I think I suffer from PTSD ....read about it and have some symptoms, never heard of it...I live in Mexico and I don't know anybody around here with this sickness, so when I found this site immediately join...it help me a lot...PLS I have some of your symptoms ... like itching in the incision.. little shocks in my head, when it rains or its too cold my head feels like its hollow....I try not to worry about it but its very hard not to..my Dr gave me Clonapin it seems to help ...I say to myself every day is a new day try to make the most of it...my family and specially my grandchildren are my strength and want to enjoy them, I pray to God to help me deal with this and to give me strength to go on.....let's all keep in touch to talk about our aches and doubts... I think that talking about it helps...
My neurosurgeon told me the area of the scalp they cut into has the most nerves anywhere in the scalp. The itching, and shooting pain up the incision is part of the healing process.
Oh piglet2u, hope it is just a 'glitch' and you will NOT have this coming back... let us know what you find out!
piglet2u said:
I am 17 months post MVD and I have had great results. Some pain at the incision site and up until 6 weeks ago, no TN pain at all. Now, out of the blue, I am feeling the quick, sharp pains behind my left eye that I felt before. This was the fist sign of the impending hell that was to come. I have an appt. with the neurologist next week. I have been completely off meds since Dec. 2012. I am so scaredthat it is on the way back and I am defenseless once again. Praying for peace for everyone.
John, my faith is the ONLY thing that has been so strong and constant in my life ~ my family is very strong in faith as well, and when I'm unable to pray, etc, they do that much more... I am so sorry you have suffered so long and want you to know your strength helps us all!... my prayers for you too!
John said:
Cris, I had my MVD 16 years ago behind my left ear and I still have pain where the indention behind my ear is. I am not sure if it is from scar tissue but this is what I am being told. When my doctor did the MVD he cut my nerve and removed 60% of the nerve so the left side of my head and face is numb. My pain is no longer localized, now it seems to jump around from the top side of my head, face, behind my ear, jaw , and in and behind my eye, all on the left side. I have pain EVERY day from a level 3 to a 10. I have tried every med you see anyone else mention including giving myself shots of morphine to no avail. Every time I tried any opiate I would get sick to my stomach so now I am on NOTHING. The only relief is when I can sleep. I try to exercise when my pain level is low but sometimes it increases if I do to much. I will pray for your pain to subside and I wish you well. Another thing which helps me is prayer, reading my bible and just talking to my Lord . I hope this does not discourage you. God Bless, John
Thanks Wendy! .. I have a metal 'plate' the size of a quarter over the hole behind my ear toward the base of my skull. I TOTALLY hear ya about the itching... ugh ~ but better than it was 11 months ago... grateful for that :)
crashgirl said:
I had my MVD in October of 2012..I have very little to no pain at all now,but the first year was weird to say the least.
As for the incision,mine still will itch like nuts on occasion, and here's the really weird part, when its humid out, the indentation is bigger than when it is cold out. Its crazy , but other people said it happens as well. My head has a teflon screen with medical putty, not my skull piece and I think thats why its doing that. It makes sense it expands and contracts with hot or cold, but it is freaky!! It doesn't cause pain, I just notice it more.
I had the boring ear pain, tooth pain, and lightning strikes before surgery, but since surgery I occasionally get the pain in my eyeball that is nasty as hell. Something else caused the TN in me, and after over a year of going to Hopkins and other top doctors, they have all come to the conclusion that I have a disorder they have never seen before...YAY ME
(sarcascim) so whatever I have, causes some of the a-typical pain, but it is very very rare anymore.
As for physical activity, whatever is going on with me gets worse when I walk or anything, so I have no idea how I would react without that...so I can't really give a good answer, but I will say, if you had TN for quite some time before surgery and been on the meds, I could see how it would be a slow road getting back to normal.
I also have a numb spot, or should I say sensitive spot right over the top of my ear, it gives me a weird feeling so I do everything I can not to touch it, that feeling has never changed since the surgery. I think we all have different things going on and different ways of healing as well,
Yep...your now my 'sis' in all of this gal! We share a very important day (at least very close mine is 4/12/13) and your input is important to me... I have a plate over my piece of skull that was removed, and I KNOW it takes a year for total healing from this surgery ... just needed to know if I was a weird one or if this was something that others have experienced as well. Thanks so much Mimi! Talk with ya soon ~
Mimi said:
Cris, although you and I have already spoken, I thought I'd add my post MVD "stuff" to this post as well...it's turning into an informative post for post-MVD comparison.
My MVD was April 9th, 2013, almost a year ago...
* I occasionally get itching at the incision site but no swelling. ( an acrylic piece was used to replace what they removed)
*pre-MVD my pain had changed and moved around. *post-MVD I experienced "new" area, upper branch, above my eye as well as behind my ear electric shock down into my neck. I had no TN pain after surgery, was able to wean off 2/3 meds, experienced 4 months tn pain free before it returned and increased.
* as my TN worsened pre-MVD I could no longer do any form of cardio without it increasing TN pain * post-MVD I experienced pressure type pain above incision in back of my head while driving or walking ( cardio) . My neuro attributed this to muscle tightness as things were healing inside, he suggested massage therapy and this did help. I can only do minimal cardio ( 2.5 minutes on stationary bike, or slow walk) post MVD without it increasing my pain.
As someone else mentioned, Neurosurgeon did surgery, after care was left to my neurologist, yet my Neurosurgeon or his assistants have responded to my calls or emails. ( had surgery in different province ) They do want me to keep in touch and inform them of how I'm doing.
My current status at 11 months post-MVD; Pain is not under control, on 3 meds, trying to find balance of minimal pain and least amount of "drugged-up-ness" not working, not driving, not functioning much... Incredibly, this is still better than pre-MVD where it was worsening and pain was 24/7. I do get hours with no to minimal pain now. Good luck at your appt. Cris! (( hugs )) Mimi
Delia - Definitely dialogue is important... feeling alone is not gonna happen here with friends that understand! :)
Saraiderin - Yep...I was a nurse for many years and totally get what your NS says, when I mentioned some of my symptoms to my NS, it felt like I was being dismissed as it was the first time he had heard some things I was asking him and his nurse... so I just stopped telling him these kinds of things. You all's experiences say more since our NS's have never been through is personally and simply tell us the medical side of it. :) Thanks!
saraiderin said:
Delia Osuna-Orozco said:
I think I suffer from PTSD ....read about it and have some symptoms, never heard of it...I live in Mexico and I don't know anybody around here with this sickness, so when I found this site immediately join...it help me a lot...PLS I have some of your symptoms ... like itching in the incision.. little shocks in my head, when it rains or its too cold my head feels like its hollow....I try not to worry about it but its very hard not to..my Dr gave me Clonapin it seems to help ...I say to myself every day is a new day try to make the most of it...my family and specially my grandchildren are my strength and want to enjoy them, I pray to God to help me deal with this and to give me strength to go on.....let's all keep in touch to talk about our aches and doubts... I think that talking about it helps...
My neurosurgeon told me the area of the scalp they cut into has the most nerves anywhere in the scalp. The itching, and shooting pain up the incision is part of the healing process.
Dude!!! You hit the nail on the head!! Storms - UGH!!! When we have a storm or weather come in from the north (like we have ALL WINTER long) I can tell ya just when it hits our area and when it is passed; very painful. ... and I am sorry if it seems like I'm complaining; I truly am blessed to be in better shape now than I was 2 years ago (11 months today post-op) ... I appreciate your input! Thank you! :)
PLS said:
I think you are asking for other peoples symptom post-opt. I tried to list a few of the symptom I had post-opt.
It will be 11 years since my surgery this May 1st. My surgeon pinched off my trigeminal nerve because I had a blood vessel going right through my nerve instead of pressing on it like most people. I'm not sure if my experience will directly relate to you. Every once in a while I get some stapping pain in my forehead (before surgery it was along my lower jaw). This has decreased a lot over the year but it still happens. The last episode is what prompted me to signup for this forum. I was absolutely convinced my TN was coming back. Totally baseless worry of course. Though to be honest, it probably is just because my nerve is so damaged rather than TN coming back.
What may relate to you is the pain I almost always have mild pain along the lower part of my incision line. It isn't really that bad but I do still have some very minor swelling on and off after all these years. It doesn't happen very often anymore but when it does, I almost always get a migraine within a few hours of the swelling occuring. The worst is when a storm is coming through. Then I get this stapping pain in my skull but since that only happens with a bad storm, again it isn't too bad. Everything is much better than the TN pain (even the migraines). I think it took me about 1.5 years to get to a level point were things didn't change anymore. Even though my surgery was probably different than yours, I think you have a good chance of things getting better. Don't give up hope.
You are probably in better care post-surgery under someone else anyway. If your surgeon is anything like mine, they are great for the surgery (which you want) but totally suck on follow-up care. My surgeon completely dismissed my claims of decreased hearing from my right ear and the migraines I started having post-opt (I never had them before). He said he wasn't near anything that could affect my hearing. It doesn't matter that I have decreased hearing only since surgery. The surgeon never told me what to do with my eye since I no longer had any feeling in it. I ended up with an ulcer on my eye so bad that the doctor was worried I would lose my vision in that eye. Am I correct in assuming that you still have feeling in your eye that is on the surgery side? I had already lost my blink reflex before surgery. If that is the case with you, even if you do have feeling you may have problems you have to deal with. For me, I have found the best thing to use is GenTeal brand lubricant eye gel for severe dry eyes.
I hope that the pains you are having are better than what you had pre-surgery and the that the post-opt ones go away. Good luck with your appointment next week!
Thank you very much for your input ~ you are one of my hero's (17 years!!) in remembering life goes on... day by day... and I just don't think I would ever want another MVD... couldn't wait til I had it and it was worth it ~ was the ABSOLUTE right decision. Thanks again Maur!
Maur said:
1) Incision swelling - I've had two MVDs and never had swelling; both times the incision site caves in a little bit over time, so there is a little valley along the stitches, (second MVD march last year) although the neck gland (node) does swell periodically, and sometimes gets a little sore.
2) Pain moving around. Since I first got TN about 16 or 17 years ago, I found that the pain alters its location and its character and intensity continuously. Sometimes a year of a certain kind of pain, then it seems to shift to focus on another area and the pain itself changes.
3) Exercise. I was never able to do any exercise with TN, except for walking when the pain allowed. During complete remissions, able to do any exercises.
4) Neurologist/neurosurgeon. They are not the same. The surgeons do the surgery and afterwards check that you're basically still alive, and then they're done. The neurologist doles out meds and advice and recommendations. I doubt anyone would ever be able to get either one to admit to any possible mistakes! If this is your first MVD, I suspect your surgeon did not manage to get all your compressions, or he did some damage during the operation, or both. Just my opinion.
NOTE: If a second MVD is ever offered to you, please do lots of research, because so far it seems like they're far more risky, so take care!
Hey gal! Good to hear from you! Dr Casey is the one who recommended Dr Tew (they are colleagues and know each other very well) ~ I know Dr Tew was the right one to do my surgery (I truly don't think I could have made it all the way to Dr Casey...would have had to fly and the pressure would have done me in (flown in the past few years and it was horrible)... but I do wish I had him now for the after care... hope all is well with you! I'm not trying to be a whiny baby, but know this is the BEST place to get feedback from the only peeps on EARTH that truly understand ~ Talk with ya soon! :)
Kc Dancer Kc said:
If you are not better, in three months, consider driving a little further to dr. Casey?
But of course he personally emails consultations stuff too.
He doessss aftercare more than most. He is not a god complex surgeon like most!
Cathy ~ oh hon, we have to lean on each other ... don't ever tell any of us you are sorry for saying how you feel! Do you have a neuro you go to for help? That is where I'm at now, I have my GP that diagnosed me (he's been my doc for over 30 years and I trust him more than ANYONE...wish he was a specialist too ~ he's brilliant!) and he is willing to help me in anyway, but I know he will want to refer me on to a neuro... ugh.
Hoping your pain is less and your day is a good one ~ Cris
peaceandquiet said:
Hi Cris:
I had an MVD in 2009. Pain free for 3mths and off the meds then the pain came back worse then before. I had tightness on the side of my head, a pinching feeling near my left ear. I went to my NS twice he dismissed it. No one has told me what this is so I have this in addition to the facial pain. Sometimes I feel so sad and defeated and then I say I have to go on. I have ATN and what else can I do for this monster that has consumed my life? Sorry to go on like this, hope your pain is not like mine and you get some relief.
Thank you all so much for your feedback! ...not feeling like I'm just crazy for feeling these things... God bless you all and I'm still interested in any further comments / personal accounts / tips! ((Pain free one minute at a time!)) ~Cris
I'm new to this forum and I have never met anyone with TN. I've never been able to talk to anyone that understood what I went through before. It has been almost 11 years. You would think I could calmly talk about this but I'm crying just reading your response Maur let alone typing my response. My TN started September 2002 a couple of weeks after I had my son. By April of 2003, I was in so much pain it was either have the surgery or die. Those where my only options. I literally could not live with the pain any more. Almost anything is worth it for the pain to be low enough that I get to live to see my son grow up. The worst thing I have from the surgery is migraines (I didn't have them before my surgery). But if a migraine gets really bad, I can go to the ER and they can stop them. That wasn't the case with TN. I was pumped full of morphine but it didn't touch the pain. Life isn't always a bed roses now but at the end of the day, I get to see my son become a snarly pre-teen (okay, he is already there no become about it). You wouldn't think I would enjoy that but I almost missed all of it. It is the best thing in the world to watch my son grow up.
Maur said:
Hi PLS, I'm really glad you mentioned the PTSD thing, that's EXACTLY how I felt after 7 years of agony and then suddenly pain free after my first MVD. It's worth mentioning because I was totally unprepared for it, and it might help others. I found that learning to cope with life after TN was a slow process and you go through all sorts of stages, from pure gratitude, to doubts that you ever had TN in the first place, to fear of doing anything in case you set it off again, to amazement that you survived it, to anger and grief at the pain you suffered and the time you lost, the whole gamut of PTSD, and your feelings do tend to see-saw a lot, and few people seem to talk about that.
I also think it's great that you've highlighted that while you still have pain post surgery, for you it's so much more bearable than pre-surgery. Some people unfortunately do not emerge from surgery completely pain-free, and whilst we tend to hear almost nothing from the pain-free ones who tend to get on with their lives quickly, we hear more from those still in pain, and I think it's important that you have put your pain in perspective. It's an important beacon of hope for others contemplating surgery, even though some might not be so lucky. Thanks for sharing!
PLS said:
I was worried I was being too depressing. Glad it was helpful rather than depressing :-)
Even when I'm having a really bad migraine, it isn't a drop in the bucket to how much pain I was in before. Before I had my surgery, I hadn't been able to brush my teeth in two months. The last time I tried, I ended up in the hospital for a week just trying to get the pain under control. Just writing about this is making me cry. My friends keep telling me I have PTSD from TN. I hope you get used to how things are with you now. It isn't that I don't have pain but it is so much less that I've gotten used to it and just ignore it. I could have never done that before the surgery.
Delia Osuna-Orozco said:
PLS: its so comforting to read your words...and to know there is hope..11 years amazing, I sometimes feel so down and depressed, always thinking if this awful thing is coming back....but hearing from people like you gives me hope...thank you!! Hod bless you.....
You are very welcome Cris :-) You know, years ago I imagined arriving at the 'pearly gates' and being asked this question: So, what else, besides survive TN, did you do with your life? I had inadvertently made surviving TN the focus of my life, barely noticing through the pain and brain fog all the wonderful opportunities that had slipped by. And then we all think that we're really doing our best with what we have, right? But then I wished to God someone could have just made me raise my head and make me notice what I was NOT doing. And I realised that whether I was hiding out at home just nursing the pain, or whether I was outside appreciating the garden or with friends, or wherever I might be, the pain was with me, the pain itself was a passenger. So I decided to try harder to live a 'normal' life and just be more conscious that THIS is my time, pain or no pain. Since then, pain and I have travelled a bit, we have moved house a few times, we have done a lot of fun things, and I have been blessed with pain-free periods too, which I know some have not been so lucky to have. The years go by and I find I have fewer regrets because I've not missed nearly as many opportunities as before, and this is a message that I just try to share with other TN'ers. That said, it is really, really important to be active in managing your own TN, own it, take charge of it, make decisions for yourself about your treatment, because nobody knows YOU and your pain better than you, and I can honestly say that researching and reading, especially on this site, can provide you with guidance to inform your decisions better than anything else because we're all travelling the same road. I still live with the fear, same as everyone, but now I'm more conscious of the EFFECTS of the fear, which is to make us just want to stay home and forget we actually do have a life, and that's what I try to remember. All the best, and God bless all. cris said:
Thank you very much for your input ~ you are one of my hero's (17 years!!) in remembering life goes on... day by day... and I just don't think I would ever want another MVD... couldn't wait til I had it and it was worth it ~ was the ABSOLUTE right decision. Thanks again Maur!
Maur said:
1) Incision swelling - I've had two MVDs and never had swelling; both times the incision site caves in a little bit over time, so there is a little valley along the stitches, (second MVD march last year) although the neck gland (node) does swell periodically, and sometimes gets a little sore.
2) Pain moving around. Since I first got TN about 16 or 17 years ago, I found that the pain alters its location and its character and intensity continuously. Sometimes a year of a certain kind of pain, then it seems to shift to focus on another area and the pain itself changes.
3) Exercise. I was never able to do any exercise with TN, except for walking when the pain allowed. During complete remissions, able to do any exercises.
4) Neurologist/neurosurgeon. They are not the same. The surgeons do the surgery and afterwards check that you're basically still alive, and then they're done. The neurologist doles out meds and advice and recommendations. I doubt anyone would ever be able to get either one to admit to any possible mistakes! If this is your first MVD, I suspect your surgeon did not manage to get all your compressions, or he did some damage during the operation, or both. Just my opinion.
NOTE: If a second MVD is ever offered to you, please do lots of research, because so far it seems like they're far more risky, so take care!
Sounds almost exactly like my recovery. I was also dismissed by my surgeons afterwards. I am back to exactly back to where I was med wise as prior to surgery. I am seeing a new neurologist as mine has closed his outpatient practise. He has diagnosised me with occipital neuralgia as well as trigeminal neuralgia. ON is new since surgery. In hindsight I wish I had not had the surgery. No gain and more complications from surgery.
PLS, You are NOT alone, believe me! The thing with this PTSD (I never asked for or took any treatment for it) is that it takes TIME to feel better, and you might find eventually you feel better for a long time and then it might hit you again for a while, but gradually less and less. I found that no one in my life really understood it, so it can be really difficult. They're think you're all better and good to go, but your brain is still remembering. Time is key, I think.
Now, the migraines you mention, do you normally get them on waking up in the mornings, or do they set in later in the day? Can you say more precisely where they're located and what they feel like? Also, if properly diagnosed, what meds do you take for them? PLS said:
I'm new to this forum and I have never met anyone with TN. I've never been able to talk to anyone that understood what I went through before. It has been almost 11 years. You would think I could calmly talk about this but I'm crying just reading your response Maur let alone typing my response. My TN started September 2002 a couple of weeks after I had my son. By April of 2003, I was in so much pain it was either have the surgery or die. Those where my only options. I literally could not live with the pain any more. Almost anything is worth it for the pain to be low enough that I get to live to see my son grow up. The worst thing I have from the surgery is migraines (I didn't have them before my surgery). But if a migraine gets really bad, I can go to the ER and they can stop them. That wasn't the case with TN. I was pumped full of morphine but it didn't touch the pain. Life isn't always a bed roses now but at the end of the day, I get to see my son become a snarly pre-teen (okay, he is already there no become about it). You wouldn't think I would enjoy that but I almost missed all of it. It is the best thing in the world to watch my son grow up.
Maur said:
Hi PLS, I'm really glad you mentioned the PTSD thing, that's EXACTLY how I felt after 7 years of agony and then suddenly pain free after my first MVD. It's worth mentioning because I was totally unprepared for it, and it might help others. I found that learning to cope with life after TN was a slow process and you go through all sorts of stages, from pure gratitude, to doubts that you ever had TN in the first place, to fear of doing anything in case you set it off again, to amazement that you survived it, to anger and grief at the pain you suffered and the time you lost, the whole gamut of PTSD, and your feelings do tend to see-saw a lot, and few people seem to talk about that.
I also think it's great that you've highlighted that while you still have pain post surgery, for you it's so much more bearable than pre-surgery. Some people unfortunately do not emerge from surgery completely pain-free, and whilst we tend to hear almost nothing from the pain-free ones who tend to get on with their lives quickly, we hear more from those still in pain, and I think it's important that you have put your pain in perspective. It's an important beacon of hope for others contemplating surgery, even though some might not be so lucky. Thanks for sharing!
PLS said:
I was worried I was being too depressing. Glad it was helpful rather than depressing :-)
Even when I'm having a really bad migraine, it isn't a drop in the bucket to how much pain I was in before. Before I had my surgery, I hadn't been able to brush my teeth in two months. The last time I tried, I ended up in the hospital for a week just trying to get the pain under control. Just writing about this is making me cry. My friends keep telling me I have PTSD from TN. I hope you get used to how things are with you now. It isn't that I don't have pain but it is so much less that I've gotten used to it and just ignore it. I could have never done that before the surgery.
Delia Osuna-Orozco said:
PLS: its so comforting to read your words...and to know there is hope..11 years amazing, I sometimes feel so down and depressed, always thinking if this awful thing is coming back....but hearing from people like you gives me hope...thank you!! Hod bless you.....
Patty, I'm really sorry you've had such a bad outcome. How long after your surgery did the ON start?
Patty said:
Sounds almost exactly like my recovery. I was also dismissed by my surgeons afterwards. I am back to exactly back to where I was med wise as prior to surgery. I am seeing a new neurologist as mine has closed his outpatient practise. He has diagnosised me with occipital neuralgia as well as trigeminal neuralgia. ON is new since surgery. In hindsight I wish I had not had the surgery. No gain and more complications from surgery.
Maur…what you said ~ I can’t tell you enough how that was so what I needed to hear. I’ve been so extremely fearful of WHAT I do and WHEN I do it and NOT putting myself out there… Thank you so much! Wow, I needed to read / hear this. I do want my Lord to say that I didn’t forget to live and live for Him. We all need this ~
Maur said:
You are very welcome Cris You know, years ago I imagined arriving at the ‘pearly gates’ and being asked this question: So, what else, besides survive TN, did you do with your life? I had inadvertently made surviving TN the focus of my life, barely noticing through the pain and brain fog all the wonderful opportunities that had slipped by. And then we all think that we’re really doing our best with what we have, right? But then I wished to God someone could have just made me raise my head and make me notice what I was NOT doing. And I realised that whether I was hiding out at home just nursing the pain, or whether I was outside appreciating the garden or with friends, or wherever I might be, the pain was with me, the pain itself was a passenger. So I decided to try harder to live a ‘normal’ life and just be more conscious that THIS is my time, pain or no pain. Since then, pain and I have travelled a bit, we have moved house a few times, we have done a lot of fun things, and I have been blessed with pain-free periods too, which I know some have not been so lucky to have. The years go by and I find I have fewer regrets because I’ve not missed nearly as many opportunities as before, and this is a message that I just try to share with other TN’ers. That said, it is really, really important to be active in managing your own TN, own it, take charge of it, make decisions for yourself about your treatment, because nobody knows YOU and your pain better than you, and I can honestly say that researching and reading, especially on this site, can provide you with guidance to inform your decisions better than anything else because we’re all travelling the same road. I still live with the fear, same as everyone, but now I’m more conscious of the EFFECTS of the fear, which is to make us just want to stay home and forget we actually do have a life, and that’s what I try to remember. All the best, and God bless all. cris said:
Thank you very much for your input ~ you are one of my hero’s (17 years!!) in remembering life goes on… day by day… and I just don’t think I would ever want another MVD… couldn’t wait til I had it and it was worth it ~ was the ABSOLUTE right decision. Thanks again Maur!
Maur said:
1) Incision swelling - I’ve had two MVDs and never had swelling; both times the incision site caves in a little bit over time, so there is a little valley along the stitches, (second MVD march last year) although the neck gland (node) does swell periodically, and sometimes gets a little sore.
2) Pain moving around. Since I first got TN about 16 or 17 years ago, I found that the pain alters its location and its character and intensity continuously. Sometimes a year of a certain kind of pain, then it seems to shift to focus on another area and the pain itself changes.
3) Exercise. I was never able to do any exercise with TN, except for walking when the pain allowed. During complete remissions, able to do any exercises.
4) Neurologist/neurosurgeon. They are not the same. The surgeons do the surgery and afterwards check that you’re basically still alive, and then they’re done. The neurologist doles out meds and advice and recommendations. I doubt anyone would ever be able to get either one to admit to any possible mistakes! If this is your first MVD, I suspect your surgeon did not manage to get all your compressions, or he did some damage during the operation, or both. Just my opinion.
NOTE: If a second MVD is ever offered to you, please do lots of research, because so far it seems like they’re far more risky, so take care!
I thought it was a sore neck from surgery position but since it has continued for almost six months my neuro decided to do some physical exams. He diagnosised the ON.
I got ON from surgery, but it passed after 7 months. I am sorry you had such a bad outcome from your MVD. I wish there was someway we could look into a crystal ball, and learn for certain what would happen.
Patty said:
Sounds almost exactly like my recovery. I was also dismissed by my surgeons afterwards. I am back to exactly back to where I was med wise as prior to surgery. I am seeing a new neurologist as mine has closed his outpatient practise. He has diagnosised me with occipital neuralgia as well as trigeminal neuralgia. ON is new since surgery. In hindsight I wish I had not had the surgery. No gain and more complications from surgery.
Hi Maur, I've tried to talk to someone on what I went through but they just didn't understand. I just have to get over it on my own I guess. Finding this forum as helped though. As for my migraines, there isn't anything consistent about them except they always start with pain in the back of my neck by my incision. I don't think I've ever woken up with one unless I had one when I went to sleep but they can start in the morning. I've gone to the pain clinic at the local University Hospital. They took me off some medication and started me on a preventative (propranolol). I have a lot less of them now and when I do get them, they aren't as bad for the most part. I can still get really bad ones occasionally but that is more like 3-4 a year rather than 3-4 a month like I used to get. Maur said:
PLS, You are NOT alone, believe me! The thing with this PTSD (I never asked for or took any treatment for it) is that it takes TIME to feel better, and you might find eventually you feel better for a long time and then it might hit you again for a while, but gradually less and less. I found that no one in my life really understood it, so it can be really difficult. They're think you're all better and good to go, but your brain is still remembering. Time is key, I think.
Now, the migraines you mention, do you normally get them on waking up in the mornings, or do they set in later in the day? Can you say more precisely where they're located and what they feel like? Also, if properly diagnosed, what meds do you take for them? PLS said:
I'm new to this forum and I have never met anyone with TN. I've never been able to talk to anyone that understood what I went through before. It has been almost 11 years. You would think I could calmly talk about this but I'm crying just reading your response Maur let alone typing my response. My TN started September 2002 a couple of weeks after I had my son. By April of 2003, I was in so much pain it was either have the surgery or die. Those where my only options. I literally could not live with the pain any more. Almost anything is worth it for the pain to be low enough that I get to live to see my son grow up. The worst thing I have from the surgery is migraines (I didn't have them before my surgery). But if a migraine gets really bad, I can go to the ER and they can stop them. That wasn't the case with TN. I was pumped full of morphine but it didn't touch the pain. Life isn't always a bed roses now but at the end of the day, I get to see my son become a snarly pre-teen (okay, he is already there no become about it). You wouldn't think I would enjoy that but I almost missed all of it. It is the best thing in the world to watch my son grow up.
Maur said:
Hi PLS, I'm really glad you mentioned the PTSD thing, that's EXACTLY how I felt after 7 years of agony and then suddenly pain free after my first MVD. It's worth mentioning because I was totally unprepared for it, and it might help others. I found that learning to cope with life after TN was a slow process and you go through all sorts of stages, from pure gratitude, to doubts that you ever had TN in the first place, to fear of doing anything in case you set it off again, to amazement that you survived it, to anger and grief at the pain you suffered and the time you lost, the whole gamut of PTSD, and your feelings do tend to see-saw a lot, and few people seem to talk about that.
I also think it's great that you've highlighted that while you still have pain post surgery, for you it's so much more bearable than pre-surgery. Some people unfortunately do not emerge from surgery completely pain-free, and whilst we tend to hear almost nothing from the pain-free ones who tend to get on with their lives quickly, we hear more from those still in pain, and I think it's important that you have put your pain in perspective. It's an important beacon of hope for others contemplating surgery, even though some might not be so lucky. Thanks for sharing!
PLS said:
I was worried I was being too depressing. Glad it was helpful rather than depressing :-)
Even when I'm having a really bad migraine, it isn't a drop in the bucket to how much pain I was in before. Before I had my surgery, I hadn't been able to brush my teeth in two months. The last time I tried, I ended up in the hospital for a week just trying to get the pain under control. Just writing about this is making me cry. My friends keep telling me I have PTSD from TN. I hope you get used to how things are with you now. It isn't that I don't have pain but it is so much less that I've gotten used to it and just ignore it. I could have never done that before the surgery.
Delia Osuna-Orozco said:
PLS: its so comforting to read your words...and to know there is hope..11 years amazing, I sometimes feel so down and depressed, always thinking if this awful thing is coming back....but hearing from people like you gives me hope...thank you!! Hod bless you.....
