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 Titch Stent Surgery

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Titch
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PostSubject: Re: Titch Stent Surgery   Mon Apr 20, 2009 5:40 pm

Hello Everyone,

Well not sure if I should put this here but it follows on so thought it would be ok Smile I rang the Hospital this morning because its been just under three weeks since I sent the letter to the neurosurgeon to ask to be put on the list for a Stent.

I spoke to his secatary who brought my screen up & said she had the letter from my clinic appointment three weeks ago, & theres a paragrath at the bottom saying that a stent op has been offerd to me as a option that Prof P has said is viable so we are waitign for Prof H to give his opinion if its ok to go ahead.

So the secatary said that Prof H is not in the hospital today but he does his admin on Tuesdays. So all she needs is his ok verbally then she will be able to sort it all out for me. So she said she will ring me back in a few days.

Now I don't know if when she says she will sort it all out for me if that means she will give me a date for the op or if that means she will put me on the Stent waiting list.

Ive never had a op before so was wondering if you have to go in befoe the op to talk about it or wether you just get a date to have it done, I still have the neuro appointment on the 27th so can ask him some more if I haven't heard much more.
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PostSubject: Re: Titch Stent Surgery   Mon Apr 20, 2009 8:02 pm

Hi Titch (hug)

It sounds like his secretary is going to confirm that you are on the list for stenting. What usually happens it that you will be informed you're on the list for surgery, and she may even be able to tell you if there's a planned date. Then you should receive a letter with all the information etc in, and then you have what they call a pre-op assessment, where you see someone who will tell you all about the operation and examine you and do tests and things if necessary, and you sign the surgery consent form that says you have discussed the surgery etc and agree to have it. They also go through it again when you're admitted.

So when his secretary rings you back you'll be able to ask her about this process. I'll see if I can find anything about stenting for you to have a look at. Try and make a list of questions ready for her if you can, and hopefully she will be able to tell you as much as she can.

Heidi ☀
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PostSubject: Re: Titch Stent Surgery   Mon Apr 20, 2009 8:34 pm

Hello Heidi,

THANK YOU (BIG HUGS)

Thats really helped me a lot Very Happy. Yes I will try & write a few questions down to ask her for when she calls me back. I thought there must be some sort of procedure they follow.

I hope I do get a date & then I know where I stand & a date to get everything sorted for mainly my head :lol: Thank you (hugs).

Ive looked on the net but can only find Stent ops for the heart, or the knee not the head but Im guessing its because theres not been many done.

Thanks for your help ☀
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PostSubject: Re: Titch Stent Surgery   Mon Apr 20, 2009 9:07 pm

I've managed to find out for you exactly what the procedure is.
Quote :
In venous sinus stenting, a catheter is inserted into the venous sinus of the brain. Through the catheter, an expandable mesh tube, called a stent, is positioned at the site of the narrowing to improve and maintain blood flow.
I got that from NICE.org so I hope it helps as the rest of the information I found is mainly written for Neurologists and Doctors.

Your Neurosurgeon will be able to tell you so much more thoroughly, and if you can, get him to draw you a diagram while he explains it to you, so that you have a clear idea, and it will also help you to tell your family and friends when they ask. ☀


Last edited by Heidi on Mon Apr 20, 2009 9:42 pm; edited 1 time in total
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PostSubject: Re: Titch Stent Surgery   Mon Apr 20, 2009 9:30 pm

Hello Heidi,

Thanks Very Happy Big Hugs. Yes it does help. I know its going to be done trough angiograph so will only have a tiny scratch in the groin area.

Im going to tomorrow think up what questions I want to ask her when she calls me Very Happy Thanks again ☀
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PostSubject: Re: Titch Stent Surgery   Fri Apr 24, 2009 11:18 am

Hello everyone,

Well It was at the beginig of the week that I phoned the Prof's secatary & I have heard nothing back :roll: So I rang her number this morning & she aparently dosen't work on Fridays 🇳🇴

So I will add it to my list of annoying people to ring on Monday ;)
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PostSubject: Re: Titch Stent Surgery   Fri Apr 24, 2009 11:57 pm

It looks like you're going to be busy on Monday :roll: your phones going to end up moulded to your ear and hand at this rate. Fingers crossed all weekend then :suspect: lets hope it works ;)

Have a great weekend, and I should be around so if you fancy a chat in the box let me know.

☀ HUG
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PostSubject: Re: Titch Stent Surgery   Mon Apr 27, 2009 4:45 pm

Hello Everyone,

I phoned the secatary back & she said that she has spoken to Prof H & he said its ok for me to have it done. But my Nuero dosen't think I should have it done.

So She was going to talk to both Neurosurgeons Prof P & Prof H this morning after Prof Ps clinic. And she will get back to me either today or tomorrow.

Now I had a appointment today with my Neuro. So i asked him why he didn't think I should have the op. And he said that yes it would cure the high preasure, but it wouldn't cure my weekness & exhaustion. So he dosen't think its worth doing it. He said I have pap in my eyes but not bad at all its not threatening my eye sight. So he thinks its worth leaving for the time being. So he is going to speek with prof P tomorrow & have a chat as to what to do. Then someone will let me know well hopfully :lol:

So I asked him the same question that ive been asking for the last two years. Whats causing the extreem tiredness & weekness I said I thought it was cfs because it all started two years ago when I caught c-diff & three lots of flue with on week between each one.

And h said from the first time he saw m he thought it was cfs. But he found I had IIH so he got side tracked trying to sort that out with lps that didn't work :lol: So I now have a diagnosis of chronic fatuige syndrome. So thats my eigth diagnosis then :lol!:

So im guessing that he will check up on me every now & then to make sure my eyes are ok.
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PostSubject: Re: Titch Stent Surgery   Mon Apr 27, 2009 9:38 pm

It seems to be a mixed bag of news you got there Neutral. It does make sense chronic fatigue syndrome, and I was told by my own Neurologist that some IIH sufferers can end up with it, due to the punishing headaches, lack of sleep and pressure on the brain. It's great that your eyes aren't under threat (hug), and if he can do something about the chronic fatigue, then maybe you might feel some improvement. Has he given you any advice or information on it at all? I'll try and find you some info on it, so at least you'll have some information.

☀
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PostSubject: Re: Titch Stent Surgery   Tue Apr 28, 2009 9:00 am

Hello Everyone,

Well because ive been so sure I have either M.E. or CFS for such a long time I have joined a forum called FoggyFriends. Which has a lot of useful info. Thats where I found out about a wheelchair referral :lol!: .

Basicaly there isn't anything anyone can do to help. I asked about physio & he said it helps some people. But other than that its just time. Some people recover completely & some people have relapses & some people stay worse.

So the only thing they can offer is cbt therapy but as everyone knows that just teaches you to feel more optermistic about your illness & dosen't give you any more energy :roll:

They tell people who have this to do what they can when they can. Never to push yourself when its a worse day because this can lead to you having a relapse. Its the same as any illness the really :lol!: But my Neuro didn't tell me amy of this its what ive found out for myself :lol!:

Todays a worse day because Ive been worrying about everything so im shatterd. Even my voice is horse & croaky. But never mind. At some point Neuro & Prof P will talk about me & see what the want to do with me.

I really wish they would make their minds up because two are saying the op will help with tinitus, dizzy, unsteady on my feet, word finding, memory loss. And teh other one says no its cfs so ok it will take my preasure down but I won't feel any benefit from the op so as my eye sights not threatend its ok to leave it for now.

To say im confused is a understatement :lol!: . There is a website for m.e./cfs more the oficial one so I will look it up & see if I can gain anymore help or insight into it all.

Oh well I hope you are all keeping as well as you can do.
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PostSubject: Re: Titch Stent Surgery   Tue Apr 28, 2009 10:03 pm



Keep smiling and I'm thinking of you, don't let it get you down! ☀
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PostSubject: Re: Titch Stent Surgery   Wed Apr 29, 2009 9:17 am

Hello Heidi,

AWWWW thank you it made me smile. Big hugs to you :lol!:
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PostSubject: Re: Titch Stent Surgery   Mon May 11, 2009 1:02 pm

Hello Everyone,

Well its been two weeks since I went for my neuro appointment. Someone was supposed to call me to tell me what they all have decided. But Ive heard nothing.

So I phoned this morning & spoke to neurosurgeon Proff P's secatary & she said that Proff H. Proff P & Dr A are all going to sit down & talk about me & what to do this Wednesday morning at 8am so hopefully then I will have a clue whats going to happen :lol!:

I was all geared up for the op but after talking to Dr A neuro he thinks my symptoms are due to cfs & not IIH. And to be honest Im in agreement because when I was having tests Prof H asked me when I started to hear the tinitus & i said when I was 14. So he said tahts how long you have had it for then.

So why now can't I move its because ive got cfs. Anyway we will see & I guess its in the end my decision. Will up date when I know more.
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PostSubject: Re: Titch Stent Surgery   Wed May 13, 2009 11:07 am

Hello Everyone,

Well I phoned the sec & she said the meetings for the 27th of May. Now thats not what she told me on the phone on Monday. To say im cross is a understatment. Fumming comes closer.
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PostSubject: Re: Titch Stent Surgery   Wed May 13, 2009 7:26 pm

I'm glad she's given you a date, but it does sound as though there's been some moving around of appointments, this can happen due to how urgent they see the patient as being. It's happened to me a few times so I totally understand you being :x. However, if you feel like you're getting worse and can't last that long, you can go to your GP, who can then write to your Neurosurgeon, and maybe get things moving a little quicker.

(Hugs) ☀
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PostSubject: Re: Titch Stent Surgery   Wed May 27, 2009 7:44 pm

Hello Everyone,

Well the neuro surgeons & neuros got together this mornign at 8am. They all agreed that I have too much fluid in my head. They also agreed that I have soft veins in my head which are affected by the excess fluid.

If they stent me they don't know how much symptom reliefe I will get because of the other illnesses I have can cause the symptoms as well.

I don't get the headaches & my pap is not bad. So the next step is they want me to see Dr S who is a neuro eye specialist to check how bad he thinks my pap is. Then Prof P & Dr A will get together & tall about the findings of Dr S.

Then I will have a appointment to see both Prof P & Dr A to tell me what they think is the best for em. But this wont be a clinic appointment so will either be earlie mornign or evening. So I now wait for the eye appointment to come through.
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PostSubject: Re: Titch Stent Surgery   Wed Jun 17, 2009 7:52 pm

I've just been reading through this and wondered if there is any updates?

How you doing Titch? :?:
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PostSubject: Re: Titch Stent Surgery   Wed Jun 17, 2009 8:28 pm

Hello,

Well I found out yesterday that I will be seen by Dr S a neuro eye specialist on July the 15th.

Ive had the drops to dilate my eyes & had the pictures of the back of my eyes taken. What other tests could a neuro eye specialist do.

Prof Ps secatary is arranging all the neuros to get together the week after to disscuss Dr S findings then one of them will let me in on the secret lol. Stent or no stent.
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PostSubject: Re: Titch Stent Surgery   Mon Jun 22, 2009 10:47 am

Cor its one big waitting game isnt it!!!! :roll:

I had more photos taken last week, they are going to generate 3D images of the inside of my eyes. Thats pretty amazing I thought!!

I once had a test called a VER test (Visual Evoked Responce) They glue 100's wires on my head and made me stare at a checkerd screen which flashes black and white, on eye at a time. then they got some kind of print out as to what my brain interprates what my eyes see. (I dont fully understand it to be honest!)
But that was a neuro eye specialist ..... I think!! :?:
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PostSubject: Re: Titch Stent Surgery   Mon Jun 22, 2009 11:03 am

Thank you ❤
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PostSubject: Re: Titch Stent Surgery   Fri Jul 31, 2009 7:12 am

Whats the latest Titch? Have you seen the opthalmologist?
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PostSubject: Re: Titch Stent Surgery   Thu Feb 11, 2010 6:46 pm

Well yes I did go & see the eye man Very Happy

He said I had some swelling at the back of my eyes & that it wasn't effecting my eye sight. But some days I do see blured.

So he discharged me & then the nuros talked & they decided that I don't need any operation at all. So Im to go & see a top neuro in March I think.

So now they are of the opinion that my symptoms are more down to CFS rather than IIH :roll: So thats it really verry pleased im not having a op :cheers:
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PostSubject: Re: Titch Stent Surgery   Thu Feb 11, 2010 6:54 pm

What a fantastic result for you :cheers: that's really good news an I can see you're relieved. Are they even going to look at the eye blurring though, or is it just a case of different lenses in your glasses? :flower:
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PostSubject: Re: Titch Stent Surgery   Thu Feb 11, 2010 6:59 pm

I think the nuro is just going to look at my eyes himself & check on my symptoms. The real trouble is ive got so many illnesses they really don't know which symptom is coming from which illness because some of them can be the same. I guess its just wait & see & try to do as much as I can with this life ive been given
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PostSubject: Re: Titch Stent Surgery   Thu Feb 11, 2010 7:03 pm

I know exactly what you mean, I'll keep my fingers crossed for you, we can only hope for the best and take each day as it comes. ;)
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