Author Topic: help ! has anyone eles had jagular foramen decompression ?  (Read 16774 times)

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Offline karalouise15

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help ! has anyone eles had jagular foramen decompression ?
« on: July 06, 2014, 07:39:30 PM »
Hello everyone ! Recently iv been being passed between doctors to decide what to do and now have been told I will have a sergery called jagular foramen decompression. I'm just wondering if any one has had this and could give me some information :
How big is the cut?
How long will I be in hospital ?
And anything eles anyone can offer !
Thankyou so much !
Kara louise gannon

Offline Keren

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Re: help ! has anyone eles had jagular foramen decompression ?
« Reply #1 on: July 06, 2014, 08:49:29 PM »
Hi Karalouise,

It sounds like you have been through a lot. I hope you are holding up OK.

This is not a very common procedure for IIH. I have only been diagnosed for a year and although i have heard of the procedure I have not yet heard from anyone who has had it done. But I am by no means all knowing, hopefully someone will be able to get back to you with some personal experience, or someone who had it done for a similar condition to IIH.

I can offer some credible research papers for general information.

This paper was published by the American Journal of Neuroradiology in 2003 and it outlines the relationship of raised in general ICP to the Jugular Foramen.
http://www.ajnr.org/content/24/1/45.full.pdf

And here is an abstract that deals with hydrocephalus (another condition where the body produces too much CSF that significantly raises ICP) where a child was treated by jugular Foramen decompression. This is encouraging, hydrocephalus can be a life threatening increase in ICP, so the procedure very has good potential.
http://www.ncbi.nlm.nih.gov/pubmed/2352015?dopt=Abstract

Other then that i would suggest you take a big sheet of paper and write down all the questions you can think of and then see if there is a patient liaison service, with your hospital / doctors. or can you book an extra pre-op appointment to ask any questions you might have, if you dont find all the answers you need here.  Most places expect you to have questions and it is your right to have all your questions answered well in advance - even silly ones: will you have to shave my hair, will i still be able to wear earrings,  and not so silly ones: do you have to put a stent in? what complications can there be? will i still need IIH drugs after? does anesthetic effect IIH?

Best of luck, hope everything goes well for you!

Keren
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Offline andreamay

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Re: help ! has anyone eles had jagular foramen decompression ?
« Reply #2 on: July 07, 2014, 05:34:54 PM »
Hi there, I've been told the same. I currently have 9 stents and a lumbopleural shunt but still have all of the symptoms of iih! Recently Dr Higgins from Addenbrookes has advised me that after their last MDT meeting and after reviewing my scans again that they would like to try more stenting on the right side first and then possibly a styloidectomy and/or jugular foreamen decompression on the left. This is because I have severe stenosis on the left and the jugular is too narrow to stent because of bone in the way. The idea is that after the decompression they will be able stent the jugular to widen it and hopefully ease my headache  and other symptoms! It's a fairly new approach and as far as I'm aware Mr Axon does the decompression surgery at Addenbrookes. There is a chap on Facebook that has added photographs of his surgery that included both the decompression and styloidectomy so if you join the iih group there I'm sure he would explain his experiences. I'm going in next week to start more stenting first! Good luck Andrea :grouphugs   
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Offline jugularforamen

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Re: help ! has anyone eles had jagular foramen decompression ?
« Reply #3 on: July 10, 2014, 06:12:50 PM »
Hello karalouise15

I am looking for information about this unusual procedure since I also have a narrowing at my left Jugular Foramen and will possibly have a similar surgery. Could you please give out some more details about how this is meant to be done? You can also send me a PM if you want to exchange info privately. Best regards

Offline jugularforamen

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Re: help ! has anyone eles had jagular foramen decompression ?
« Reply #4 on: July 10, 2014, 06:20:24 PM »
And hello to you andreamay, how is everything working out for you? Have you gotten your new stentings done yet and if so when will the decompression be done?

I am very interested in this procedure since before I decide anything about myself I really want to grasp the whole picture and there is very little information to be found on the web as far as I have seen. Can you please provide the link to that particular topic on Facebook please.

Best regards and hope you get well
« Last Edit: July 10, 2014, 06:55:25 PM by Keren »

Offline andreamay

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Re: help ! has anyone eles had jagular foramen decompression ?
« Reply #5 on: July 10, 2014, 11:00:16 PM »
Hello I go in on Monday, if you join the Facebook group iih support UK and also look for iih Lucy she will point you to the person who has documented his surgery. I'm unable to post the link as it is private to the group xxx hope you are ok xxx
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Offline karalouise15

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Re: help ! has anyone eles had jagular foramen decompression ?
« Reply #6 on: July 11, 2014, 01:48:29 AM »
Hello everyone thankyou for replying! I will have a look at the group as atm i'm terrified and still very unsure on what will be happening to me! I am definitely going to try this as the bone is making the vein unable to have stents and I am willing to try anything to get a life and be like all my friends as I am 18! Dr axon told me this is fairly new and is still a trial in a way but od love to help others out in the future if it works ! I will be having stenting done 4 weeks after the decompression! If any one gets and information please do add I'd love to know more and I will try keep an update !! Thankyou everyone it's lovely to have support xxx
Kara louise gannon

Offline jugularforamen

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Re: help ! has anyone eles had jagular foramen decompression ?
« Reply #7 on: July 12, 2014, 03:08:14 PM »
Hi andreamay and karalouise

Andreamay, are you going in for the decompression of the left jugular or the stenting on the right side this time? I wish you all the luck and that you have a smooth procedure.

Karalouise, could you please wright witch hospital this Dr Axon operates at? As I wrote earlier I need to collect info to present to my doctor in order to possibly have the same procedure done. Good luck to you as well and I don't think you need to be afraid, if this procedure is what I believe then there is a good chance for you to be completely symptom free afterwards.

Best regards

Offline spikeylisa79

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Re: help ! has anyone eles had jagular foramen decompression ?
« Reply #8 on: July 12, 2014, 11:21:51 PM »
I'm also having jugular decompression or/and styliodemctoy. I've now got an appointment to see mr a. From my letters that my gp got. Looks like I could be having both side done. Firstly on my left as my worst side. Currently have 2 stents in my transverse sinus left and right. Once I seen him guess I can share more of my experience.

Offline andreamay

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Re: help ! has anyone eles had jagular foramen decompression ?
« Reply #9 on: July 13, 2014, 02:38:22 PM »
Hi there, I'm going in tomorrow for right side stenting first, but I already have 9 and they are on both sides. Dr Higgins said that he will try to do more stents on the right near the base of the skull, but there isn't much room there! I'm treated at Addenbroookes Hospital in Cambridge, all of my doctors are there, Mr Axon, Dr Higgins and Mr Garnett, they are all fabulous. Hopefully I will know more tomorrow xxx
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Offline spikeylisa79

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Offline jugularforamen

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Re: help ! has anyone eles had jagular foramen decompression ?
« Reply #11 on: July 15, 2014, 03:29:01 PM »
Thank you for the link Lisa. Do you know where your obstruction is located? Also how they decompress this?

Good luck to you Andrea, I hope the surgery went well.

Offline spikeylisa79

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Re: help ! has anyone eles had jagular foramen decompression ?
« Reply #12 on: July 15, 2014, 10:03:19 PM »
I got an appointment middle of next month.
When I know more I will share with you.
I know its a very long,  time consuming and delicate op due to lots of nerves come in this area.

Which hospital you at jagular foreman?

Offline jugularforamen

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Re: help ! has anyone eles had jagular foramen decompression ?
« Reply #13 on: July 27, 2014, 11:00:54 AM »
Lisa please do so, Im very excited to hear more about your progress and how it goes.

Offline spikeylisa79

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Re: help ! has anyone eles had jagular foramen decompression ?
« Reply #14 on: August 16, 2014, 10:51:06 PM »
I'm having my left jugular foramen decompression in next 18 wks. Ive had my pre op.
This what I learnt from my appointment.  Behind your ear you have a bump, if you feel bottom part of this and imagine going in 5cm inside your skull this is where the jugular foramen is.  When they meet this, will smooth the bone down. Can't removed it all due to nerves in this area. Hope this give bit more of insight. This is a trial still. Everything getting recorded.