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July 24, 2014 at 6:06 pm #22118
I am in the UK and had Stage 4 M(C) from original lesion in 2008.(BRAFF wild) By chance in 2102 a melanoma was found after a nephrectomy for other reasons. PET, CT and MRI scans clear for a year then as part of screening for a drug trial ,as well as one inside the muscle on hip (removed by surgery and electron radiotherapy), on near aorta, two very small metastases (13 and 6mm) were found in brain. These were successfully treated by Gamma Knife, and I had 4 doses of ipi. I am now in total remission (no lesions seen on CT scan). (PD1 only approved in UK as part of company sponsored trials)
In the UK you have to inform the Driving, Vehicle and Licencing Authority (DVLA) if you have one or more brain metastases. They have withdrawn my licence for 2 years after treatment – no discretion from my own physicians. I have had no seizures or any other side effects after 7 months now. They say that if I can produce evidence that I am in a lower risk category, they may reconsider. I would be most interested in the detailed rules on this in the USA.I am trying to gather evidence to get my off road tariff reviewed – I will be having brain MRI’s every 3 months.
All my treatment was “free” on NHS (About £17000 for Gamma Knife, £80000 for ipi) This is one area which is great here!July 24, 2014 at 7:01 pm #65042
In the U.S., regulations vary from state to state, so what I’m writing is based on the state where I live. Reporting is the responsibility of the medical professionals, and the existence of brain metastases alone is not absolute sufficient cause to revoke driving privileges. If a driver experiences a seizure, this must be reported and he or she may not drive for a period of six months since their last seizure. There are some various waivers for certain situations, but that’s the basics as far as I understand it.July 24, 2014 at 7:47 pm #65043 RJoeyB. Thanks very much for your reply – Maybe others will give their state’s rules. I don’t suppose you have a website reference , do you? Here, the rules are very rigid and they do not seem to offer a reduction if the metastases were small, nor between Gamma Knife and Craniotomy.
Two years with no symptoms is very harsh; Maybe I should come to the USA, take a test and use a US licence here for a year! I have been symptom free for 7 months post op.
I am hoping to get information from Australia as well, as I am trying to present statistical evidence to a bunch of Government officials who are very inflexible.July 24, 2014 at 8:59 pm #65044
Since in most of the U.S., it appears to be about the actual occurrence of a seizure and not the risk of a seizure (for a sampling of states I looked at), I found this on the Epilepsy Foundation’s website, which provides a state-by-state listing of the relevant laws relating to driving and seizures.
If anyone else is reading this and is aware of laws in their state that are markedly different, please feel free to chime in. The biggest question is, are there states where the state, doctor, or other individual can initiate a legitimate process to revoke driving privileges based simply on an increased risk of seizure without an actual episode?
Certainly if a doctor believes there is a significant risk, anyone should seriously consider that advice; it’s not just risking one’s own safety but the safety of others on the road. But it is true that there is also some reasonable point of balance — I’m glad I don’t have to make that determination for others.July 25, 2014 at 7:56 am #65045
Thanks gain. That link was for epilepsy; The UK is broadly similar on that. However the mere fact of having had treated, brain melanoma metastases, with no symptoms, is enough for a two year licence withdrawal. Are you saying that in the USA there is no licence suspension unless you actually have a seizure? (Not epilepsy as such)July 25, 2014 at 8:25 am #65046
Further to the above this is the UK government guide on this issue:July 25, 2014 at 11:05 am #65047 Yes, the I know that the information I provided is from a site directed towards those who have suffered epileptic seizures. What I’m trying to convey is that for the purposes of the law in my state, and I believe most others here, my understanding is that the risk of seizure isn’t the determining factor in determining driving privilege, it’s the occurrence of a seizure — the condition causing the risk or occurrence, whether epilepsy, brain tumor, diabetes, or other, doesn’t seem to be part of the decision process to revoke someone’s driving privilege. I used the epilepsy example simply because when I did a search I came upon the epilepsy foundation’s complete state-by-state guide for how seizure disorders, which include those caused by brain tumors, are handled. Apologies for any confusion. I can find no such guide specific to brain metastases and there may not be one, again, because the it seems the cause here isn’t important to determining the right to operate a motor vehicle.
I see the document you linked includes a section specific to tumors, I can find no such specificity in the similar document for my home state of Pennsylvania:July 25, 2014 at 2:04 pm #65048
RJoeyB. Thank you again for the input. Australia seems to have broadly similar rules to the USA. I am trying to get the rules in other E.U countries but it seems to me that the UK is unduly harsh to suspend licences with no symptoms. You can imagine that taking on a Government Agency is not easy, but I am determined to get my suspension reduced somehow. I will keep you informed if I have more information, thanks again.July 28, 2014 at 6:44 pm #65049lak1Participant Hi,
I had a 3- 4mm dural lesion – suspected melanoma metastases treated in UK in March 2013. With Gamma knife in Leeds. Stage IV since 2009.
I had the support of my doctor DR Hadfield. Who felt that i had no risk of epilepsy and was not sure that it was melanoma (might have been an early menigioma.) but was treated as if it was melaonama. I had to fill out the DVLA form and my doctor submitted evidence. I was not stopped from driving other than the first month post gamma knife.
My tumour was a lot smaller – sub cm but even so yours are still small.
I have no signs of an lesions in my brain now – I have contrast enhanced MRI with 2 mm slicing.
I had ipilimumab in in 2010 for microscopic lesions on the histology of the resection margin of my liver, I developed the dural lesion in 2013 I had 3 further IPi doses. I had more growth of sub cutaneous lesions in March of this year but only tolerated one dose due to colitis. I have had sub cut lesions shrink since. I am now looking to start anti Pd1 after ny next scans in 2 weeks. The numbers are low but the best responses /stablitly have been seen in those treated with very small lesions.- sub cm and good performance. My performance is still down but rapidly improving since being able to eat again.
LesleyJuly 29, 2014 at 5:06 pm #65050
Lak1. Thanks for your input. I am gathering evidence from my Prof of Oncology, my referring Consultant Neurosurgeon, and the Consultant Neuro Surgeon at the Cromwell in London where the Gamma Knife was done. Interestingly the DVLA letter clearly says that my case was referred to the DVLA Secretary of their Medical Advisory Panel on Driving and Disorders of the Nervous System and says that specifically they note that Gamma Knife surgery does not have evidence to indicate a lower seizure risk than a formal craniotomy. If your form to the DVLA mentioned melanoma , or even meningioma, if you look at the link you are lucky!! Thanks so much. I hope you treatment continues to succeed. PeterAugust 4, 2014 at 3:15 pm #65051CraigGParticipant I’ve had 4 crainiotomies – 4 brain tumors, in Arizona. First one I lost conscientiousness – no driving for 6 weeks – honor system, but you are reported to Arizona authorities – just no revocation of license or anything
My next two seizures were years later, but since I did not lose conscientiousness I can drive, per Arizona laws.
On the other hand, I am very cautious on where I drive alone, and try to consider the risks. I am still on anti-seizure medication.
I feel pretty good and normal.
CraigAugust 4, 2014 at 5:56 pm #65052
CraigG. Thanks for input. I wonder if I should come to the USA, take a test, get a licence, then use it in the UK (allowed for a year). Just joking but it shows you how restrictive the UK system is. I does not matter if you have no seizures – the fact you have had a couple of small, treated metastases is enough for a 2 year ban , and your own GP or Neurosurgeon, however eminent, cannot overrule the DVLA. I am trying to get objective statistics to prove my risk is small. I would have thought there are papers published showing the incidence and timing of potential seizures for a couple of small, treated metastases, but I cannot yet find such papers.
I have had no side effects no seizures , no anti seizure medicine following Gamma knife last December for 10 and 6 mm lesions, followed by 4 doses of Ipi , which, so far has given me complete remission from other lesions.August 6, 2014 at 9:35 pm #65053buffcodyParticipant
In December 2012 I had SRS for two small brain metastases. In May 2013, I had a set of seizures that ended me up in the hospital overnight. At that time my license was suspended for 6 months per Michigan law because of the seizures. The cause of the seizures was not determined. Thought I started on anti-seizure medication at that time (Keppra, 1000 miligrams twice a day) as well as anti-inflammatory medication, I had another very bad set of seizures on July 31 2013. At that time, the decision was made to operate on necrosis from one of the radiated tumors, though at that time it was not definitive that was necrosis or a further development of metastasis. The necrosis was cleaned up, but the new timeline for driving was six months from the last seizure, so some time in early February. As it turned out, for various reasons, I did not return to the road until last month. It does seem that the seizures were caused by the necrosis, which in turn was a result of the SRS (pretty much identical with gamma knife). If I had been on the road when the seizures came on, it is very possible that I would have been severely injured at least and may have taken someone along with me. I was unconscious after the seizures for an extended period of time, and I had no warning. So perhaps there is some reason to the toughness of British law. Not being able to drive is not pleasant for sure as I found out in our long Michigan winter.August 10, 2014 at 2:21 am #65054PatinaParticipant Hi,
I think I found two very good references for this. There are two guides on Brain Tumors and Driving that were prepared by medical professionals for the Cancer Institute of New South Wales . One for Clinicians and one for Patients. They were found on the Neurosurgical Society of Australasia’s website and are listed below:
Brain Tumors and Driving for Clinicians
Brain Tumors and Driving for PatientsAugust 10, 2014 at 12:30 pm #65055
Patina Thanks for the references, the contents of which I will add to the dossier I am preparing for the UK DVLA in the hope of them agreeing a lower than 2 year off driving tariff, as I have had no symptoms post Gamma Knife 8 months ago. Government agencies such as the DVLA can be very obdurate as they shield behind the statement that their recommendations are based on a consensus of opinion of a panel of renowned neurosurgeons etc. The are very unwilling to look at individual risks – ludicrous in my view as the size, symptoms, treatment of mets can be so different.
Will keep this forum informed but am awaiting input from my Swedish Neurosurgeon,(Prof Lippitz) who flies to London weekly to perform Gamma Knife but who is on vacation at present.
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