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 Christy - Diagnosed March 2012

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ckroon
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PostSubject: Christy - Diagnosed March 2012   Wed Oct 24, 2012 4:38 am

Hi my name is Christy Kroon. I am married with four kids. I have three grown boys and one 8 year old daughter. I was diagnosed in March of this year with a brain tumor and was hospitalized. While in the hospital they gave me a second diagnosis of the IH but didn't give me a real explanation of what it was or where to turn for help. After 8 months of seeing a doctor that didn't want to give me the time of day and would only tell me to go to the closest ER to have a drain done if I felt my pressure was high, I decided that I had enough and found a new doctor. I now have a great doctor that has found meds that seem to work for the moment and he is at least willing to try new things. I am scheduled to have a stent put in on the 25th of Oct. I am very nervous about it yet very hopeful.
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PostSubject: Re: Christy - Diagnosed March 2012   Wed Oct 24, 2012 12:02 pm

Hi Christy! Smile Welcome to the group! I'm glad that you have found us and I hope you'll find this site to be a good source of support and information.

It sounds like you have been through a lot already ... I'll be keeping you in my thoughts and prayers that all goes well with your stent surgery tomorrow and that it brings you some relief of your IH symptoms. *big hugs* Let us know how you are doing!
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PostSubject: Re: Christy - Diagnosed March 2012   Wed Oct 24, 2012 4:15 pm

Hi Christy, welcome to the group!!! It sounds like you're on the right path now.. good luck w/ your procedure tomorrow. I'll be thinking about you and keeping my fingers crossed! Please keep us posted on your progress.
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PostSubject: Re: Christy - Diagnosed March 2012   Wed Oct 24, 2012 8:10 pm

.Hello Christy and :well done . Sounds like you are on the right path with a doctor who is a keeper.
There are not many here who have tried a stent, so I am really interested in hearing all about it. wishing you a successful surgery with speedy healing.
And welcome to the forum.
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PostSubject: Re: Christy - Diagnosed March 2012   Tue Nov 27, 2012 5:24 am

Hi everyone, it's been awhile since I have been on here. I had my surgery but they did not put the stent in. They said there was no need. So we are back at square one. In the mean time I lost my medical insurance and am now with Kaiser so I have to start with all new doc's. The last few weeks have been kind of a nightmare to say the least. The new doc's want to take me off all pain meds and say that IH is as common as the common cold! I about got up and walked out of their office. I see my new neuro tomorrow for the first time so we will see how that goes. Wish me luck!


for you
Christy
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sammyjo
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PostSubject: Re: Christy - Diagnosed March 2012   Tue Nov 27, 2012 4:54 pm

as common as a cold what a ***** u know x let him have ih for a week and see if then dismisses it as as common as a common cold. we are all here for you sweety... i think at one point or another we have all had ignorant doctors. we all share and understand your frustration


(sorry for spelling got double vision at min sorry)
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PostSubject: Re: Christy - Diagnosed March 2012   Tue Nov 27, 2012 5:34 pm

Christy, why did they decide that a stent wasn't needed? Has your pressure gone down?
You may want to contact the IHRF in Portland/Seattle and see if they can recommend someone within the Kaiser system that is knowledgeable.
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PostSubject: Re: Christy - Diagnosed March 2012   Tue Nov 27, 2012 7:04 pm

Hi Christy a belated welcome to the group hug I'm so glad you joined us. I am so sorry that things aren't going so well, and was absolutely, to coin a British phrase gobsmacked (it means lost for words) by the remark about IIH being as common as a cold. I don't think for one minute that a common cold debilitates you to the point of depression, or has the threat of blindness with it.

I am so glad you are going to a new Neuro qho hopefully has more experience and knowledge with IIH. Please keep us up to date with your progress.
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PostSubject: Re: Christy - Diagnosed March 2012   Wed Nov 28, 2012 3:38 am

I saw the new neuro today. It was much better the my new primary doc I must say. He has upped my Topamax to 250 mg a day to help with the headaches. They goal at this point is to get me off the pain meds which I must say terrifies me to death. Last time they did this I was not able to move out of bed for a week and ended up blacking out at work and they had to call 911 because I could not move due to the pain being so bad. Thank god I work in a medical facility and had nurses and caregivers all around that knew what to do.

They decided not to put the stent in because there was no need. The vein that they were going to put it is turned out to be ok. So they did the pressure testing and some other test, I can't remember the name, sorry, and they determined that the veins on one side are 1/2 size then the other size of my head. They believe that this is most likely what is causing the IH.

The new neuro today says that I have a very mild case of IH and his course of action is to up the Topamax, eliminate the pain meds completely as he believes that my headaches are rebound headaches and not from the IH. I have a feeling that I will be spending a lot of time in the ER and I tried to tell him that but for whatever reason Kaiser does not like to prescribe pain meds. He insist that over the counter pain meds are more then sufficient and would not listen to the fact that they run interference with my Topamax regardless of what my medical history says. It is going to be a roller coaster over the next couple of months.

I have thought about looking into other Kaiser option but my medical insurance is extremely restricted and I am only allowed to go to certain areas. As it is now I have to drive an hour away to go see the neuro even though my old doc that I absolutely love is 15 minutes away and accepts Kaiser.

Thank you for your support! These last few days have been very hard between all this medical stuff and having some serious marriage issues right now. Depression is really kicking in and I just feel like giving up. I know that sounds horrible but I just don't care anymore. Sometimes I feel like my family would just be better off without me. This burden is just so hard on them and so completely unfair. it feels like all I do is cry anymore day and night. I look at my bottles and bottles of pills and think about just taking them all but I know that is not the way out. And I know in my heart that it would hurt them more then help them!

:( 😢


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Christy
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medmisfit
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PostSubject: Re: Christy - Diagnosed March 2012   Wed Nov 28, 2012 10:17 pm

No wonder you've given up hope..I'm so sorry! It is all very frustrating, but I do think there have been some positive steps. I can tell you that I've had rebound headaches from both prescription pain and over-the-counter meds..I thought my brain was going to bust at first, but it got sooooo much better. I hope it works for you without the busting part..lol.

I'm not really sure there is "mild" IH, but at least your neuro's listening and increased your IH treatment. Topamax also made my headaches worse..I can't remember what you've tried, but that may also be something to consider. If a stent wasn't necessary, have they talked about a shunt or other options? I think I would contact IHRF..they're close enough they may be a great resource for you. I don't know anything about Kaiser, but I bet they'd help you find out.

It's really difficult to function when you're in chronic pain, so I doubt anyone here is surprised you're having issues maintaining your marriage or job. All you can do is take one day at a time. I do hope you find some relief soon, but do know you are not alone! If this becomes chronic and you're not able to get yourself beyond this depression, you may want to consider counseling..you should have an employee assistance program, human resources, or something that offers it. Family, friends, clergy can also be good resources, and we're here to support you any time!

Keep us posted!

Julie
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PostSubject: Re: Christy - Diagnosed March 2012   Thu Nov 29, 2012 7:00 am

hi Christy;
I'm so sorry for all your troubles. I totally understand the thought about looking at your pill bottles and thinking about taking them; the increased ICP I think just makes us feel so trapped and creates such dark feelings that it's an unavoidable thought to have; it's just logic to us I think. I just tell myself it will pass and it always does.

I too have had major marriage issues as a result of this illness, and my husband moved out in July. well there's more going on than just my problem but he was not able to be supportive as I needed and I finally decided that as hard as it is, I'd be better off on my own. his drama was making me sick, literally. there are a few of us here with good partners who are helpful, loving and supportive, but it seems like more of us have had big problems with partners who are selfish and awful. no one seems to understand this disease. they just think we look OK and don't believe what we say about how we feel, and think we are faking it or crazy. even after watching me get my LP, and collapse at times after being subjected to his emotional drama, he will still do this to me. and I can't completely escape because we have kids.

regarding your neuro, what I would do is make an appt for follow up around the time that you expect to be collapsing from the pain. then you can go in and report back that his little experiment on you is NOT working. he may feel obligated to at least try to get you off the meds. medical boards take away doctor's licenses for excessive opiate prescribing and so they have to be really careful. if you end up in the ER with a crisis then that is more ammunition to show him you need something more for pain. tell him you are willing to do whatever makes him comfortable with prescribing the meds, sometimes they have contracts with the patient about how they will manage the meds. that may make him feel safer to prescribe to you. you are a new patient to him and he doesn't know you but over time hopefully you will learn to trust each other and you will be able to get what you need.

hang in there and good luck with it all.
Deb
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ckroon
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PostSubject: Re: Christy - Diagnosed March 2012   Fri Nov 30, 2012 4:01 am

Thank you Julie, Deb and the rest of you for all of the advice and sharing your personal stories, it is very inspirational to hear that I am not alone. I have told my doc exactly that, I am going to do what he wants and then he will have to help pick up the pieces when it all falls apart.

My husband and I are going to try and work things out for now. He has been very supportive for the most part but the stress of everything has just taken it's toll and because he does construction there is no work for him right now so financially it has been a struggle. I am working 50 hours a week plus go to school full time so my plate is very full to say the least! One day at a time is all we can ask for!



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Christy
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