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 starting the process to have a shunt installed

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Wylee
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PostSubject: starting the process to have a shunt installed   Thu Sep 15, 2011 10:41 pm

starting the process to have a shunt installed

Well, seems all my options are used up, except for the one I have been avoiding. I have agreed to go ahead and try for a shunt. Have to wait and see what the insurance company says. They may have the final say as to whether it will be a lp or vp shunt, or if they will even go for EITHER of them. The way they balked at the lumbar drain test I suspect a fight with them. But that will be the task of the Docs, not me. We'll see how long it takes to get this together. My sister, who will drive me and be with me for moral support, and I have cleared our calenders for the first two weeks of November. That may be far too soon for them to arrange it.
This is not at all what I was thinking, but I guess it is worth a try. It may work. And I won't know unless I try it.
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Wylee
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PostSubject: Re: starting the process to have a shunt installed   Thu Sep 15, 2011 11:26 pm

Just heard from the neurosurgeon's office. We are going to try for the l.p. shunt Nov. 1st. And so the process has started.
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medmisfit
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PostSubject: Re: starting the process to have a shunt installed   Fri Sep 16, 2011 3:26 pm

Linda, what happened to the Ramsey Hunt Specialist and all that jazz? I'm so sorry..I know you were hoping to find more information and options before you took this step. At least they're moving you along and your sister can be there to support you, I guess. How are you feeling about all of this???

Sending positive thoughts and healing vibes your way!
hug
Julie
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Heidi
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PostSubject: Re: starting the process to have a shunt installed   Fri Sep 16, 2011 8:26 pm

Linda I'm so sorry this wasn't the outcome you wanted and I know how hard it is when you have to try and accept it and come to terms with it, but at least you have support from your sister. I myself had had LP shunts in the past so I'm happy to answer any questions you have about it. hug

Heidi
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Wylee
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PostSubject: Re: starting the process to have a shunt installed   Sat Sep 17, 2011 9:49 pm

Heidi, I may take you up on your offer and try to find out more about the lp shunt. That hadn't been discussed as a possibility before, so it has caught me off guard.
Julie, I spoke with the specialist by phone. I explained my situation and most everything that had been done. I purposely left out the abnormal CSF pressure as a cause for our symptoms. He told me that it is his experience that someone who is "post onset" as long as I am (3 and a half years) that there isn't much hope for improvement. It's too late to try anything he could offer. I then told him about the Duke research Project on abnormal CSF pressure. He said he had never heard of this and is interested in reading when they publish. So, number one guinea pig will be trying the lp shunt if insurance approves. Just seems so much less "dangerous." Y'all have to keep in mind, I don't have "classic" IIH, first and foremost, my vision is not in any danger. We are just trying tp find a way to keep my CSF pressure down manually because medication is unable to do so. I would think giving the lp shunt a try first may do it. If we can't get it to drain enough, then medication might be able to help. We could always progress to the vp shunt.
Am I pon the right logic track with this??
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PostSubject: Re: starting the process to have a shunt installed   Sat Sep 24, 2011 6:01 am

I am really starting to look forward to trying the lp shunt. I think I may try to ask the neurosurgeon's office for more info about the specifics. The lp shunt seems just so much less threatening than a vp and it could work!
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PostSubject: Re: starting the process to have a shunt installed   Sat Sep 24, 2011 2:03 pm

Good for you hug, it is important to know all the facts about the shunt before going in, because then you're at least prepared. In our booklet Talking to your Neurosurgeon, we have a list of the kind of questions you should be asking, and you might want to have a look at those. Keep us posted and remember if there is anything you want to ask about what it was like having an LP shunt, I am more than happy to answer your questions. If you would like to talk about it in the chatbox sometime just give me a shout and I will try and match the uk time to yours to be able to chat with you. hug



Heidi xx
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medmisfit
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PostSubject: Re: starting the process to have a shunt installed   Tue Sep 27, 2011 6:11 pm

That sounds good Linda..I would think LP would be less intrusive also. I'm keeping my fingers crossed for you!
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Wylee
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PostSubject: Re: starting the process to have a shunt installed   Sat Oct 15, 2011 3:13 am

So, am I kidding myself? I decided to try for the lp shunt, but I am shooting from the hip. My Docs have been totally useless on the whole IH front. It is not within the realm of their expertise. I was surprised it was even brought up. Can't remember who's idea it was. But, the more I read the more scared I am getting. The failure rate is awful. The problems common to an lp shunt are painful in addition to just not working. I am having second thoughts. Should I have just gone for the vp shunt and been done with it?
As if having the surgery and then dealing with any after complications on my own (my sister will be leaving just 2 days after my surgery), I decided to finally move out of my trailer. In fact, I will be moving closer to my Docs, but I am working on that now. I have sold my trailer, rented the POD and have to be out in December. No, haven't found a place to go to yet, but other than the fact that I have 3 cats, I don't anticipate having any problem finding a rental. I need to learn the area before I decide where to buy. But, am I crazy to do this all now, when I may not be ab;le to move during November and December?? Oh well, too late now. I have made the commitment. Just added to the already extreme stress.

Just wondering if I have made a big mistake?
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laurataylor92
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PostSubject: Re: starting the process to have a shunt installed   Sat Oct 15, 2011 4:38 am

Linda,
I am getting the VP shunt on the 24th of this month, i thought i was getting the LP one, but all the doctors i have seen keep telling me that the one that goes into my brain is going to be better in the long run, and the lp shunt can do more harm than good. I don't know what you should do, but i hope you find something that will work for you. I am here if you want to talk, i just had my pre op appointment today, so everything is a go... nervous as heck.

I hope everything works out for you.

hug

Laura.
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Wylee
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PostSubject: Re: starting the process to have a shunt installed   Sat Oct 15, 2011 11:43 pm

Glad to hear that your pre op went well, Laura. Mine is scheduled for the day before surgery. Hope they don't decide to change the plan!!
Funny, my Radiologist mentioned to me some time ago , that they don't do lp shunts anymore because they have found just too many problems with them, Guess it's a good thing she isn't do the surgery!
I actually don't have an IIH Doctor. I have tried talking to the Neurosurgeon's office but the secretary keeps having the PA call me back, and he doesn't do lp shunts, so he doesn't know any of the details.
Am I crazy for trying the lp shunt? Should I find out if it is too late to switch to the VP shunt? I only have 3 days available to do pre op, surgery and recovery. Maybe I better just keep the lp set so i'll be able to move myself later in November. Sometimes I wonder what the h*ll am I doing??? This is one of those times I wish I had someone "close" to talk to. But I don't.
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PostSubject: Re: starting the process to have a shunt installed   Mon Oct 17, 2011 9:29 pm

When you were first told about the shunt, did your Neurosurgeon go through the pros and cons of each shunt? Perhaps it might be an idea to get hold of them and ask them which one they think would be more suitable for you, because you have been told that the Lp shunts aren't done anymore, and you'd like to know how true that is.

I have had both, my first shunt was an LP shunt, and I had that for 5 years, and it worked very well, but it did damage my back permanently. LP shunts can overdrain and they can cause back problems, not in all cases of course and I'm sure you've been told that. I now have a VP shunt and that is working well , and I have to admit I recovered more quickly from the VP shunt than I did from the LP shunt

If you are having doubts it's best to discuss it with your Neurosurgeon now before you have your surgery. Don't think it's too late to change your mind, best to go into your surgery feeling happy and confident about it.

Heidi hug

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Wylee
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PostSubject: Re: starting the process to have a shunt installed   Tue Oct 18, 2011 6:40 am

Hi Heidi, I guess I haven't been able to make myself clear. I am not being treated by anyone and I do mean anyone for the IIH. I met the neurosurgeon for maybe two minutes the day of my lumbar drain test, BEFORE the drain was inserted and have not seen him since. NO ONE HAS EXPLAINED ANYTHING TO ME. I have been left completely, that is 100%-ly on my own. I have no doctors to discuss this with either. In fact, earlier today, I received a reply from my Neurologist, who prescribes meds, that is all she does, about writing me something to ease the anxiety. She sent in a script for Lexapro. I am sure it will take weeks to work, and by then the surgery will be done. I need to find a good street vendor.

I sent my Neurologist a long email after she too asked my how I came to decide on a lp shunt. "Was it during an appointment?" Uh, no, have not had any appointments either. I have been left to make these decisions completely on my own, without the benefit of any doctors helping. This is why I am so freaked. And now I haven't heard vack from the Neurologist either. She is busy tomorrow in the clinic, so I don't know if I will hear back from her. I will be seeing her, for a med check, the morning of the shunt surgery. She managed to squeeze me in at 8:20 in the morning. I assume my surgery won't me until the afternoon anyway.

I am at my wits end here. I don't know any other way to explain what is going on. I hope I have been able to get my point across this time. :frustrated
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Wylee
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PostSubject: Re: starting the process to have a shunt installed   Tue Oct 18, 2011 9:00 pm

I heard back from my Neurologist today.. She started off by saying: "I don't know what to say." She has been kept out of the loop also, so she was unaware of all that had ( or not had) happened. She has suggestions incase I decide to not got through with the procedures, including seeing docs in Rochester and Scottsdale. Her last sentence: "Sounds like a difficult, lonely journey by a very tough person."
At least she acknowledges what I am going through, but no suggestions for the immediate future. So, again, I am on my own. Ugh
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PostSubject: Re: starting the process to have a shunt installed   Tue Oct 18, 2011 9:41 pm

Ugh indeed..Linda, that just sucks! I mean I only see my neurologist every six months and neurosurgeon when I'm having problems, but at least they do tests and talk to me about results. I really can't imagine that the neurosurgeon would do the shunt just on your word, so there must be some information backing the decision. I agreed w/ Heidi and suggest you request a meeting to discuss your options. I know it may delay your surgery, but it might be best if you're having so much doubt. I'm sorry you're feeling so isolated, but you are NOT alone!!! Yes it's ultimately your decision, but you have a lot of people here willing to help talk you through the process. I don't know what I'd do without the advice of my family and friends..let's be honest, specialists aren't always helpful and sometimes create more questions than they answer. You have every right to ask for more information before you decide to let them slice you open! Hang in there and let me know if you want to chat more about it.

hug
Julie
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Wylee
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PostSubject: Re: starting the process to have a shunt installed   Wed Oct 19, 2011 2:32 am

Thanks for the suggestions.

The reason that the neurosurgeon agreed to do the shunt was because my neuro-otologist was able to convince him. I saw the report from the lumbar drain test that I had in June. There were no results given. No suggestions either. All it did was state what was done.Their logic is that because I did get relief from having my CSF pressure lowered, then we will try surgically to keep it down since we were not able to through meds.

Maybe I will get lucky and not have any complications and the lp shunt will do the job. my fingers are cross

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PostSubject: Re: starting the process to have a shunt installed   Wed Oct 19, 2011 2:59 pm

Linda I am horrified that you've not been given the chance to talk through your shunt surgery, and given the option at least, because if they had explained the VP shunt, and the LP shunt to you, you would be feeling more confident about it all. It is such a shame that your surgery has been decided this way without you having all the facts and information. As you are going ahead with the LP shunt, please remember we are all here for you and will be rooting for you 100%. Not everyone has complications from and LP shunt and it might be right for you, so keep that positive attitude you have. hug

Keep us updated and we're here for any questions and to chat. Very Happy
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Wylee
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PostSubject: Re: starting the process to have a shunt installed   Sat Oct 29, 2011 1:27 am

Today is Friday. Tuesday is surgery day. I still have not received the "info packet" that is supposed to tell me when to stop taking which meds, where I need to go and when, all the usual pertinent stuff. They will Fed Ex it out to me today so it will get to me tomorrow. We leave on Sunday for the drive to the hospital.
The PA is supposed to call me tonight or tomorrow (yeah, right) with more of the details of the surgery. As of now, I only know that I need to be at the hospital at 5:45 a.m. on Tuesday, surgery set for 7:15 a.m. start. If I wasn't so desperate to get rid of these symptoms I would cancel the whole thing and tell them to call me when they have their act together, But I want this shunt to work. So, let's get the party started!!
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PostSubject: Re: starting the process to have a shunt installed   Sat Oct 29, 2011 2:24 pm

Linda I know it is all so last minute the way things are being handled, but I'm sure your surgery will go smoothly. I am constantly thinking of you and I will be keeping my fingers crossed and you in my prayers.

Heidi hug
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Wylee
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PostSubject: Re: starting the process to have a shunt installed   Thu Nov 03, 2011 1:10 pm

Well, surgery is done. I now have a Codman Hakim Inline with siphon guard programmable valve regulated lp shunt. They left me a card in my room after surgery with the info on it. It is set to 9 cm of water. So far, have a little bit of pain, am very "sore" and feel swollen. I haven't felt much difference with my symptoms, yet. Looking forward to the next couple of weeks.
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PostSubject: Re: starting the process to have a shunt installed   Thu Nov 03, 2011 1:46 pm

Linda I'm so glad your surgery went well. hug It does take a few weeks for the shunt to acclimatise itself to your body, but I know when I had my first shunt which was an LP one, once everything had settled down it worked really well. Fingers crossed you will finally get some relief and have a better quality of life.

get well 2

Heidi xx
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PostSubject: Re: starting the process to have a shunt installed   Tue Nov 08, 2011 7:59 pm

woohoo Linda, I'm so glad it's over and all went well!!! It does take time for everything to adjust, so hang in there.

Happy Healing,
Julie
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