4 replies to this topic

[Randi]

Hi everyone. I'm new to this board but I'm desperate for answers and I don't have direct access to medical care right now so I wanted to take to the internet to see if anyone has experienced what I'm experiencing now. I have spina bifida and I had a baclofen pump revision last fall to get the new version of the pump in. All was fine after that and about 2 days ago, I noticed my pump sticking out more than usual. When I went to feel my pump site, it was completely swollen and I had to try and dig to find my actual pump. The top edge of the pump is usually about 2 inches above my incision and right now, it's basically sitting right above it by centimeters. The swelling is soft and moves when I go to touch it but I've also been fighting these really bad headaches for the past 4 days and they get relieved when I lay down. I also have a VP shunt placed in my head to drain fluid from around my brain. Headaches like this are also a symptom of THAT device not working too, so I'm a little confused. Any advice as to what this could be or how to help soothe the pain until I can find help?

Edited by Randi, 10 August 2011 - 04:31 AM.

[biggdoggpa]

ummm call an ambulance and get to a hospital bro!! I would say asap!!!!

[Apparelyzed]

Hi Randi,

The symptoms you are describing are that of a CSF leak.

You need to contact the surgeon who implanted the pump, and tell him you need a CSF leak repairing.

It's a simple procedure, and doesn't take long, as long as the tubing hasn't become detached from the pump. If the tubing has become detached, you'll need an operation to re-attach it. If the leak is from your back, then they can perform a blood patch to plug the hole, which is done by injecting a few mls of blood into the area where the tubing exits your back.

Regards

Simon.

[Randi]

Thank you both for the advice and to let you know, I'm a girl. I have an appointment to get my pump looked at and to get this taken care of.

Apparelyzed, on 10 August 2011 - 09:56 AM, said:

Hi Randi,

The symptoms you are describing are that of a CSF leak.

You need to contact the surgeon who implanted the pump, and tell him you need a CSF leak repairing.

It's a simple procedure, and doesn't take long, as long as the tubing hasn't become detached from the pump. If the tubing has become detached, you'll need an operation to re-attach it. If the leak is from your back, then they can perform a blood patch to plug the hole, which is done by injecting a few mls of blood into the area where the tubing exits your back.

Regards

Simon.

[Randi]

Just wanted to give everyone a bit of an update since everything has slowed down for me lately. The pump catheter actually split in two so I had an operation to repair it. I was in and out of the hospital in about 2 days. All went smoothly and I'm going in for my follow-up appointment tomorrow! Thanks for the help, everyone!