Richard A. "Red" Lawhern said:
Jeanette -- please get a professional physician's second opinion before you have nerves cut. The risks of that operation can be horrendous. There is a form of pain called "deafferentiation" which may set in when the nerve is totally severed. It can be described as something that happens in the central nervous system when it loses continuity with the sensory nerves at the periphery. That last straw can REALLY get to be the last straw...
Regards, Red
I had it cut in October and I know that it is the last straw, however I would do it again if need be. I understand some people doesnt understand exactly whats involved but I did and did not need a 2nd opinon when you have a surgeon as skilled as Dr.Tew. Myself along with 4 others have all sucessfully had the sensory portion of the nerve cut and two had the motor cortex and sensory cut. Once you reach a point that nothing works you will try anything to get your life back
Jeanette Cole said:
Richard A. "Red" Lawhern said:Jeanette -- please get a professional physician's second opinion before you have nerves cut. The risks of that operation can be horrendous. There is a form of pain called "deafferentiation" which may set in when the nerve is totally severed. It can be described as something that happens in the central nervous system when it loses continuity with the sensory nerves at the periphery. That last straw can REALLY get to be the last straw...
Regards, Red
Jeanette, did you or any of the others develop AD after having it done? If not, is it down to the skill of the surgeon or just bad luck if this develops?
Thanks Elstep....I appreciate that....I have AD since having the nerves cut....To think something is worse that TN2 is unreal...but let me assure you....it is....its 24/7 pain....even with the now huge amount of drugs I take...I have to take pills to compensate for what the AD pills do to you..and Im struggling with the dose....my work is suffering....my family are suffering...I hadnt even heard of AD....no one mentioned it to me....If I knew then what I know now I would never have entertained it.....Now to add to my deepest joy for some unexplainable reason I am developing TN on the other side of my face....and to make my life even more miserable my original TN is making a comeback...and when I saw the NS last week, he said ...yes that often happens...so before any of you ruin your life cutting the nerves, just stop a minute and think.....ask questions about AD....ask ask ask.....and be aware you can get AD and the original TN...ATN CAN come back...so just all be careful xx
Carol what can I say? You are such a tough cookie, a very strong lady. Hang on in there, who knows what the future can bring, I am talking about good not bad. Research is going on for the gene responsible for chronic pain, hang on and continue being the strong person you have always been. xxx
I have AD also Carol, and I understand your pain. It's 24/7 non-stop pain... the meds I take Lyrica 150mg 3/4 times a day help some but not totally. I also take Loratab 10 sometimes twice a day along with the Lyrica.... there are times I feel like a drunk because of the meds, but I would rather walk crazy than deal with the pain. The TN was bad enough that I took risk and had one surgery, but the one that caused me the most pain and the AD was the Gamma Knife... the nerve was damaged more when that was performed... I don't work anymore because of this wonderful disease... I don't function like a normal person anymore... my life has been turned unside down because of this and has been for approx 10 yrs now... The nerve is so damaged that just scratching my neck/shoulder sends those wonderful bolts of lightening thru my head... My doctor told me the other day that I should talk to medical students and see if they could guess what I have since I have every sympton that comes with this ... numb face/tongue/hurting teeth/swelling inside my mouth/ the lighenting bolts in my face/the tinkling that never stops.. you name it I have it.... but life goes on... since there is no fixing me... I just take it one day at a time and hope each day will be better than the last..
Jerri
Hi Carol, to say I am sorry for you is not the correct phrase to describe how I grieve reading your post. You have suffered so much ! Despite all this , I hope you continue stay strong. The research going on may bring some hope in the future.
Warmest regards.
To all who have AD my heart goes out to you all, its sound like an horrific condition to suffer from, thank you for warning us all of the dangers of surgery. I do pray there will be positive results from the research being conducted now in the UK. xxx
Jerrim..I hate for you to be in this pain....but at least someone other than myself understands the total horror of this disease...I too take 150mg Lyrica 3 times a day...Triliptal, Xanex, Amaltriptaline, and lexatin..I dont remember one day to another....I used to have a brain...now its just mush, and I might have to give up my business that Iv worked for 30 years....I advise on and trade the International Foreign Exchange markets...Some days I dont remember buying or selling anything..Most think Im a drunk, but Im not...I stagger a lot...my arms shake, I know for us there is no cure....10 years you have been like this..OMG that fills me with horror...and for me its only been a year and already I am wondering how much longer I can on for...We just have to hope as Elstep says that research one day may cure this monster....so that others do not have to suffer this daily horror...I hope one day we may find peace eh!! xx
jerrim said:
I have AD also Carol, and I understand your pain. It's 24/7 non-stop pain... the meds I take Lyrica 150mg 3/4 times a day help some but not totally. I also take Loratab 10 sometimes twice a day along with the Lyrica.... there are times I feel like a drunk because of the meds, but I would rather walk crazy than deal with the pain. The TN was bad enough that I took risk and had one surgery, but the one that caused me the most pain and the AD was the Gamma Knife... the nerve was damaged more when that was performed... I don't work anymore because of this wonderful disease... I don't function like a normal person anymore... my life has been turned unside down because of this and has been for approx 10 yrs now... The nerve is so damaged that just scratching my neck/shoulder sends those wonderful bolts of lightening thru my head... My doctor told me the other day that I should talk to medical students and see if they could guess what I have since I have every sympton that comes with this ... numb face/tongue/hurting teeth/swelling inside my mouth/ the lighenting bolts in my face/the tinkling that never stops.. you name it I have it.... but life goes on... since there is no fixing me... I just take it one day at a time and hope each day will be better than the last..
Jerri
Thank you Elstep...I really hope so xx
elstep said:
To all who have AD my heart goes out to you all, its sound like an horrific condition to suffer from, thank you for warning us all of the dangers of surgery. I do pray there will be positive results from the research being conducted now in the UK. xxx
Im try Seow....but its just so hard..and seems so long ago I had this done...and its just awful.....no let up....just pain pain and more pain...but thank you for thinking of me xx
Seow W said:
Hi Carol, to say I am sorry for you is not the correct phrase to describe how I grieve reading your post. You have suffered so much ! Despite all this , I hope you continue stay strong. The research going on may bring some hope in the future.
Warmest regards.
Sadly, that is very true... as in my case... you go in thinking it will work out and no more pain... nope... I went from a level of pain about 5 to 15... I know the normal choice is 1-10 but mine is so past 10... I would never tell anyone not to try, but we should always try to stop this horrible pain... I just say make sure to do your research first... I actually had the best NS in the state of Louisiana, and he trusted the Doc who performed the Gamma Knife procedure... but things do go wrong and they did in my case, the nerve was not killed it was damaged more... as my NS put it "I think half the nerve was killed and the other half is pissed off".. My NS died last year, and with him I feel died all my chances for any future hope...I will never go thru another surgery, actually no reason to since there is no fixing AD... I try to live a normal life each day, but there is nothing normal about it... the meds help some and let's not forget the Loratab 10... which I've taken for so long now that it just takes the edge off... the pain never goes completely away... the tingling never goes away ... and the best part of all this is now my right eye is completely numb... so when I go outside I have to make sure to wear sunglasses at all time to protect my eye... should anything get in it, I would never know...
So I've had the Microvasular Decompression and the Gamma Knife procedures... both failed... but that's not to say they won't work on someone else.. God decided this for me and I live with it and so does my family.
I pray for all who have TN and AD... pray that one day they do find the procedure that will fix TN.
Jerri
Hi Carol, I wish I could give you a better advice . I can feel the pain . (Hugs)
Carol, there are days when I feel like my brain is mush also. I initially had my first surgery in 2005 because I didnāt want to live my life on meds. My doc was a great NS, the surgery just didnāt work for me . I use to tease him about being his only failure and actually I was. There were so many days I wanted to die and because Lyrica is a control substance and i took too many one month which made me run short, I went two days with no meds. If I would have has a gun I know I would have shot myself the pain was so severe. One of the reasons this is called āthe suicide diseaseā.
Living with this as long as I have I can tell you there are days when the pain is minor and days very major. Iāve adjusted to major pain with meds and tears. Tears I canāt even feel when they run down my face. Itās approx 75 to 80% numb. Migraines are also a part of my life. Not daily, but enough to matter.
As you can tell I keep going on and so will you. The pain is there, we do our best to control it with meds and the will to go on. To live normal, even if we canāt. To try and ignore the pain, the horrible pain and live.
The first year was hard for me too, and I wonāt lie and say it gets betterā¦it doesnāt ,but living with it becomes easierā¦not sure how to explain that to you when I keep telling you about my pain,but you will understand one day. With God and your family, you will make it. I too question if this was a punishment for things Iāve done, but finally realized this is just what was meant for me.
Jerrim, I just read your post and really don't know what to say to you other than your story touched my heart. Your one sentence, "With God and your family, you will make it", says a lot. I really admire your courage and faith. You offer hope to others-thank you and may God be with you always.
You will be in my prayers.
Dixie
I understand completly Jerrim...I have thought that my family would be better off without me as well..I know why they call this the suicide disease...and thats just ATN and TN...god knows how many AD sufferers are out there as well....I have the same with the eye....Im scared of being out in public in case I dribble...and cant feel it...Im numb from the middle of my head to my top lip...but its not numb..its a really painful numbness that sends bolts through my head, face and ear....As with you I know there is no hope for me...my NS down here has ruled out any other surgery.....So I have this dreaded monster with me till I die.....and the meds I take need meds to compensate for the fact you cant pee...so take pills to make you pee....as with all bodily functions, nothing works normally anymore....I dont beleive in suicide...not for religious reasons....but that my family would be devestated.....I cant do that to them..but some nights when the pain is too much, and Im on my own ( not so as to wake my husband) and I crack the morphine open, I do wonder if I just took one more dose would I kill the pain or me.....perhaps one day I will know xxx
jerrim said:
Carol, there are days when I feel like my brain is mush also. I initially had my first surgery in 2005 because I didn't want to live my life on meds. My doc was a great NS, the surgery just didn't work for me . I use to tease him about being his only failure and actually I was. There were so many days I wanted to die and because Lyrica is a control substance and i took too many one month which made me run short, I went two days with no meds. If I would have has a gun I know I would have shot myself the pain was so severe. One of the reasons this is called "the suicide disease".
Living with this as long as I have I can tell you there are days when the pain is minor and days very major. I've adjusted to major pain with meds and tears. Tears I can't even feel when they run down my face. It's approx 75 to 80% numb. Migraines are also a part of my life. Not daily, but enough to matter.
As you can tell I keep going on and so will you. The pain is there, we do our best to control it with meds and the will to go on. To live normal, even if we can't. To try and ignore the pain, the horrible pain and live.
The first year was hard for me too, and I won't lie and say it gets better..it doesn't ,but living with it becomes easier..not sure how to explain that to you when I keep telling you about my pain,but you will understand one day. With God and your family, you will make it. I too question if this was a punishment for things I've done, but finally realized this is just what was meant for me.
Whats really weird is I didn't think so many people besides myself suffered from this disease... not until I started reading up on TN and AD.. finding this site helped me to see that I'm not alone with this horrible pain..not that I'm thrilled others have it, just helps when you know others understand what you are going thru... family and friends try, but it's really hard to explain to them how you feel, what you are feeling. My mom doesn't understand if my face is numb from my forehead to my chin, how do I still feel the pain. Like Carol said, it's not a normal numb, it's a painful numb with the little needles and bolts of lightening almost 24/7... the inside of my mouth is what drives me crazy, my teeth hurt so bad at time I almost want to have them all pull out so I don't have to brush them and the palette of my mouth hurts so that eating becomes an issue at times.. and my tongue.. that is one of the weirdest and most painful, half my tongue is numb and the other half isn't.. it hurts and tingles all the time... my lips get to the point that they hurt so bad and feel dry all the time that I'm constantly sucking on them or their inside my mouth to keep moist.. talking about all the problems that come with TN/AD helps me and hopefuly helps others...
I hate cold weather on a norm, but more so now. The cold weather kills my face, so during the winter I spend most of my time inside and during the summer I keep all air vents away from me. Like my Doc said, I'm the perfect person to talk to medical students, they would have a field day trying to solve my problems...
Laugh when you can, cry when your alone and thank God that each day you are still hear even with the pain. The pain tells me I'm still alive, and that I will take over the latter...
I dont have any top teeth....all were extracted after that first extracrtion gave me TN...Iv lost so much weight over the past 6 years, but more so this past year, when I cant chew anymore...so its normally a liquid diet for me....the palette drives me crazy....keep biting my lip and only feeling it when it bleeds is another thing....the constant pins and needles but 100's of times worse, day in day out.....half your face working...half dosnt....I moved to Southern Spain to get anway from the harsh coldness of France.....yet aircon and fans are another nightmare.....God I can whinge cant I......I wish with all my heart that there was some hope for me ..Jerrim and others....maybe one day eh!!! xx
Jerrim and Carol i know there are also others on this site with AD, what a God awful condition to have to live with. The question is do you have surgery in the hope of relief but at the risk of AD? Thank you for educating us so we are able to make the choice whilst considering the risks. xxxx
Elstep, I can only say, research, research, research before deciding where to have surgery and who to perform it. I researched on this site, read about others' experiences, got as educated as I could and then made the decision that was right for me. It took me nearly a year to find where I wanted to have it done & who the surgeon would be. Risks and possible complications were thoroughly discussed with me before I agreed to surgery, but I knew that I was in the right place and was having the right surgeon do my MVD and knew in my heart that I was doing the right thing. Thanks to God, my outcome was and still is excellent.
I read about the situations that so many members are in and I pray they can get relief. So many are in my daily thoughts.
I wish you all strength.