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09/19/2012 05:46 PM

Do I need a shunt

Jenndra
Posts: 5
New Member

I have had some rough years with IH. It started with 3 surgeries to repair CSF leaks. The last repair caused increase pressure. I allowed a shunt to be placed. It lasted only 10 weeks before it was infected and had to be removed. That was two years ago, they want to put a new shunt in. I have had some lp drains with one opening pressure of 33, but the last one in May was 20. I do not take any drugs since I could not handle the side effects of diamox. I work two jobs and function most days with just Aleve for pain sometimes valium. I do have a build up of spinal fluid behind my right ear that has caused my ear to be blocked for the last two years, which they feel will get better with a shunt, if not will have to be removed. I do not want to do it but do not want to live like this everyday waiting for the next time I get meningitis since I have had bacterial twice and viral three times. There has to be something other then a shunt..any suggestions.
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09/21/2012 07:22 AM
Snuzy
 
Posts: 52
Member

I know that Diamox has rotten side effects but , personally, I tried everything before I agreed to a VP shunt (my lp shunt surgery was done as an emergency due to rapid vision loss). Would a few weeks of Diamox get rid of the buildup (knowing the side effects are temporary always makes things better for me) ? Would a half dosage not cause the side effects? Could another drug be substituted ? Can something be prescribed to treat the side effects?

A tap of 20 isn't "high" it might cause a headache but wouldn't make me run out to get a shunt placement.

Post edited by: Snuzy, at: 09/21/2012 07:22 AM


09/21/2012 08:52 AM
DBS
DBS  
Posts: 963
Group Leader
I'm an Advocate

Are you still dealing with any leaks at all? I'm not all that versed in them, but I do belong to a fb page for leakers.

Some have fluctuating pressures, from really low to really high, which could be why the last tap was just 20. While this is considered "normal", it may be too high for you, since you've been more accustomed to lower pressure from the leaks.

Do you see a specialist for leaks? I've heard that Dr. Linda Gray is supposed to be one of the best.

As for the fluid behind your ear, are they sure it is CSF? Have you tried a decongestant long term, and/or nasal spray? I deal with that symptom often, and it can range from sinus issues due to CSF in the sinus cavities, to literally a huge piece of wax in my ear.

When you say you couldn't handle Diamox, can you explain a bit more? How long were you on it? What effects did you experience?

When I first started taking it, it was rough, for about 6-8 weeks. Tingles in hands and feet, stomach pain, fatigue, pop tasted awful.

I still get the occasional tingles, but am taking potassium which helps. I also take a stomach medicine, Aciphex, which helps immensely with the stomach issues. Others take Prilosec, or any med like that will work.

Carbonation still tastes bad, and I still have the fatigue, but it has preserved my vision.

I know this is a lot of questions, but I want to be sure I understand where you are and be able to offer ideas.

We aren't doctors here, but there is a wealth of knowledge among the group, as most of us have had this a long time.

Welcome, and feel free to ask as many questions as you have!

Post edited by: DBS, at: 09/21/2012 08:52 AM


09/21/2012 11:25 AM
Jenndra
Posts: 5
New Member

1. No the leaks have been fixed.

2. The fluid behind my ear is Spinal Fluid have ssen specalist and had CT Scans that have showen it increase, got it after the last shunt failed. I also take nasal spray and clartin everyday. (only meds I take on a daily bases)

3. Diamox made my stupid to put it the better way. I could not funtion and go to work. The hands and ffet were painful, all I wanted to do was sleep. I tried it thre times and only make it about 2 weeks beofre I am sicker then before I took it. No problem with stomach at all. (I have also tried Topamax but since I never have migraines ti did nothing for me.)

4. I agree 20 is not high, but did feel better after they removed 25cc of fluid. the pressure before that was 33.

I suffer from my upper respiratory infections that puts meon anitbotices a couple times of year even though I have my sinus removed. They say I have asterile meningistis.

I just not sure what to do if I wait for the shunt could it not be on my terms and I could get sicker and then it because out of my control.

Thansk for answer my questions.


09/21/2012 11:56 AM
DBS
DBS  
Posts: 963
Group Leader
I'm an Advocate

I'm sorry you had such issues with Diamox. Many do.

I don't know much about shunts, but there are a lot of posts here from people that have them. some have very good luck, others have many revisions, so there is not real easy answer. I think a lot depends on what type is used.

Feel free to post more questions.


09/22/2012 10:42 AM
djfilippone
Posts: 172
Member

My daughter has issues with it such as her heels go numb and she will sometimes ask me the same question like twice in an hour. I am 55 and in menopause, that is whay I'm supposed to be doing. I called her "Daffy Duck" just to lighten things a bit. Big mistake......made her cry. If the diamox and the vp shunt being opened all the way doesn't work.....someobody had to make a decision. This February will be 5 years since she go this miserable disease.

I'm sorry but most doctors treat it like a make believe disease.


09/23/2012 01:52 PM
wylee
 
Posts: 321
Member

Hi Jenndra. I have a lp shunt which was installed Nov. 1st of last year. My issues with IIH is a bit different than most, but my shunt has been working fine, no revisions needed. We are still adjusting the programmable valve and my meds trying to find my "sweet spot."

It is my understanding that there are other things that can de done to divert spinal fluid including the eye fenestration. If I remember correctly, the only way to have control of the actual pressure is through a shunt with a programmable valve on it, which should help ease symptoms.

I do agree with Babby on the idea of having blow outs causing leaks to relieve the high pressure. If you are unable to see Dr. Gray (she is in Durham, NC), there is a doctor in L.A. (Cali.), Dr. Schievink at Cedar Sinai that lots of the leakers like. If your doctors are unable to suggest any alternatives to getting a shunt, you may want to get a second opinion.


09/23/2012 02:03 PM
Jenndra
Posts: 5
New Member

I live in the Boston area and have been dealing with Mass General and have gone for a second and third opinion. we have tried some other options I think I'm just nervous because the first shunt failed so quickly. most doctors don't want to deal with me and keep sending me back to Mass grneral. I just asked for the doctor to check my pressure again before we do the shunt.

09/24/2012 04:58 AM
djfilippone
Posts: 172
Member

Hi Jenndra,

I also live in the Boston area ...well 25 min. north. also deal with Mass General for my daughter. I don't know what your experience has been but I am very frustrated with them. Do you have a good neurologist there? My daughter has a vp shunt but her last opening pressure was 36 and they still wont' discuss an additional shunt. She can't go on like this.

By the way, I'm Debbie. Welcome to the site.


09/24/2012 05:57 AM
Jenndra
Posts: 5
New Member

I see William Curry he is good though sometimes I get so upset. I been told the neurologist at Tufts who is the head is good too. I had the best one at BWH but he left. It is a tiring disease because you don't look sick so people just assume you are fine. Thanks
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