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 Jenny diagnosed 2010

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insidetheburg
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PostSubject: Jenny diagnosed 2010   Sat Aug 03, 2013 7:08 pm

Hi everyone, I'mso glad I found this site. My name is Jenny I'm 27 with 3 young children. I was diagnosed in 2003 with Chiari Malformation and had decompression surgery that same year. I had a few good years after that and had my two oldest, my boys in 2006 and 2007. When I got pregnant with my daughter in 2010 I started having all the problems again,and some very new ones. My neuro opthamologist diagnosed me with papilledema, swollen optic nerves, retinitis pigmentosa and finally he said I had intracranial hypertension. He started me on Diamox which I quit against medical advice because I was afraid of the effects it would have on my unborn daughter. So I put my health on the back burner until this year when I started having ALOT of symptoms. Flashing lights in both eyes that are there 24/7, dim vision, blurry vision, hazy/blind spots, dizziness, leg and arm weakness, feeling lightheaded. And much more. I went to my neurologist who ordered a CINE flow study on my Chiari. It came back that there was flow and plenty of space for my herniation. So now he is sending me for a repeat visual field (It was bad 3 years ago) and if it's worse he wants to do a lumbar puncture then he said we'd talk about shunts.... I have so many questions. For starters, what should I expect with a lumbar puncture? And with a shunt.... what is life like after both of them? Like I said I have 3 small kids and I'm so afraid that I will get to a point where I can no longer care for them properly... I am barely getting by now.... I', even afraid to cross the street with them cause I can't see well enough to see the cars. I'm very scared and have  very little support in my personal life because no one knows what I am going through. I really look forward to hearing from someone with experience in these situations. Thank you!
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PostSubject: Re: Jenny diagnosed 2010   Sat Aug 03, 2013 8:47 pm

Hi Jenny and welcome to the group. I am not surprised you're worried you've had so much to take in. A lumbar puncture will not only reduce your raised pressure, nit will allow it to be measured. Here is our topic on lumbar punctures and what to expect .

 A shunt controls your CSF level with a valve that is set to do that. there are different kinds of shunt, a VP shunt and an LP shunt. The LP shunt is from your lower back to a space in your abdomen, and there will be a vertical incision on your lower back and a horizontal one on your abdomen.  With a VP shunt an incision is made in a horseshoe shape behind your ear and another incision on your abdomen. The one you will have is dependent on what the scans show, because when the ventricles in the brain are too small they usually opt for the LP shunt.

They can be problematic but there are many of us here who have them, I myself have a VP shunt now, but I have had LP shunts too. By controlling your spinal fluid and pressure, it keeps your optic nerves from getting swollen, which is what causes the vision problems, it also helps the headaches and other symptoms, putting you into remission.

We have lots of information and don't hesitate to ask questions, no matter how many, or how silly you think they are, ask away, because they are never silly questions to us.
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insidetheburg
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PostSubject: Re: Jenny diagnosed 2010   Sun Aug 04, 2013 3:40 am

Thank you so much for writing.... I do have one BIG (to me anyway) question.... what kind of restrictions do you have after getting a shunt put in? Like, for example, I go to the gym often, what will I not be able to do after?
And do you think the symptoms I mentioned can be cause by Pseudotumor cerebri? I do also have chronic sinus disease, but they said it wouldn't cause the problems I am experiencing. 
Also, I live 2 1/2 hour drive away from where I will have the lumbar puncture, and shunt surgery. I don't drive, but will I be able to sit in the car directly after the lumbar puncture? I'm sorry that I have so many questions. But, my neurologist isn't big on explaining things and this is all fairly new to me. Thanks again. Smile
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PostSubject: Re: Jenny diagnosed 2010   Mon Aug 05, 2013 9:01 pm

Hi Jenny, welcome to the group!!! Your symptoms do sound familiar..increased pressure affects vision, which is the biggest risk with IIH. Just make sure someone's monitoring your vision and gets some of that pressure off asap.

You won't be able to drive after the lumbar puncture, but should be able to ride. They usually suggest you relax for 24 hours following the tap, but it's not like having surgery. Things will be tender, but should be manageable..I've laid down in the backseat for longer trips, so just play it by ear. You may also request LP done by fluroscopy..it's guided by x-ray, so they can see where they're going. It also tends to go more smoothly if you request no students or residents..I'd recommend that for the first one at least.  

As far as shunt placement, it's usually 4-6 week recovery. You should be able to resume most activities eventually, but it does take some time. I have LP shunt and they told me to avoid anything that would jar the shunt, like horseback riding or roller coasters. I think I have more limitations from the IIH and Chiari, than shunt itself. No straining, bending, lifting, blah, blah, blah. Usually it's ok as long as it's not causing issues for you. I suggest you check out the IIH Surgery section for more info.

Let us know if you have any further questions or concerns, and we'll do our best to help you through it!

Take care,
Julie
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insidetheburg
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PostSubject: Re: Jenny diagnosed 2010   Wed Aug 07, 2013 2:57 pm

Thank you so much for the info, Julie! I'm learning so much and I feel like I'll be well-prepared for my neuro appointment in September.... but I do have another question. This morning I woke up with a black "target" in my central vision of each eye, I had been sleeping on my back and it semed to clear up mostly when I turned to my side. The "target" was black, and it was very scary. as for other vision problems I have flashing colorfullights in both eyes constantly for ten years now. I also have floaters. And several blind and hazy spots and dimmed vision. Bright lights, like sunlight, hurts really bad to the point where I don't want to go outside. I have horrible headaches and everything has gotten worse over the last few weeks.... I'm very scared and I don't know what to do.

I've already learned so much from you girls, but I hope you can help with this question too.
Thank You!
-Jenny
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PostSubject: Re: Jenny diagnosed 2010   Wed Aug 07, 2013 7:03 pm

This sounds like the effects of the high pressure, which causes swelling to your optic nerves which would cause these. They should settle down once you've had your lumbar puncture, but I would notify your Neurologist as soon as you can that you are experiencing this, he may bring your lumbar puncture forward.
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insidetheburg
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PostSubject: Re: Jenny diagnosed 2010   Thu Aug 08, 2013 2:28 am

Thank you. My neuro wants to repeat the visual field test and says he is not comfortable ordering the lumbar puncture until he has it, which will be the 14th.... I don't understand why all the runaround when I've been told by a neurologist and a neuro-opthamologist that it is PTC.
I did have another question about shunt surgery, and please forgive me if these are answered elsewhere, I have trouble seeing the computer so without help I overlook things... but the restrictions that Julie mentioned, would they include things like playing drums (I'm a hobby drummer, I don't play in a band anymore), and what about little things like sex, lifting my kids, household chores, things like that. Thank you so so much.
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PostSubject: Re: Jenny diagnosed 2010   Thu Aug 08, 2013 2:35 pm

I totally understand your concerns about things like this. Once you have healed from surgery you'll be able to do all the things as normal before, but you have to be sensible about it. Things like funfair rides that can jar or knock your shunt area are better avoided. You'll still be able to pick up your kids, do your chores, play your drums and have sex. Just remember that that area in your back is vulnerable and you have to take care of it. When bending make sure you follow the rules of lifting etc and bend knees, don't lift things that are too heavy that can jar and strain. You'll find your own comfort level for doing things, as you become more aware of what causes back pain and what doesn't.
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PostSubject: Re: Jenny diagnosed 2010   Thu Aug 08, 2013 8:37 pm

Agreed..lol. I think Heidi has pretty much covered everything, but I'm concerned about your vision. Can you contact whoever is doing the field test to see if they can move it up? Be sure to let them know things are getting worse..most ophthalmologists will move up your appointment if feel your vision is compromised.

Good luck w/ everything, and do keep us posted!
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insidetheburg
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PostSubject: Re: Jenny diagnosed 2010   Thu Aug 08, 2013 11:49 pm

Thank you both so much for your responses, you've made me feel a lot more at ease about the potential surgery and the lumbar puncture(s). As for moving my appointment up, I was originally scheduled for today, but had to move it to next week so myc husband could get off work to take me. It's a 2 1/2 hour drive and I am too nearsighted already to drive myself. We also have 3 kids to get a sitter for so it's extremely hard to get to appointments as quickly as I probably should. But, the flashing lights I have had for years, and the hazy spots, blind spots and weird circles in the mornings have been happening for a while now, but have recently gotten worse. But you two have answered more of my questions than any doctor so far. So I thank you very very much. I'm so glad I found this page.
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PostSubject: Re: Jenny diagnosed 2010   Sat Aug 10, 2013 11:07 pm

Help. Need advice.... I just had two ocular migraines back to back having a lot of trouble seeing now and my left hand went very very numb during them.... can this be CSF related?/
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PostSubject: Re: Jenny diagnosed 2010   Sun Aug 11, 2013 6:36 pm

We can't say that it is I'm afraid. You need to contact your Neurologist about it. The numbness experienced in your arm isn't listed as a symptom with Ocular migraine, which is more reason to see your doctor. Have you had any of the high pressure symptoms like, headache, whooshing in your ear, nausea, pain in your arms legs and back, blurred, double or obscured vision? Some or all of them usually indicate high pressure. Please keep us updated.
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PostSubject: Re: Jenny diagnosed 2010   Wed Aug 14, 2013 7:15 pm

Hi Jenny, and welcome to the forum (sorry for my lateness, I've been away on vacation).
Any time there are changes in your symptoms, especially if they get worse, it is time to call the docs.  I realize it is difficult for you to make all the arrangements to be able to go to the docs, but, your vision and maybe even your life could be at risk.  You may need to go to your nearest hospital emergency room to get that lumbar puncture.  Just make certain they get an opening pressure reading, draw off excess fluid, and then get a closing pressure reading.  Generally, visual issues can be reversed once the pressure is reduced, but if waited too long, they can become permanent.  Please try everything you can think of to be seen ASAP.
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PostSubject: Re: Jenny diagnosed 2010   Thu Aug 15, 2013 5:23 pm

Hi Jenny!  Welcome to the group - so glad you're here!  I just found this thread, and wanted to jump in and echo what some others have already said ... I hope that you will do whatever you can to be seen by a doctor regarding your worsening visual symptoms ASAP.  I have always been told not to put off making an appointment whenever there are changes with my vision ... maybe a friend or a family member could drive you and sit with the kids while you are seen by the doctor?  It's important sweetie, so please do what you can and update us on how you are doing. *hugs*
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insidetheburg
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PostSubject: Re: Jenny diagnosed 2010   Mon Aug 19, 2013 2:57 pm

Hey, guys just a little bit of an update.
Heidi- I do have those symptoms all the time (whooshing sounds, numbness, blind spots, blurred vision, pressure in back of head and neck and severe headaches)
I had a visual field done last week but haven't heard back from my neurologist even though the eye specialist confirmed it was worse than in the past. My neurologist just does not believe it it pseudo tumor cerebri despite all my symptoms and he said lumbar punctures would cause more headaches, so I am afraid he is going tototallly bloe me off. I am getting to the point where I can't see to function and I am too dizzy all thetime, I am afraid to be alone with my three children.
He put me on Verapimil for the ocular migraines,but that's all hes done. I'm getting to frustrated.
As for getting a lumbar puncture at my nearest hospital, I live in a small town and they cannot do them (or much of anything) here. So I have to go 2 1/2 hours up the road to see this Doctor who won't do anything.
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PostSubject: Re: Jenny diagnosed 2010   Mon Aug 19, 2013 3:38 pm

I do have one more question... who actually preforms the lumbar punctures? Cause I'm not very comfortable with my neurologist.
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PostSubject: Re: Jenny diagnosed 2010   Mon Aug 19, 2013 6:41 pm

The radiologist does lumbar puncture with fluroscopy..otherwise, I think it depends on the doctor. I've had them done in PCP office, hospital bed, and radiology.

Honestly, I would ask neuro-ophthalmologist for referral to another neurologist or neurosurgeon. It really doesn't sound like your neurologist knows much about IIH (your symptoms should totally improve with spinal tap unless you're leaking fluid and have low pressure headaches) and your vision is in jeopardy. At least let neuro-ophthalmologist know that you haven't heard from neurologist and see if they can advocate for you.

Good luck, and keep us posted!
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PostSubject: Re: Jenny diagnosed 2010   Tue Aug 20, 2013 7:39 pm

Ok, my neurologist finally got back to me and he has ordered a spinal tap.... so if you could please give me a "what to expect" messege.  I'm really scared.... I've had a spinal block for a C-section is it anything like that? And how soon after will I be able to go back to the gym?
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PostSubject: Re: Jenny diagnosed 2010   Tue Aug 20, 2013 9:27 pm

There's nothing to be scared of because it's not much different to the spinal block you had for the C section. They more or less do the same thing but to drain the spinal fluid. Here's some more information on lumbar punctures . You wont be able to go to the gym for about a week, as it takes about 3 days for the site to heal, otherwise there's a risk of leakage, you may  also feel a bit sore and bruised with the poking and prodding they do to find a space to insert the needle. So I think it's better to let things settle down a bit first.
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insidetheburg
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PostSubject: Re: Jenny diagnosed 2010   Tue Aug 20, 2013 11:20 pm

Thank you for the info! Do you think I will have a noticeable improvement in my symptoms (flashing lights in vision, blind spots, vision black outs, ear pressure/ringing/swooshing, dizziness, ect)? Or will that be something that comes with more LPs or do I have to have a shunt? Or can pseudo tumor be treated solely by lumbar punctures?
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PostSubject: Re: Jenny diagnosed 2010   Wed Aug 21, 2013 5:49 pm

You will hopefully notice some immediate improvements once they drain off fluid..it's the build up of fluid that causes the pressure and symptoms, so symptoms tend to improve once pressure released. Unfortunatley, LP relief is usually short term. They use medications like Diamox to try to keep fluid levels down and control symptoms on an ongoing basis, but move to shunt when meds don't work or vision in jeopardy. If you respond well to LP, chances are you'll respond to shunt.

If you're not keeping a symptom log, I would at least write down your symptoms prior to LP..it will be an easy reference point for you once tap completed and neurologist can use info to confirm diagnosis/ treatment options.

Check out the resource Heidi provided and let us know if you have any other questions.
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PostSubject: Re: Jenny diagnosed 2010   Wed Aug 21, 2013 7:22 pm

I have to agree with Julie, with the lumbar puncture reducing the pressure and medication such as Diamox controlling it, you should notice an improvement in your symptoms, and for occasional flare ups of high pressure a lumbar puncture helps bring the level down again, so it can be managed that way. IF it becomes that you need multiple lumbar punctures and medication isn't effective for you, and your symptoms worsen, that's when they usually look at putting in a shunt. Hopefully yours can be managed with medication and the odd lumbar puncture if necessary.
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PostSubject: Re: Jenny diagnosed 2010   Wed Aug 21, 2013 9:01 pm

Thank you both so much. I'm very Nervousbut at the same time I am hopeful. I've lived with these symptoms for so long. I will let you all know how it goes tomorrow. I am so glad I found you all.
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PostSubject: Re: Jenny diagnosed 2010   Fri Aug 23, 2013 2:05 am

Well, I am backand it took SEVERAL tried under fluro to get my LP done... and the verdict? My opening pressure was 13... so if I don't have pseudo tumor what else could cause papilledema? I hurt really bad right now, my back has a swollen patch and im concerned about how it feels like it is pulling.... I guess I don't exactly fit in here now, but I was hoping someone coude shine some light on myproblems.
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PostSubject: Re: Jenny diagnosed 2010   Fri Aug 23, 2013 3:05 am

lso I should add that my LP was done under xray and it took two doctors and lots of sticks to get it.... noe my results say there are 138 rbc in my csf.... also my lp was inserted while I was laying flat on my stomach... is this at all normal?
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PostSubject: Re: Jenny diagnosed 2010   Fri Aug 23, 2013 3:41 am

the most accurate results are obtained when you are on your side.
if you had multiple sticks then there is a possibility that your opening pressure was falsely lowered.
there is an alternate explanation, contained in a paper that I could send you.  private message me with your email address and I'll send it. 
Deb
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PostSubject: Re: Jenny diagnosed 2010   Fri Aug 23, 2013 3:43 am

call and ask if they added the length of the needle to the measurement on the manometer.  the needles are usually 6cm so that would make it 19 if they forgot to do that.  with the sideways measurement they don't need to add that.
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PostSubject: Re: Jenny diagnosed 2010   Fri Aug 23, 2013 4:45 am

Well they inserted the needle while I was on my stomach, after the several tried. RThen they rolled me to my side to take the pressure and samples... The pressure was only 13 and the only thing weird about the samples was the red blood cell count,  but I mean they butchered my back Ijust don't understand what else could be wrong with me if it's  not elevated  icp? Everyone thought that PYC was causing my pappiledema. And I don't know what else could cause the iddues I am having .I'm really depressed cause I thought I would finally have answers,  but all I have is an unbelievably sore back.
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PostSubject: Re: Jenny diagnosed 2010   Fri Aug 23, 2013 2:56 pm

heightened red blood cell count, if low, can easily mean a traumatic puncture. with my first lp, they listed my OP as a range. the consensus on the boards has been that that meant they screwed it up. i also had a few red cells in my csf; and i am sure the bad stick was why they were ignored.
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PostSubject: Re: Jenny diagnosed 2010   Tue Aug 27, 2013 7:01 am

Oh no, sounds like you need a repeat lp done.  They botched this one royally!  I am so sorry to hear that.
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