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TN MVD/Retromastoid Craniectomy Post Surgery Problems
Several years ago I began experiencing facial pain on the right side only. The pain was like that of a toothache so, naturally, I went to the dentist. After numerous dental procedures (fillings, root canals, crowns, retreatments of root canals and extractions), the pain remained. The dental professionals had done all they could and because I still was complaining of pain and seeking relief, I was labeled as having 'drug-seeking behavior'. I tried to deal with the pain but as time went on I became increasingly depressed. I also had great anxiety and self-doubt, often questioning myself as to the reality of the pain. A couple more years went by until I had an severe episode of vertigo lasting 24+ hours. I sought out my PCP. He referred me to a Neurologist and i finally got a diagnosis for the right-sided facial pain...Trigeminal Neuralgia. Meds brought no improvement so I opted for surgery. In June, 2007, I had MVD/Retromastoid Craniectomy but was left with the pain plus balance issues, deafness in rt-ear, Bells Palsy, etc. Surgeons performed a "re-do" of surgery in Nov 2007 to no avail. I still have Trigeminal Neuralgia plus a barrage of other, new problems such as recurring infections, open sores on cheek, rt-side of face that won't heal, increased sensitivity to sound/vibrations/pressure changes, disruptions of speech, loss of balance...falling, along with rt-ear deafness, Bells Palsy and a greater area of pain (now includes back of head/base of skull on right-side, incisional site and side of neck) and so on...Is there anyone who knows about this kind of thing? Can something be done? Please, please, help?
Oh Tuck you are so funny. I just had to respond. You really made me smile about when I read the part where you said you may "bounce back to a more comfortable stage. I love denial." That is so true. I often find myself trying to teach others the process one has to go through when chronic pain sets in and it lasts for years or the rest of one's life. In the beginning we never expect that to happen and do not realize the grieving process. I had just started Nursing School when I knew I had to have yet another spinal fusion to redo the one I had during my general studies. I was learning too well what the stages of loss are but it was described only for those who have had to go through the loss of a loved one. I remember thinking that I myself was going through those phases as well and how you bounce back and forth between the different phases. In nursing school I was in the depression phase and bouncing back to bargaining and then back again to depression. I actually had to see a Psychiatrist about a year or two into my Nursing career. I was so depressed and could not see a way through. It felt like my life was over and I could not understand why I had to live with this pain. Oh it was rough. I am the kind of person that has a sunny personality and always looks at the bright side of things. Chronic Pain can turn your world upside down and if you are not careful you can lose who you are.
Julie don't ever let anyone make you fell less than who you are. I understand the feelings of failure. From time to time I find myself almost slipping into that frame of mind. I just have to tell myself that I am doing the best that I can with what is available to me. If that happens to be pain meds that help you have a better functionality then so be it. I believe God made the world the way it is for a reason. And that natural resources are available for a reason. Don't ever let anyone make you feel that it is all in your head. Those that have not gone through it most of the time do not understand. How could they? It is the same as being a parent. I never understood what love for a child was until I had my own almost 6 years ago. I remember hearing about little children being abducted and killed. While I thought it was really sad I never really understood the magnitude until I had my daughter. Now when I hear those kinds of reports it brings tears to my eyes because I just could never imagine the pain of losing my child in that way. I hope this analogy helps.
Just know there are others out there that really do understand and if you ever need to vent this is a great place.
And thanks Tuck for making me smile today. I love denial too.
Audrea
Julie don't ever let anyone make you fell less than who you are. I understand the feelings of failure. From time to time I find myself almost slipping into that frame of mind. I just have to tell myself that I am doing the best that I can with what is available to me. If that happens to be pain meds that help you have a better functionality then so be it. I believe God made the world the way it is for a reason. And that natural resources are available for a reason. Don't ever let anyone make you feel that it is all in your head. Those that have not gone through it most of the time do not understand. How could they? It is the same as being a parent. I never understood what love for a child was until I had my own almost 6 years ago. I remember hearing about little children being abducted and killed. While I thought it was really sad I never really understood the magnitude until I had my daughter. Now when I hear those kinds of reports it brings tears to my eyes because I just could never imagine the pain of losing my child in that way. I hope this analogy helps.
Just know there are others out there that really do understand and if you ever need to vent this is a great place.
And thanks Tuck for making me smile today. I love denial too.
Audrea
Yes, Please call me Tuck.
It sounds like you are processing successfully through the stages of grief and have reached that final stage of acceptance. Ppl with CP often grieve for their former self and the things that are lost to us. These steps are the same as initially identified by Dr. Elisabeth Kubler-Ross in the emotional suffering we endure with death and dying of ourselves or a loved one.
I cannot tell you the "peace" that often comes when you reach that last stage of acceptance. It took me years to get there. You may find yourself bouncing back to a more comfortable stage, I do. I love denial! :o) I think it kept me functioning until I found a correct diagnosis and proper pain management ....and every so often I find myself almost back there!
Hang in and feel free to respond to other posts in addition to keeping us updated. It sounds like you have much to give others.
Peace,
~Tuck
It sounds like you are processing successfully through the stages of grief and have reached that final stage of acceptance. Ppl with CP often grieve for their former self and the things that are lost to us. These steps are the same as initially identified by Dr. Elisabeth Kubler-Ross in the emotional suffering we endure with death and dying of ourselves or a loved one.
I cannot tell you the "peace" that often comes when you reach that last stage of acceptance. It took me years to get there. You may find yourself bouncing back to a more comfortable stage, I do. I love denial! :o) I think it kept me functioning until I found a correct diagnosis and proper pain management ....and every so often I find myself almost back there!
Hang in and feel free to respond to other posts in addition to keeping us updated. It sounds like you have much to give others.
Peace,
~Tuck
Hello Tuck,
May I call you Tuck? Thank you for your quick response. I'm finding out how important it is to be connected. I am really going to try to stay in communication with both you and this forum and maybe even offer encouragement to others along the way. I'm definately not there yet but I feel the day is coming. I realized it has been almost 4 years since first surgery and I have spent most the time since in a cloud. I had in my mind how much time it should take to recover, both from doctor's opinion and my own and in doing so, I have pretty much drifted through past hundreds/thousand...how many ever... days. Never did I consider complications or lack of success. Finally, after all the time I have wasted, I am able to admit that pain is probably going to be with me the rest of my life, (although I still am not thrilled about it) it is a fact. I am trying to get past feelings of guilt and inadequacy I have because I must take pain meds. I am thankful God Almighty has given man the wisdom and resources to create meds! I will keep in touch as best as I can. Thank you so much for your kindness and willingness to help not only myself, but so many, many others. You'll be in my thoughts and prayers, too. You truly are a blessing!
Take care, Julie
May I call you Tuck? Thank you for your quick response. I'm finding out how important it is to be connected. I am really going to try to stay in communication with both you and this forum and maybe even offer encouragement to others along the way. I'm definately not there yet but I feel the day is coming. I realized it has been almost 4 years since first surgery and I have spent most the time since in a cloud. I had in my mind how much time it should take to recover, both from doctor's opinion and my own and in doing so, I have pretty much drifted through past hundreds/thousand...how many ever... days. Never did I consider complications or lack of success. Finally, after all the time I have wasted, I am able to admit that pain is probably going to be with me the rest of my life, (although I still am not thrilled about it) it is a fact. I am trying to get past feelings of guilt and inadequacy I have because I must take pain meds. I am thankful God Almighty has given man the wisdom and resources to create meds! I will keep in touch as best as I can. Thank you so much for your kindness and willingness to help not only myself, but so many, many others. You'll be in my thoughts and prayers, too. You truly are a blessing!
Take care, Julie
Thank you for your kind words Julie. I am also grateful that you checked back and updated us. So many ppl do not do that and I am left wondering!
You've learned much. Our friends and loved ones simply cannot understand our journey.... because they've never been there. Some try and I am blessed to have a husband that seems to get it as well as any non Chronic Pain (CP) person can. Unfortunately most don't even try to understand our plight.
The media seems to have an ongoing campaign against opiates....which in turn comes across as against chronic pain patients and their requirements for them. I doubt I will live to see the day that these attitudes will change to any great degree. That does not stop me from trying to educate everyone and anyone that will listen. .... and you sound like you can do the same. It's up to the CP suffers to educate others and stay strong and not be crushed by those that have no understanding of chronic pain.
I am delighted to hear that you have found a great neurosurgeon closer to home. One cannot diminish the importance of a great physician, especially to chronic pain patients. It important to have hope, even for those of us who are told there is none.
I hope you will keep in touch and let us know how you are doing and how well the procedures address your CP. You'll be in my thoughts and prayers. Again thank you so much for your very humbling and kind words.
Take Care,
~Tuck
You've learned much. Our friends and loved ones simply cannot understand our journey.... because they've never been there. Some try and I am blessed to have a husband that seems to get it as well as any non Chronic Pain (CP) person can. Unfortunately most don't even try to understand our plight.
The media seems to have an ongoing campaign against opiates....which in turn comes across as against chronic pain patients and their requirements for them. I doubt I will live to see the day that these attitudes will change to any great degree. That does not stop me from trying to educate everyone and anyone that will listen. .... and you sound like you can do the same. It's up to the CP suffers to educate others and stay strong and not be crushed by those that have no understanding of chronic pain.
I am delighted to hear that you have found a great neurosurgeon closer to home. One cannot diminish the importance of a great physician, especially to chronic pain patients. It important to have hope, even for those of us who are told there is none.
I hope you will keep in touch and let us know how you are doing and how well the procedures address your CP. You'll be in my thoughts and prayers. Again thank you so much for your very humbling and kind words.
Take Care,
~Tuck
Hi Tuckamore,
I am sorry for the very long overdue response to your post. I was then and am now so grateful to you for your thoughfulness and for taking the time to reply. How are you these days? I am living with the pain still today with good days and bad days. It is hard because there is never a break from it, the pain is relentless. I do know, however, that I am blessed my condition is not terminal. So many others are suffering and my heart goes out to them all. I do feel incredibly guilty when I grumble or complain because it could be so much worse, but chronic pain is absolutely debilitating. There is not one area of life pain does not touch.
Pain medication is a touchy subject and I try to avoid talking about it as much as possible. Those who use pain meds are clumped together and often assumed to be abusing meds or that they do not really need them. I've been asked by well-meaning family members and friends if necessary for me to take certain meds that have negative reputation. It's been suggested that I am making more of the pain, they haven't been able understanding it's severity and constant presence. It is hard for anyone to really understand if they haven't experienced it for themselves and believe me, I wouldn't wish it on anyone.
I recently found a neurosurgeon a bit closer to home (only a 2 hour drive) and after my first appointment, I feel confident he will help me as much as he possibly can. He also put a name on many of my symptoms. I found knowing I have real conditions, with real names and real reasons they occur comfort in itself. Now the quest for the right avenue of treatment(s). I have several different issues requiring separate treatments/tests/procedures but am happy to be on the right track no matter how slow the journey seems to be. I will just continue to take it one day at a time, that's all any of us can do, right?
Thanking you once again and I will try to be better in the area of communication. Take care, Tuck! Sincerely, Julie
P.S. I pray for the day that, like you, I may be a blessing to someone dealing with pain. You are great!
I am sorry for the very long overdue response to your post. I was then and am now so grateful to you for your thoughfulness and for taking the time to reply. How are you these days? I am living with the pain still today with good days and bad days. It is hard because there is never a break from it, the pain is relentless. I do know, however, that I am blessed my condition is not terminal. So many others are suffering and my heart goes out to them all. I do feel incredibly guilty when I grumble or complain because it could be so much worse, but chronic pain is absolutely debilitating. There is not one area of life pain does not touch.
Pain medication is a touchy subject and I try to avoid talking about it as much as possible. Those who use pain meds are clumped together and often assumed to be abusing meds or that they do not really need them. I've been asked by well-meaning family members and friends if necessary for me to take certain meds that have negative reputation. It's been suggested that I am making more of the pain, they haven't been able understanding it's severity and constant presence. It is hard for anyone to really understand if they haven't experienced it for themselves and believe me, I wouldn't wish it on anyone.
I recently found a neurosurgeon a bit closer to home (only a 2 hour drive) and after my first appointment, I feel confident he will help me as much as he possibly can. He also put a name on many of my symptoms. I found knowing I have real conditions, with real names and real reasons they occur comfort in itself. Now the quest for the right avenue of treatment(s). I have several different issues requiring separate treatments/tests/procedures but am happy to be on the right track no matter how slow the journey seems to be. I will just continue to take it one day at a time, that's all any of us can do, right?
Thanking you once again and I will try to be better in the area of communication. Take care, Tuck! Sincerely, Julie
P.S. I pray for the day that, like you, I may be a blessing to someone dealing with pain. You are great!
Hi Julie,
It is so good to hear from you. So often someone posts and we never hear from them again. I for one am left to wonder how they are doing. Thank you for your kind words and for taking the time to update.
How are you doing now?
My best to you.
~Tuck
It is so good to hear from you. So often someone posts and we never hear from them again. I for one am left to wonder how they are doing. Thank you for your kind words and for taking the time to update.
How are you doing now?
My best to you.
~Tuck
Thank you so much for your response, I truly appreciate you taking the time to answer. Sorry, I took so long to post again, I don't get on computer as much as I should. I feel like I was being such a big baby in my post. It is so true what you said about chronic pain turning a life upside down. I never would have known this had I not been stricken myself and I will never take it lightly again. I know I am not alone, so many others suffer much worse than I. I will visit sites in future and look out for your postings, among the others. You did bless me and I do appreciate you listenening and offering your heartfelt reply. Thanks again and I look forward to hearing from you in the future. Take care, Julie
Hi Julie,
I am so sorry to hear about the pain and unsuccessful surgeries you have had to endure. My heart goes out to you.
I wish I had some great suggestions for you, I don't. I assume you have sought out the best and brightest neurologists, associated with large teaching facilities. If not please do so. Second and third opinions can also be beneficial. I would certainly search until I found better answers and/or solutions then what you have found.
If you haven't visited our Trigeminal-Neuralgia Forum, please feel free to do so. Here's the link:
http://www.medhelp.org/forums/Trigeminal-Neuralgia/show/298
You are always welcome here but hopefully the above forum will have additional suggestions.
I will look forward to hearing from you again soon. We offer you our support. Chronic pain can turn your world upside down.... but we can put it back together. I have found it beneficial to share the challenges of our journey through chronic pain with others. Ppl that understand...as our members do on the PM Forum can be priceless. I hope you'll post often and I wish you the best.
Take Care,
~Tuck
I am so sorry to hear about the pain and unsuccessful surgeries you have had to endure. My heart goes out to you.
I wish I had some great suggestions for you, I don't. I assume you have sought out the best and brightest neurologists, associated with large teaching facilities. If not please do so. Second and third opinions can also be beneficial. I would certainly search until I found better answers and/or solutions then what you have found.
If you haven't visited our Trigeminal-Neuralgia Forum, please feel free to do so. Here's the link:
http://www.medhelp.org/forums/Trigeminal-Neuralgia/show/298
You are always welcome here but hopefully the above forum will have additional suggestions.
I will look forward to hearing from you again soon. We offer you our support. Chronic pain can turn your world upside down.... but we can put it back together. I have found it beneficial to share the challenges of our journey through chronic pain with others. Ppl that understand...as our members do on the PM Forum can be priceless. I hope you'll post often and I wish you the best.
Take Care,
~Tuck
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