lp shunt and incontinence xx

Member

hello everybody. first of all I hope u all had a brill new year and are all well. [You must be registered and logged in to see this image.]

im just after a bit of advise today really. as you may know ive had an lp shunt for 2 years and had none stop problems i.e. high pressure, low pressure, 6th nerve palsy, backpain ect.... I still have the same shunt as my docs refuse to take it out even tho I beg them to all the time. my pressure varies... at low its -4 > 3....... and at high its 19.5 and upwards. I don't get an inbetween so I do struggle as it varies.

my question today is.... does anybody suffer with incontinence??? im only 22 years of age and I hve a very strong pelvic floor muscle as I workout 4-5 times per week. im just soooooo unbelievably embarrassed by this and im not sure what to do. I went to see my gp about 4 weeks ago (before incontinence episodes began) with backache and to my surprise, even with clear urine results he told me I had a kidney infection[You must be registered and logged in to see this image.]

no fever, chills ect... just backache and some slight confusion.

im also experiencing extreme pain in my left buttock and hip bone, pain down back of left thigh and constant pins and needles in my calf... also on a nd off pins and needles in my left foot and toes. and bending lifting sitting ect makes this worse and it seem to be getting worse as time goes by.

please any help would be very much appreciated as im a t my wits end with this condition and after 47 admissions to hospital and still having the same problems with no help from medical professionals im trying to put off going to te docs as I don't want to be labelled a hypochondriac.

xxxxxx

Member

I should hope that your doctors are a bit more understanding than to label you a hypochondriac :roll: , but because I have also been there, done that, I get it. That being said, because you have new symptoms, a call to the docs would be in order. It sounds to me like a pinched nerve. The pain sounds like sciatica. If you are taking Diamox, pins and needles are common, but, can also be a sign of a neuropathy. Do you have a Neurologist you can speak to? Might be better than trying the GP.

Once again, a shunt without a programmable valve is so archaic. They should be outlawed. Any chance of having one installed? Having a constant ICP is sssooooo much better. If you find that you need a revision surgery, I would beg and plead to get a valve put in.

Admin1

I agree with Linda, it sounds like it could be your sciatic nerve because of the pain and pins and needles. I struggle to hold my wee at times because my sciatic nerve and lower back is damaged, so I do have the odd leakage when I laugh or cough, so if you have pinched that particular nerve it would make sense you're having problems, however, you still need your GP to check that out and treat accordingly. Here is some information about sciatica from NHS Choices, Sciatica . If anything there sounds familiar see your GP and if possible print the information off to show him. There is also some very helpful information on there that might help too.

Member

both very much, I was admitted in the end as I started getting even worse low pressure heeadaches. I had an icp bolt done again and it revealed that my pressure was at -19!!!!!!!!!!!!!!! :'( ........... I was still discharged with the same shunt in as they still refuse to move it.

when I went for my follow up apt after my discharge I found out that my surgeon had put on my medical records that my pressure was perfectly normal at +10 wich is a MASSIVE lie.... it never went higher that +2 and that was when iwas layed completely flat. so I have now complained to pals again to see what my options are as im nw being lied to.

I have extreme pain in the back of my head and neck daily and struggle with hand coordination, I also now have a pea sized lump above my lp shunt wich is causing me pain :( so along with allllll my other symtoms its fair to say that my condition is getting worse and theres nothing I can do and no one I can turn to!!!

im too scared to call my ns to see me as I now no that he has lied on my medical records and its obvious tha hes not taking me very serious at all. I just need some help!!!!! im at m wits end and ive had enough now :(

thanks for relpying xxxxxxxxxxxxxxxx

Admin2

I'm so sorry to hear it's still a struggle! I would definitely follow up with PALS and maybe ask for a referral to another surgeon. I also have an LP shunt. It's great when working well, but can cause problems if it isn't properly managed. For instance, I ended up with Chiari Malformation after my shunt over drained 3 years before I found a surgeon that listened and knew what to do. The catheter can also come undone or knot, so the lump could be fluid, tubing, or something as simple as scar tissue. It really needs to be addressed.

I know our healthcare systems are different, but maybe PALS could at least advise you on how to proceed.

Take care, and keep us posted!
Julie

lp shunt and incontinence xx

lp shunt and incontinence xx

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