NEURALGIA

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NEURALGIA

Postby NILI » Sun Jun 24, 2007 5:44 pm

DOES ANYONE SUFFER FROM NEURALGIA BECAUSE OF CHIARI/SYRINX? THIS IS A NEW THING WITH ME, HAD DECOMPRESSION IN 2004 BUT DID NOT DO A GREAT DEAL OF HELP AND ITS STANGE AS I HAVE A LOT OF PROBLEMS ON THE LEFT SIDE OF MY BODY WITH PAIN, PINS AND NEEDLES ETC BUT THE NEURALGIA IS ON RIGHT SIDE OF MY FACE MY NEUROSURGEON HAS TOLD ME IT IS LIKELY TO BE THE SYRINX, WHATEVER IT IS ITS DRIVING ME INSANE AT THE MOMENT, AM TAKING ALL SORTS OF PILLS FOR MY NERVE ENDINGS AND NOTHING HELPS, IS THERE A HERBAL MIRACLE OUT THERE, OR DO I JUST HAVE TO KEEP WANTING TO HIT THE NEXT PERSON THAT SAYS "HOW ARE YOU"
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Postby Snoozie » Mon Jun 25, 2007 12:03 am

I am not sure what the neuralgia is but are you taling about your face having a numb spot on it? I have that but it has gotten alot better since I started taking methylcobalimin B12.

I use the kind that goes under the tongue and around 4000mcg. I take two a day, one in the morning and one later in the day. It takes about 20 min or so to dissolve but I have has great improvements in alot of my symptoms.

I hope you get to feeling better soon...Sue
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Postby mac » Mon Jun 25, 2007 12:21 am

NILI,

Welcome to the board. But I"m so sorry you have the need for this place, and that you are going through so much. True Trigeminal Neuralgia is a terribly painful condition! It's not the numb spot, Sue, it is often manifested as deep, lancinating pains on the face and eyes. My doctor discussed this with me and I did some research on it. It's just a terrible thing to have.

Nili, have you done much online research? Sadly, what I found was not promising, but I would say that if you could get to a full time expert/specialist in SM/CM, you are the most apt to get the answers you so deserve and hopefully, the help as well. Have you been to TCI? I mention them because over half of their surgeries are do-overs from other surgeons' work. They see SO many cases every single day that it is pretty hard to beat the knowledge they have gleaned. If it were me, I'd go there. what you have is indeed something that you need the best help on the planet! That is what I'd want for you. What part of the country do you live in?

I'm glad you found us, maybe we can help you a bit. BTW, I'm not saying that Vitamin B12 would not help you, it may since it helps so many here with nerve damage. Have you had those levels checked for you? Sue, that was a good idea.

Well, just wanted to welcome you and I wish I had more to offer. I hope you will stick around and we can get to know you...but also, have you looked at any message boards for TN? I would think there'd be one on Brain Talk. I just want you to get the most help you can get on all levels. You deserve it.

an old cowgal, mac
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Postby NILI » Tue Jun 26, 2007 6:35 pm

HI EVERYONE AGAIN, I STAY IN SCOTLAND BUT HAVE LOOKED ON THE INTERNET FOR AL THE THINGS TO DO WITH CHIARI AND SYRINX AND HAVE FOUND THIS TO BE A GOOD ONE EVEN THOUGH ITS NOT BRITAIN I ONLY FOUND 2 IN SCOTLAND AND FELT THEY ONLY DEALT WITH THE CHIARI. I HAVE BEEN SO IGNORANT ABOUT WHAT I HAVE AND EVEN WHEN I HAD THE SURGERY I WAS SO DESPERATE TO "BE BACK TO NORMAL" I PERSUADED MY NEURO IT WOULD BE BETTER TO LET ME HOME 3 DAYS AFTER SURGERY BECAUSE I DID NOT LIKE HOSPITALS!!! I HAVE STEADILY GOT WORSE OVER THE 4 YEAR PERIOD AFTER HAVING DECROMPRESSION THAT I HAVE HAD TO REALLY THINK ABOUT THE FUTURE AND THE REALITY OF BLOODY EVERYTHING!! I FEEL I HAVE FOUND A GOOD WEBSITE AND I HOPE THAT YOU LOT DONT MIND ME BEING HERE (EVEN THOUGH IM AN OUTSIDER) BUT ONE THING I WOULD LIKE TO SAY IS YOU MOSTLY SOUND UPBEAT ABOUT ALL THE PROBS AND THAT WAS WHAT I WAS LOOKING FOR. I WOULD REALLY LIKE TO TALK TO ALL OF YOU IN ANY WAY THAT HELPS ANY OF US AS I KNOW THAT IM THE ONLY PERSON IN A TOWN OF 15,000 THAT HAS IT AND USUALLY IM THE ONE TELLING THE DOCS HERE THINGS,,,,,,,,,,GOD I HAVE RAMBLED........HOPE TO SPEAK TO YOU ALL SOON AND PLEASE FEEL FREE TO TELL ME ANYTHING AS MY DOC SAID WHEN I WAS IN TEARS(FOR THE FIRST TIME) I HAVE ACCEPTED IT AND MAYBE THIS WILL DO ME GOOD
NILI
 

Postby cash71 » Tue Jun 26, 2007 6:47 pm

Nili,

Just wanted to add my welcome to the board. You are in the right place. You are not an outsider. If you have chiari, sm or related disorders than you are totally a member of this special bunch.

I share your frustrations. I am in Canada and have had a lot of trouble finding any expert care in my country too. Have you considered travelling to England. I think there is a fair amount of knowledgable docs there. we have some members from there, maybe they will chime in with some suggestions. Unfortunately a lot of us have to travel far outside of our immediate area to seek expert care. It will really make a huge difference in how you symptoms are managed if you see someone knowledgable.

I wish you all the best.

Caroline
Be kind for everyone you meet is fighting a harder battle (Plato)

Syrinx C3-T9, CM zero, OTC, cranial settling, dysautonomia/POTS, and ?EDS

see my blog for more info: http://www.chiariandsyringomyeliaincanada.blogspot.com/
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nili from scotland

Postby NILI » Tue Jun 26, 2007 7:19 pm

thank you, but yes i have seemingly got 1 of the best neuros in the country, but its good to talk and all that. I cant find anything in the whole of britain where people actually have a laugh now and then with chiari and or syrinx , i must have been the most sociable person on the planet till recently and am so fed up, i have apparently had a bit of post traumatic stress which i dont believe as i think obviously this is reserved for people that have true PTS as in soldiers etc,,,, I know there is folk that are going to have a lot to say about that last statement but believe me I have tried to understand that Im ill but it just will not register, maybe its a lack of help over here............. any way thank so much and again I hope to talk to you all soon xx nic
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