Hiya all . I Hope someone can give me some advice . i think im heading towards disaster . I first was diagnosed with Trigeminal neuralgia 17 yrs ago after a CT scan confirmed it and i tried numerous medication , but although i lostvmany jobs and my house and flats over the years i never asked for help or support outside the medical community , about 4 years ago i became very ill and the my trigeminal problems had a massive impact on my energy levels and my breathing was awful i felt very light headed and the pain is awful . it feels like a have an open wound going deep into my head and i have a lot of right sided facial weakness . i had an MRI scan and then I had MVD surgery and the neurosurgeon said i had arterial looping around the trigeminal nerve and one artery was grooving the nerve and one was rubbing back and fore , i became vert sick again 12 months after the surgery and lost my job and was homeless for a while . i then had an MRI scan in hayward heath and they said this was clear , so i havent got any help for this at all and im too sick to work without support and i got told recently that i wont have any support to return to work although my GP said i should have it and i have chronic trigeminal neuralgia , i decided to have a scan privatly and independently , so I went to Germany and had an MRI scan , the doctor in Germany said i have crystal clear trigeminal neuralgia , he said my trigeminal nerve is bowed and theres scarring there too and friction , he said its caused by a longitudinally structure with no blood flow running parrell to my trigeminal nerve . he said my arteries are very close to my trigeminal nerve , but is not the cause , its the longitudinal structure , he said he would of loved to have seen the MRI scan before i had surgery and after , he said he thought my operation notes were wrong . when i tried to give my MRI report to my GP he just give it back to me and he wouldnt deny or verify what i was told by the Dr in Germany , my problem is i am not being treated for the real reason for my trigeminal problems and so i cant get support to go back to work and i cant stay where i am and i think im going to end up homeless again . im quite angry because i worked for 15 yrs ith trigeminal problems and ive worked and payed taxes all my life and the neurosurgeon said it was remarkable i could carry on and now im too sick i have no support , the Doctor in Germany said to me you feel very sick dont you , i wish i lived in Germany ,vits also having a big impact on my cognitive ability. why cant we get support or understanding for pain
Do you live in the UK?
I've got no advice, except my best remedy has been lidocaine cream or topical patches on the face. I'm sorry you are in such an awful situation.
Somebody will come along here soon with some suggestions perhaps..
Keep Posting!
hiya Thank you , yes in the uk , i dont think theres much that can e done now .
im in between a rock and a hard place ! , but thank you for your suggestion .
Melanie
So sorry you are dealing with all of this! Sending you my best wishes …
First let may say how sorry I am they you are still experiencing so much pain and discomfort after your MVD. Was there any point where you felt the pain was better? Sometimes when the nerve has been compressed for such a long time, you said 17 years with TN it takes a lomger time for the nerve to bounce back. I found that with myself. It was not until 23 years after my intial attack I was properly diagnosed. They say that with the back too. The rule of thumb is 1" per month on other nerves, not sure with the TN nerve. The myelin has been rubbed off for so long and it will take sometime to heal and maybe have a reduction of pain. You said you had compression from an arterial loop and from grooving from another artery. I am not a doctor and this is just something that Is my thought, not from any medical literature . Your doctor would know best. Has he explained things about why your pain may have returned? I am still on meds after my MVD 18 months ago, some folks have to stay on them even after surgery, not unusual. Sometimes another set of eyes see things differently. It does not necessarily mean another doctor is wrong, however you were diagnosed with TN and had surgery and your doctor from Germany said you have crystal clear TN. I am confused. Sometimes it just takes abit longer to heal the nerve and may need medicine support. It sounds as though you have and are going through alot. It does get frustrating you just want to ne out of pain. I do understand, my MVD was great up until 6 months after surgery and now lain is back the same as before. I comtinue with meds that barely touch the pain. Is there anyway you cN get your previous fils to the doc in Germany for review. Here in the US that is never a problem. I do not know how it works in the UK. That may give you some validation of what is goimg on and clear alot questions you may have. Sometimes doc feel abit threatened when questioned. Need to give benefit of the doubt. If your satisified you can always get a secomd or third opinion. Like I said I am not a doctor and its just some suggestions. I will keep you in my prayers and keep us posted.
My Best
Joanne
P
Hiya thank you for the advice . I think my biggest problem is the original diagnosis was wrong . i had a CT scan 17 yrs ago
and the neuroligost said there was damage to my trigeminal nerve and it would get worse in time , i had a fractured jaw 5
years before my trigeminal problems and he said thats the cause . i always thought it wasnt the cause though because when it first started it felt like a boiling hot pain deep in my head and i had a lot of facial weakness on the right side . i actually thought
I had a stroke at the time except the pain stayed with me , i had another scan in 2009 , an MRI scan and it showed arterial looping a tublar shaped signal void , they said the signal void wasnt connected to the TN . Straight after surgery for about a day I was pain free , as soon as i was taken off a machine which was helping keeping my blood pressure up the pain came back , and it was very bad it felt like the nerve sprung . in a week calmed down and i felt a lot bette although everything felt like it was being crushed , i returned to work after 4 weeks and i felt quite ill , but till much better han the 12 months leading up to the surgery , i deteriorated and about 6 months later i lost my job and became very ill again . i then actually took myself away from all stress , well tried too :) to give the surgery time , but 12 montjs after the . surgery i feel worse than ever . im very frustrated that i cant get answers too . the doctor in Germany was very insistent the signal void was the basis of tje surgery i and thats whats bowing my nerve now , but i dont understand why my operation notes are refuting what he says and why my gp want give me answers , i know they under so much stress , but i feel im in Limbo and this signal voidv might be nothing at all to worry about , but because i dont know anything about these things im a worried and ink this be the reason i feel so light
headed and weak . Thank you Joanne and Jab Jaw
kindly
Melanie
You need to see an alternative GP and also register for DLA.
Hiya thank you .
Hi Melanie,
sometimes nott all times doctors have very inflated egos that just do not want to admit they are wrong. I certainly am not sayin this is the case. Obviously a second set of eyes has revealed a problem. Since this is an independent opinion, would he be willing to discuss this with your neurosurgeon? When you had your MVD there was arterial looping around the nerve. So it seems there was compression causing your facial pain. I can see why you are confused when your GP will not discuss the second MRI results. Can you explain what a signal void is not familiar with that term. Has your neurosurgeon given any explanation fro recurring pain or reason why? I understand how disappinting this is. My Tn has returned after my MVD and my meds have incrased with minimal relief if any. Never give up hope talk to your surgeon and doctor again. One more question did this surgeon in Germany tell you if he would consider surgery or any other treatmnent for you? keep us posted
My Best
Joanne
Melanie, if you live in the UK, there is a group on here for people that live there! If you havent joined, you should and maybe they can help you with the issues you are having with the disability etc.
Also there is a moderator, Jackie from the UK that you should talk to , but she wont be online for a while due to a family crisis. Keep an eye out for when she gets back, she has tons of info that will help you.
Dont give up hope!! There is an answer and someone who will help you,
Wendy "crashgirl"
Hi Melanie
I hope the UK group can help you. I wish I had some kind of medical information to help you but your situation is very complicated. I just wanted to let you know that I read your story and I am so sorry for all your pain, loss, and confusion.
Wishing you some Peace and Happiness
Bellalarke
Hiya Joanne ,
Thank you so much for the advice . Unfortunately though I am having trouble getting past my GP to have another
Appointed with a neurosurgeon , I did have an appointment with a neurosurgeon , but I moved back in with my parents and a different health board , my Gp now , who was actually the son of the gp who treated me when I first was diagnosed with trigeminal neuralgia and I was actually told at the time after a CT scan that it was permanent said he was really sorry but there wasn't anything that could be done , He ignored the fact I had surgery since that first diagnosis and the neurosurgeon who operated said my fractured jaw was a red herring and it states quite clearly in my operation notes that the nerve was being compressed by arterial looping . It took 7 months for him to refer me and then it was to a neurologist who had no expertise with trigeminal problems .I have to get another GP I think he's trying his best , but for some reason he's ignoring the surgery I had and the MRI Scan I had which clearly said arterial looping around the trigeminal nerve and tubular shaped signal void . it gets very confusing for me though , because the Dr in Germany who is the head of a reputed MRI imaging centre said my nerve is being bowed by a longitudinal structure running parallel to my trigeminal nerve . He showed it to me on the screen and he said this was very clear . He said the arteries are looping very close to the nerve , but he said its definitely being impacted by this structure along the length of the nerve and he believes this was the basis of the surgery too . On the MRI report he give me he wrote there was a longitudinal structure with no blood flow and no gd enhancement . There was bowing of the trigeminal nerve with friction and possible scarring . There was no intracranial growth to tumor. He actually said You feel sick don't you and he hopes they can do something about this . So I think there must be something that can be done , so I'm going to register with a new GP and I'm going to see a neurosurgeon . I'll make the appointment for the consultation with a expert in Trigeminal problems . I really don't know what a signal void is or what causes it , but it seems to be the main reason for my trigeminal problems . Thank you so much for your advice :)
Kind regards
Melanie
tatto20 said:
Hi Melanie,
sometimes nott all times doctors have very inflated egos that just do not want to admit they are wrong. I certainly am not sayin this is the case. Obviously a second set of eyes has revealed a problem. Since this is an independent opinion, would he be willing to discuss this with your neurosurgeon? When you had your MVD there was arterial looping around the nerve. So it seems there was compression causing your facial pain. I can see why you are confused when your GP will not discuss the second MRI results. Can you explain what a signal void is not familiar with that term. Has your neurosurgeon given any explanation fro recurring pain or reason why? I understand how disappinting this is. My Tn has returned after my MVD and my meds have incrased with minimal relief if any. Never give up hope talk to your surgeon and doctor again. One more question did this surgeon in Germany tell you if he would consider surgery or any other treatmnent for you? keep us posted
My Best
Joanne
Hiya Wendy
Thank you so much for your advice :) .I will definitely ask Jackie for advice .
I'm won't give up hope . I will be determined , thank you .
Kindly
Melanie
crashgirl said:
Melanie, if you live in the UK, there is a group on here for people that live there! If you havent joined, you should and maybe they can help you with the issues you are having with the disability etc.
Also there is a moderator, Jackie from the UK that you should talk to , but she wont be online for a while due to a family crisis. Keep an eye out for when she gets back, she has tons of info that will help you.
Dont give up hope!! There is an answer and someone who will help you,
Wendy "crashgirl"
Hiya Bellalarke
Thank you so much for your kind words .
They mean so much .
I wish you lots of peace and happiness too x
Melanie
Bellalarke said:
Hi Melanie
I hope the UK group can help you. I wish I had some kind of medical information to help you but your situation is very complicated. I just wanted to let you know that I read your story and I am so sorry for all your pain, loss, and confusion.
Wishing you some Peace and Happiness
Bellalarke