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 New to this board and I need advice and support

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susanjean

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PostSubject: New to this board and I need advice and support   Tue Sep 24, 2013 5:10 am

Help 
I am glad to Find a place that I can shre and I know there are other's that understand. I am 63,diagnosed with IIH in 2001 and had a lp shunt put in 2002. I have had hedaches off and on for 11 years,but none as brutal as the last 2 months. Over the course of a year,I lost 65 pounds,started exercising and felt great. Then,2 months ago,woke up with a splitting headache,that is with me,night and day. I have also developed balance problems,ear fullness,stiff neck,upper back spasms and disorientation. I almost have a sensation of floating. It is so weird. I thought it might be a sinus infection and had 2 seperate rounds of antibiotics,3 er visits, met with my neurosurgeon and neurology visit. I had a ct(normal,with small ventricles) and my xray showed some kinking. Still no answer. My neurosurgeon said he doesn't even put lumbar shunts in anymore and tells me he thinks I don't have pseudotumor and he won't talk to me until I go to neuro-op. So,I went today,and my visual field test was normal,except for some type of tear test. Also,had a crp test,and it was ok. The neuro-op dr said he doesn't think I have pseudotumor anymore. I was about to pass out from the testing and the pain and no pain meds were even offered. I asked him if he thought I could have low pressure of csf leak and he said yes. I have a MRI brain scan Wednesday. Shouldn't they do my neck and spine also? In my chart,they were supposed to offer me topomax. But,guess they forgot. So frustrated with no answers.PLEASE HELP. Thank you,Susan p.s.sorry this is so long. Had a lot on my mind.
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Sophiasmom
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PostSubject: Re: New to this board and I need advice and support   Tue Sep 24, 2013 6:16 am

hi Susan, sorry you are in so much pain.  I replied to your post on daily strength, and sent you a message to alert you to it as I could tell you were frustrated that no one had replied immediately.

I don't know what kind of studies need to be done to evaluate the shunt, but I definitely think you should go back to the neurosurgeon after the MRI and push him to evaluate it.  you need some kind of test of what your ICP is right now.  you don't have to have papilledema for it to be elevated ICP.

is your headache worse laying down or standing up?

Deb
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Heidi
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PostSubject: Re: New to this board and I need advice and support   Tue Sep 24, 2013 7:05 pm

I agree with Deb they really need to look at the shunt, especially as it's kinking, which surely must be causing a problem to the flow through the catheter. I am surprised that they haven't scanned your neck when they did the head scan. LP shunts are notorious for over drainage and can cause Chiari Malformation. I am in no way saying that's what you have as I am not qualified to do so, but it is something to be aware of and maybe ask them to check for, especially as you've had your LP shunt for so long.
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medmisfit
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PostSubject: Re: New to this board and I need advice and support   Wed Sep 25, 2013 3:22 pm

I agree with Heidi and Deb..you need further evaluation. I have LP shunt and started getting horrible headaches after I started an exercise program and lost weight. Come to find out I developed a Chiari Malformation, and all the strain from exercise was making my symptoms worse.

There are a lot of things that could be happening..if symptoms get worse when up and you find some relief when laying down, it could be low pressure because of an overdrainage issue..if catheter is kinked or knotted, it could be high pressure because fluid is building..you could have developed a Chiari Malformation from pull of shunt..or shunt is no longer necessary because IIH resolved with your weight loss. And, those are just the most frequent issues.

If they're doing MRI with contrast, it should show something. Hopefully that will give neurosurgeon the information he needs to move forward with treatment. Sometimes I've found that I get symptoms long before my body/shunt shows evidence that something is wrong, so it may just take them some time to catch up. I would keep a symptom log, so you can track everything and provide them with more information. There are examples in the Useful Guides and Print Outs section.

Hang in there and let us know if you have any further questions!
Julie
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Wylee
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PostSubject: Re: New to this board and I need advice and support   Thu Sep 26, 2013 2:07 am

Hi Susan,
So sorry to hear that you are having so much trouble.
The test that could offer you some answers is a myelogram.  It would test your shunt's potency whether or not it is free flowing, as well as detecting leaks.  If your docs have any question about how to do it they can contact Linda Gray Leithe at Duke Radiology.   She's an expert in the field.
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BananasMom
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PostSubject: Re: New to this board and I need advice and support   Thu Sep 26, 2013 2:33 am

Hi Susan! I don't have a lot of personal experience to share on this, as I don't have a shunt myself ... but I'm glad to see you were able to get logged in okay and are getting some good feedback here.  Smile Sending you *hugs* and hoping that you are able to get some more info about what's going on, and get some relief for your pain, really soon, hun!
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susanjean

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PostSubject: Re: New to this board and I need advice and support   Fri Sep 27, 2013 9:10 pm

Thank you all for these answers. For some reason,when I checked my inbox it said no messages.I don't know where else to check for replies. My result of my head mri came back and said it looked normal except for swollen parotid gland swelling. When I eat,at random times,my gland swells. so,the neuro-op  tells me my pressure isn't high or low or it would show up on the mri. My head hurts so bad,I can't even move my head. I get chills,then hot,then chills. So weird. I have no support where I live and think no one really cares. I am very depressed and don't know what to do next. I go to the neurosurgeon on Monday. How can I get him to take me seriously? I feel as if I have to fight for healthcare and I'm worn out.
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Sophiasmom
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PostSubject: Re: New to this board and I need advice and support   Fri Sep 27, 2013 10:10 pm

NO, you cannot see ICP on an MRI.  I have heard that there is a doc in Florida who is working on a technique to try to do this, a Dr. Alperin.  but this is at an experimental level right now.
tell your neurosurgeon that you need an invasive measurement of your ICP, he must PROVE to you that your ICP is normal.  you should not even have to tell him how to do his job, so I don't even know what to say about this, it's ridiculous.  but we see this in the docs all the time.  tell him that you need further testing to evaluate your shunt, if it is kinked it needs to be replaced.  if he gives you the run around then ask him for a referral to a NSG who actually knows how to manage shunt malfunctions, and ask him to call for you to get you right in to that doc.

you have to just keep checking back.  you hadn't replied to us and I was worried about you.  please go back to Daily Strength PTC forum because I spent quite a bit of time on my reply to you there, and then you just disappeared.

Deb
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medmisfit
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PostSubject: Re: New to this board and I need advice and support   Mon Sep 30, 2013 3:00 pm

Hi Susan! I would definitely ask for referral for 2nd opinion..whoever sent you to this guy should be able to make another referral for you. MRI doesn't show ICP and he doesn't seem to know anything about IIH or shunts. Make sure you get copies of all your records and tests to take w/ you..they put imaging on cd's now, so easy to transport.

In case you didn't see my other post, all you have to do is log into site and look for yellow stars..those are new posts. You would only have something in "Inbox" if someone sent you a private message/email.

Hope that helps!
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Sophiasmom
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PostSubject: Re: New to this board and I need advice and support   Tue Oct 01, 2013 2:23 am

Susan;
what happened today?
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susanjean

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PostSubject: Re: New to this board and I need advice and support   Tue Oct 01, 2013 8:47 pm

Sorry,I get messed up on here as to where I posted. Just my scrambled brain. I saw the neurosurgeon yesterday and he was awful to me. I remained calm until he just got up and said he was DONE. I think these doc's don't get it that we are informed about our disease. The entite time I am asking him questions,he looked at the floor. He told me that the neuro-op dr. told him I was fine? and the CRP blood test showed no giant cell arteritis. He said my ct and mri are fine,but I have small ventricles and my parotid artery is swollen. No big deal,right? I said,so my IIH is in remission or I'm shunt dependant? How do you know my pressure or if I have an infection or a csf leak? He scrolled through my scans and then got up and said,NO MORE TEST. he said I'M DONE. I asked him if he did an unessesary surgery 11 years ago? I was super ticked off by this point. He said no and I got up and told him he can talk to my lawyer and left. I went immediately to the patient advocate and I still don't know what to think. She is sending me my records and all test results. Also,they state in my chart,I had a shunt revision in 2004 and I NEVER had a revision. I am just so worn out and in pain. And scared,because I honestly think if they don't diagnose me soon,I'm not going to make it.
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Wylee
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PostSubject: Re: New to this board and I need advice and support   Wed Oct 02, 2013 1:32 am

Don't give up yet Susan.  We just need to help you find a different set of doctors and find out what's going on with your system.  As I had said, 11 years is probably close to the end of life span for a shunt anyway.  What is the nearest large city to where you live?
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