Hi kphilips. No, sorry, I dont think this is right. Do you feel like it could be a collection of csf?
I know MandyRea and a few more had this problem. And, I think it involved some small surgery.
Maybe I should wait for the experts to have their say!
But, get prepared, I dont htink it is good news. Sorry! Cath.

I had a lump right on my spine after my first shunt (which had a HV valve and was bigger), but not after my second shunt. I kept asking the doctors about it and they said it was just the shunt sitting on top of the spine. I think it depends on the type of shunt, but I would get it checked out just to be sure.

After my daughter had her lp shunt about 2 weeks post op she suddenly developed a lump. It was a pseudomeningocele, basically csf was channeling out along side the tubing creating a "cyst" type effect. PLEASE have this evaluated ASAP, my daughter developed Chiari from the over-drainage it caused.

OMG no it's probley called a pseudomeningocele. It's a collection of spinal fluid. I have on i have had for almost a year. I have had 3 surgerys on it and it didn't get any better. If the doctor tells you that he can fix it tell him yeah you can take it out. This thing sucks it swell's up and is very hard on your back please keep us posted.

Love and hugs
MandyRee

I sure will keep u guys posted..my appt is on the 2nd so I have to wait till then..I have a huge feeling that my doctor is going to say..everything is fine ughh let's wait n see

If he does say that tell him you know that something isn't fine. Trust what you feel. Thats your body and you know how you feel. Please remember that you know what's best for your body NOT THE DOCTOR he may knnow the meds but you know what you feel.

MandyRee

Oh, wow! Good luck with this! It definitely sounds like something you need to talk to your doctor about. Never let the doctor sell you short! Let us know how this goes after your appointment.

They can see on an MRI if there is a leak, or a bit more painful they can aspirate it and check to see if it is truly csf. If you start to experience low pressure headaches or pain relieved by lying down DO NOT wait until the 2nd to see your doctor, get in ASAP. My daughters doc tried to tell us everything was fine too, that the pseudomeningocele would self seal...wrong!

Fancy if i may ask how long was it before your daughter was diagnosed with a chiari ?

I have a huge knot, it is my valve. I asked my doctor and he checked it (checks it everytime) and told me to feel it. He sort of guided my hand to show me where the tube runs out of it and around my side. He said that if I ever feel its getting better, gets softer than normal or I can't feel the tube to the side to call him immediately.

I developed a pseudomeningocele 2 weeks ago under my tummy incision where the tube had pulled out and was depositing CSF just under the surface. It was about the size of a grapefruit and started to really hurt. I had emergency surgery to fix it last week and was told to keep a close eye that it didn't happen again. Reason being, he said it can cause an infection. I had strict instructions that if I ever ever get a temp over 101.5 or another lump to get to the emergency room of the hospital where he practices. Best to be sure and get it checked out, I hope its okay.

I also had a lump on the spine incision. my lp shunt was clogged at the spine.

You guys, this is just ridiculous! I have never heard of such incompetence in my life. I am so angry for you all.
What in the hell do the expect you to do about it? They keep telling you it is " normal" , then duck back again, change their minds. They remember , and not for the first time, of politicians!

Could you all get together, put all your symptoms in a list. and tidy it up, print and then THROW it at the NS!

From the little I know, having csf freely floating around the body is not good. And, one dr mentioned infection! Are you kidding me?This is not like an infection like a cold. This is serious sh*t.
Come on girls, time to fight back.
This is unacceptable behavior or treatment.
You have all been thru enough to put about with this treatment. Demand to know,
Why has it happened.
How to treat it?
How can you avoid it? Do you think the shunt should be removed?
Pros and cons please, seeing as you were not warned of this in the first place.
Long term effects? When, is the cut off point for safely removing the shunt?

We have to stop this practise, of the drs making us feel like it is our fault. I am growing weary of this attitude, of blaming the patient..
When are they going to take responsibility?
With a big sigh, Cath.

I hear you Cath, I was surprised at everyone's comments especially after my surgeon made a big deal about it. In fact, he had called in some general surgeons to help be sure it was attached correctly in my abdominal wall. Right before the surgery a resident was pushing really hard on my lump and he yelled at her that he was trying to keep it contained to one area so he could suction it all off.

What happened to me, he says is very rare especially for adults. So he attached it this time the way he does in children.

I am so blessed to have such a great team of doctors that work together in my care. It angers me some of the stories I hear.