tab on the menus.
Go in Peace and Power
Red Lawhern, Ph.D.
Moderator and Resident Research Analyst
Red,
For some reason I am just seeing this or if I read it before, I may have been on meds and don’t remember. I am excited to learn that you have heard of Dr Patel. Is there a way to connect to other members that have used him for MVD? I am not sure what my MRI is going to show or what my options will be, but I am trying to learn as much as I can before I go, so I will understand my options. From everything I have read, MVD is the most effective option. I’m to the point where I want this over with and I don’t want to have to go through multiple procedures or the pain to come back in a year. I want this to get fixed and get on with my life. I appreciate you answering all of my quetions! You have been most helpful. If I can have MVD, then I am going to let him know that is what I want. I don’t know if that would be possible if he thinks that I should try glycerol or alcohol first? I am in so much pain right now (have been since Sat) and can not wait for Fri to come so hopefully I will have answers. Part of me is scared he won’t find anything on the MRI or won’t be able to determine exactly what’s wrong. That makes me more nervous than the idea of MVD, although I know that sounds crazy. At this point I would rather have brain surgery, than for him to not find anything.
Thanks again for all of your help! This forum has truely been a life saver! If I didn’t stumble upon this site, I would be going to all of the wrong doctors and continuing to get no answers. I contacted Dr Patel after learning on this forum and he agreed to see me. If there is a way I can get in touch with other members that have gone to Dr Patel, please let me know. I will also share this site with him. I think he will be interested in it.
Best Wishes and so much thanks,
Danielle
Richard A. “Red” Lawhern said:
Danielle, you asked: “Would you happen to know what the common steps are after finding out you need surgery? Which surgery should I try as a first resort and what happens after that?”
For Geniculate Neuralgia, MVD is pretty much the only effective surgical option (at least that I know of). Not all MVD surgeons do the variation that addresses compression of the Nervus Intermedius, as that compression zone is typically deeper and more difficult to reach without moving a lot of nerves around and risking collateral damage. I believe I have heard that Patel may be one of those who does, but you’ll need to consult with him. FYI, the surgeon I mentioned in Great Neck Long Island is Jeff Brown. He’d be another option if for whatever reason you and Dr. Patel decide he isn’t the right practitioner for what you need.
All varieties of cranial neuralgia are basically diagnosed by symptoms. It’s next to impossible to definitively rule in or rule out a specific type of compression until the surgeon goes in and looks around. I know that’s a tad maddening, but it is what it is.
When you see Patel again, do make a point of giving him the home page Internet address for Living With TN. Some of the members have had good experiences with him, and others among his patients may benefit from the support and information they find here.
Go in Peace and Power
Red
I searched for Dr Patel and found some other members. Thank you for letting me know!!
Richard A. “Red” Lawhern said:
Danielle, you asked: “Would you happen to know what the common steps are after finding out you need surgery? Which surgery should I try as a first resort and what happens after that?”
For Geniculate Neuralgia, MVD is pretty much the only effective surgical option (at least that I know of). Not all MVD surgeons do the variation that addresses compression of the Nervus Intermedius, as that compression zone is typically deeper and more difficult to reach without moving a lot of nerves around and risking collateral damage. I believe I have heard that Patel may be one of those who does, but you’ll need to consult with him. FYI, the surgeon I mentioned in Great Neck Long Island is Jeff Brown. He’d be another option if for whatever reason you and Dr. Patel decide he isn’t the right practitioner for what you need.
All varieties of cranial neuralgia are basically diagnosed by symptoms. It’s next to impossible to definitively rule in or rule out a specific type of compression until the surgeon goes in and looks around. I know that’s a tad maddening, but it is what it is.
When you see Patel again, do make a point of giving him the home page Internet address for Living With TN. Some of the members have had good experiences with him, and others among his patients may benefit from the support and information they find here.
Go in Peace and Power
Red
The decision to go forward with MVD will likely be based on the patterns of your pain more than on specifics of an MRI/MRA scan. Likewise, neurosurgeons almost uniformly recommend that if MVD is an option, it is most likely to be effective if it is the first procedure employed. In cases where MVD does not produce the relief desired, RF Rhizotomy may be considered as a second procedure. I personally would never recommend Gamma Knife for any form of face pain, unless MVD is medically not an option due to your medical history or other health factors.
Be advised that while MVD is pretty much the gold standard for facial and deep ear pain due to neuralgias, the procedure is also very expensive. You'll want to see what your medical insurance is willing to cover. I've heard numbers ranging upward from $75K -- sometimes substantially "upward".
Regards and best,
Red
freeSpiritDanielle, I just saw your response trying a tens/PNS unit. You are right. It only treats the muscles. I am using something that was recommended on this site that does trigger point acupunture with electrical stimulation. I bought it on Amazon for $145. It is called a POINTER EXCELL 11 DIGITAL ACUPUNTURE & PRESSURE POINT LOCATOR. I use it on the sites I found googling for TN acupunture and have found it to be helpful. It feels like I am sticking a needle in right where I hurt. The TN areas are along the lower jaw, the eyebrow and on the side of the nostril. I like it most along the jaw because I get stimulation almost on the whole side of my face and next the eyebrow. It is primarily for muscle but it feels like it touches the pain. I have used a tens unit on my face for tmj pain but I don't think that would be helpful for my neuralgia pain. And because you have GN with the deep ear pain/stabbing I don't think this device would relieve that pain unless their is a site somewhere around the ear that goes deep. This device feels like the stimulation goes deep while a tens is superficial. I have ATN too and my GN is atypical. I will experiment with my unit to see if I can feel stim getting deep into my ears.
I read also you are using some type of oil. Are you putting drops in your ears? What is the name of this oil? I get deep earache pain and I have used olive oil with garlic in my ears. And I do smell like garlic. But it helps some. Sharon
Sharon,
In my quest to finding relief from the excruiating pain, I had a friend that actually brought me over a whole bunch of Young Living essential oils. She kept telling me to try them, but I honestly didn’t think for a second that they would work. I applied the ones she looked up and put together for me, on a cotton pad right around my ear, neck, behind my ear, and my jaw. I was still recovering from TMJ surgery (which was originally what I thought was wrong with me), as well.
I was in so much pain, but it wasn’t time to take another pain pill, so I was stuck. I tried the oils and to my disbelief they actually worked and I didn’t have to take a pain pill for hours after I should have. I just became a distributor for Young Living essential oils (they are the best, but the most expensive). I ordered the kit with a diffuser and will be getting it soon. I also ordered others that are known to help with neuralgia. I have an essential oils book that lets me know which ones are known to help. I’ve also done some research online about essential oils and TN (I couldn’t find anything specific to GN). I am now a firm believer in them. I know I still need Lyrica and other meds, but if I can cut down on the pain meds, that is like gold to me.
Let me know if you are interested and I can discuss it more with you. I will share whatever info I have. I am still new at it, but I have been doing a lot of research on it and my friend is a great source for me. I am a distributor, so I can sell to you under my name and mail them to you for distributor pricing or you can become a distributor too. I’m not trying to make a business out of it, I’m just trying to get access to the oils. There are applications that you can dilute the oils and put them in your ear, but I haven’t done that yet (since I know it isn’t actually my ear).
I gave her oils back to her awhile ago, so now I’m just starting to put together and use the ones that were just delivered today (I have more coming Monday). I’m in immense pain and yesterday was probably the worst ever. I can’t wait for my MRI tomorrow. If MVD is an option I’m going to ask for it immediately. Red, the moderator has been so incredibly helpful in helping make that decision. Sorry to be rambling…
Best Wishes,
Danielle
Hi Everyone,
I have been having stabbing like pain in my ear since Saturday. Went to the UR and was told it was most likely GN. Had an appointment yesterday with a Neurologist who is scheduling a MRI but feels the diagnosis is correct. I am currently taking some anti-seizure medication that had dulled the pain. Being this is my first week I know that I am luckly with being diagnosed so early. Has the anti-seizure medication helped or has it just dulled the pain. I still feel like there is a pain in my ear just muted. I have only been on the medication for a couple of days. Anyone else with this issue?
My “story” started out with dull pain deep in my ear and then turned into the worst stabbing pain imaginable! Please read my story in the begining. I ended up having surgery on a slipped disk in my jaw for TMJ as a diagnosis. The pain became intolerable from there (Aug 2014 was TMJ surgery). I basically diagnosed myself with the help of this forum and found a doctor in my area that is a Neurosurgeon familiar with TN, ATN, and GN. I have GN as well. I tried all of the meds they would give me, without any luck. I had MVD (microvascular decompression) surgery this past Mon 10/27/2014 and left the hospital yesterday. I had a vein wrapped around the 5th cranial nerve, one laying against the 7th cranial, and I think they found something going on with the 9th cranial nerve. I am currently on 17 different meds, so it is difficult to tell my success rate, but I don’t have the stabbing pain any longer, just other pains. I also can no longer hear out of my left ear. The doctors have all told me the nerves are swollen and the inflamation is what is causing the hearing loss and that it should go away in the next 6 months. I also have some minor facial drooping that I think may have improved over the past 4 days. I spent 3 nights in the hospital trying to get the pain under control. I’m happy to be home and I have high hopes of a full recovery. I think I would have done the surgery any way, if I knew ahead of time I would have loss of hearing, because the pain was that intolerable.
You need to find a doctor that has done MVD surgeries, because if the meds do not work, that is most likely your next step. There is a group for MVD on this site that I found very helpful. They screwed me into a halo for the operation. I have 8 holes in my head that they removed staples from before I I left the hospital (2 you can see on my forehead, the rest is on the back of my head). I would have never known about that without this site. I have about a 4" incision on near my left ear with staples that will come out in 7-10 days. I’m in pain, but nothing like it was. I’m sure the 17 different meds are helping too. If I hadn’t stumbled upon this site and asked people what they have been through, I don’t know where I would be today…the pain was something I could not live with. I wish you the best of luck! There are so many helpful people here and you are not alone.
Sorry for typos…I mentioned I’m medicated, but trying my best.
Danielle
freeSpiritDanielle said:
My "story" started out with dull pain deep in my ear and then turned into the worst stabbing pain imaginable! Please read my story in the begining. I ended up having surgery on a slipped disk in my jaw for TMJ as a diagnosis. The pain became intolerable from there (Aug 2014 was TMJ surgery). I basically diagnosed myself with the help of this forum and found a doctor in my area that is a Neurosurgeon familiar with TN, ATN, and GN. I have GN as well. I tried all of the meds they would give me, without any luck. I had MVD (microvascular decompression) surgery this past Mon 10/27/2014 and left the hospital yesterday. I had a vein wrapped around the 5th cranial nerve, one laying against the 7th cranial, and I think they found something going on with the 9th cranial nerve. I am currently on 17 different meds, so it is difficult to tell my success rate, but I don't have the stabbing pain any longer, just other pains. I also can no longer hear out of my left ear. The doctors have all told me the nerves are swollen and the inflamation is what is causing the hearing loss and that it should go away in the next 6 months. I also have some minor facial drooping that I think may have improved over the past 4 days. I spent 3 nights in the hospital trying to get the pain under control. I'm happy to be home and I have high hopes of a full recovery. I think I would have done the surgery any way, if I knew ahead of time I would have loss of hearing, because the pain was that intolerable.
You need to find a doctor that has done MVD surgeries, because if the meds do not work, that is most likely your next step. There is a group for MVD on this site that I found very helpful. They screwed me into a halo for the operation. I have 8 holes in my head that they removed staples from before I I left the hospital (2 you can see on my forehead, the rest is on the back of my head). I would have never known about that without this site. I have about a 4" incision on near my left ear with staples that will come out in 7-10 days. I'm in pain, but nothing like it was. I'm sure the 17 different meds are helping too. If I hadn't stumbled upon this site and asked people what they have been through, I don't know where I would be today...the pain was something I could not live with. I wish you the best of luck! There are so many helpful people here and you are not alone.
Sorry for typos....I mentioned I'm medicated, but trying my best.
Danielle
Here are some pics of my battle wounds…
Here are some pics of my incision.
142-image.jpg (112 KB)
This is an amazing site. I had that gruesome ear pain just before the TN came along full force (left side) about 5 years ago. I went to a couple of Dr's who said there was nothing wrong with my ears. I bought over the counter ear drops and that helped a bit. Once the TN came along it sort of took over and the ear pain went away.
I was in an automobile accident (I was a passenger) Aug.29 2014 and have had many other problems from the whiplash. About a month or so ago I started to get that piercing pain in my right ear and had TN/TMJ symptoms. I was/am pretty freaked out about it! A Dentist said my jaw is deviating to the right and I'm seeing a TMJ specialist Jan.5 2015. My Dr. has set me up for an MRI and a referral back to my Neurologist. The waiting game is so hard! I'm holding off from going back onto Gabapentin because I am one of those who can't tolerate it well. I couldn't take anymore than 600mg a day and once I was off for a while I realized how much depression it was causing me. For the first time in 5 years last summer I was off of all my meds, Gabapentin, Tylenol 3, and Flexeril. I was so happy and had more energy etc. Then this happened and I'm back on Tylenol 3 and Flexeril. The first month or so I was taking Tylenol 4. I now have PTSD and am seeing someone and I'm just finishing Physio after the visits were extended. Now I have all these appointments and will have to deal with the Insurance Co. But my BIGGEST fear is TN or TMJ on my right side. It feels more like TN but we'll see. The upside to this is that I had a window in the summer of only having to take extra strength Tylenol and my body was okay and not too much pain and I felt better. Even though I'm pretty upset that it had to happen, I can look back and be reminded of the hope of where I had gotten too and knowing that I can get there again!
I wish the best for you all in this painful journey! :)
Cheryl said:
This is an amazing site. I had that gruesome ear pain just before the TN came along full force (left side) about 5 years ago. I went to a couple of Dr's who said there was nothing wrong with my ears. I bought over the counter ear drops and that helped a bit. Once the TN came along it sort of took over and the ear pain went away.
I was in an automobile accident (I was a passenger) Aug.29 2014 and have had many other problems from the whiplash. About a month or so ago I started to get that piercing pain in my right ear and had TN/TMJ symptoms. I was/am pretty freaked out about it! A Dentist said my jaw is deviating to the right and I'm seeing a TMJ specialist Jan.5 2015. My Dr. has set me up for an MRI and a referral back to my Neurologist. The waiting game is so hard! I'm holding off from going back onto Gabapentin because I am one of those who can't tolerate it well. I couldn't take anymore than 600mg a day and once I was off for a while I realized how much depression it was causing me. For the first time in 5 years last summer I was off of all my meds, Gabapentin, Tylenol 3, and Flexeril. I was so happy and had more energy etc. Then this happened and I'm back on Tylenol 3 and Flexeril. The first month or so I was taking Tylenol 4. I now have PTSD and am seeing someone and I'm just finishing Physio after the visits were extended. Now I have all these appointments and will have to deal with the Insurance Co. But my BIGGEST fear is TN or TMJ on my right side. It feels more like TN but we'll see. The upside to this is that I had a window in the summer of only having to take extra strength Tylenol and my body was okay and not too much pain and I felt better. Even though I'm pretty upset that it had to happen, I can look back and be reminded of the hope of where I had gotten too and knowing that I can get there again!
I wish the best for you all in this painful journey! :)
UPDATE: I am 6 weeks post-op from MVD surgery. I was off of all my meds, except steroids to hopefully help my hearing loss. I still can not hear out of my left ear. I also had Bell's Palsy after surgery. My face was completely paralyzed on my left side. The steroids helped clear that up pretty quickly.
I am off balance due to the hearing loss. I had a super stressful day at work last Wed (a week ago) and fell twice. I am also back in pain. I guess the stress caused it. It's not the stabbing ear pain I had before surgery, it's the after surgery pain. I put myself back on Carbetrol and Neurotin. I can not get a doctor to help me. My NS wants my PCP to take over, my PCP keeps telling me to talk to my NS. The frustration is unbelievable. I have had to advocate for myself every step of the way and could go on an on and on. I was off of all meds and I'm so disappointed to need them again.
I do have hope, because I was pain free for about a week, so I know it is possible to get there. I am trying not to freak out, because obviously stress is not good for me. My NS said I would have a 2-4 week recovery, then after surgery he told me 4-8 weeks (I had a vein tangled around the 5th cranial nerve). I think it is going to be a lot longer than 8 weeks.
I guess there really is no point to this, I'm just rambling and venting. I also want everyone to know what I have gone through in hopes something will help someone.
Thanks for listening!!
XOXOXO
Danielle