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To wait two more months for neurology appt for focal lobular cystic lesion on top of spine/base of brain?

(16 Posts)
RiverStyx Tue 05-Dec-17 22:48:09

Am a regular but changed my name because this feels private.

In September I was referred by the orthopaedic team for an MRI on my exceptionally stiff lower back and they got my neck MRIed too as not much movement there either. MRI mid-October, which seemed impressively fast (yay NHS). I was phoned by that team to say they were referring to orthopaedics for a bulging disc in my lumbar spine and to neurology for a focal lobular cystic lesion at the top of my spine/base of my brain.

Obviously, I was not thrilled with this news. Googled focal lobular cystic lesion briefly, saw the word tumour a lot and backed away from the computer sharpish. I told myself that I wasn't going to worry unless they saw it as urgent enough to get me an appointment quickly.

I got the referral letter through from orthopaedics within a week or so and booked my appointment in nifty online system for only a couple of weeks later (yay NHS!).

That appointment was today. Before we even talked about the orthopaedics stuff the doctor sat me down and quizzed me about whether I was chasing my neurology referral. He was very insistent that I needed to make sure I was seen quickly. I wish I had realised at the time that he had just been looking at my MRIs and quizzed him, but that didn't occur to me until later...

I did a bit of a chase around the hospital and finally found someone who was able to tell me that my referral was definitely in the system as urgent and an appointment letter hadn't been lost in the post because there were simply no available appointments so they haven't been able to allocate me one yet (booo systematic destruction of NHS!).

My question is simply this - am I being unreasonable to wait? A friend suggested I contact the consultant's secretary and ask for a cancellation appointment. Phoning to request this and explaining that another specialist within the hospital had seen my MRI and pushed me to push has secured me the first available appointment. At the end of January. A cancellation appointment might come up sooner, or it might not.

I don't know whether I should pay to see a consultant privately more quickly, knowing that I probably can't afford to pay for another MRI or a biopsy privately. I'm a single parent, two young teens who worship me, one of whom is properly phobic about death/secret illness...

CotswoldStrife Tue 05-Dec-17 22:52:05

Neurologists used to be in short supply when I saw one in the mid-noughties. It may be the same now, just not enough to go round sad

I hope you manage to get something sorted OP. If you can get hold of the images from your MRI then you may not need another one but I don't know if that's possible with the NHS.

flissfloss65 Tue 05-Dec-17 22:54:29

Really worth phoning Consultant's secretary to chase up the appointment. They are normally very helpful.

Say you are willing to take any appointment/cancellation.

RiverStyx Tue 05-Dec-17 23:02:08

The orthopaedics team member who referred me said likely to need another MRI as the cystic lesion was just on the edge of it.

I tried talking to the secretary but she doesn't seem to pick up her phone. I followed the instructions on her voicemail and phoned via switchboard to speak to someone else in the team. That person told me off because she had already been chased by someone else about me today and because I should have just left a voicemail for the secretary. I said in a very small voice that I was panicking a bit about the cyst on my brain and had just wanted to speak to somebody to be certain they knew:

1) that I'll go anywhere within the trust to be seen sooner
2) that I'll take a cancellation even at very short notice
3) (and I was so flummoxed by her tone that I didn't manage to say this and had to leave a voicemail later) that they need to use my mobile number, never the landline.

GrockleBocs Tue 05-Dec-17 23:05:05

The trust I'm with routinely send out a letter when a referral is received in some departments to warn of long waiting times. Neurology is one of those departments.

Daisymay2 Tue 05-Dec-17 23:05:05

My husband waited 4 months for a neuro appintment having been referred by a Consultant Cardiologist. Wasn't allowed to drive in the interim, Neurologist said he was OK to drive immediately.
Since then all follow ups have been a result of him chasing the secretary despite Consultant saying he needs 3 monthly appointment. Hospital are bringing in a Locum Consultant from a teaching hospital to support the local consultant as well.
I would raise with PALS and also try to speak to the Consultant's secretary. Raise with MP , Chief Exec as lack of Consultant availabilty is having severe delays.
Is there anywhere else within close distance you could be referred to?
Good luck.

Janettaw Tue 05-Dec-17 23:12:41

I second speaking to PALS - they are very helpful and understand how stressful it is waiting to hear about appointments and feeling "lost" in the system.

Sometimes when you get an initial appointment your referral letter will be triaged and your appointment can be moved to an earlier slot. Both of my DCs have had this happen to them - not sure how it is for adults but at least PALS will be able to explain the system to you.

RiverStyx Wed 06-Dec-17 10:08:49

Thanks. I don't want to complain, I just feel very worried about the whole thing and not sure whether I'm doing myself and my kids a disservice but not scraping together the money to do as much of this privately/quickly as I can.

I could afford an initial private consultation to be seen quicker and set my mind at ease, but if the news isn't good I suspect tests and treatment would rapidly get up to figures I can't afford.

roobrr Wed 06-Dec-17 10:16:57

Oh OP bless you, I know how you feel.

I had to wait 3 months to see a neurologist after a very serious hospital admission, all I did was worry the entire time.

If you are on a cancellation list that's great, and in my panic calling, I was told the neurologist looks over the MRI results as soon as they get them, if they feel you need to be seen urgently, they will get you in.

RiverStyx Wed 06-Dec-17 11:00:06

I was told the neurologist looks over the MRI results as soon as they get them, if they feel you need to be seen urgently, they will get you in.

Thanks, that helps enormously. Hope it's the same in my trust!

Neoflex Wed 06-Dec-17 11:09:30

Pay private. There's nothing more you need for Christmas than good health and peace of mind. No money would be better spent on you or your family.
My gran had a patch of skin cancer on her outer ear. The appointment to remove it kept getting rescheduled, again and again. She wasn't high priority.
Anyway she just got fed up of being messed around as it was causing anxiety and stress. She paid to have it removed privately and they gave her an appointment straight away.
They found the cancer was making its way internally and down her ear canal.

roobrr Wed 06-Dec-17 12:01:07

If you are feeling very anxious it's always worth giving them a call to check up on that, the receptionists are all aware of practice like this where we are, so knowing that would give you some peace of mind, I'm sure smile

ElphabaTheGreen Wed 06-Dec-17 12:33:33

I'm a clinician in neurosciences.

I was told the neurologist looks over the MRI results as soon as they get them, if they feel you need to be seen urgently, they will get you in.

☝️ This. I would take with a grain of salt an orthopaedic doctor telling you you need to be seen urgently - bones are their department, not nervous systems!

Cysts are rarely anything to be worried about, OP, so step away from Dr Google. They're not tumours and they're rarely operated on unless they're in a risky area. Even if they are in a risky area, they don't tend to grow much, if at all, so there's no need to rush in and get them out unless you're highly symptomatic, which you're clearly not. The fact that you've been referred to a neurologist rather than to a neurosurgeon directly tells me they're not excessively concerned.

Don't go private - they'd probably only refer you back into the NHS anyway. Keep chasing the neurologist's secretary as you have been for a cancellation, though. The NHS does respond to squeaky wheels.

RiverStyx Wed 06-Dec-17 12:40:59

@Elphaba - thank you!! Just exactly what I needed to hear.

RiverStyx Wed 31-Jan-18 15:43:18

Saw the neurologist today. I've been referred for another MRI, this time centred on my brain. Said from what she can see it's likely to be either at the back of my nose or on my pituitary gland. Based on results she'll decide whether to refer to ENT or neurosurgery... Can't tell whether likely to be cancerous or not at this stage. She said sometimes people are born with these things but it wasn't on a scan I had in 1998 so it's appeared at some point since then.

It looked quite big, too. Bigger than the previously-diagnosed lipoma I could see on the scan and can feel in my double chin.

RiverStyx Wed 31-Jan-18 15:44:16

She was also rather taken aback that nobody had organised the MRI for me yet, which was not reassuring.

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