Hello y'all!
I'm just three weeks away from getting a rhizotomy and am curious if any of you have photos of your scar after you had the surgery. I'm just interested how it will look and how much hair they actually shave. Thanks.
Jade
I will try to remember to send a picture tonight, but for now, it is not that big of a scar. Basically it was just behind ear, from near the bottom to the top, fairly close to ear. Actually the ear hides it or prevents it from being seen from the front. They did shave off the hair behind the ear. Depending on the length of your hair above it, would probably cover it unless they also cut off that hair so that it doesn't fall over the incision. Was not that bad from a male's standpoint, or at least not for me. my hair grew in pretty quick. bottom line for me, total success of the rhizotomy; no pain and no drugs now after 12 years. Hell, they could have shaven me bald and i would still have been happy!
Thanks for the info Ron! I too would have my whole head shaved if I had to in order to
be pain free. I was just a little curious 
Im so happy you’re
still pain free. Its been an awful nightmare and I cant wait
for it to be over.
hope this isn't too gross, but you asked. i hope it came through
79-IMG_0895.JPG (1.74 MB)
Yup. It came through. I never get grossed out haha. It looks how you described. Thanks for
Sharing with me Ron!
Hi Jade O, Im happy for you...can you give me some of your advice and who did you see for your neurologist? I have been to so many ENT doctor and neurologist here in the Milw area and noone seems to know what to do. All I get is medications that make me feel like a zombie and the sad part is the pain is still there and there are days it is so bad, I can't go to work...My employer is ready to fire me. What would you suggest? and how long did it take you to find a doctor to help you....just tell me where and I will be there.hope to here from you soon. Deb
Hi Ron, my name is Debbie and after reading your story and Jade o, Im looking for some answers. I have had this diagnosis or should I say a tenative diagnosis of GN. I have been to see 4 doctors and all they do is push meds. i have tried so many of them and gotten toxic sick, throw up and nothing is taking my pain away. I am to the point of no return, i don't want to get up anymore, work is giving me a hard time and I think due to missing so much work are looking to fire me....Im a single mom and need to work but since this started about 13 months ago and gotten so bad I can hardly get up. Can i ask you who you saw and would recommend. If i can't find anyone who will help then whats the point of living. This is my final reach out, as I have exhausted all avenues around the Milw area. Hope you can help...
Ron Hammond said:
I will try to remember to send a picture tonight, but for now, it is not that big of a scar. Basically it was just behind ear, from near the bottom to the top, fairly close to ear. Actually the ear hides it or prevents it from being seen from the front. They did shave off the hair behind the ear. Depending on the length of your hair above it, would probably cover it unless they also cut off that hair so that it doesn't fall over the incision. Was not that bad from a male's standpoint, or at least not for me. my hair grew in pretty quick. bottom line for me, total success of the rhizotomy; no pain and no drugs now after 12 years. Hell, they could have shaven me bald and i would still have been happy!
Sounds like hell for you. I feel for you. When you say you have seen 4 doctors, are any of then neurologists with experience with trigeminal neuralgia (TN). i say TN because it might be hard to find any with much GPN experience. it really is that rare. My local neurologist had never dealt with it until me, but he has worked with TN patients. When i started bringing up surgery, he got me with the Cleveland Clinic and a Dr. Jong Lee i think. You can look at an earlier message from me in this group and see if that is the correct name. I would think either in Milw or the Chicago area there should be neurosurgeons who do this. You are also relatively close to Mayo Clinic which also should. i would really want to have an experience basal skull surgeon (which Lee is); you will probably not find any that does a lot of GPN surgeries. If it is GPN, i would highly recommend looking into surgery, and I recommend rhizotomy if that is what the doctor also recommends. Dr. Lee says he will not do the mvd for GPN, although he uses it for TN. My symptoms had been one side only, 80-90% of pain in back of throat, rest split either in back of lower jaw like a really bad toothache or in inner ear like really bad earache. The GP nerve splits into 2 other branches that go to that area. No pain on touching anything (remember nerve is buried), but yawning, speaking, coughing, swallowing, sneezing, could set it off. Pain came and went, with anywhere from 4-8 months in between with no pain. then it would come back, i'd get on a LOT of drug, and i mean a lot, get it under control although i knew it would come back if i stopped the drugs(I could easily tell it was still there hiding), and a month or so later would be able to get out from underneath the drugs. would go for 4-8 months, and then start over. however, each episode would tend to be longer and harder to control with the drugs. last episode before surgery lasted 6-7 months, with drugs finally controlling it at a level all the doctors and associates were shocked at the levels i was on. but the only way i could get relief. Then i had the rhizotomy, and no pain and off drugs, knock on wood. anyway, good luck but make sure you have a neurologist that really understands the disorder!
Ron, I did read your post about the doctor Joung Lee, and have heard very good news about him. No it's not TJN, It is the GPN, and I just can't take this anymore....I don't have a life, feel like Im in zombie land on this medication.....I have been to three ENTs and now a neurologist who never even heard of it but had seen patients in his 35 years of practice with trigem neuralgia....I knew more about this then he did and talked about the treatment options and wanted to know if he new a good neurosurgeon who could do the surgery....he just looked at me....I don't want to be on the 4000 plus miligrams of crap before I have to have the last resort...I have to drive my car for my job, Im a nurse and if I were to loose my job then I might as well dig my grave, life is over and I do mean that...I own a home have a son I need to care for as well.....Im going to try the doctor Jena suggested in chicago...Im sending him my email......what other suggestions do you have?...Im an desperate at this point...I have lived with this now for 13 months too long.......
Ron Hammond said:
Sounds like hell for you. I feel for you. When you say you have seen 4 doctors, are any of then neurologists with experience with trigeminal neuralgia (TN). i say TN because it might be hard to find any with much GPN experience. it really is that rare. My local neurologist had never dealt with it until me, but he has worked with TN patients. When i started bringing up surgery, he got me with the Cleveland Clinic and a Dr. Jong Lee i think. You can look at an earlier message from me in this group and see if that is the correct name. I would think either in Milw or the Chicago area there should be neurosurgeons who do this. You are also relatively close to Mayo Clinic which also should. i would really want to have an experience basal skull surgeon (which Lee is); you will probably not find any that does a lot of GPN surgeries. If it is GPN, i would highly recommend looking into surgery, and I recommend rhizotomy if that is what the doctor also recommends. Dr. Lee says he will not do the mvd for GPN, although he uses it for TN. My symptoms had been one side only, 80-90% of pain in back of throat, rest split either in back of lower jaw like a really bad toothache or in inner ear like really bad earache. The GP nerve splits into 2 other branches that go to that area. No pain on touching anything (remember nerve is buried), but yawning, speaking, coughing, swallowing, sneezing, could set it off. Pain came and went, with anywhere from 4-8 months in between with no pain. then it would come back, i'd get on a LOT of drug, and i mean a lot, get it under control although i knew it would come back if i stopped the drugs(I could easily tell it was still there hiding), and a month or so later would be able to get out from underneath the drugs. would go for 4-8 months, and then start over. however, each episode would tend to be longer and harder to control with the drugs. last episode before surgery lasted 6-7 months, with drugs finally controlling it at a level all the doctors and associates were shocked at the levels i was on. but the only way i could get relief. Then i had the rhizotomy, and no pain and off drugs, knock on wood. anyway, good luck but make sure you have a neurologist that really understands the disorder!
Wow. I figured most neurologists would have at least heard of it, even though they probably have never dealt with it. I don't think most ENT or dentists would actually suggest it being GPN, even if it crossed their minds. At least my initial neurologist knew about it, although all his associates kept telling him to look for the tumor and such; just couldn't believe that it could actually be GPN. I was lucky in that he really wanted to help me even if it was something he was not that familiar with (he was the one who suggest Dr. Lee). To show you how bad it is, i went to that site for the Skull Base Institute advertised on this site, and it hardly had any mention at all of GPN (albeit a lot for TN). My main suggestion is to keep pushing to get referred to a surgeon who at least understands it (Lee being one of them; there has to be others). Might look for locations with skull base surgery as one of their specialties (Lee is head of that group at Cleveland Clinic I think). They are out there somewhere! Good Luck.
Hi Jade, I have just a few questions for you...thanks for the name of the neurologist, I will be sending him an email. How did you get past the referral?......I know that it will take a few months to see Dr. Slavin, but hopefully it will be well worth it. Did you have to have all of the tests MRIs CTs etc with you when you went to see him? I want to be prepared....did you have any specific tests from the last two doctors that confirmed your diagnosis? What medications are you on? I was started on neurontin but it made me so sick then started on Tegratol and this has turned me into a zombie....did you take any pain pills as well?.... When you emailed him what did you say? I just don't know how to start it out.....you live so close we should talk and share stories....if you want my number is 262-■■■■■■■■....I would really like to talk....it would be easier.....hope you are doing as well as can be...Im just barely getting through the day.....hope to here from you before you have your surgery.......Debbie
Hey Debbie,
I emailed him and that's how I got past the referral. I got in within a week. I brought my CT scans and MRIs with me. Dr. Slavin says there aren't any blood vessels touching my GP nerve on the left side, but he says they might be on the right. It's hard to see. I have all the symptoms of GPN and have been diagnosed with it by several doctors. Right now I'm on 900 mg of Tegretol, 50 mg of Baclofen and 50 mg of Zoloft. Neurontin worked for me for a couple of weeks and then it wore off. Tegretol worked really well for a few weeks and then wore off more or less. I know it helps me some, so I stay on it. It took my body about 6 months to finally adjust to the side effects of Tegretol. Pain pills don't work for my pain.
I'm in horrible pain as I write this. I do pilates and really don't want to go, as I'm in horrible pain, but I force myself. Give me your email, I will email you what I wrote to Dr. Slavin. I've been pretty busy, wrapping up loose ends and trying to get organized before my surgery. Maybe we can talk next Monday or Tuesday. They are my days off. I hope this helps :)
Jade
Jade,
My heart goes out to you in your pain which I remember SOO well. I had successful MVD on my GN (as well as trigeminal and vagal nerves) by Dr. Stephen Haines at University Fairview in Minneapolis, mn. one year ago. I suffered constant stabbing episodes in my throat with any swallowing or talking. It was controlled with increasing dosages of Tegretal and Trileptal over1year of increasing and constant pain but my sodium levels were dropping too low so I went to Mayo but since I had at least 2 nerves involved, they hesitated and said I might need 2 surgeries. They were honest. Truth be told, there are few doctors qualified to operate on both TN and GN. Thank God, I found Dr. Haines who trained with Dr. Janetta and has been doing these cases for years. He is head of the neurosurgery program there. I live in western wisconsin and am willing to help in any way. The frosting on the cake was that he didn’t even shave my head-just used some antiseptic gel to plaster my hair out of place!!
Sally
I think my response is for paradise too! Sally
Hay Jade, sorry for not getting back to you but there have been so much going on with myself as well as my dad had a stroke and it has been so hectic...so how did your surgery go? I have been praying for you and hope your pain is gone once and for all. My pain is everyday and some days are so bad i can't even get out of bed...the pain in the throat/ear just kill me....my email address is sugarnorthblue@yahoo.com and my cell number is 262-224-9921 I would really like to read what you wrote to Dr. Slavin so it gives me some idea what to write. I was on neurontin but it made me sick and now Im on Tegratol only up to 600mg and it still is not taking any of the pain away, and all my neurologist tells me is to keep increasing it. How the hell can one take so much and it still does nothing. Please get in contact with me and I hope your surgery goes well....Debbie
Jade O. said:
Hey Debbie,
I emailed him and that's how I got past the referral. I got in within a week. I brought my CT scans and MRIs with me. Dr. Slavin says there aren't any blood vessels touching my GP nerve on the left side, but he says they might be on the right. It's hard to see. I have all the symptoms of GPN and have been diagnosed with it by several doctors. Right now I'm on 900 mg of Tegretol, 50 mg of Baclofen and 50 mg of Zoloft. Neurontin worked for me for a couple of weeks and then it wore off. Tegretol worked really well for a few weeks and then wore off more or less. I know it helps me some, so I stay on it. It took my body about 6 months to finally adjust to the side effects of Tegretol. Pain pills don't work for my pain.
I'm in horrible pain as I write this. I do pilates and really don't want to go, as I'm in horrible pain, but I force myself. Give me your email, I will email you what I wrote to Dr. Slavin. I've been pretty busy, wrapping up loose ends and trying to get organized before my surgery. Maybe we can talk next Monday or Tuesday. They are my days off. I hope this helps :)
Jade
Sally,
After you had your suregery, what was your recovery time? A week or weeks? I know I am headed toward surgery be it GPN or Eagles Syndrome. I had my second injection on Monday and I am still in the same amount of pain as when I started. Without my pain medication, I don't know what I would do. I have tried to maintain some normalcy through all of this but I am close to my breaking point. I am worried about surgery recovery time. I have a great job and I can't be out of work for weeks. My counterpart and I rotate the schedule to cover 6 days a week. Being out for a great amount of time will be tough.
sally said:
Jade,
My heart goes out to you in your pain which I remember SOO well. I had successful MVD on my GN (as well as trigeminal and vagal nerves) by Dr. Stephen Haines at University Fairview in Minneapolis, mn. one year ago. I suffered constant stabbing episodes in my throat with any swallowing or talking. It was controlled with increasing dosages of Tegretal and Trileptal over1year of increasing and constant pain but my sodium levels were dropping too low so I went to Mayo but since I had at least 2 nerves involved, they hesitated and said I might need 2 surgeries. They were honest. Truth be told, there are few doctors qualified to operate on both TN and GN. Thank God, I found Dr. Haines who trained with Dr. Janetta and has been doing these cases for years. He is head of the neurosurgery program there. I live in western wisconsin and am willing to help in any way. The frosting on the cake was that he didn't even shave my head-just used some antiseptic gel to plaster my hair out of place!!
Sally
Denise,
Usually the hospital stay is 3-4 days. However, since I had 3 nerves decompressed, I had some difficulty swallowing and needed a feeding tube for a week so my stay was 1 week. I did not have any head, neck or incisional pain postop but did take pain meds for a few days to help me sleep, to keep relaxed, to keep B/P down. I was up walking as soon as the catheter came out but was very, very careful to move gently, no jerking, heavy lifting, bending over for a few weeks until I felt a good mend had taken place. I am still careful today! One never forgets that pain. I am so thankful for each painfree day. I hope your procedure is as successful as mine has been. I did not have any prior procedures. Sally
Thanks Sally. I'm glad you are pain free. I will be one day too.
Hi Jade, I know you must have had the surgery and i hope it went well. When you are able to write please let everyone know how it went. I have prayed for you to be pain free. Im hoping that Dr. Slavin has read my email. Thanks for the email you sent him, it helped me find the words i needed. Hope your surgery went well. Talk to you soon.
Debbie
Jade O. said:
Hey Debbie,
I emailed him and that's how I got past the referral. I got in within a week. I brought my CT scans and MRIs with me. Dr. Slavin says there aren't any blood vessels touching my GP nerve on the left side, but he says they might be on the right. It's hard to see. I have all the symptoms of GPN and have been diagnosed with it by several doctors. Right now I'm on 900 mg of Tegretol, 50 mg of Baclofen and 50 mg of Zoloft. Neurontin worked for me for a couple of weeks and then it wore off. Tegretol worked really well for a few weeks and then wore off more or less. I know it helps me some, so I stay on it. It took my body about 6 months to finally adjust to the side effects of Tegretol. Pain pills don't work for my pain.
I'm in horrible pain as I write this. I do pilates and really don't want to go, as I'm in horrible pain, but I force myself. Give me your email, I will email you what I wrote to Dr. Slavin. I've been pretty busy, wrapping up loose ends and trying to get organized before my surgery. Maybe we can talk next Monday or Tuesday. They are my days off. I hope this helps :)
Jade