So had a LP shunt in January and then three revision surgeries in February, guess my body didn't like my body.
So now that awful high pressure headache has gone and i'm not so grumpy. I can drink Coke and fizzy drinks and not have those awful pins and needles that you get with Diamoz.

However I can't stand up for long without feeling dizzy, I'm basically laying on the sofa or my bed, I wouldn't say that my head hurts, but I do have very funny sensations in particular areas of the brain. My head is very cold, and if i sleep on my back, then i will wake up with a freezing forehead, very strange

My consultant doesn't use shunts that are adjustable, he did say as a last resort he would consider using one, but has now withdrawn that offer. He is now saying my symptons don't really relate to shunt problems, but he is offering to take my shunt away. Confused!!!

So now I'm seeking a second opinion.

Does this ring any bells with anyone.

The top of my right nostril burns, and a couple of weeks ago I had clear liquid running from it. It still runs if I cry or sneeze.
My head feels cold/numb, it's always in the same place and I can't move my head quickly. Looking at a map of the brain, it's in the third ventricle area. It almost feels like it should be in a splint.doh.
Writing this, I feel really silly. Sure I should be locked up! But these are the consistent problems that I feel and that are very much real to me.

So if you can relate to anything I've said, I'd love to hear from you.

Thank you for reading my waffle.

it's nice to have a place where i can waffle... and not drive my lovely partner around the bend. Sure my dog puts her paws over her ears some days lol

Hello and a warm welcome to the group. I totally understand your concerns and confusion and you shouldn't apologise for them. I know when I had my LP shunt I did get the same feelings in my head that you had and at the time I was told it was a side effect of the shunt and they would settle down, which they did after a month.

What has your Doctor said about the clear liquid that came out of your nose? Has he considered it might be a virus or anything? Silly as it sounds I know but I myself had a period of having a liquid running out of my nose everytime I bent over, and I had headache and spells where my head felt cold, and it turned out to be flu. I'm not saying that's what it is only is it something your Doctor considered?

You mustn't feel silly about having concerns and asking about this, because this is what we are here for, and if other members have had something similar, they may have a simple and reassuring explanation. Always feel free to ask anything you want here ,no matter how silly you think it is, because it might just be something someone can put your mind at rest over.

I think you are right to seek a second opinion if you are not happy with your Doctor or feel that he is not in a position to do more than he is already. I do hope that this is sorted for you and that you have the answers you need. Please keep us updated on how you get on.

Heidi

Thanks Heidi, it's appreciated.

So my nose, to be honest that burning feeling has been going on for a couple of months. I mentioned it to my consultant but he couldn't explain it. I don't have a cold or anything, it's just strange.

Having been with a consultant that won't use shunts with valves, it was important to me to explore the possibility of that working for me, hence second opinion.

I suppose I can only explain my head as low pressure on standing.. yes will update you all.
Look forward to reading the various posts and see what info i can take from them, certainly is helpful.

Hope you're well Heidi.

Take care

Hi

My first shunt was unprogrammable it failed

my surgeon put on that had a valve it was great until it too stopped working.

it sounds like you are overdraining - like you would from a lumber puncture. it happened to me at first and did evetually settle down.

Remember you are the patient and not them it is your body you have to live with the pain - you are in your right to seek a second opinion - see you GP who can advise you on this, or if you can stand it go to A+ E, ( the A+E route will get the surgoen attention as A+E will have to talk to the surgeon if different hospitals) e.g my A+E is my local hospital but my neurosurgeon is KINGS in london.

good luck xx

Thanks for your replies. I did some research and found a second opinion. Appt is in five weeks time, so not too long a wait i guess

Guess watch this space

In the meantime Im wearing my woolly hat and sofa surfing

take care everyone ;)

Lets is know how you get on with your second opinion especially as we have the same surgeon xxxx

take care I hope that you do not get driven too insane with day time tv with all that sofa surfing

xx :shock:

So pleased you're getting a second opinion and I hope it proves fruitful. I will watch out for how it turned out. In the meantime enjoy your sofa surfing.

Heidi

Yes appointment is booked for 18th June.

In the meantime, I've become an expert on Hoarders. My dog loves her mummy being home all day lol
Thanks for this space, really does make all the difference having all the resources here and being able to share with others who have this condition.

Have a good day ladies... x

My dr mentioned I may be celiac as I've had tummy problems.

So gut gluten from my diary and feel much better, lost 6 pounds too

Yay.

Huggy, I have read that having stomach issues is not uncommon for us IH'ers. It sounds like it is working for you. And I have noticed more and more gluten-free foods available in the stores.
Congrats on the bonus of weight loss, too!

Gluten free just for a week has been amazing!

Feel so much better.

Thanks Wylee.

;) So to continue my story....

I had my second opinion yay. He agreed that I was overdraining and said that he would like MRI done. Fortunately I can have these done privately... so that was arranged few days later.
Then I waited (do a lot of waiting) and there were problems with them receiving the results blah blah then he was on holiday (how very dare he!)

So yesterday had a phone call to say, he would like me to have a Lumbar Puncture... no idea why.

that is now booked in early August,

He is on holiday the whole of August so hopefully I will get a clearer picture end of August as to the next part.

I'm SO fed up... still can't stand or sit up for very long.... so still sofa surfing, still developing hideous tv addictions... even have netflix now! oh and a new love of lego lol

guess watch this space

Thanks for the update, Huggy, Sounds like this second doctor might be better.
I would think the lp will confirm abnormal ICP. August is not far away at all.

Thanks for the update, although I'm deeply concerned about the addiction to tv, being most affeared that they may involve daytime soaps. :shock: Hopefully come August, they might have a clearer idea about what's going on and be able to do something about it. Also really pleased for you that going gluten free is making a big difference to you.

I totally understand you being fed up, it's hardly surprising given what's happening with you. I'll have my fingers crossed for you and that you can be weaned off the tv addictions before intervention is needed.

Sorry Huggy..it does seem like we hurry up and wait a lot! I actually just had my valve and catheter replaced because it was overdraining..it took me three years to find someone that agreed. Needless to say, I completely understand your frustration w/ sofa surfing and addiction to Netflix..LOL.

I do like that at least this new guy is willing to do tests to clarify the issue, but I'm concerned he's requesting a LP. The surgeons were always on board w/ overdraining and replacing my shunt until my LP results fell w/i the normal range. Finally, I got a referral to Cleveland Clinic and they told me LP results are inconclusive for overdraining issues, so they haven't used them for years. He may have other reasons for doing the LP, but I wanted you to be aware. Btw, they replaced my valve w/ something programmable in April and I've been fine..don't even miss Netflix ;)

Hopefully you'll get some answers soon. Good luck, and keep us posted!
Take care,
Julie

Hi Huggy,
Have you had that second opinion appt yet?? Has your symptoms improved any in the mean time??

Hope you are feeling better.

quick question how long after surgical consult did u have ta wait for ur op x

Hi everyone, update time.
So I'm still laying on the sofa watching crap tv. I managed to get a second opinion. He sent me for loads of tests. Everything takes sooooo long.
Rather than bore you though, I will cut to the quick.

My results show the pressures in my brain are normal. There is a area of my brain that shows inflammation and which correspondes to where i feel the pain most.
He thinks its related to my Ehlers Danlos Syndrome (did i tell you i am extra special?)

So after a lot of faffing he has decided to put a valve on my shunt to see if that will help. Surgery is scheduled 11th December.

Gosh what a year. Started with surgery in January and ending it with surgery no 5. Not sure how I feel to be honest. Willing to try anything. Its been hard trying to find out any extra info ... but i will keep you updated.

good to have somewhere to come and let off steam

as for your question sammyjo... gosh it took couple of months.. only because i kept turning up at a&e though. Guess it depends on who your consultant and hospital is.
My second opinion... that has taken a lot of chasing up... they are good and im sure im in the right hands, however its taken a lot of chasing from me. It all sits with the consultants secretary to book tests etc grrr

now going to go and read up on self adjusting valves! wish me luck!

Thanks for the update..definitely wishing you all the best!!!!

It does seem like we spend a lot of time rushed for tests and appointments, then waiting for results and actions..if you don't keep up on it, you'll never know! Personally, I had x-rays done a month ago and still waiting for results..it's very frustrating and we completely understand.

I don't know anything about Ehlers Danlos Syndrome, but I hope the adjustable shunt at least helps w/ the IIH symptoms. Take care and keep us posted!


Julie

Adding EDS to the mix sure does make life interesting! I hope the adjustable valve helps. Hang in there.

Happy Christmas everyone.

Just thought I'd give you update!
Gosh, where do I start.

So my consultant said he would try putting a valve on my existing lp shunt to see if this would help. Only a small op

Had surgery on 11th December,once they opened me up, found the shunt was broken (kind of counts for that pain i was getting in my tummy for the last week!)
They removed the whole of the shunt and put a super duper one in my chest!

Ouch.

Took couple of weeks to get over and my head was feeling much better. In fact I would go as far to say I felt normal!
Then I started getting a lump on my wound site. Slowly it has grown and my headache is coming back. So went to A & E on Christmas Eve and was told I need surgery. New shunt is broke. I managed to sweet talk them so I could come home for a couple of days.
So now I;m packing my bag and heading off tomorrow for hopefully a small tweak and the end of this saga.

Guess watch this space!

take care everyone, keep strong, smile and onwards and upwards I guess xx

This sure has been a llllooooonnnnnggggg process for you. I hope the newest upcoming tweak will do the trick and you will be able to get back to "normal." I sure am glad that this doc is using the adjustable valve. Makes fine tuning easier.

Did I miss your post? What ever became of your burning nostril? I am asking because my ex found out he was leaking CSF through his nose. He developed a hole in his sinus cavity and was leaking fluid out his nose whenever he bent over. He ended up with meningitis. Hope this has been ruled out in your case.

A dear friend of mine has IIH as well as EDS. She has the type that is destroying the connective tissue and has caused her brain to shift. She has learned her limitations but it has certainly impacted her life. It has been very hard for her to find anyone to treat it. I hope you are having better luck there across the pond.

Wishing you a successful surgery, quick healing and a much deserved break!!

You have had quite a journey..hope your latest tweak is successful!