Jean - diagnosed 2010

Member

Hi this is my story
In January 2010
I went to see my GP as i was getting really bad headaches, the GP sent me to the optician, where I went the week after. At the opticians the opticians was really concerned as my sight was very poor He had a look in my eyes and ran out of the room and fetched another optician in to see my eyes, I was concerned as they did not tell me what they were looking at, Then they went out of the room and got another higher optician to have a look, I was getting really scared now as all I was hearing was papildemia (cant spell sorry), Then I was told I can go back to the waiting room as they are sending me to eye casualty to get it sorted. So off i went straight to the eye casualty, where I got my eyes checked again, The eye Dr was really concerned and admitted me straight into a ward so they can get an MRI done the next day.
The next day I had the MRI which was clear, then a Dr came and said they wanted to do a Lumber puncture to see what was going on, The Lumber puncture was great went in straight away and didn't hurt as much. My pressure was 67. After the Lumber Puncture the Dr said it could be IIH and went to phone the neurology department up at James Cook Hospital in middlesbrough as my local hospital don't have one, I was told that I would be going in 4 days time until then i was to stay in my local hospital so they can check my eyes quite regular.This then went into February

FEBRUARY

I was transferred to James cook hospital and was eventually told what IIH and what causes it, They sent me for a photo of my eyes done and an MRIV done, The photo was very concerning so I had to have another LP done as there was showing signs of bleeding on my optic nerve.This LP was very painful and ended up taking 2 drs to do it. My pressure was 68I had to keep going back to James cook twice a week for LP, then on the 26thffeb They tried a LP which was to painful for me so they decided it was an emergency LP shunt had to go in as I was on the verge of losing my sight,The surgery was book for Sunday 28thfeb.
I can remember much about the day of the surgery,
March
I was discharged from hospital the day after the surgery and told there would be no follow up. (my GP not happy with this and he is fighting 4 a follow up to be done) I have also gotten a Lump the size of a golf ball at my tummy sight which is sore and painful so my GP is trying to fight 4 me to be seen for this aswell

Thanks for reading
Jean

Admin1

Hello Missjean and welcome to our group. Your story is very similar to my own so I sympathise totally. It must have been a very upsetting experience for you, especially as everything has been done so suddenly.(HUGS) I'm shocked that you aren't being followed up, that is most definitely bad patient care so as well as your doctor sorting this out for you, it might also be worth contaction PALS, the patient service liason at the hospital you were treated at.

Now about the lump in your stomach, I wouldn't waste too much time waiting for your doctor to sort it out, instead it might be better if you went to the Emergency department at the hospital. A lump like that where the shunt is in your abdomen can signal that it has come loose, and fluid is building up there. Which if it is needs to be seen to ASAP before it causes more problems for you. I'm not trying to scare you and I do hope I'm not, but I've had it happen to me a couple of times now, so I've learnt not to hang about.

So you're options are to contact the ward you were on when you had it done directly, or go to the emergency department. This way you will be seen straightaway, and you'll have peace of mind. You don't want to leave it over the weekend.

Let us know how you get on, and you're free to email me if you like and if you're really desperate private message me and I'll give you my mobile number. Either way I'm here for you.

Heidi X

Member

Heidi wrote:: Hello Missjean and welcome to our group. Your story is very similar to my own so I sympathise totally. It must have been a very upsetting experience for you, especially as everything has been done so suddenly.(HUGS) I'm shocked that you aren't being followed up, that is most definitely bad patient care so as well as your doctor sorting this out for you, it might also be worth contaction PALS, the patient service liason at the hospital you were treated at.

Now about the lump in your stomach, I wouldn't waste too much time waiting for your doctor to sort it out, instead it might be better if you went to the Emergency department at the hospital. A lump like that where the shunt is in your abdomen can signal that it has come loose, and fluid is building up there. Which if it is needs to be seen to ASAP before it causes more problems for you. I'm not trying to scare you and I do hope I'm not, but I've had it happen to me a couple of times now, so I've learnt not to hang about.

So you're options are to contact the ward you were on when you had it done directly, or go to the emergency department. This way you will be seen straightaway, and you'll have peace of mind. You don't want to leave it over the weekend.

Let us know how you get on, and you're free to email me if you like and if you're really desperate private message me and I'll give you my mobile number. Either way I'm here for you.

Heidi X

Hi thanks for the quick reply. I was at the emergency department yesterday and the neurosurgeon wanted an x-ray that my local hospital can not do, Its quite a while to get to the hospital where I was treated and my partner and I dont drive and plus I cant walk far with the lump its just getting me down now as I thought the shunt would make me better but as I see it it is making me worse.
Jean

Admin1

I know how disheartening it is when you think the shunt will do it's job and let you get on with your life. Unfortunately it doesn't necessarily work out that way. Neither me nor my husband drive so I do appreciate it's made it more difficult, but there is a way around it as we found. Your doctor can order you a medicar to take both you and your husband to hospital, if you explain to him it's difficult for you to get there, and you don't feel confident or well enough getting a bus.

Here is the link to information about Transport to Hospital http://www.dh.gov.uk/assetRoot/04/07/80/85/04078085.pdf

If the lumps getting worse you really need to be seen by the hospital, if it's painful and getting bigger, then your best bet is to phone for an ambulance, or ring for an emergency doctor to come out an see you, then when he says you need to go to hospital ask him to arrange transport for you.

I hope this is of some help to you, and let me know how it goes.

HUGS Heidi

Member

UPDATE

HI
I have been back in hospital today to make sure the PL shunt was working fine and the consultant seems to think it is starting to work but says its early days yet and is still concerned about it as he also done a LP and my pressure was 53 it has came down from 68 in 3 weeks. I still have to carry on taking my topamax and i have to go back in next week to see improvement,

Guest

Hello jean

I read through your IIH story and I guess you suffered a lot, though your CSF pressure is still high but hopefully it will progressively decrease in the next few days. You're included in my prayers too. I wish you a good result in your doctor's visit next week.

I wonder if you noticed any improvement in your vision after the shunt.

Keep us posted.

Saleh

Admin1

I'm so pleased you're back on the road to recovery Jean. Hopefully now things will get back on track!

Fingers crossed for you hug

Jean - diagnosed 2010

Jean - diagnosed 2010

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