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Caring for someone with Trigeminal Neuralgia

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Old 02-25-2010, 08:05 AM   #11
robninja1
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Hi Burntmarhmallow, my name's Rob and I've only just found this site and just read the message you posted back in 07 about caring for someone with TN. It made me cry so much because I suffer from Anesthesia Dolorosa and this message "hits the nail on the head".
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Old 02-25-2010, 09:46 PM   #12
Burntmarshmallow
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Hi Rob I am sorry that you have A.D.
I also have it as do a few others here . You not alone and I am glad that you found Neurotalk's T.N.. forum. Do you know how you ended up with A.D. ???
My lower right trig nerve was snapped in auto accident but I know allot of others who are left with A.D. after failed surgeries . Either way it sure is one heck of a monster to co -habituate with . I hope you have been able to find some way to control or lower some of the monster pain.If there is anything any of us can help you with do not hesitate to post, ask, we are an amazing group of people and will help any way we can.
It is nice to meet and chat with you .

Sending low pain and positive energy to you and your family.
PEACE
BMW
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Old 02-27-2010, 10:35 PM   #13
calewark
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Hello, I just started reading your posts. I need to ask a favor. In short, My tn started March 2009. I had gamma knife in june which was very successful. In July I was in an auto accident and the tn came back much worse than before. Then in the fall I started getting this burning, stabbing, numb, pulling, heavy, electric shocks to my face. What I have read, this is ad. I can't find any literature that an auto accident can cause this. I will be going to trial for the accident and I was wondering if you have any information that would be helpful for me. Thank you so much.
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Old 03-01-2010, 06:34 AM   #14
Burntmarshmallow
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I wrote you but just seen this and need to stress that you make sure you have not run out of time each state has a statue of limitations on things . like for mal pratice here in fl I think it is 2 years but not sure , each thing has a different limitation time. so check that for your state and also make sure all your doctors are putting all this in your file documenting every thing.. your pain etc..
I will be in touch soon.
PEACE
BMW
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Old 03-02-2010, 08:52 AM   #15
robninja1
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My pain started after a supposedly routine operation. I was supposed to have a cyst/polyp removed from behind my left cheek. I was assulted after work in 2005 while trying to stop a man from attacking my pregnant friend. The man had just broken into her car and stolen the her stereo. We saw him get out of her and myself and a work mate called Dan stupidly ran after him. We cornered him and he said he would give back the stereo so he took us to when he had hidden it. It was in a bush near the car. Vicky, my pregnant friend who owned car, was on her phone to the police and when he noticed this he flipped. I had worked in the pub trade for 5 years and had seen people flip before but this was different. He went for Vicky and I grabbed him and threw him against a wall. He started swinging for me and I blocked a few (what I thought were punches) but 2 got through. Dan grabbed him in a head lock but suddenly went down. The man had stabbed him in the chin with a screwdriver. I went to restrain him with an arm lock but he twisted out and punched me in the face and ran off, I tried to run after him but my balance was shot after the punch so he got away.
I had my left cheek broken but what I thought were punches weren't. He had the screwdriver in his hand and he had stabbed me twice in the face. One didn't penetrate the skin much but started next to my nose and went up between my eyes and finished in the middle of my forehead. The other went in just above my left eye only just missed the eye.
I lost the feeling of touch in the left side of my face and lost a bit of vision but I just thought how lucky I was to still have my sight!!
I carried on with life and changed my career from bar management to gardening (plants don't argue back quite as much!!!) and really enjoyed my new career.
I was so lucky because firstly Vicky had a beautiful baby boy and no one was that seriously injured. My face was numb but I had no pain, it was the total opposite, it felt like I had just been to the dentist and had an injection just permantly!!
I was being seen by specialists at my local hospital and they had seen on a CT scan that a cyst had built up behind my cheek and told me that it needed to be removed.
I had just started a new job but the surgeons insisted that it was a routine operation and that they had done thousands of these before with no problems and I would be back to work in 3-5 days. So I had the operation.
I went home after the operation and felt fine, I was on cloud 9 because of the general anesthetic still in my system!!
When the drugs wore off I noticed that I had a dull aching pain and shooting pains when I bent down or stretched. I went back to work after 5 days but something wasn't right. I went to see my gp and he said that it was probably just the healing process and the pain will go away. That unfortunatly never happened.
I went back to see the surgeon and I was told that during the operation they couldn't find the cyst but he had removed some inflammed tissue???
I found out later that this was probably the ends of my nerves!! Nice one!!
I have been on many combinations of medication but the only one that took my pain away was a nasel spray containing ketamine. The only down side was that the side effects were horrific!! I couldn't remember anything, was totally spaced out, couldn't drive and basically had no quality of life so I had to stop that.

I've had a nerve block attempted but this was unsuccessful. No one wants to try and remove the nerve because they're scared that they might cause even worse pain or do damage to something else.

I'm currently still on loads of medication and I'm waiting to go and see a neurosurgeon and talk about possible deep brain stimulation. I'm really scared because surgery is partly to blame for my pain so I don't really want anymore, but on the flip side, it might help stop/reduce this awful pain??
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Old 03-02-2010, 03:20 PM   #16
Burntmarshmallow
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ouch ouch ouch I am so sorry you have been threw that! So sorry people are uncaring and down right nasty violent to others. I can not get into doctors removing things they shouldnt have...If i say what i feel I will get banned but w.t.h.

I am really curious if you are able to at least try a neuo stim a.k.a. p.e.n.s BEFORE they set you towards the deep brain stim???????
I too can not have any type of surgery and no doc or neuro wants much to do with me as any "work" they try would just make things worse. But I am Blessed and thankful for my neuro stim implant. I know of other who do have the deep brain stim and can connect you if you would like when the times comes. It is A Big surgery and I pray to any and all Gods that you have a great neuro and staff when it is done. I am gonna message you so check your box.
Have you in my prayers.
PEACE
BMW
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Old 03-11-2010, 03:57 PM   #17
robninja1
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Hi BMW, How are you keeping?
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Old 04-01-2010, 04:12 PM   #18
findingjulz
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Quote:
Originally Posted by Doodle bug7 View Post
I understand completely what you are saying. I was diagnosed with
Trigeminal neuralgia about 15 yrs. ago. The Doctor put me on a low
Dose of dilantan and Ametriptilene. It worked, so I thought that was
that. In fact it took care of it for 10 yrs. I was happy about going on
with my life and forgetting about those lightening strikes that hit my
face out of the blue. It had scared me beyond words.
Ten years went by and I continued taking my meds and go to my
job as a nursing assistant on the medical floor of a busy hospital.
During this time I met and married a wonderful man, whom I
explained why I took my medicine.We were married for about 2 yrs.
when our lives changed forever. We were shopping at the Mall in
Joplin Mo. when I felt the first twinge in my face. Oh my god this
couldn"t be. I stopped talking immediately.
I could not go to work and my husband and I slept in our recliners.
I couldn't go to our bed because the lightning bolts were hitting
regularly.I just did not know what to do. I was so scared .
The next day my husband made an appointment for me with a
neuroligist. He got us in that same day. I was admitted to the hospital
that evening. They started a morphine pump. For 9 days I was there.
To this day I have no memory of that time.
I was transfered to Kansas City to a neuroligist who could do a
surgery called a Microvascular Decompression. I was hopeful about
it but at the same time I was terrified. I was recovering in ICU when
I felt a jolt in my face. The surgery FAILED. During the next weeks
I was like a zombe. I wrote everything down as I was too scared to
speak. I would lay on one side on a air mattress in the floor. I dreaded
moving if I needed the bathroom.
Dr. Kaufman gave us another option. I could have a Balloon
Decompression. They stick a needle in your cheek to the base of the
skull and try to destroy the nerve. The first one didn't work, the
second one didn't work and the third one did not work. I was losing
weight as I couldn't eat and also dehydrated. This was the darkest
time in my life. My husband would sit by my side and say a prayer
to give us strength and guide us to a solution.
I don't know how it was decided, but we were headed to Mayo
Clinic in Rochester Minn. I had to lay down in the back seat. I rode that
way all the way there so scared to move. We went through a snow
storm in DesMoines so we had to travel slowly. It seemed like a life
time to get there.
Finally we were at the emergency room at St.Marys hospital. which
is a part of Mayo.I was quickly admitted. I had about 4 or 5 nurses
and maybe 2 doctors gathered around me. The next morning, I was in
surgery! Dr. Pollack had a plan to parcially cut the trigeminal nerve.
It also failed I was so devistated. I truely had a plan of my own by
now and it was the only way out of the hell I was going through.
I knew I could get out of the misery by taking my life. It seemed
that I almost had a peace in my self by knowing there was a way out.
After this brain surgery I was put in the pain unit. The nurse kept
reminding to breath because the medicine was slowing everything
down so much. I did not care if I breathed or not. My husband was
always at my side through everything reminding me he loved me so
much. Tears would come to my eyes as I looked at him. He knew I
loved him too. He was my rock and he didn't ever complain about
those nights when I kept him awake just so I knew he was there.
He never faltered with his love and devotion.
Three days later I was back in surgery. This was the last option
I was given. To sever the trigeminal nerve completely. I don't remember
anything about it as I was sedated. I was told that this would make
the left side of my face numb. It did. The operation finally took hold
a few days later, because the pain stopped. When they wanted me
to take a shower a couple days later and it would be my first time
up, my head was so dizzy. The room spinned around me.
I was released a couple weeks later. My strength took awhile
to come back.
The first night home I felt a burning in my face. It continued the
next few days and was turning into actual pain. We called Dr. Pollacks
office and we asked about this. They said it might continue or maybe
it wouldn"t. Not a real good answer.
This is five years later and the pain has been with me all this time.
I found out that it actually has a name. Anesthesia Delorosa. It is
a dreaded complication of a microvascular Decompression. Now I hurt
24/7 with a different kind of pain. It gets severe sometimes It is
not the lightening bolts that hit before, It is not a scary pain, like
the trigeminal neuralgia but none the less, PAIN. I take around 20
some medications every day. I lost my job that I loved so much. I
get a disability check every month. I don't drive anymore. I did get
off the narcotics I was taking. I take Neurontin, Amytriptine, Lyrica,
Hydroxizine, paroxicam, peroxitine. I developed restless leg syndrome,
so for that I take Requip. I also see a Psycolagist once a month to
deal with evrything that has happened. We do a kind of self hypnosis
relaxation tapes. I can say that I am happy for the most part. I live
each day the best that I can. My husband trys very hard to make me
smile, actually he doesn't have to try that hard. He has been by my
side every step of this journey, not behind me and not ahead of me.,
but right beside me.
I know how devastating this condition can be and I pray that somehow
everything will get better for you.
Sincerely, Patti Hall
I can't believe that Patti is telling my story exactly. I mean a few things I didn't do like try severing the nerve, but after the MVD, several months later the AD was diagnosed. Now, instead of having symptoms only in the mandibular I had ithorribly it my cheek and right eye. I have a pain pump now and it took about a year before it really began working and I still have to take some oral meds (Oxycontin and Dilaudid) for breakthrough, but I am alive. I too thought about taking my own life. But my faith is stronger. My husband of 27 years is also my greatest supporter, he drives me to all dr. appointments. I had a dentist take advantage of me and do some terrible dentistry which complicated my case terribly and I'm still having to have his work repaired, but I lost several teeth, he did unnecessary root canals and while he said he was doing veneers on my front teeth, he did one giant crown; soon, the tissue was necrotic because I could not floss; I went back to my dds of 20 years and he has been taking photos and I've been able to floss and soon, I'll have new front teeth, but this guy will see me in court. But back to the disease. I wish I had someone like you to talk to. Just once. i'm so amazed at teh similarities. We went to Tampa Bay General (we live in the Houston area); and Dr. van Loveren did the MVD after just talking with me once and his office profusely called me to set an appointment for the surgery. I only saw him twice afterwards and the first time was to remove the sutures and second time he said "well, if you didn't have it before, you definitely have it now". I was so upset to fly all the way to Tampa to hear this; and then I went back to a doctor I'd seen in Baton Rouge. Here I'd had the Stereotactic Radiosurgery at the Mary Bird Perkins Cancer Center. Dr. Waguespack was absolutely great! I love him, but during this time, my husband was not involved like he his now. He did not hear Dr. Waguespack warn me against having this surgery for fear of Anesthesia Dolorosa, "a pain far worse than what you have now." This doc in Fl. was suppossedly the best! He'd done more of these surgeries than anyone, but did that mean they were all successful, I asked? No answer to that. There is someone out there who relates. Wow. I am only 51. This all began when I was only 40. Now the pain is constant, and I sometimes use a ketamine compound. I try to live life wtihout complaining; I lost most of my friends, except my sisters in the Women Divers Hall of Fame. I thank you Patti for spending so much time writing your story. It helped me today! God Bless you. Julz

Last edited by findingjulz; 04-01-2010 at 04:14 PM. Reason: The pain pump
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Old 04-01-2010, 04:21 PM   #19
findingjulz
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Quote:
Originally Posted by robninja1 View Post
Hi Burntmarhmallow, my name's Rob and I've only just found this site and just read the message you posted back in 07 about caring for someone with TN. It made me cry so much because I suffer from Anesthesia Dolorosa and this message "hits the nail on the head".
Me too, I read his post and I cried, but mostly I want my husband to read it. I also have AD and I have a pain pump installed which helps me. I wrote in reply to an earlier post and told some of my story, a failed MVD... I had that surgery in 2008; in 2009 I had the pain pump installed which takes the narcotics to my spinal fluid. It helps, but I still have to take lots of other meds. thank you all.
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Old 04-01-2010, 04:29 PM   #20
findingjulz
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Quote:
Originally Posted by Burntmarshmallow View Post
I wrote you but just seen this and need to stress that you make sure you have not run out of time each state has a statue of limitations on things . like for mal pratice here in fl I think it is 2 years but not sure , each thing has a different limitation time. so check that for your state and also make sure all your doctors are putting all this in your file documenting every thing.. your pain etc..
I will be in touch soon.
PEACE
BMW
You have obviously been so helpful to so many in this forum. I want to ask for your prayers and to thank you for writing the post about caring for a TN patient. My story is long, started with V1 TN and after no results with Gamma, I had MVD and now I have AD which affects the entire right side of my face. I also have the medtronic pain pump which uses Dilaudad and Mirocaine (Bubifocaine sp?) - this is helping heaps; I still use some oral pain meds and I no longer drive, scuba dive, which was my profession. I just take one day at a time and I find when I am alone and not talking (which I so love to do) I am best and need less medication.
Thanks for all your support. Just reading your posts means heaps to me.

God Bless you, BMW... u r a jewel!

julz in texas
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