Pseudotumor Cerebri Support Group

Pseudotumor cerebri (PTC) is a neurological disorder that is characterized by increased intracranial pressure, in the absence of a tumor or other diseases affecting the brain or its lining. Diagnosis requires brain scans and lumbar puncture. Characteristic symptoms are headache, transient visual obscurations or transient visual loss in one or both eyes usually lasting...

761 Members

8,021 Posts

0 Online

greenbayfan1 07/01/2014

So, finally, I saw my NS today to go over my test results and he said they were within normal results. Then, he went to get that Medtronic valve tool to check my lp shunt setting and both, the manual and electronic wouldn't work on my shunt and the setting g wouldn't chang. Initially, he mentioned my shunt may be defective and that it would require surgery. His office called me back and said that my doc spoke to the rep for the shunts and said that he was going to try and get his hands on a magnetic device to see if it's debris that is causing it not to work?? Anyone hear of this gadget?? I have to wait for Thursday to find ou. Ugh1

aimhigh4once 07/02/2014

Hi Greenbay fan :D Sorry you are going through all of this....I have not heard of this device. I am hoping one of the nurses have and will reply. I have only heard of a magnet to deactivate a pacemaker (I'm medical too but work cardiac/pulmonary) I hope you start feeling better soon. blessings, Aim

PressureCooker 07/02/2014

Hi Greenbay: Am glad you got into see your NS (finally!) So, Medtronic adjustable shunts only use the StrataVarius Adjustment System for LP & VP adjustable shunts. http://manuals.medtronic.com/wcm/groups/mdtcom_sg/@emanuals/@era/@st/documents/documents/contrib_150002.pdf

It could be, as your NS suggested, that the valve on your LP is broken (stuck). However, it sounds like he might be having Medtronic send over another StrataVarius to confirm whether or not the problem lies with the adjustment device or the shunt valve.

I've had this happen where my old NS's StrataVarius' batteries died and they didn't properly store the device, thereby compromising its function.

So, your shuntgram showed that your shunt is working correctly?

greenbayfan1 07/03/2014

I saw my NS today, along with the Medtronic rep. The magnet they used was HEAVY!! Both the doc, and the rep tried moving my shunt and at first, it didn't budge. Then the rep had an idea as to if the shunt valve may be tilted off to the side and that's why they couldn't move it. Low and behold, he was right about that and got it moved to a "2" setting. After surgery, he had it set at 1 and then when I was having headaches, he changed it to 1.5 and for some reason, it moved to "2.5" on its own. Anyways, he has it reset on "2" and said to check back in with him next Tuesday and let him know how I'm feeling. I can tell you, after my adjustment, that my head feels like a bobble head and I'm still having blurred vision. How long does it usually take for it to start working better with the new adjustment? With him setting it at a "2", does that mean it's set to drain more? So, basically, he is doing a "wait and see" approach and if the different settings don't work, he will do surgery.

Thoughts??

1greenmnm 07/03/2014

In my experience it took a week after each adjustment to notice a change. (I have a strata VP shunt). It may take longer, depending on the person. If you are not noticing any change between adjustments, I would say your shunt is kinked, has scar tissue compressing it, or defective. I have had experience with my shunt not working due to a kink and scar tissue.
Best of luck!
Mal

PressureCooker 07/04/2014

Hi Greenbay: good thing Medtronic rep was there!

So look on page 4 of this doc: http://manuals.medtronic.com/wcm/groups/mdtcom_sg/@emanuals/@era/@st/documents/documents/contrib_150010.pdf

Diagram 4 lists the estimated pressure ranges for each setting. It shows that a setting of 1 equals a range of 64-303 mmH20; setting 2 equals 174-413 mmH20.

So your NS has set the shunt to drain less than when he placed it originally, but more than when the shunt self-adjusted to the 2.5 setting.

Does he think you were having low-pressure symptoms/over-draining when you were having headaches after the surgery?

greenbayfan1 07/05/2014

Thanks everyone! I'm still experiencing some blurred vision up close and I just had my eyes checked in May and I had 20/20 vision at that time. After my surgery, he had it set at 1, but he believes the headaches were due to low pressure. He then changed it to 1.5, but I don't understand why he would move it to a 2 setting when I'm having signs that it isn't working and why the valve moved to 2.5 on its own??

He said if he had to replace it with a new shunt valve, he said it would take about 15 minutes and would be outpatient. Has anyone had this done?

Thanks again!!

PressureCooker 07/05/2014

Greenbay: Yes I've had a valve replacement, for a VP shunt tho. Don't know if that is different significantly from an LP valve replace. Mine was inpatient and surgery took a couple of hours total.

As to his setting at 2.0, maybe he wants to increase your drainage slowly from the 2.5 setting. I.e., indeed he may have plans to set it at 1.5 again depending on your symptoms' response.

As for shunt valves resetting themselves, it does happen sometimes. There are magnetic fields everywhere and if strong enough, they can reset a shunt valve. Every time you have an MRI, your NS must check your shunt valve setting, etc.

HHugel 07/13/2014

When they adjusted your lp shunt did they do it under fluoroscopy? I have to meet my NS at the radiology lab for my lp shunt adjustments so it can be adjusted under fluoroscopy but my vp shunt he does in his office. Just curious...

greenbayfan1 07/16/2014

I have my lp shunt adjusted in the office.

Join the Conversation