Hi people,

I am relatively new here and I could do with some advice. This really isn't meant as a massive moan. I'm frightened and I don't know where to turn.
I posted an introduction a few weeks ago explaining my story. I have been ill most of this year and had a IIH diagnosis in June. Due to a hospital mess up they discharged me after my LP with Diamox and I have had no follow up. I ended up allergic to Diamox and because no-one would examine me I have lost a section of vision in my Right eye.
My GP has been really supportive and has hounded the hospital to see me. I took Heidi's advise and contacted PALS. They were really supportive and arranged for a Neurologist to see me. They also put me in touch with the head of complaints at the hospital.

My Neurology appointment was last week and I still cry when I think about it. He was vile. He shouted at me for complaining and said I couldn't dictate when and where I was seen. He said 33 wasn't that high and he had seen patients with pressure of 88. He wouldn't look in my eyes - in fact No-one has looked in my eyes since the before LP in June despite my frantic attempts to tell people I'm going blind. Even when I presented myself an A&E and made a nuisance of myself. I told him how bad the visual disturbances were and asked if I could see an opthalmologist and have a field test - I still have never had one.
The neurologist is now sending me to a different hospital to see a neuro-ophthalmologist instead. He said they would be able to manage my condition better. On one hand that's great - an expert. But its 30 miles away and a six month waiting list. My words to him 'I could be blind by then.' His response 'yes. I think you have unrealistic expectations of your condition.'
Worse still, I am a teacher and due to start a new school in September. They have now requested medical reports and may not employ me after all. I told the consultant these fears and he replied that most people don't work or drive with this condition anyway. I told him intended to do both.
The NHS had 25 working days to investigate my complaint. In the mean time I could lost my job and my sight. I can't drive and I'm just miserable.

Any suggestions or just knowing that other people understand might help

I am absolutely disgusted with the treatment you have received and the lack of duty of care that your Neurologist has. You have rights as an NHS patient and he has violated every single one of them. Here is the link to NHS Choices which not only tells you what your rights are as an NHS patient but also explains the complaints progess and has links to other sources you can complain to.

I would especially look at the Independent Complaints Advocacy Services (ICAS) and also the General Medical Council this is not acceptable and you cannot be left untreated and unmonitored, especially when it is putting your eyesight at risk.

He is the worst kind of Doctor and you need to put in a complaint about him and his attitude towards you, which is why I have also suggested you contact the General Medical Council.

As for his attitude people don't work with this condition, rubbish, I myself worked for the NHS for 15 years and with IIH. They gave me my medical one week after having an LP but still employed me, and when I became partially sighted through IIH, they still employed me. He should be concerned about your care and health and not be telling you that you will go blind and can't work. You would only lose your sight if they failed in their care to you, which would put them at risk of a court case for negligence.

Be strong and make a stand against this Doctor who by the sounds of his attitude should not be anywhere near a patient. Let me know if this is helpful and if there is anything more I can do to help you, because I am here for you and will do all I can.

Heidi [You must be registered and logged in to see this image.]

Thanks Heidi. I have had a letter from the hospital that mentioned ICAS. They said they will let me know the outcome of the investigation into my care and then I can appeal to ICAS if I'm still unhappy. I did phone them after the consultation and emailed then the notes I wrote as soon as I came out. They said they would add this to the complaint. I just have to wait. More waiting

I have had such a bad bad with the pain and my vision that I have organised to go private for a one off consultation. I can't afford it but I don't see what else I can do. He is beeing me in the morning - just shows how fast things move if you are willing to pay.

I have written a list of things I want to ask him as I can only afford to see him once but really I just want him to assess the papilldema and give me a realistic idea of if I am going to go blind.

Heidi, THANK YOU It means so much to know someone else thinks its shocking. The hospital seem to think I am making such a fuss. This forum has literally saved my sanity. Just being able to read how other people are doing.

I am so sorry for what has happened to you. After coming to this board, I feel fortunate that I was able to get help with my condition. Although I did suffer with extremely bad headaches for many years, it wasn't until I started having severe vision problems that I was finally diagnosed. However, there were no doctors that could treat me where I lived. I did see a neuro here that sent me for a lp, it was botched & he just tried putting me on Topomax & send me on my way. I refused it after reading about the side effects & how was it supposed to help my vision? Then I found a neuro-ophthalmologist 3 hrs away (I the 1 you see is as good as mine), he agreed with the diagnosis of IIH & put me on diamox. It made me feel terrible & my dr sent me to Vanderbilt University Medical Center (they are wonderful). My pressure was over 60 and they would not let me leave the hospital, I was admitted & scheduled for a vp shunt. Ended back up there a few months later to have it revised but it's been good since then. In the US, though, our insurance/hospital procedures are much different to your country's, unfortunately. That shouldn't matter, NO ONE deserves to be treated as you have!!

I will pray for you, as I know how it feel when the dr's don't listen & just want you out of their office. I ended up sending a letter to the neuro that I 1st went to here & told him what happened to me. It shocked me when he called me to apologize but my Mom later told me he probably did it so that I wouldn't try to sue him. Shame but she's probably right. Many of them just don't care like that should!

Best of luck to you

Hi Penny...

I really cannot offer you anything than a sympathetic "ear" and a and maybe some of my own experience.

I am really sad and disturbed , but not surprised, at your treatment. I have been treated with the same disrespect you have. It has to stop! The only thing I can think to tell you is to learn as much as you can about the disease and be assertive, even aggressive, with your doctors. BE YOUR OWN ADVOCATE. Also, demand to be treated with respect.

I told my primary care doctor last year when he wouldn't even do an LP to diagnose me, "Listen, let's get something straight...you work for ME." I have since decided never to go back to him. I know that sounds harsh but I had been told by him that it was just migraine and stress and, of course, weight. In fact, every time I went to see him (even if for the flu) he would say that I need to lose weight and stop eating so much. (I later found out from someone who worked in his clinic, that he would make fun of overweight people!)

As far as you making "such a fuss", I have found that you have to make a fuss before some of these uneducated doctors will give you the time of day. I would keep looking for the right doctor who will treat you with respect and file a complaint against this doctor, if you feel it is warranted. (That's just my humble opinion.)

Massive hugs

I'm not good at advice but I can let you know what I have had to do

For years they told me my problems was stress and mental health
Last year I was sent to Coventry hospital eye casualty. I was then past onto Neurolagists
Now I have a vp shunt and it's saved my eyes

2 things I'd do

1st find the best hospital near you and go to there eye casualty. They should help as it was them that pushed Neurolagist to get me a shunt that and that diamox didn't get my pressure under 32

2nd id go on YouTube and look for VDubsTDi and other please with IIH so you can here your not on your own

You are loved as a fellow suffer and IHaveIIH should always be here to help

Hope Ive made you feel less alone xxx hugs

A Huge to everyone. It means such a lot.

I paid to see a neurologist this morning. He says I need a MRIV - which he told me was an MRI but with some dye to look for blockages. He is arranging this back on the NHS. Has anyone else had one of these? How is it different to the normal MRI I had before?

He is also arranging a field test and said he would speed along my neuro opthalmology appointment. He said it would be ludicrous that I go blind from a perfectly treatable condition.

He did say that a shunt is my most likely treatment option as I am allergic to Diamox. He has increased the furosemide from 20mg a day to 40mg and said I can go to 80mg if I need to. He said I can increase my Topamax from 25mg a day to 50mg a day too. He reckons this will ease my suffering. He is writing to my GP to sort that out so I don't have to pay privately for the prescription.

He checked my eyes - he says I can drive and just need to be sensible. My vision still meets the driving criteria and he sees no reason for me to stay off work. I feel so much more positive. Just such a shame I had to pay for the privilege.

Thanks again everyone xx

From The Brain and Spine Foundation via Twitter:

Brain & Spine help‏@brainspine

@IHaveIIH So sorry to hear of pennyroyal's experience. Glad she has the I Have IIH community on her side. Our nurses are here too if needed.

I love happy endings!! :well done

Hope things continue to go your way.

FINALLY!!! Now, that's how a doctor is supposed to act. I'm so glad you kept pushing through until you found a doctor that would listen and advocate for you! I hope this provides you with a little peace of mind and relief from pain until your follow up appts. By the way, I've been working full time with this disease for years and my vision loss completely reversed with proper treatment..there is hope!!!

Keep us posted and take care,
Julie

Yes I've had an MRI dye, which they refer to as with contrast. They'll put a canular in your arm, and then they will either do a few scans first, then inject the dye and do some more, or inject the dye first and then do the scans. It depends what the Doctor has asked for. The dye makes all your body feel warm and tingly, and you might even have a sensation like you've wet yourself, but you don't it's just that it gives that sensation when it reaches that part of your anatomy.

It's nothing to be worried about and it's painless, the effect wears off in about 10 minutes. Anything else you want to know, just ask.