Weaning off Tegretol

General General TN & GPN (Old Site)
1

Hi

Just wondering if anyone else on here has ever reduced their dosage of Tegretol and if you did, what kind of symptoms did you have after a reduction?

I'm post-MVD and have managed to come down 200mg to 600mg so far over a 4 week period, I'm doing it VERY slowly for fear of the pain spiking as I still have pain post surgery. However, I have bad headaches, a dodgy stomach, hyper-activity and have trouble sleeping. Can't seem to find anything online on whether it's the Tegretol reduction or whether I'm just stressed!

Thoughts?

2

I never reduced my dosage ever, and unless advised by Physician, is not advisable. It is there to do a job, so let it do it.

However, I stopped post-MVD as it wasn't required and the Tegretol was never needed again. That you still have some pain is something you need to report to your Physician/Neurologist. Bad headaches, well there isn't any such thing as a good one, but suffice to say, it goes with the territory: you have just had a Craniotomy! Dodgy-stomach and trouble sleeping are things to discuss with medical staff.

At some point you have to have NO Tegretol in order to know how effective the MVD has been, as obviously it will mask any Hyper-activity of the Glossopharyngeal nerve.

Stay strong, stay the course and you will come out the other side.

3

When I was very first diagnosed with Neuralgia many years ago he put me on Tegretol. The problem I had was memory loss. I was in my early thirties at that time and knew it had to be from the medication. It was the only medicine I took. I asked the doctor and he said no it would not be from Tegretol. But I went off of it anyway. Cold turkey. It has been so long I don't remember problems with going off of it. But I never took it again. I did read an article about 5 years later that a side effect of Tegretol was memory loss. I think they just did not know it at the time.

4

Sorry, I should have added that I am weaning off Tegretol under the supervision of my neuro surgeon. I'm just after other peoples' opinions on side effects when coming down.

5

Hi Granadam,

Just had a quick look over on the TN site and there's a few discussions. They all seem to mention "jittery" "anxious" and insomnia - with one discussion saying it does settle down after a while. No specific time frame mentioned. Sounds like you're making steady progress - hang in there :)

6

Hi granadam have sent PM

Over the years I have moved up and down with the dose without any problem I have at times been off them all together, I am on the way down at the moment, what I found was that at some time the pain would always come back so for the moment I am going to stick at 600mg down from 800mg. I have also started trying out Pregabalin which is supposed to have less side affects. Hope you will soon be able to report that you are pain free and med free.

Alan

7

Thanks Smiley & Alan, that helps. Hopefully it's just a phase and will pass. Going down 100mg every 3 weeks, scary but has gone well so far other than the weird side effects. At least I know now that I'm "stable" at 600mg so even if I go lower and it gets worse, I can go back up to 600mg....that's still a 200mg reduction than before surgery so yay, progress!

8

Hi my name is Diana and I have had GPN for over 16 years. In the beginning I only had it maybe two weeks a year now I have it all the time. Two years ago I started pain block injections which I get twice a year and I can come off tegretol but without this I would be on the tablets up to 600 ml a day when it is bad. I would nor recommend you come off your tabs altogether as if the pain is bad it will take days for you to get your dosage up and one thing I have learned no matter what I try to keep the pain to a minimum. It's taken me years to accept my condition but I have no choice.

9

Hi Diana,

My name is Rick and I'm sorry to hear that you've had GPN for 16 years. I too have GPN but only for a few months in the past 2 years. It goes away but comes back...I think stress has a big part in this condition. My question to you is Tegretol safe to be taken for so many years at your mentioned dosage. I know there's a liver test that's recomended .

I've also had the Nerve Block procedure without much luck, I had this done in NYC. The impression I get from most of the Doctors is that they say if you can handle the pain with drugs stay away from surgery. The worst part of this condition is the rarity of it. I was treated by 2 Doctors in NYC Presbyterian Hospital. They both told me I was their 1st GPN patient. As is other Dr's I've mentioned it to. Thank God for this site to release some of the frustrations associated

with this condition. I had 1 Dr. who said GPN affects close to one in a million people. Why haven't you considered MVD

surgery ?

Hope to hear from you, Rick

10

Nice to hear from you Rick. Like you it took me 4 years to get it diagnosed in Ireland and if I want surgery I would have to travel to England. After paying hundreds to find out why first of all I had a very sore throat then shocks in my throat and tongue it was a Dr in the south of Ireland that told me what I had while I was on holidays. I have had 6 pain blocks and only two have not worked so about every 6 months I get two injections into my neck just below my ear. It takes about two weeks to settle in which time I can come off all tablets and be myself. Like you I felt very alone as all the Docs I went to knew nothing but I am very lucky that my pain Doc fits me in when ever I get bad. They tell me surgery is too dangerous so for now I live in hope someone some where will do research on our be half till then I am here to talk.

11


Hi Diana, I've had GPN for 2 years now off & on. I was diagnosed with GPN when it came back the second time which was last year. The 1st pain management Dr. gave me an injection of cortisone in the tongue with no relief. The 2nd Dr.gave me a Nerve Block procedure where he injected a steroid in my neck at which I was expecting to feel immediate relief of which I didn't. Now you mentioned that it takes about 2 weeks to settle in.On or about that time I did feel some relief but didn't attribute to the nerve block. You've given me some hope and direction because I didn't want any surgery.After the nerve block I did eventually stop all meds but I had started Acupuncture where I gave alot of credit.How often do you take these injections. Did your Dr. have you in a cat scan machine for the nerve block ?

I'm glad we corresponded, Rick

diana said:

Nice to hear from you Rick. Like you it took me 4 years to get it diagnosed in Ireland and if I want surgery I would have to travel to England. After paying hundreds to find out why first of all I had a very sore throat then shocks in my throat and tongue it was a Dr in the south of Ireland that told me what I had while I was on holidays. I have had 6 pain blocks and only two have not worked so about every 6 months I get two injections into my neck just below my ear. It takes about two weeks to settle in which time I can come off all tablets and be myself. Like you I felt very alone as all the Docs I went to knew nothing but I am very lucky that my pain Doc fits me in when ever I get bad. They tell me surgery is too dangerous so for now I live in hope someone some where will do research on our be half till then I am here to talk.

12

Yes, One side effect from tegretol is and I would call it memory lapse. When your off the pills your memory comes back.As far as the withdrawl from tegretol, there is definitely a negative side effect from coming off too much too soon.

Rick

Arlene said:

When I was very first diagnosed with Neuralgia many years ago he put me on Tegretol. The problem I had was memory loss. I was in my early thirties at that time and knew it had to be from the medication. It was the only medicine I took. I asked the doctor and he said no it would not be from Tegretol. But I went off of it anyway. Cold turkey. It has been so long I don't remember problems with going off of it. But I never took it again. I did read an article about 5 years later that a side effect of Tegretol was memory loss. I think they just did not know it at the time.

13

Hi Rick: My name is Maggie and I live in Maine. I've had GPN for 14 years. I took Tegretol for more than 7 years until I developed an allergic reaction (SCLE--subcutaneous lupus erythematosus) and had to taper off it. I was taking 4800 mg a day--one doc said I should be a zombie taking such a large dose. I tapered off (under doctor's supervision) while increasing the Neurontin and everything seemed OK. I also take 60 mg Cymbalta once a day. Then the Neurontin began to fail me. I started having attacks again. Originally, I could measure them in seconds; then they began in earnest and some lasted for an hour. Then every time I swallowed. Then I could just touch a pill to my tongue and an attack would be triggered. It was a nightmare. I am now on Lyrica (expensive!) 600 mg a day, still 3600 mg of Neurontin, and 60 mg of Cymbalta. I wish I could be back on Tegretol--it was the only thing that worked consistently. Get advice from a doctor--don't reduce the Tegretol on your own. Take care.

14

Yes I've had memory loss for the 4 years I've been on Tegretol. Hoping now I'm decreasing that I get more memory back!

@ Diana - I've sent you a friend request, was going to PM you but then it wouldn't let me. I'm Irish too, though I only got GPN after moving over here and have been lucky to be able to have the MVD surgery on the nhs, but I do believe that TN and GPN sufferers in Ireland find it very difficult to find specialists as well as get treated.

15

HELLO AGAIN,

IN REPKY, I WAS ON MORE OR LESS TGE SAME TEGRETOL DOSESGE AS YOURSELF, AND AM NOW ON 3mg a day. As you know I was thinking of trying to obtain an Mvd but all the neurologists at the hospital I attended told me firstly that there has never been a sucessfuk outcome from an Mvd for GN. Whereas there for TN. When I disputed this because if the sduscussions I have read on this web site the neurosurgeons at this famous neurological hospital I attended said I was mistaken and there exists no published medical papers on this. Hence my previous discussions with you to find out which neurosurgeon in the UK you were to use for your MVD. The reason I write this is to explain that since then I have had another operation for something different and for some reason since then have suffered no GN pains. SpSO HAVE SLOWLY REDUCED MY TEGRETOL LEVELS FROM THE LEVELS YOU WERE ON TO ONLY 3 MG A DAY. INTERESTING THE NEUIRISURGEONS AT THIS FAMOUS NEUROLIGICAL HOSPITAL HAVE TOLD ME THAT THEY SUSPECT 2THINGS COUKD HAVE HAPPENDED. THE FIRST BEING THAT THERE IS RESEARCH EXISTING WHICH SHOWS ANEASTHETIC BY SWITCHUNG OFF THE BRAIN IN A WAY NO ONE YET REALLY KNOWS HOW OR WHAT HAPPENS TO US, HAS “RESET” the GN nerve for me. 2. MY BLOOD PRESSURE IS LESS SINCE THAT OP. AND BECAUSE I HAVE A COMPRESSION ON THE GN NERVE OF AN ATRERY , BY REDUCING MY BLOOD PRESSURE THIS HAS REDUCED THE PRESSURE ON MY GN NERVE AS THERE IS RESAERCH PAPERS SHOWING THIS CAN HAPPEN. I AM AWARE I MAY JUST BE IN A PERIOD OF REMISSION. I WAS TOLD TO REDUCE MY TEGRETOLVERY SLOWLY ( much slower than you have done) and if any pains occur to increase TEGRETOL immediately again. During this time I have suffered very bad headaches. By very bad I really mean terrible disabling headaches. I have found having a cup of sweet coffee does after about an hour or so slowly lift these on many occasions. As stated I am now on only 3 Mg TEGRETOL a day now. I will take another month to reduce my TEGRETOL to 2MG A DAY PROVIDED THE GN PAINS DO NOT RETURN. THEN TAKE ANOTHER 3mimths to reduce another 1 MG. I WONDERED FROM YOUR POSTS IF YOUR MVD HAS NOT IN FACT WORKED AND IN FACT IF THE NEUIRIDURGEINS I HAVE SEEN IN THE UK WERE IN FACT RIGHT, THAT IS NO ONE HAS HAD A REALLY SUCCESSFUK MVD FOR GN AS OPPOSSED TO THE HUNDREDS WHO HAVE HAD FOR TN. I WOUKD. ADD THE BIG TEAM OF NEUROSURGEONS I HAVE SEEN HAVE TOLD ME THAT AS THEY THOUGHT I WOUKD BE THE ONLY PERSON THEY WOUKD SEE IN THEIR LIGR TIMES , WHO HAS GN, AS GN IS SO RARE . AS AGAINST THE HUNDREDS THEY SEE WITH TN, ALL OF THEM HAVE EXPERIENCE OF CARRYING OUT SUCCESSFUK MVDS FOR TN BUT NO ONE HAS OF MVDS FOR GN. SO IT WOUKD BE FAR TOO DANGEROUS FOR THEM TO GIVE ME AN MVD FOR GN NLESS I SUFFER PERMANENT SEVERE GN PAIN IN WHICH CASE ONLY AT THAT POINT WILL THEY THINK ABOUT TRYING TO GIVE ME AN MVD FOR GN. THEY HAVE ALSO SAID THAT RESEARCH SHOWS THAT A NERVE BLOCK IF THE GN NERVE APCAN PERMANENTLY STOP GN PAIN AS IT CAN DO FIR OTHER NERVE PAIN, BUT THAT INVE AGAIN NONE F THEM HAVE ANY EXPERIENCE OF DOING THIS FOR GN. WNEREAS THEY HAVE FOR TN . AND THAT BEVAUSE THE GLOSDO. NERVE LIES NEXT TO FAR DANGEROUS STRUCTURES IN THE THROAT AND NECK , IT WOUKD BE TOO DANGEROUS FOR ME TO HAVE THIS. SO CNSIDERING THE ADVICE THIS TEAM OF NEUROSURGEONS AT THIS FAMOUS UK NEOUROLGICAL HOSPITAL HAVE GIVEN ME WHICH IS AT ODDS FROM WHAT YOUR NEUROSURGEON HAS SAID AND DONE TO YOU, ITS IMPOSSIBLE TO KNOW WHICH NEUROSURGEON IS RIGHT. WHATDOES YOUR NEUROSURGEON TELLING YOU ABOUT BOTH THE SUCESS OR NIT OF YOUR MVD FOR GN AND HOW YOU SHOUKD GO ABOUT REDUCING YOUR TEGRETOL GIVEN OF COURSE IT TAKES TIME TO BUILD UP TEGRETOL IN YOUR SYSTEM IF IN FACT YOUR GN PAINS GET WORSE AGAIN? If you telephone Novartis who make TEGRETOL they may be able to advise you. I do so hope you have had a SUCCESSFUK MVD FIR GN, AND THAT THE NEIRISURGEINS I HAVE SEEN ARE WRONG AND THAT YOU ARE ABLE TO REDUCE YOUR DOES OF TEGRETOL YOU TAKE WITHOUT SUFFERING MORE ADVERSE EFFECTS AND PAIN. MUCH LOVE TO YOU. PLEASE LET ME KNOW YOUR PROGRESS

16

Sandy

I have read your small novel with much interest and absolute amazement.

You do not say what this procedure was that seems to have cleared up your supposed GPN pain, if it ever was GPN in the first place. Perhaps there has been a misdiagnosis here, given how little your supposed 'Famous' Neurological Hospital have in terms of experience and knowledge of GPN. They might be 'famous' for TN but sound absolutely ignorant of advances elsewhere in GPN pain relief. To tell you there are no recorded cases of successful GPN MVD's is laughable. I can only laugh as I have had a successful MVD for GPN, and laughing was impossible prior, BECAUSE of the GPN!!

I invite your so-called 'big' team of Neurologists to contact Mr Martin Hunn at Wellington Regional Hospital, New Zealand and mention my name (Michael Turner) who was successfully decompressed for GPN in June 2005!!

It is my understanding that Mr Hunn has not seen any other cases of GPN since, so it wont be a stretch for him to confirm even after 10 years.While it may be true there are no published medical journals on MVD for GPN, DOESN'T LOGICALLY FOLLOW IT DOESN'T WORK OR HASN'T BEEN DONE. The Neuros you have consulted have NOT done research into this, from what I gather in your sad account, and to say it irks is an understatement.

Feel free to point out my story, which is actually NOT a story, but a factual account of events, and then have them tell you there are no successful outcomes for GPN through MVD. I am prepared to sign an affidavit to it.

Actually, the procedure was so successful, I ended up working in Theatre WITH Mr Hunn as an Anaesthetic Technician (UK equivalent is known as an OPD) so I will not hear anything such as you have been told.

The behaviour and attitude of this team of Neurologists defies belief, if your account is accurate, and sounds as though its bordering on malpractice! Perhaps your next stop should be a legal consult NOT a Neurological one.

This 'resetting' of the Glossopharyngeal Nerve as related to you by a supposed Neurologist is laughable. I suspect this statement reveals the depth of their knowledge of this rare and little understood, condition (well clearly in the UK at least).

Just as an aside: what is 3mg of Tegretol going to do exactly? That dose is very small and I find it hard to believe it would have ANY effect on GPN pain. I was on 1200mg per DAY! Any weaning off Tegretol (Carbamazepine) can be done over a series of days.

I do hope you are pain free and it is my belief you didnt have GPN in the first place at all...but if you did and the symptoms return in Winter (as cool air temperatures below 10c have shown to cause Vasoconstriction as in my case) I suggest you consult a young Neurosurgeon who wants to make a name for himself, and have him/her contact me or Mr Hunn directly. I have his permission to use his name and he is happy to talk to any other surgeon on the technique.



useridsandy said:

HELLO AGAIN,

IN REPKY, I WAS ON MORE OR LESS TGE SAME TEGRETOL DOSESGE AS YOURSELF, AND AM NOW ON 3mg a day. As you know I was thinking of trying to obtain an Mvd but all the neurologists at the hospital I attended told me firstly that there has never been a sucessfuk outcome from an Mvd for GN. Whereas there for TN. When I disputed this because if the sduscussions I have read on this web site the neurosurgeons at this famous neurological hospital I attended said I was mistaken and there exists no published medical papers on this. Hence my previous discussions with you to find out which neurosurgeon in the UK you were to use for your MVD. The reason I write this is to explain that since then I have had another operation for something different and for some reason since then have suffered no GN pains. SpSO HAVE SLOWLY REDUCED MY TEGRETOL LEVELS FROM THE LEVELS YOU WERE ON TO ONLY 3 MG A DAY. INTERESTING THE NEUIRISURGEONS AT THIS FAMOUS NEUROLIGICAL HOSPITAL HAVE TOLD ME THAT THEY SUSPECT 2THINGS COUKD HAVE HAPPENDED. THE FIRST BEING THAT THERE IS RESEARCH EXISTING WHICH SHOWS ANEASTHETIC BY SWITCHUNG OFF THE BRAIN IN A WAY NO ONE YET REALLY KNOWS HOW OR WHAT HAPPENS TO US, HAS "RESET" the GN nerve for me. 2. MY BLOOD PRESSURE IS LESS SINCE THAT OP. AND BECAUSE I HAVE A COMPRESSION ON THE GN NERVE OF AN ATRERY , BY REDUCING MY BLOOD PRESSURE THIS HAS REDUCED THE PRESSURE ON MY GN NERVE AS THERE IS RESAERCH PAPERS SHOWING THIS CAN HAPPEN. I AM AWARE I MAY JUST BE IN A PERIOD OF REMISSION. I WAS TOLD TO REDUCE MY TEGRETOLVERY SLOWLY ( much slower than you have done) and if any pains occur to increase TEGRETOL immediately again. During this time I have suffered very bad headaches. By very bad I really mean terrible disabling headaches. I have found having a cup of sweet coffee does after about an hour or so slowly lift these on many occasions. As stated I am now on only 3 Mg TEGRETOL a day now. I will take another month to reduce my TEGRETOL to 2MG A DAY PROVIDED THE GN PAINS DO NOT RETURN. THEN TAKE ANOTHER 3mimths to reduce another 1 MG. I WONDERED FROM YOUR POSTS IF YOUR MVD HAS NOT IN FACT WORKED AND IN FACT IF THE NEUIRIDURGEINS I HAVE SEEN IN THE UK WERE IN FACT RIGHT, THAT IS NO ONE HAS HAD A REALLY SUCCESSFUK MVD FOR GN AS OPPOSSED TO THE HUNDREDS WHO HAVE HAD FOR TN. I WOUKD. ADD THE BIG TEAM OF NEUROSURGEONS I HAVE SEEN HAVE TOLD ME THAT AS THEY THOUGHT I WOUKD BE THE ONLY PERSON THEY WOUKD SEE IN THEIR LIGR TIMES , WHO HAS GN, AS GN IS SO RARE . AS AGAINST THE HUNDREDS THEY SEE WITH TN, ALL OF THEM HAVE EXPERIENCE OF CARRYING OUT SUCCESSFUK MVDS FOR TN BUT NO ONE HAS OF MVDS FOR GN. SO IT WOUKD BE FAR TOO DANGEROUS FOR THEM TO GIVE ME AN MVD FOR GN NLESS I SUFFER PERMANENT SEVERE GN PAIN IN WHICH CASE ONLY AT THAT POINT WILL THEY THINK ABOUT TRYING TO GIVE ME AN MVD FOR GN. THEY HAVE ALSO SAID THAT RESEARCH SHOWS THAT A NERVE BLOCK IF THE GN NERVE APCAN PERMANENTLY STOP GN PAIN AS IT CAN DO FIR OTHER NERVE PAIN, BUT THAT INVE AGAIN NONE F THEM HAVE ANY EXPERIENCE OF DOING THIS FOR GN. WNEREAS THEY HAVE FOR TN . AND THAT BEVAUSE THE GLOSDO. NERVE LIES NEXT TO FAR DANGEROUS STRUCTURES IN THE THROAT AND NECK , IT WOUKD BE TOO DANGEROUS FOR ME TO HAVE THIS. SO CNSIDERING THE ADVICE THIS TEAM OF NEUROSURGEONS AT THIS FAMOUS UK NEOUROLGICAL HOSPITAL HAVE GIVEN ME WHICH IS AT ODDS FROM WHAT YOUR NEUROSURGEON HAS SAID AND DONE TO YOU, ITS IMPOSSIBLE TO KNOW WHICH NEUROSURGEON IS RIGHT. WHATDOES YOUR NEUROSURGEON TELLING YOU ABOUT BOTH THE SUCESS OR NIT OF YOUR MVD FOR GN AND HOW YOU SHOUKD GO ABOUT REDUCING YOUR TEGRETOL GIVEN OF COURSE IT TAKES TIME TO BUILD UP TEGRETOL IN YOUR SYSTEM IF IN FACT YOUR GN PAINS GET WORSE AGAIN? If you telephone Novartis who make TEGRETOL they may be able to advise you. I do so hope you have had a SUCCESSFUK MVD FIR GN, AND THAT THE NEIRISURGEINS I HAVE SEEN ARE WRONG AND THAT YOU ARE ABLE TO REDUCE YOUR DOES OF TEGRETOL YOU TAKE WITHOUT SUFFERING MORE ADVERSE EFFECTS AND PAIN. MUCH LOVE TO YOU. PLEASE LET ME KNOW YOUR PROGRESS
17

Sandy, thank you for your reply to my thread. I completely agree with Kiwi - whoever has told you there is no research to show that MVDs for GPN are successful, may have been right on the no research part but WRONG in reality. There are PLENTY of people who have complete success with this surgery. Yes there are those with complications, but the success stories are there. I'm only 17 weeks post surgery so it is still too early to categorically say mine was unsuccessful. I have a little bit of discomfort, but it's not PAIN hence why I'm coming down Tegretol to see what the pain is like without it.

You have to have an MRI to show up the compression before you can say whether you did/didn't have GPN in the first place, although you are right you could just be in remission.

I'm shocked and horrified at the advice you've been given by this "famous hospital" and would highly suggest you get a 2nd opinion.

18

THANK YOU BOTH BOTH FOR YOUR REPLIES. I APPEAR TO HAVE ANGERED KIWISURVIVOR. DID NOT MEAN TO . JUST TRIED TO GIVE AN HONEST ACCOUNT OF WHATS HAPPENED TO ME.



I AM SORRY ABOUT THE STATE OF MY THREAD. DO NOT KNOW WHAT HAPPENED.IT KEPT SPELLING ITSELF. I TRIED DELETE , EDIT , INSTEAD IT POSTED! I AGREE WITH WHAT BOTH OF YOU HAVE SAID AND I CANNOT TELL YOU HOW GREAT IT IS TO KNOW BOTH OF YOU ARE NOT IN PAIN AND HAVE HAD SUCESSFUL MVDS FOR GN AS THAT GIVES ME SO MUCH HOPE. ALSO SOME NAMES AND FACTS SO I CAN DISPUTE MEDICS WHO TELL ME MVDS FOR GN HAVE NEVER BEEN SUCCESSFUL



I AM NOT SURPRISED GRANADAM WAS " shocked and horrified" BY WHAT WAS SAID TO ME AT THIS " famous hospital" BY THE WOMAN PROFESSOR I WAS REFERRED TO WHO FREQUNTLY HEADS THE TEAM OF CONSULTANTS I HAVE BEEN SEEING AT THE FACIAL PAIN CLINIC OF THIS HOSPITAL . I DESCRIBED IT IN MY THREAD AS THE “famous hospital” IN THE HOPE SOMEONE ON THIS SITE MIGHT BE ABLE TO IDENTIFY IT.



I WANTED TO NAME IT AND THE CONSULTANT WHO GAVE ME WHAT I ALSO THINK WAS VERY INCORRECT INFORMATION ABOUT THE SUCESS OF MVDS FOR GN ETC. FOR ME HER WRONG VIEWS HAVE MEANT I HAVE WASTED SO MUCH TIME SEEKING HELP AT THAT HOSPITAL AND GOT NO WHERE. THEIR ONLY ADVICE TO ME HAS ALWAYS EVER BEEN KEEP TAKING THE TEGRETOL WHICH I WAS TAKING BEFORE I WENT THERE. WORSE , ITS MEANT NEITHER AN MVD NOR A SYLOID REMOVAL OP. (OR A NERVE BLOCK ) HAS EVER BEEN OFFERED TO ME DESPITE ME SUFFERING LOTS OF ADVERSE SIDE EFFECTS FROM TAKING TEGRETOL INCLUDING HAVING TO BE ADMITTED AS AN EMERGENCY PATIENT FOR 2 WEEKS IN THAT HOSPITAL DUE TO ADVERSE SIDEVEFFECTS OF TAKING TEGRETOL.





I DID NOT DO SO

BECAUSE IT IS VERY DIFFERENT RECOMMENDING A GOOD HOSPITAL OR DOCTOR ,WHICH THIS SITE DOES BUT IT IS VERY DIFFERENT EXPOSING THE SHORTCOMING OF DOCTORS. THAT COULD CAUSE A LOT OF TROUBLE AND SO I DID NOT. I IDENTIFIED IT AS THE “famous hospital” AS I HAVE BEEN TOLD IT IS . ITS ALSO INTERNATIONALLY RENOWNED. ITS A NEUROLOGICAL AND NEUROSURGICAL HOSPITAL. PLEASE PHONE ME IF YOU WANT NAMES.



I DID NOT MISUNDERSTAND WHAT WAS SAID. IT WAS ALSO SAID IN FRONT OF MY PARTNER AS WELL IN FRONT TWO NEUROSURGEONS WHO WORK ON THE TEAM I SAW .SADLY , NONE IF THEM DISPUTED WHAT THIS PROFESSOR SAID .



I IMMEDISTELY DISPUTED IT, TELLING THIS WOMAN PROFESSOR OF THE INFO. ON THIS SITE ABOUT SUCCESSFUL MVDS ALSO THAT I HAVE BEEN IN CONTACT WITH A LADY IN THE US WHO HAD A SUCCESSFUL MVD FOR GN. ALL TO NO AVAIL. I WAS IMMEDISTELY PUT DOWN .TOLD I WAS WRONG. TOLD NO ONE HAS EVER CARRIED OUT A SUCCESFUL MVD FOR GN ONLY FOR TN ETC. THIS WAS ALL DONEB BY THIS WOMAN PROFESSOR .



I REALISED AT THAT POINT , FIRSTLY, THAT THIS PROFESSOR WAS WRONG . SO I LOST ALL CONFIDENCE IN HER. I WAS TOLD BY ANOTHER DR LATER THAT THIS PROFESSSORS PRIMARY QUALIFICATION WAS IN DENTISTRY. THAT SHE IS NOT A NEUROLOGIST OR A NEUROSURGEON . THAT HERB MAIN INTERESTS ARE IN TN AND FACIAL PAIN. THE DOCTOR WHO SAID THIS PUT THIS PROFESSOR DOWN TO ME. HE TOLD ME ALL SHE COUKD DOLE OUT WAS TEGRETOL AND OTHER MEDS FOR TN. THST AS SHE WAS THE “mother” OF THE FACIAL PAIN TESM NI ONE LIKE TO DISAGREE WITH HER.



GIVEN THIS PROFESSOR HAD INFORMED US I WAS THE ONLY PERSON WITH GN SHE AND HER TEAM WERE LIKELY TO MEET IN THEIR LIGR TIMES, IT FOLLOWS NO ONE I SAW THERE HAD ANY REAL EXPERIENCE OF HELPING A GN SUFFER.



ALSO GIVEN SHE SAID WHAT SHE DID ABOUT THERE HAD BEEN NO SUCCESSFUL MVDS FOR GN IN THE WORLD IN FRONT OF TWO NEUROSURGEONS ON THE TEAM NEITHER OF WHOM DISPUTED WHAT SHE SAID MADE IT MORE DIFFICULT TO TAKE ON NOT ONLY HER BUT THESE TWO SILENT MEN ALSO.



ALSO THE NEUROSURGEONS HAD ALREADY TOLD ME THAT UNFORTUNATELT FOR ME THEY HAD NEVER CARRIED OUT MVD FOR GN ONLY FOR TN.SO HAD NO EXPERIENCE IN MVD OPS FOR



ALSO, IN THEIR OPINION IT WOULD BE FAR TOO DANGEROUS TO DO AN MVD FOR GN GIVEN THE CLOSE POSITION OF THE GN NERVE TO OTHER VITAL LIFE STRUCTURES .



IN REPLY TO KIWISURVIVORS COMMENTS ABOUT I MAY NOT HAVE GN GIVEN I AM CURRENTLY ON A LOW DOSE OF TEGRETOL. ALL I WOULD SAY IS THAT I HAD AN MRI AT THAT HOSPITAL THIS YEAR AS AN INPATIENT . IT REVEALED I HAVE A COMPRESSION OF MY GLOSSO. NERVE. ALSO AN ELONGATED STYLOID.



NATURALLY THAT WAS SHOWN UP I ASKED THEM IF I COULD HAVE AN MVD FOR GN OR MY SYLOID REMOVED . THE LATTER FIRST AS I HAD READ THAT COULD RESOLVE GN PROBS. I WAS TOLD THE SAME THING. BOTH TOO DANGEROUS. NO EXPERIENCE THERE TO DO IT. LITTLE HOPE SUCCESS. I ALSO ASKEDABOUT NERVE BLOCKS. WAS TOLD THEY COUKD WORK BUT THE NEUROSURGEON SAUD WHILST HE HAD READ HOW IT CAN BE DONE HE HSD NO EXPERIENCE OF DOING IT. UNLIKE FOR TN WHICH HE HAD. THAT ON E AGAIN TO TRY TO DO THST FOR A GN SUFFER WAS FAR TOO RISKY GIVEN THE POSITION OF THE GN NERVE. ETC. SO AGAIN I KNEW THAT THIS HOSPITAL AND ITS TEAM COUKD OFFER ME NOTHING EXCEOT TO KEEP ME ON TEGRETOL.



I WAS TOLD BY ONE DR THAT " they don’t know what to do with you" . I HAD ALREADY GUESSED THST. LADT TIME I SAW THIS PROFESSOR AND HER TEAM SHE SAID AS I WAS ON SUCH LOW LEVELS OF TEGRETOL THRY WOUKD DISCHSRGE ME. THAT IF I GOT INTO PAIN I VAN CONTACT THRM AGAIN.



THAT WAS A RELEIF! DONT INTEND TO!.



DURING ALL OF THIS I HAVE FELT PRETTY DESPERATE, AS I IMMEDIATELY REALISED DESPITE GOING TO THIS HOSPITAL AND THINKING I WOULD BE OK THERE, I CLEARLY WAS NOT. IN ESSENCE I HAVE WASTED YEARS OF MY LIFE OFTEN BEING ILL. UP UNTIL RECENTLY, I DID NOT KNOW WHERE TO GO NEXT.



SO THANK GOODNESS FOR THIS SITE. THE INSIGHTS, AND KNOWLEDGE ITS GIVEN ME HAS REALLY HELPED.



I NOW KNOW THE NAME OF GRANADAMS NEUROSURGEON WHICH IS BRILLIANT. I HAVE TO HAVE A SMALL OP. FIRST, THEN HOPE TO CONSULT HIM.





KIWISURVIVOR MADE COMMENTS ABOUT THE FACT I AM ONLY CURRENTLY TAKING 3MG TEGRETOL A DAY AND ASKS WHAT DOES THAT DO? THE ANSWER IS I DO NOT KNOW BUT DO NOT WANT COME OFF IT ENTIRELY UNTIL I HAVE CONSUKTED GRANADAMS SURGEON SO I KNOW IF I COME OFF IT ENTIRELY L I HAVE SOMEONE OUT THERE WHO MIGHT BE COMPETENT ENOUGH TO HELP ME .



I HAVE HAD PERIODS OF REMISSION BEFORE . HOWEVER WHEN THR GN PAINS CAME BACK THEY WERE SO TERRIBLE I WENT DOWN HILL VERY QUICKLY. THEY WERE SO SEVERE AND FREQUENT , HAPPENING EACH TIME I SWALLOWED MY SALIVA ( I NEVER REALISED BEFORE HOW OFTEN WE DO THAT) I COUKD NIT AVOID THEM BY NOT ESTING OR SWALLOEING ETC. I HAD TO BE ADMITTED TO HOSPITAL BAS AN EMERGENCY PATIENT FOR WEEKS AND WEEKS. WAS ON 1500 ML TEGRETOL PLUS MORE AND MORPHINE AND DRIPS ETC AND THE TEGRETOL DID NOT KICK IN TO TURN THE PAINS OFF FOR OVER A MONTH BY WHICH TIME I HAD LOST SEVERAL STONE IN WEIGHT AND WAS VERY POORLY ETC. AS I HAVE A 6 YEAR OLD THINGS WERE DIFFICULT .



I HAVE BEEN ON VARYING DOSES EVER SINCE AND NEVER WANT TO GO BACK TO THAT TERRIBKYN PAINFUL PLACE AGAIN . THIS IS THE LOWEST DOSE I HAVE BEEN ON FOR YEARS.



I KNOW I HAVE WRITTEN A “book” AGAIN BUT GIVEN KIWISURVIVORS POST FELT I NEEDED TO



I AM SO GLAD GRANADAM YOU ARE NO LONGER IN PAIN. YOU HAVE GIVEN ME SO MUCH HOPE. I LOK OUT FOR YOU POSTS, SO PLEASE KEEP WRITING THEM







WISH I HAD HAD BOTH OF YOU WITH ME WHEN I WENT TO ALL THOSE CONSULTATIONS AT THE "famous HOSPITAL AS I MAY HAVE GOT SOMEWHERE!.



AS TO NEGLIGENCE ETC. I AGREE. PROBLEM IS THE UK’s NATIONAL HEALTH SERVICE IS VERY SHORT OF FUNDS; ALSO HAS TOO MANY PATIENTS TO SEE , NOT ENOUGH NURSES OR DOCTORS OR RESOURCES ETC, AND IS RESTRICTING OPERATIONS AND MEDICINES ETC. SO OPS IN ANY EVENT ARE DIFFICULT TO OBTSIN. FOR CERTAIN PROBLEMS NOT AVAILABLE OR ONLY DONE UNLESS ABSOLUTELY NECCESSARY. OR NO LONGER DONE. SO IF POSSIBLE I LIKE TO GET ON WELL WITH MY DOCTORS.



I AM BY TRAINING A LAWYER! ( a solicitor).



I SEE THE NEGLIGENCE ANGLE OF COURSE THAT KIWISURVIVORM REFERS TO. THE PROBLEM IS THAT INVOLVES TIME AND EFFORT . IF YOU ARE IN PAIN OR SEEKING HELP THATS DIFFICULT. ALSO IT INVOLVES MONEY AND THE RISK OF AN ORDER TO PAY THE OTHER SIDES COURT COSTS IF YOU DONT PROVE YOUR CLAIM. INCORRECT ADVICE IS VERY, VERY DIFFICULT TO PROVE IN COURT BY WAY OF FACTUAL EVIDENCE IN COURT UNLESS YOU RECORD CONSULTATIONS - WHICH I DID NOT.



WHAT I HAVE ALWAYS NEEDED SINCE BEING TOLD I HAVE GN IS A MEDIC OR TEAM OF MEDICS WITH GN EXPERIENCE AND KNOWLEDGE IN THE UK WHO CAN DO NERVE BLOCKS OR MVDS FOR GN OR REMOVE MY ELONGATED STYLOID OR WHATEVER ELSE IS NEEDED TO TRY TO RESOLVE MY PAIN PROBLEMS AND GET ME OFF TEGRETOL.



I HAVE NEVER WANTED TO PROCEED BY WAY CONFRONTATION OR LAW BUT WOULD RATHER SORT THINGS OUT IN OTHER WAYS.



HAVE A GREAT WEEK BOTH OF YOU.



REGARDS, SANDY

19

Thanks for that Sandy

Clarifying the situation somewhat with your scan results.

If I came across as angry, it was not due to you or anything you have done but the complete denial of a surgical professor of something I know, to be true.

The saliva swallowing action to which you refer, reminds me very much of the pain factor involved here with regards to GPN and to not have immediate relief by way of surgical intervention, only makes me angrier. I am angry that you not only have to take on this fear of acute pain attacks, but the arrogance and shocking ignorance on display at this Neurological Institute. I am angry that Tegretol is the only answer you have been given, and not surprised you suffered weight loss as a result of 1500mg per day! all the while caring for a young one.

Take care

Michael

useridsandy said:

THANK YOU BOTH BOTH FOR YOUR REPLIES. I APPEAR TO HAVE ANGERED KIWISURVIVOR. DID NOT MEAN TO . JUST TRIED TO GIVE AN HONEST ACCOUNT OF WHATS HAPPENED TO ME.

I AM SORRY ABOUT THE STATE OF MY THREAD. DO NOT KNOW WHAT HAPPENED.IT KEPT SPELLING ITSELF. I TRIED DELETE , EDIT , INSTEAD IT POSTED! I AGREE WITH WHAT BOTH OF YOU HAVE SAID AND I CANNOT TELL YOU HOW GREAT IT IS TO KNOW BOTH OF YOU ARE NOT IN PAIN AND HAVE HAD SUCESSFUL MVDS FOR GN AS THAT GIVES ME SO MUCH HOPE. ALSO SOME NAMES AND FACTS SO I CAN DISPUTE MEDICS WHO TELL ME MVDS FOR GN HAVE NEVER BEEN SUCCESSFUL

I AM NOT SURPRISED GRANADAM WAS " shocked and horrified" BY WHAT WAS SAID TO ME AT THIS " famous hospital" BY THE WOMAN PROFESSOR I WAS REFERRED TO WHO FREQUNTLY HEADS THE TEAM OF CONSULTANTS I HAVE BEEN SEEING AT THE FACIAL PAIN CLINIC OF THIS HOSPITAL . I DESCRIBED IT IN MY THREAD AS THE "famous hospital" IN THE HOPE SOMEONE ON THIS SITE MIGHT BE ABLE TO IDENTIFY IT.

I WANTED TO NAME IT AND THE CONSULTANT WHO GAVE ME WHAT I ALSO THINK WAS VERY INCORRECT INFORMATION ABOUT THE SUCESS OF MVDS FOR GN ETC. FOR ME HER WRONG VIEWS HAVE MEANT I HAVE WASTED SO MUCH TIME SEEKING HELP AT THAT HOSPITAL AND GOT NO WHERE. THEIR ONLY ADVICE TO ME HAS ALWAYS EVER BEEN KEEP TAKING THE TEGRETOL WHICH I WAS TAKING BEFORE I WENT THERE. WORSE , ITS MEANT NEITHER AN MVD NOR A SYLOID REMOVAL OP. (OR A NERVE BLOCK ) HAS EVER BEEN OFFERED TO ME DESPITE ME SUFFERING LOTS OF ADVERSE SIDE EFFECTS FROM TAKING TEGRETOL INCLUDING HAVING TO BE ADMITTED AS AN EMERGENCY PATIENT FOR 2 WEEKS IN THAT HOSPITAL DUE TO ADVERSE SIDEVEFFECTS OF TAKING TEGRETOL.


I DID NOT DO SO
BECAUSE IT IS VERY DIFFERENT RECOMMENDING A GOOD HOSPITAL OR DOCTOR ,WHICH THIS SITE DOES BUT IT IS VERY DIFFERENT EXPOSING THE SHORTCOMING OF DOCTORS. THAT COULD CAUSE A LOT OF TROUBLE AND SO I DID NOT. I IDENTIFIED IT AS THE "famous hospital" AS I HAVE BEEN TOLD IT IS . ITS ALSO INTERNATIONALLY RENOWNED. ITS A NEUROLOGICAL AND NEUROSURGICAL HOSPITAL. PLEASE PHONE ME IF YOU WANT NAMES.

I DID NOT MISUNDERSTAND WHAT WAS SAID. IT WAS ALSO SAID IN FRONT OF MY PARTNER AS WELL IN FRONT TWO NEUROSURGEONS WHO WORK ON THE TEAM I SAW .SADLY , NONE IF THEM DISPUTED WHAT THIS PROFESSOR SAID .

I IMMEDISTELY DISPUTED IT, TELLING THIS WOMAN PROFESSOR OF THE INFO. ON THIS SITE ABOUT SUCCESSFUL MVDS ALSO THAT I HAVE BEEN IN CONTACT WITH A LADY IN THE US WHO HAD A SUCCESSFUL MVD FOR GN. ALL TO NO AVAIL. I WAS IMMEDISTELY PUT DOWN .TOLD I WAS WRONG. TOLD NO ONE HAS EVER CARRIED OUT A SUCCESFUL MVD FOR GN ONLY FOR TN ETC. THIS WAS ALL DONEB BY THIS WOMAN PROFESSOR .

I REALISED AT THAT POINT , FIRSTLY, THAT THIS PROFESSOR WAS WRONG . SO I LOST ALL CONFIDENCE IN HER. I WAS TOLD BY ANOTHER DR LATER THAT THIS PROFESSSORS PRIMARY QUALIFICATION WAS IN DENTISTRY. THAT SHE IS NOT A NEUROLOGIST OR A NEUROSURGEON . THAT HERB MAIN INTERESTS ARE IN TN AND FACIAL PAIN. THE DOCTOR WHO SAID THIS PUT THIS PROFESSOR DOWN TO ME. HE TOLD ME ALL SHE COUKD DOLE OUT WAS TEGRETOL AND OTHER MEDS FOR TN. THST AS SHE WAS THE "mother" OF THE FACIAL PAIN TESM NI ONE LIKE TO DISAGREE WITH HER.

GIVEN THIS PROFESSOR HAD INFORMED US I WAS THE ONLY PERSON WITH GN SHE AND HER TEAM WERE LIKELY TO MEET IN THEIR LIGR TIMES, IT FOLLOWS NO ONE I SAW THERE HAD ANY REAL EXPERIENCE OF HELPING A GN SUFFER.

ALSO GIVEN SHE SAID WHAT SHE DID ABOUT THERE HAD BEEN NO SUCCESSFUL MVDS FOR GN IN THE WORLD IN FRONT OF TWO NEUROSURGEONS ON THE TEAM NEITHER OF WHOM DISPUTED WHAT SHE SAID MADE IT MORE DIFFICULT TO TAKE ON NOT ONLY HER BUT THESE TWO SILENT MEN ALSO.

ALSO THE NEUROSURGEONS HAD ALREADY TOLD ME THAT UNFORTUNATELT FOR ME THEY HAD NEVER CARRIED OUT MVD FOR GN ONLY FOR TN.SO HAD NO EXPERIENCE IN MVD OPS FOR

ALSO, IN THEIR OPINION IT WOULD BE FAR TOO DANGEROUS TO DO AN MVD FOR GN GIVEN THE CLOSE POSITION OF THE GN NERVE TO OTHER VITAL LIFE STRUCTURES .

IN REPLY TO KIWISURVIVORS COMMENTS ABOUT I MAY NOT HAVE GN GIVEN I AM CURRENTLY ON A LOW DOSE OF TEGRETOL. ALL I WOULD SAY IS THAT I HAD AN MRI AT THAT HOSPITAL THIS YEAR AS AN INPATIENT . IT REVEALED I HAVE A COMPRESSION OF MY GLOSSO. NERVE. ALSO AN ELONGATED STYLOID.

NATURALLY THAT WAS SHOWN UP I ASKED THEM IF I COULD HAVE AN MVD FOR GN OR MY SYLOID REMOVED . THE LATTER FIRST AS I HAD READ THAT COULD RESOLVE GN PROBS. I WAS TOLD THE SAME THING. BOTH TOO DANGEROUS. NO EXPERIENCE THERE TO DO IT. LITTLE HOPE SUCCESS. I ALSO ASKEDABOUT NERVE BLOCKS. WAS TOLD THEY COUKD WORK BUT THE NEUROSURGEON SAUD WHILST HE HAD READ HOW IT CAN BE DONE HE HSD NO EXPERIENCE OF DOING IT. UNLIKE FOR TN WHICH HE HAD. THAT ON E AGAIN TO TRY TO DO THST FOR A GN SUFFER WAS FAR TOO RISKY GIVEN THE POSITION OF THE GN NERVE. ETC. SO AGAIN I KNEW THAT THIS HOSPITAL AND ITS TEAM COUKD OFFER ME NOTHING EXCEOT TO KEEP ME ON TEGRETOL.

I WAS TOLD BY ONE DR THAT " they don't know what to do with you" . I HAD ALREADY GUESSED THST. LADT TIME I SAW THIS PROFESSOR AND HER TEAM SHE SAID AS I WAS ON SUCH LOW LEVELS OF TEGRETOL THRY WOUKD DISCHSRGE ME. THAT IF I GOT INTO PAIN I VAN CONTACT THRM AGAIN.

THAT WAS A RELEIF! DONT INTEND TO!.

DURING ALL OF THIS I HAVE FELT PRETTY DESPERATE, AS I IMMEDIATELY REALISED DESPITE GOING TO THIS HOSPITAL AND THINKING I WOULD BE OK THERE, I CLEARLY WAS NOT. IN ESSENCE I HAVE WASTED YEARS OF MY LIFE OFTEN BEING ILL. UP UNTIL RECENTLY, I DID NOT KNOW WHERE TO GO NEXT.

SO THANK GOODNESS FOR THIS SITE. THE INSIGHTS, AND KNOWLEDGE ITS GIVEN ME HAS REALLY HELPED.

I NOW KNOW THE NAME OF GRANADAMS NEUROSURGEON WHICH IS BRILLIANT. I HAVE TO HAVE A SMALL OP. FIRST, THEN HOPE TO CONSULT HIM.


KIWISURVIVOR MADE COMMENTS ABOUT THE FACT I AM ONLY CURRENTLY TAKING 3MG TEGRETOL A DAY AND ASKS WHAT DOES THAT DO? THE ANSWER IS I DO NOT KNOW BUT DO NOT WANT COME OFF IT ENTIRELY UNTIL I HAVE CONSUKTED GRANADAMS SURGEON SO I KNOW IF I COME OFF IT ENTIRELY L I HAVE SOMEONE OUT THERE WHO MIGHT BE COMPETENT ENOUGH TO HELP ME .

I HAVE HAD PERIODS OF REMISSION BEFORE . HOWEVER WHEN THR GN PAINS CAME BACK THEY WERE SO TERRIBLE I WENT DOWN HILL VERY QUICKLY. THEY WERE SO SEVERE AND FREQUENT , HAPPENING EACH TIME I SWALLOWED MY SALIVA ( I NEVER REALISED BEFORE HOW OFTEN WE DO THAT) I COUKD NIT AVOID THEM BY NOT ESTING OR SWALLOEING ETC. I HAD TO BE ADMITTED TO HOSPITAL BAS AN EMERGENCY PATIENT FOR WEEKS AND WEEKS. WAS ON 1500 ML TEGRETOL PLUS MORE AND MORPHINE AND DRIPS ETC AND THE TEGRETOL DID NOT KICK IN TO TURN THE PAINS OFF FOR OVER A MONTH BY WHICH TIME I HAD LOST SEVERAL STONE IN WEIGHT AND WAS VERY POORLY ETC. AS I HAVE A 6 YEAR OLD THINGS WERE DIFFICULT .

I HAVE BEEN ON VARYING DOSES EVER SINCE AND NEVER WANT TO GO BACK TO THAT TERRIBKYN PAINFUL PLACE AGAIN . THIS IS THE LOWEST DOSE I HAVE BEEN ON FOR YEARS.

I KNOW I HAVE WRITTEN A "book" AGAIN BUT GIVEN KIWISURVIVORS POST FELT I NEEDED TO

I AM SO GLAD GRANADAM YOU ARE NO LONGER IN PAIN. YOU HAVE GIVEN ME SO MUCH HOPE. I LOK OUT FOR YOU POSTS, SO PLEASE KEEP WRITING THEM



WISH I HAD HAD BOTH OF YOU WITH ME WHEN I WENT TO ALL THOSE CONSULTATIONS AT THE "famous HOSPITAL AS I MAY HAVE GOT SOMEWHERE!.

AS TO NEGLIGENCE ETC. I AGREE. PROBLEM IS THE UK's NATIONAL HEALTH SERVICE IS VERY SHORT OF FUNDS; ALSO HAS TOO MANY PATIENTS TO SEE , NOT ENOUGH NURSES OR DOCTORS OR RESOURCES ETC, AND IS RESTRICTING OPERATIONS AND MEDICINES ETC. SO OPS IN ANY EVENT ARE DIFFICULT TO OBTSIN. FOR CERTAIN PROBLEMS NOT AVAILABLE OR ONLY DONE UNLESS ABSOLUTELY NECCESSARY. OR NO LONGER DONE. SO IF POSSIBLE I LIKE TO GET ON WELL WITH MY DOCTORS.

I AM BY TRAINING A LAWYER! ( a solicitor).

I SEE THE NEGLIGENCE ANGLE OF COURSE THAT KIWISURVIVORM REFERS TO. THE PROBLEM IS THAT INVOLVES TIME AND EFFORT . IF YOU ARE IN PAIN OR SEEKING HELP THATS DIFFICULT. ALSO IT INVOLVES MONEY AND THE RISK OF AN ORDER TO PAY THE OTHER SIDES COURT COSTS IF YOU DONT PROVE YOUR CLAIM. INCORRECT ADVICE IS VERY, VERY DIFFICULT TO PROVE IN COURT BY WAY OF FACTUAL EVIDENCE IN COURT UNLESS YOU RECORD CONSULTATIONS - WHICH I DID NOT.

WHAT I HAVE ALWAYS NEEDED SINCE BEING TOLD I HAVE GN IS A MEDIC OR TEAM OF MEDICS WITH GN EXPERIENCE AND KNOWLEDGE IN THE UK WHO CAN DO NERVE BLOCKS OR MVDS FOR GN OR REMOVE MY ELONGATED STYLOID OR WHATEVER ELSE IS NEEDED TO TRY TO RESOLVE MY PAIN PROBLEMS AND GET ME OFF TEGRETOL.

I HAVE NEVER WANTED TO PROCEED BY WAY CONFRONTATION OR LAW BUT WOULD RATHER SORT THINGS OUT IN OTHER WAYS.

HAVE A GREAT WEEK BOTH OF YOU.

REGARDS, SANDY
20

HELLO AAIN MICHAEL,



THANK YOU FOR YOUR REPLY.



GREAT HEARING FROM YOU.



THE FACT I NOW HAVE THE NAME AND CONTACT DETAILS OF AT LEAST ONE SURGEON ( yours) AND PERMISSION TO USE HIS AND YOUR NAMES IS WONDERFUL. THANK YOU BOTH SO MUCH.



AFTER ALL THATB HAS BEEN SAID TO ME AT THAT “famous hospital” ABOUT NOT HAVING THE SKILLS, ETC TO DO MVDS OR ELONGATED STYLOID OPS OR NERVE BLOCKS ETC. FOR GN. THAT THEY NEVER WORK ETC. MY LATEST NEWS IS I HAVE RECEIVED A COPY OF A LETTER WHICH ONE OF THE NEUROSURGEONS HAS WRITTEN TO MY GP ( we call the local general doctor we see a GP .It stands for general practitioner).



THE LETTER STATES IN VIEW OF THE FACT I AM MANAGING SO WELL ON SUCH LOW DOSES OF TEGRETOL THEY WILL NOT CONSIDER AN OPERATION FOR ME BUT HAVE DISCHARGED ME , BUT WILL BE PLEASED TO SEE ME AGAIN IF THINGS CHANGE !



THIS LETER IS SO MISLEADING AS IT SEEMS TO IMPLY THE STAFF I SAW CAN DO SUCH OPS WHICH IS TOTALLY AT ODDS TO WHAT WAS SAID TO METIME AND TIME AGAIN.



MY ELDEST DAUGHTER WHO WORKS LOCALLY WITH GPS PRACTICE TOLD ME “THAT LETTER WORDED THAT WAYNSOUNDS GOOD FOR THRM AND COVE S THEIR BACKS” .



THE FACT IT DIES NOT REFLECT WHAT THRY TOLD ME TIME AND AGAIN THERE HAS NEVER BEEN A SUCCESSFUK MVD FOR GN. THST ITS TOO DANGEROUS AN OP TO DO WITH NO CHANCE OF SUCCESS. THST NO ONE HAS THE EXPERIENVE OR SKILLS ETC. AMAZES ME AS IT IMPLIES THEY CAN DO SUCH OPS BUT WONT BECSUSE I AM OK ETC.



I DO NOT EVER WANT TO GO BACK THER. I AM HOPING ONCE I CSN SEE GRANADAMS SURGEON I WILL HAVE AT LEAST HIM OR HIS HOSPITAL (BARTS) TO GO TO IF THE INCREDIBKY TERRIBLE PAINS I HAVE HAD CONTACT ME BACK AND CANNOT BE SWITCHED OFF BY MEDS.



IN FACT I LIVE WITH A FEAR OF THAT ALTHOUGH NO ONE KNOWS IT EEXCEPT MY PARTNER AS I DO NOT SHOW IT OR TALK ABOUT IT BUT ITS THERE. YOU SEE TO HAVE SENSED THAT MICHAEL.



TO HELP OTHERS, I AM THINKING OF WRITING A REPLY TO THAT SURGEON, ASKING HIM TO CLARIFY WHAT HE MEANT AS HIS LETTER IMPLIES HE OR HIS HOSPITAL TEAM ARE ABLE TO DO THE MVDS OR THE OPS. REQUIRED FOR GN SUFFERS . IF HE CONFIRMS WHAT THEY HAVE ALL SAID SO MANY TIMES TO ME, THEN I COULD WRITE TO. THEM AT THAT POINT AND GIVE HIM. YOUR SURGEONS DETAILS. THAT MIGHT MAKE ONE OF HIM AT LEAST AWARE THAT SURGEONS OUT THERE CSN DO SUCCESSFUL MVS FOR GN. WHICH MIGHT HELP ANOTHER GN PERSON IN THE FUTURE.ALTHOUGH WITH THAT TEAM I THINK I MAY BE HOPING FOR TOO MUCH.



IF YOU DO NOT MIMD I WILL SEND YOU A FREINDS REQUEST. I AM ALREADY FRIENDS ON BENS FRIENDS WITH GRANADAM. I AM ON FACEBOOK AS SANDY PIPER.



REGARDS, SANDY