Anyone have any experience with ICP bolt monitor testing?

[KerriC1]

Hi everyone. Sorry it’s been a while. Things have been hectic. I even forgot my login so if there’s duplicates I’m sorry!

Anyway I’m scheduled for surgery to have the bolt placed and my CSF pressures to be monitored in ICU for 2-3 days. If the pressure is elevated enough ( and we know they’re elevated because I have papilledema) I will get a shunt at this time

Just curious if anyone has had or heard of it

I’ve already had 2 decompressions and the high pressure has been a problem for over 2 years. Been in diamox for a year and a half

Also hope everyone is doing well

[selmaS]

Hi Kerri,
I am sorry you continue to have these issues....may I ask, do you have EDS? If so, what type of dura patch was used for both surgeries? Unfortunately I  am not experience with the bolt monitoring....but know  someone who may be able to assist you, I will see if she will pop on here to answer you. How is your vision? Please keep in touch to update on your progress.

[KerriC1]

Hi Selma. Yes I do have EDS and I had the duraplasty on both surgeries. In between the first and second surgery my patch deteriorated and stuck to my brain and the mesh plate so among other things, it was a mess in there

Unfortunately I have the bovine patch which I think is causing this issue but NS doesn’t seem to think much of it

I have seizures probably due to this pressure and started having drop attacks along with it. The vision problems I have are streaks of light and flashing lights along with blurry and dim vision. So basically, I’m a mess!

I hope you’re doing alright Selma, thank you for responding

[selmaS]

I am ok....just over tired with too much work and no help....but I will get through it...hopefully soon..lol...

So where are you located? Can you try a different Dr?.....
I had drop attacks and wound up having surgery on my right knee and ankle as a result....no fun.I also had issues with vision, which I still get from time to time but mine had nothing to do with ICP.

I pray your Drs review the bovine patch and replace it with your own tissues, I have seen others here that Drs said they would need a shunt, have the dura patch replaced and resolved their issues.

Prayers sent your way.

[soccero]

Hi @kerriC1
I have had the icp bolt done many times to measure pressure. Please ask me any questions you want. Relatively speaking, it’s a simple procedure without much pain!
Molly

[selmaS]

Thanks Molly <3

[KerriC1]

Selma I’m sorry to hear how overworked you are. Life can just be so overwhelming. I’m hoping that gets better for you soon

I’m from missouri. South of St. Louis. And believe me I’ve tried to get someone else around but no one wants to treat me since I’ve already had the surgery. What a position to be in

@soccero, thank you so much for your response. I’m just not sure what to expect from this honestly. I don’t want a shunt but I do badly want relief. I know the NS has a higher threshold for pressure shunting which is good and bad. NS says I basically shunt myself because when e pressure gets too high it forces a leak and the cycle continues.

I just don’t know exactly what to expect with results of it. And also, not to be selfish, but how much hair gets shaved?

Thank you again!

[selmaS]

KerriC
Here is a list of Drs in a neighboring state....not sure if with your INS you can travel out of state, but am adding them here is you want to check them out...this is just here for you to research the Drs as it is not meant as a referral nor an endorsement of those listed


TENNESSEE

Dr. Stephanie Einhaus
Semmes Murphy Clinic
Mephis, TN

Dr. Carl Hampf
Baptist Hospital
Nashville, Tennessee
800-668-9410
[phone]

Dr Reid Thompson
Vanderbilt Hospital
Nashville, Tennessee

Dr. Cheng
Vanderbilt Hospital
Nashville, Tennessee

Dr. Samuel Hunter
Nashville, Tennessee

University of Tennessee
Dr. William Snyder Jr, MD
Neurosurgical Associates
1932 Alcoa Hwy Suite 255
Knoxville, TN 37920
[phone] (Office)

If you have other states you would like to see names for et me know.

[KerriC1]

Thank you Selma. I travel 10 hours one way there. My NS is a chiari specialist and speaks at conferences. Also very well versed in EDS which is why I’m surprised that the patch is dismissed....

I will do some research on the dr list though. Never hurts to try

[KerriC1]

Sorry it’s been a while. Time just gets away from me.

So I had the monitor placed but my pressure was low. Very low so NS said no shunt at this time which is wonderful but also went on to say that there were obvious signs of high pressure due to a widened sclera. And the at I have an unusual situation where the choroid plexus is thin and stretchy which means that it fills with spinal fluid and causes very pressure and then sporadically releases causing very low pressure.

So no real answers except my brain is just extra wonky.

And now papilledema is back so not sure what the next step is at this point

[selmaS]

Hi,
So sorry you are having confusing complications....but that is the way Chiari works sometime., I know that doesn't help...but it is an unfortunate truth about Chiari.
May I ask, do you also have EDS, and during your PFD did you have a dura patch? If yes, what type?

[soccero]

@KerriC , I get it, it sucks. but shunts suck literally and figuratively haha as far as how much hair they shave, it is not much at all, just a little spot kind above above your ear behind your eye, if that makes any sense haha. hope that helps a bit!

[KerriC1]

That does make sense actually. Do you have a shunt currently? Things are just overwhelming me right now, so I’m sorry for all the questions! I thought I had a handle on all the info because I’ve been going through this for 10+ years and already had 2 surgeries plus other numerous tests and spinal taps and then blood patches. But this is new territory for me.

Thank you again!