We are patients living with Trigeminal Neuralgia, here for your support.
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sarah edwards
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- Wiltshire
- United Kingdom
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Diana Parker left a comment for sarah edwards
Ken Lee by Mariah Carey - FUNNY - The most amazing home videos are here
sarah edwards left a comment for Dana
God bless Dana, to your family my love, so sad. xxxx
Diana Parker left a comment for sarah edwards
Love ya!
toni perkins left a comment for sarah edwards
thanks for the comment hope better friend god bless you with a pain free day
sarah edwards left a comment for toni perkins
Hi Toni,
Glad you found this group, everyone knows what you are going through, that in itself is a big help to me.
Sarah
Diana Parker left a comment for sarah edwards
Hiya, I went to the pain clinic today and the doctor was not there, and when hi is its a all day thing!
Diana Parker left a comment for sarah edwards
Hey girl whats up are you ok?
Diana Parker commented on sarah edwards's blog post 'TN or not TN'
I understand you right on the nose, LOL I love you humor and the verbiage you use! Some doctors kinda make it more confusing!
Diana Parker left a comment for sarah edwards
Hi Sara! What have you been up to? Hope you are well!
sarah edwards updated their profile photo
sarah edwards updated their profile
sarah edwards left a comment for Diana Parker
Hiya Hun, found you, lol. Well I think I have GN as well, the description fits my bill quite completely, I do find it strangely soothing to know I am not alone, though I also feel guilty at this thought, dumb huh?
I don't know how much about me…
Profile Information
- What treatments have you undergone (or will undergo)? With what success?
- tonnes of medication, enough to make me rattle when you bump into me!
- Please share your TN story with us...(How did your pain first emerge and then change over time? Were you ever misdiagnosed? Do you believe your pain was caused by dental work? Have you had unsuccessful surgeries or medications?)
- Hi, I will apologise in advance, this is likely to be long winded. I have had this horrific pain for 20 months, I have been passed from pillow to post with regards possible causes, first diagnosed as TMJ, told to take analgisia and use cold/hot packs and it would calm down and go away. Well it didn't! I saw an orofacial consultant who arranged an MRI to rule out an acoustic neuroma and I had an x-ray of my mandibular joint which was reported on as being 'normal', and a bite riser made to reduce my 'nocturnal grinding' Well I have no tumor and I have stopped grinding but the pain did not go away, cue next waiting list to see next specialist. ENT after 14 weeks wait! prodded, poked and had cameras shoved up my nose, a hearing test which proved Im not deaf and told 'its TN you need to see a neurologist' yeah another bloody waiting list. ~Anyway got handed a tonne of meds and the waiting began, you gotta love the NHS, I was in so much pain I went private, he asked me about my 'trigger' zones and tried to create an attack (did I look like a perfoming seal!) and he referred me for another MRI to rule out MS and referred me on to a neuro-surgeon. Saw neuro-surgeon who wanted another MRI and agreed to perform an MVD. I was admitted to hospital on 9th March and was all ready to go to theatre when the neuro-surgeon came, he explained the procedure and looked at my MRI, then he came and dropped a bombshell, he couldn't see a compromised vein so wouldn't do the operation! instead he said I may have been given the wrong diagnosis and he thinks I actually have occipital neuralgia and wants a 2nd opinion. I was absolutely distraught, mental torture is not my strong point! He did give me some steroid injection into the occipital vein and for 10 days I have been free of the bolts that have destroyed the past 20 months of my life!! He talked of giving me PENS which I believe is going to be the answer to my prayers. I have been off work since October last year because the medication turned me into a zombie, now I am being weened off them because guess what I didn't bloody need them....AAAAAARGH
- Would you like to recommend a doctor, therapist or a hospital?
- Mr N K Patel Bristol Frenchay
Sarah edwards's Blog
TN or not TN
Hello, I am new to this site, recommended by a friend. I went into hospital for an MVD on 9th March 09 and just before I went to theatre the neuro-surgeon looked at my MRI and said he thought I may have had the wrong diagnosis, he thinks I actually have Occipital Neuralgia and he refused to to the MVD! Instead he injected steroids into the occipital nerves and I have been 'shock free' since. I am being weened off the Tegratol and he talked about me having a 2nd opinion with a professor at… Continue
Posted on March 21, 2009 at 7:22pm — 1 Comment
Comment Wall (9 comments)
- At 1:46pm on November 16, 2009,
Diana Parker said…
- At 8:17pm on October 4, 2009,
Diana Parker said…
- Love ya!
- At 9:13pm on September 12, 2009,
toni perkins said…
- thanks for the comment hope better friend god bless you with a pain free day
- At 5:22pm on September 10, 2009,
Diana Parker said…
- Hiya, I went to the pain clinic today and the doctor was not there, and when hi is its a all day thing!
- At 12:40am on September 2, 2009,
Diana Parker said…
- Hey girl whats up are you ok?
- At 6:14pm on August 30, 2009,
Diana Parker said…
- Hi Sara! What have you been up to? Hope you are well!
- At 5:58pm on March 23, 2009,
Liz K. said… - Sorry Sarah you have had to handle all this pain. Please feel free to join our chats. I also have a negative MRI but have not seen the neurosurgeon so I am unsure whether he will perform the surgery. But several here have had negative MRIs but had the MVD surgery and compression was found. I do not know what about PENS. Keep us informed. Liz K.
- At 12:47pm on March 22, 2009,
Jo said… - Hi Sarah,
Very nice to see you here.
There are loads of lovely people here who are always here to advise and support.
Hope to catch you sometime in the chatroom,
Love Jo X x
- At 3:35am on March 22, 2009,
liz said… - hi hun,u found it then ,hopefully u will get lots of advice on here
chat later hun xxxxxxxxxxxxxxx liz xxxxxxxxxxxxxxxxxxxxxxxxx
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Chiari Malformation
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