Driving after olfactory neuroblastoma

Hi ReetsV sorry to hear about your son and DVLA. I think DVLA are being ultra cautious with everyone at the moment with all that stuff happening with the Bin lorry driver in Glasgow a few years ago. If I remember rightly they were a bit lax with their procedures (I might be wrong on that one) and since then have tightened up majorly. 

I dont know enough about it to be of much help but I wonder if someone at Macmillan could advise if you wanted to give them a call on Tuesday as this is a bank holiday weekend they may know of some way to overcome this or what to do  but I dont know that for sure. Worth a try though. 08088080000

Hope you mange to get some positive outcome for your son.

Sending very best wishes meantime. xxxxx

Hi ReetsV

i am glad that your son has recovered and is well enough to want to start driving. It will be great for him.

I had Olfactory neuroblastoma diagnosed 8 years ago when I was 50 and have never heard of the possibility of seizures mentioned by any of my Drs. I was driving 6 weeks after my surgery and during my Radiotherapy and my Drs knew this. This sounds like a jobsworth who knows nothing about ON, as it’s so rare, and has just made a judgement erring on the side of caution but based on guesswork! 

i was in hospital with someone who wasn’t allowed to drive for 2 years but she had a non malignant brain tumour and had seizures prior to diagnosis. This is the first I have heard it mentioned with someone who has ON.

I would go ahead and challenge it and your son’s Drs will support him because this is not a side effect of ON and as you say he has wasted enough time on this disease.

Good luck with your appeal and best wishes to your son.

fiona 

This sounds like a mistake.

The risk of seizures should only be a concern if there was intracranial extension and a craniofacial resection was required to remove the tumour - which sounds not to be the case with your son - please correct me if I'm wrong in my assumption. Any form of brain tumour or brain surgery carries a risk of seizures.

I had to surrender my licence for 12 months; not because of seizures, but due to the craniofacial resection. I wasn't told this by a doctor, but as I am a nurse with current neurosurgical experience, I knew that this would be the case.

I am now almost 14 months post-treatment for Stage 4 olfactory neuroblastoma (chemotherapy, surgery, radiotherapy - in that order) but with NO postoperative complications. I still have some post-radiotherapy issues, but these are mild, slowly improving, and certainly would NOT stop me from obtaining a driving licence.

My surgery was in May 2017, I reapplied for my licence in June 2018. I last heard from the DVLA at the beginning of August (they do tend to be slow), and their letter stated that they need to write to my GP. I am still waiting for an update. However, I have had NO seizures at any point (or indeed any other neurological sequelae) and I have had several letters to answer from the DVLA since June - none of the replies have suggested that I will not be able to have my licence renewed. In fact, the most recent one implied that, if I met a list of conditions, I could continue to drive until a final decision is made.

There are a list of complications of brain surgery, including seizures, which would lead the DVLA to deny a licence application. However, in the case of seizures, a licence may be considered if the patient is free of seizures for 12 months (only for private vehicles - the period is much longer for PSV/HGV vehicles).

if there's anything else you need to know, please ask.

Hi Northmanc. Thank you for the reply. That’s really interesting. I too am a nurse and so ‘ticked the box’ on the application form, although he didn’t fit any of the categories as such. However, I knew the implications of not doing so.

My son did have a craniofacial resection and endoscopic resection to remove the tumour. This was July 17. None of his doctors had ever mentioned risk of seizures. I was amazed to read this in the DVLA letter. 

Its really hard to contact them though. I feel that they have chosen a reason as they are unsure. Which is really frustrating. I have complained to no avail.

our GP has spoken to the DVLA who say they will reopen case with more info, and that the time period is 2 years from surgery. 

My son is monitored so closely with MRI’s, CT’s, psychology and cognitive testing. He has returned to normal activity. He’s currently away with Army cadets and will be shooting guns (blanks under supervision I hasten to add). 

I received a copy of his consultants most recent letter to the DVLA this week. They now tell me this has to go back into the que to be considered. The que took 4 months last time! 

It is his provisional and we are intending his lessons to be with a fully qualified instructor which should therefore make him safer for a while. We would be happy with a license with restrictions such as instructor only and no driving alone until 2 years post op but apparently they won’t do that.

ive argued the 2 years post seizure part as if he was epileptic it would be 1 year post seizure. I’ve looked at the DVLA advise book for medical practitioners and most conditions say 1 year unless symptomatic.

i appreciate this condition is so rare but they have obviously reviewed this for other people you would expect them to have a database now. Frustrating isn’t the word. He just wants to be ‘like his mates’. Cancer robbed him of that last year and he’s ready to move on. It seems every corner we turn there is another obstacle. He’s never given up, fought really hard and been really positive. I hope that he continues in the face of this adversity.

i hope that your recovery continues and your license returned soon.

Reetsv

Thank you - I wish you both all the best as well.

I'm still not sure why they are stating two years post-treatment, when their own website implies that twelve months would be enough in the absence of symptoms.

I suspect that it's probably because your son doesn't have a licence yet, and they are being more cautious in his case, e.g., they may feel that there's no point in issuing a first licence if it may be revoked soon after due to seizures or other notifiable symptoms

If they are going to be looking at two years in my case, then it's going to be May 2019 before I can drive again.

Either way, if I was in your situation, I'd definitely consider appealing against the decision, if it proves to be final.

Hi Northmanc. Thank you for the reply. That’s really interesting. I too am a nurse and so ‘ticked the box’ on the application form, although he didn’t fit any of the categories as such. However, I knew the implications of not doing so.

My son did have a craniofacial resection and endoscopic resection to remove the tumour. This was July 17. None of his doctors had ever mentioned risk of seizures. I was amazed to read this in the DVLA letter. 

Its really hard to contact them though. I feel that they have chosen a reason as they are unsure. Which is really frustrating. I have complained to no avail.

our GP has spoken to the DVLA who say they will reopen case with more info, and that the time period is 2 years from surgery. 

My son is monitored so closely with MRI’s, CT’s, psychology and cognitive testing. He has returned to normal activity. He’s currently away with Army cadets and will be shooting guns (blanks under supervision I hasten to add). 

I received a copy of his consultants most recent letter to the DVLA this week. They now tell me this has to go back into the que to be considered. The que took 4 months last time! 

It is his provisional and we are intending his lessons to be with a fully qualified instructor which should therefore make him safer for a while. We would be happy with a license with restrictions such as instructor only and no driving alone until 2 years post op but apparently they won’t do that.

ive argued the 2 years post seizure part as if he was epileptic it would be 1 year post seizure. I’ve looked at the DVLA advise book for medical practitioners and most conditions say 1 year unless symptomatic.

i appreciate this condition is so rare but they have obviously reviewed this for other people you would expect them to have a database now. Frustrating isn’t the word. He just wants to be ‘like his mates’. Cancer robbed him of that last year and he’s ready to move on. It seems every corner we turn there is another obstacle. He’s never given up, fought really hard and been really positive. I hope that he continues in the face of this adversity.

i hope that your recovery continues and your license returned soon.

Reetsv

Update time: I've now received my licence, at last - almost exactly 18 months after my surgery.

The whole application process has taken just under six months.

I've lost a few entitlements (I can no longer hire a vehicle large enough to move house by myself, for example) and the licence is only valid for 12 months.

I've spoken to an insurer today - assuming I can get my 8 years of NCD accepted, my annual fee will be similar to my 2016-2017 insurance, despite the time off the road. I asked them if they needed to know my exact condition, but they said no, as they could see my restrictions/licence details from the online answers.

So that's mostly good news.

It is a little frustrating that it's taken so long, though - drunk drivers are punished for a shorter time than cancer patients, it appears. But that's the kind of country we live in, I suppose - where violent prisoners are "entitled" to three meals a day, while law-abiding Granny starves in a nursing home! But that's ok, because she is too weak to riot </sarcasm> ;)

But that's another thread altogether, so I shall leave my soapbox now ;)

Hi northmanc, Great to hear you can get back behind the wheel, . All the best ,safe motoring

                                    Chris .

Hey Northmanc

Thats great news. We are still battling on! The latest letter from the DVLA states that they consider ON as 'infratentorial WHO grade III or IV glioma' and he now cannot be considered for a license until October 2019. With each contact with the DVLA it seems to get worse!

My sons oncologist has confirmed that ON should not be classifies as above but has its own WHO classification. E-mailed across to the DVLA today.

I am just about to start my email on the next step of the complaints procedure to the DVLA. I wonder what will happen next? I am concerned about escalating this again as I feel my son is being penalised by my continued challenges. It may well take two years to resolve in the long term but I hope will have some benefit for others in the future.

In the meantime we have sourced him some 'off road' lessons so that he can at least get a head start before the license arrives. 

I think that your comment re drink drivers is interesting. I wonder what the stats are for re-offending? I sincerely hope that my son isn't going to re-offend with his ON! He continues to do really well and is pursuing normal activities which over the summer have included kayaking the Ardeche for his Gold DofE. He is now thinking of his career choices for next year. one of which is joining the police or army. Not sure how the driving license situation will impact on this!

Wishing you continuing good health and happy driving.

ReetsV

Whoever has made this decision appears to have little understanding of the difference between nasopharyngeal and intracranial tumours; I find it hard to believe that a decision such as this has been made by a qualified medical practitioner.

As your oncologist has stated, ON has a completely different classification - the possibility of intracranial extension does NOT make it a brain tumour!

The person who made this decision also needs to look up the location of "infratentorial" as well - they may be surprised to find where in the body that actually refers to (clue: quite a way from the nose ;) ).

This almost reads like the assessments are made by non-medical decision-makers - it's not my place to suggest that this does happen, but this decision seems incorrect on so many levels, so who knows?

The following links help to explain the differences, and may even help you to argue your case further - although why they would ignore the advice of an oncologist is beyond me. Perhaps a letter from the neurosurgeon would also be useful?

I use the site below a lot, at work and at home, as I frequently deal with patients who have spinal/brain tumours (and occasionally tumours which require combined ENT/neurosurgical procedures, such as ON):

www.orpha.net/.../Disease_Search.php

https://www.orpha.net/consor/cgi-bin/Disease_Classif.php?lng=EN&data_id=202&PatId=18203&search=Disease_Classif_Simple&new=1

Good luck to you both.