Author Topic: VP Shunt update  (Read 2775 times)

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Offline Stacy83

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VP Shunt update
« on: February 09, 2014, 03:59:52 AM »
Everyone-

It's been awhile since I've posted on here, but I am always reading the forum as it has been such an awesome support system. It has been nearly two years since my VP shunt. I have had about four adjustments and experienced slit ventricle syndrome from over draining. Ironically we came back to the initial setting after all the drama.

I am very blessed to have a working shunt and a neurosurgeon who is a wonderful person/surgeon.

I just wanted to give some perspective to those on the fence with the surgery or who are facing it soon. It has not been easy nor is the surgery a simple recovery, but it is a choice I had to make.

My surgeon never explained the post op stomach pain due to adjusting to fluid in your abdomen or actually feeling your shunt drain daily, etc., but once again you learn to ask questions and advocate for yourself as a patient.

More than anything this experience has made me appreciate every day even more. I am a better person and I now refuse to let IIH define me. Instead, it is part of me not who I am.

The road is still bumpy with migraines, but I am using botox to take the edge off. Granted the 30+ injections are far from glamorous, but it makes life better.

I definitely do not regret the surgery, but I do worry everyday if I feel bad that something is wrong...I am hoping this fades with time. I still have thought process issues and am dealing with the after effects of the meds I took prior to the shunt. I now work part time to help life be more manageable and to provide myself with time to recover.

I am sorry for the novel, but I hope this helps at least one person in a similar situation.

If anyone needs anything or has questions about the shunt process, I never shy away from sharing my experiences.

Stacy

Offline Sandra D

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Re: VP Shunt update
« Reply #1 on: February 09, 2014, 09:19:25 AM »
 :thanks for sharing your story Stacy and for offering to share your expeience to help others   :hug
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Offline Tinkerbell

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Re: VP Shunt update
« Reply #2 on: July 21, 2014, 05:12:35 PM »
Thanks Stacey, that's really helpful to read. I had my vp shunt put in last week and have been worrying that after a few days relief my head is bad again, it's good to read the longer term perspective, helps me keep the faith!

Offline Keren

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Re: VP Shunt update
« Reply #3 on: July 21, 2014, 05:40:36 PM »
Hi Tinkerbell, this is just my opinion, i am not medical.

I do hope things settle down for you, I would try and keep a note of how you are feeling - does it feel maybe like a high pressure headache or a low pressure headache?? If you have an adjustable shunt there might be some adjustments to be made with your neurologist when you go back to see them. so it might be handy to know.

I dont have a shunt but after lumbar punctures i use laying down to tell me if its a low pressure headache or high pressure headache. if after 30 - 45 mins of laying down it feels a bit better, then feels worse on standing it may be low pressure. Alternatively if you feel worse laying down you may have a high pressure headache.
If neither really fits it could be something else. I am cautious to say migraines, as IIH is a complex situation and i know in my case we spent a long time chasing migraines when we should have been looking at IIH, however migraines can play a part in the Headache big picture to, just ensure you feel the neurologist has a rounded view.

however its early days yet - some of the other guys who have shunts might come on and give you some advice, but at only 1 week in, you probably can give things a bit more time to settle down and do any adjustments. the main thing is the pressure is coming under control, now your brain can start recovering. make sure you list all these things to talk to your neurologist about.

Good luck and Much support

Keren
 :grouphugs
Posts by members, moderators and admins are not considered medical advice and no guarantee is made against accuracy. Please see your doctor before taking advice found on the internet.

Offline andreamay

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Re: VP Shunt update
« Reply #4 on: July 22, 2014, 08:59:57 AM »
Hi Tinkerbell, I have a lumbopleural shunt and 12 stents. My shunt was fitted a year ago and was revised after 4 weeks as it detached from my lung. It is a long road and sadly my experience is long winded, I still have all of the symptoms of iih without the pressure. For me stenosis is the cause. So last week I had more stenting which has changed my headache, we hope it's permanent as it lends weight to the possibility of more surgery, bone removal and more stenting. We know that my shunt will need attention as some point because I have had pain and breathlessness since it was revised, last week a xray confirmed more fluid on my lung which means it isn't absorbing as quickly as they would like. At the moment I've chosen to proceed with caution as I want them to continue with my head surgery first. My experience is different to yours but if you are at all concerned don't be afraid to voice it, sadly I've discovered that we need to complain a lot. I've had icp monitoring, csf infusion study etc and they all came back 'normal' which is frustrating when you are in pain. Thankfully after a mdt meeting one of my doctors revisited my scans and identified the cause. I think it helps to make a pest of yourself as you name ends up on the top of the pile! Good luck xxxx I hope your shunt settles, there are many people that have great success for many years xxxx  :grouphugs
Posts by members, moderators and admins are not considered medical advice and no guarantee is made against accuracy. Please see your doctor before taking advice found on the internet.