My goodness, you are having quite a time.  You do so well when the shunt is working right.  The docs should do a myelogram.  It's the only way to see exactly what is happening.  I would beg and plead for one when you see the doc tomorrow.  Hope all goes well.

I'm so sorry you're struggling again! I would definitely request they test the shunt..maybe even MRI to rule out Chiari Malformation, which can form with LP Shunt. Linda's right, you seem to do so well when the shunt is working..that should tell them something! If not, request a 2nd opinion. I don't know if you have patient advocate groups over there, but you can look into them if you don't feel like you're getting anywhere with doctors.

Good Luck, and please keep us posted!

Ny neuro couldn't get through to the nuero surgery team left ots of messages.  I waited 3 hors with no reply. All she could do was book me in for an LP under x ray on Monday.  No One is happy to do a LP without the x ray because of the positioning of the shunt.  I do understand that.  She told me to go back to the A & E in the morning and refuse to leave till someone finds out what is going on.  So that's the plan tomorrow

a big lump the size of a golf ball has just came up on my back.  I think they will finally believe me that my shunt is not working when I go to A & E in the morning

I wonder if that's the site of a leak?
Good luck tomorrow.  Just wish they would fix it already!!

Oh My!!  They don't have the ability to do a myelogram??  How awful!  An lp will tell them what the pressure is at the moment it is done.  If the pressure is elevated, it won't tell them where the issue is, whether it is a blockage, the tubing kinked or failure of the valve.  If the pressure is low it won't show them where the leak is.  Maybe a trip to England is needed!!

so just back from getting my Lp.  Pressure was 7!!.  I'm so confused they have no idea what is causing the pain.  Is it possible that 7 is too low for me, maybe I don't need a shunt anymore??

Did they by any chance say what caused the lump on your back?  Might it be a leak?  7 is indeed a bit low, and since you are having headaches etc, perhaps it is low pressure.  If they would do a myelogram they would know if you do have a leak and can do a patch.
You were doing so well on your shunt when it was working properly, I think it is wishful thinking that you don't need it anymore.  It just needs to be tweaked.

Ha wishful thinking is right .  I've had low pressure before where i literally couldn't lift my head off the pillow I don't feel like that.  The headache isn't bothering me too much its the pain the back of neck and ears that are so painful

I'm waiting to get an MRI contrast of the brain and neck, hopefully won't be waiting too long.  I see my neurosurgeon on Friday so I will mention the mylegram to him and see what he says.

It does sound like your pressure is too low. I can't imagine they had your shunt set at 7, so a leak makes the most sense. I had overdraining issues for years and was still able to work because the symptoms weren't as intense as LP/epidural headache. Basically, my symptoms just got worse the longer I was up and I needed to lay down after dinner. I noticed a definite improvement at that point. I had pain in the back of my head, neck, and spine. My ears would hurt and face/hands would start to tingle if I pushed too long. Any of that sound familiar? I also developed a Chiari Malformation because of the constant pull of LP shunt, so not sure which symptoms were from overdraining and which ones were attributed to Chiari..they're also so similar it's annoying at times! The MRI should clarify things and show any leaks, so I'm glad they're doing it. Good luck, and please keep us posted!!!

Have all those symptoms.  My shunt isn't programable.  No news on MRI yet.  I will keep you updated.

Thanks

Try to rest and keep your positive attitude..definitely worth the wait for fluroscopy!

Sending you all positive, healing vibes..

Got my MRI today, hopefully won't be waiting too long on results.  Really hoping something shows up.  Pain is really bad last few days, painkillers just not working any more, not sleeping great either so I know that has me feeling worse.  Its really starting to get to me :(

I hope they are able to see something on the MRI, but I only wish you could have a myelogram to see if there is a leak.

Keeping fingers crossed for some kind of news SOON!

I'm sorry you're struggling so much! I'm sure you're trying all the tricks to take the edge off, but just remember caffeine and laying flat helps low pressure headaches. Experiment with hot and cold packs. I usually like cold on my eyes and back of my head..heat on my spine and incision sites. Since your surgery was recent, you may alternate cold and hot to keep swelling down. If laying flat doesn't help, try laying on your side between 45-60 degree angle..may be some trial and error, but you'll get some relief if find your sweet spot. I can't think of anything else right now, but I'm sure there are other ideas listed in Alternative Therapies Or IIH Helpful Coping Methods sections.

Take care of yourself!

Had my MRI on the 23rd Of Oct still no news back from nuero surgeon :(.  I'm absolutely miserable and in so much pain last few days.  His office doesn't open till Wednesday will give them a ring then.  I just don't know what to do.  I have a permanent lump on my back above my scar, headaches are sharp and my ears hurt so much.  Last night going to bed I hoped I didn't wake up today.  I'm very open with my husband and told him how I've been feeling.  It upsets him that I feel like this and he feels so helpless all he can do is  me.  Should I go to my GP and see what he can do for me or am I wasting his time?  I know my shunt is not working since the revision 8 weeks ago.  I had a working shunt for 4 months so I know its not working.

Get your GP out to you or ring the ward where you had your surgery. IF you don't get any joy go to A&E. Do this asap. I'm so sorry I didn't see this much earlier.

I agree w/ Heidi, this doesn't sound like anything that should wait. Take care, and keep us posted!

Update:  Went to my GP he sent me to a & E.  Met my neurosurgeon, he got my MRI results everything has come back normal.  He doesn't know what is causing the pain.  I asked was it possible the shunt was over draining.  He said my pressure was 7 when they done the LP a few weeks back and that this was normal.  I said I would have to disagree that I think 7 is too low for me as my pressures were always around 40 before the shunt.  He was very dismissive to me and spoke to me like I didn't have a clue, even when I asked why my back keeps swelling at the scar spot but goes back down, he just said thats normal and just fluid pockets!!.  He sent me home and will refer me back to my neurologist who is in anther hospital as there is nothing more he can do.  I went back to my GP on Thursday and he is also going to contact my neuroligist to see me.  He thinks 7 is too low for me but he said its gonna be hard to convince the neurosurgeon of this.  I'm in Dublin there is only 1 hospital that does shunts and he is the nuerosurgeon so what do I do.  I don't have another hospital or nuerosurgeon to get another opinion.  I know my GP is doing all he can for me but I'm so upset that I may just get left like this :(

You can't be left in this state of agony.  That is just not acceptable!
How far would you have to travel to find another neurosurgeon, especially one who does use adjustable valves?  Might you have to go to England?

You can't live like that and it is not acceptable for them to leave you to. I wonder if the Patient and Client Council could help you. It may be helpful to give them a ring and see if they can give you either help or advice with this. Please let us know how you get on and if they could help you.

I agree..that is completely unacceptable! I had overdraining issues for 3yrs before I found a neurosurgeon that told me opening pressures aren't valid for overdraining issues. He said that you only drain when upright, so getting LP laying down will skew the results. I know how frustrating and disheartening this can be, so hang in there! Try the Patient and Client Council to see if they can help, and keep us posted..

Thanks everyone,  Monday I rang my neuros hospital and they told me they had to wait for my referral to see me.  I wrote a letter in myself to the hospital explaining all my symptoms and would appreciate if they could see me and help me get to the bottom of it.  I only posted it yesterday and I got a call today from the neuro team, she talked to me for half and hour and listened to everything I had to say.  I have to post in my MRI scan and she will also contact the MRI clinic for the report of the MRI.  I felt she was very understanding and listened to everything I had to say and asked me lots of questions.  She has given me some hope that I will eventually get this sorted.  She said she will be in touch with next week.  Fingers crossed I can get to the bottom of this xxxx

That is great news! Sounds like your persistence has really paid off..good job!!! It definitely makes it easier to take when you can see the light at the end of the tunnel..hang in there!!!

Great news!! I'm all for taking matters into your own hands approach. You were absolutely right to, and I hope that other members take inspiration and do the same thing when necessary. Fingers crossed that things now get sorted for you, and quickly.

Finally getting to see my neurologist on Friday,  What do I need to do to get him to believe me that my shunt is overdraining and that a pressure of is too low for me.  I know I can go through all my symptoms.  I just so afraid he's not going to believe me and send me for tests to see if it it something else

 These are the symptoms I have on a daily basis and sent in my letter to him

- dragging sensation from ears to neck on both sides
- pain in both ears - feels like they are bleeding
- sharp pains in scalp & tight hair - like my hair is being plucked & sunburned type of feeling (finding the cold morning very sore)
- headaches - mostly low pressure by the evening, feels better when I lay down
- heavy head- feels like my head is really heavy and falls back, I have to pull it forward
- blurred vision in right ear - its not constant only happens a few times throughout the day ( confused about this as I always had blurred vision when my optic nerves were swollen)
- pinched nerve on right side of neck- goes from base of skull into my neck, happens a couple of times a day and last a couple of seconds.  Somedays it happens alot other days only happens a handful of times
- balance, light headedness & when walking feel like I'm walking off balance
- lump(golf ball size, soft when I touch it) appear above the scar on my back.  It is not there all the time mainly in the evenings and gone by the morning.  I did mention this Mr David O'Brien when I met him on the 11th October and my husband showed him a picture of it.  He advised that it was a fluid pocket and was normal and nothing to worry about.

I have lost 2 stone in weight since my operation on the 28th of May 2013 so this is why I think my shunt is now overdraining and I no longer need it.

Any advise would be much appreciated xxxx

I would print out articles on low pressure and low pressure symptoms, such as this one from Johns Hopkins, one of the top IIH Hospitals in the U.S.:  Johns Hopkins - low CSP

Be firm and assertive but not threatening.  Can you have a male figure come with you?  Sometimes the docs will "listen" better if they hear it validated by a male!!

None of that sounds normal! The point of having a shunt is that you don't experience any symptoms, and the fluid pocket being normal is the first I've heard, whenever I've had a fluid pocket I've been whipped off down to the theatre to have it sorted out.  The fluid pocket  could indicate that the end of the catheter in the shunt is moving about and not anchored as it should be. Your symptoms alone indicate the shunt isn't working as it should be. LP shunts are known to migrate.

I myself had an LP shunt for 5 years until it was revised to a VP shunt, at one stage I had both, but the second LP shunt caused a fluid pocket at the base of my spine which was aspirated but then led to meningitis, so it was removed. I am concerned that your Doctor is not at all concerned regarding this intermittent fluid pocket, and is quite happy to leave it, without considering the risks of doing so. I agree with Linda, take someone with you when you go, and insist that this is properly investigated. If he insists that it is normal and there is no need, demand a second opinion.