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Kaitlinms
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PostSubject: Friends and family    Sun Nov 13, 2016 8:31 pm

Hi,

My partner has just been diagnosed with IIH and after much research online I stumbled across this site and I was hoping for some information and a little reassurance. After reading I've learnt a lot about the condition but I know there will be much more to learn. At the moment my partner has been in hospital for just over a week. She has the constant, severe headache that doesn't go away and her vision seems to be getting worse. She complains of double and blurred vision. Since being at hospital she has been given a lumbar puncture but that didn't seem to relieve any of the symptoms. They have started her on a high dose of diamox which makes her incredibly drowsy,(does the drowsiness wear off after being on the tablets for a while?). I think she may have a lumbar puncture next week if tests show that her optic nerves are still swollen. I just feel so helpless. I know I can't take the pain away and all I can do is be there to support her. Also, from brain scans they have noticed that her pituitary gland seems to be swollen and she has a very high amount of prolactin without ever being pregnant. I was wondering whether anyone has experienced something similar and could offer some reassurance that things do improve and she will feel better. Thanks in advance,

Kaitlin
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PostSubject: Re: Friends and family    Mon Nov 14, 2016 10:14 pm

Hi Kaitlin! I'm so sorry to hear that your partner isn't finding any relief. I know that tumors on the pituitary glands can sometimes cause increased prolactin, headaches, and vision problems. Maybe IIH can have similar affects or secondary to the pituitary issue. If there's a doctor or nurse that seems approachable, you may ask them to explain what's happening with the pituitary gland and how it affects the IIH. I just think it's odd that she got no relief from symptoms following the lumbar puncture, which makes me think IIH may be secondary to pituitary issue. They usually confirm an IIH diagnosis because we find relief from symptoms once some of the spinal fluid is removed, so I would have thought the lumbar puncture would have helped. Did they happen to mention her opening pressure or how much spinal fluid they drained off? Sometimes they don't drain any if just looking for infection or another cause, so that could give you more information, too.

Everyone responds differently to Diamox and other treatments. Some do find that the side effects eventually wear off, others can't tolerate it and have to try other medications. I personally did ok with it initially and went into remission, but when IIH came back the Diamox didn't work. The Diamox is supposed to help reduce fluid levels, which should reduce pressure on the brain and give her some relief. You may check to see what dose she's taking and what's recommended for IIH. Again, it varies with everyone so would just be a guide.

IHRF probably has the most comprehensive information regarding IIH, so you could also contact them for suggestions or support (http://ihrfoundation.org/ ..phone and email listed at the bottom of the home page).

You really seem to be doing everything you can. Most important is to try to understand and be there for her. Hang in there and let us know if you have any further questions. Also, please keep us posted on her condition!

Thank you,
Julie
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PostSubject: Re: Friends and family    Mon Nov 14, 2016 10:35 pm

Hi Julie, thanks for your reply! I think they have now said the pituitary gland isn't of concern at the moment the main thing is the pressure. I am sure they said after the lumbar puncture that it was 4x the normal pressure and they drained about 300ml but the pressure was still high.

We have been told today that she will have to have a vp shunt because the swelling on her optic nerves is so severe. I think we are all trying to absorb that, i know surgery can be a scary concept, especially when it is done on the brain. It seems as if things have happened so fast since she was diagnosed with IIH and were still trying to take in all the information. I am just hoping that some good news finally comes our way and there are no complications from the surgery.

Thank you for the link I will look into it.

All the best,
Kaitlin
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PostSubject: Re: Friends and family    Tue Nov 15, 2016 6:53 am

I posted this message yesterday to what looks like this thread, but it's somewhere else.  and now I have to say I don't know where this thread actually is: which folder is it in?  I can only get to it from the list on the side.  anyway, here is the message if you did not see it:

I think that if you look up pituitary adenoma online, maybe wikipedia, it may explain what is going on.  the docs may need to explain it better to the two of you.  I couldn't tolerate Diamox at all so I can't answer to long term treatment with it personally.  what you are doing right now is exactly what she needs from you; caring about her and supporting her.  a great many of us with IIH have been abandoned by those closest to us, who couldn't handle our illness.  just the fact you would take the step of posting here tells me that you are an important part of what she needs to get through this, just being yourself.  don't underestimate that, and maybe it will allow you to feel less helpless.
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PostSubject: Re: Friends and family    Tue Nov 15, 2016 7:02 am

to spell it out, her prolactin elevation is coming from the pituitary.  this is caused by an adenoma in the pituitary.  this can cause intracranial hypertension, and can cause loss of peripheral vision by itself, without causing swelling of the optic nerves.  so you may want to make sure that you have a neuro-ophthalmologist involved who can explain to you in detail why he thinks this is optic nerve edema from intracranial hypertension, rather than vision loss from pressure on the optic chiasm from the adenoma.  the reason this is important is because if the adenoma is the primary culprit, the answer is to treat the primary problem.  what can they do to reduce the size of the adenoma and the pressure it is putting on the brain?  how will a VP shunt help this?  if they think the adenoma is inoperable..... then maybe that's a solution.  usually they try to give people medication to block the prolactin.   I would ask the ophthalmologist if ONSF is another option in order to save vision now while the plan for the adenoma is being discussed.  normally people with IIH have empty sella: you can't see the pituitary on MRI.  so for her to have a mass there is suspicious that they shouldn't be trying to give her more than one diagnosis.  idiopathic intracranial hypertension is a diagnosis of exclusion, meaning all possible secondary causes have been ruled out.  that adenoma is telling me they may not be able to give her an idiopathic label.
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PostSubject: Re: Friends and family    Tue Nov 15, 2016 8:40 am

Hi, I'm not sure where you're previous message went either but thanks for all the advice and information. I think they've looked at brain scans and said that the pituitary gland isn't of concern and that's why they think it's the pressure. I know she does have high pressure because of the lumbar puncture they measured it then. I think the medication to lower the prolactin would take too long to take effect and her vision is rapidly deteriorating so she needs urgent intervention. I will get more information today when I visit the hospital.

Kaitlin
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PostSubject: Re: Friends and family    Tue Nov 15, 2016 9:37 pm

It is definitely a scary time, but I would clarify reasons they've ruled out the pituitary issues before agreeing to a VP shunt. Maybe you or your partner already have the info, but it seems like something to consider since both conditions have similar symptoms. I still think it's odd that she didn't find relief after they drained the CSF so either they didn't drain enough or IIH isn't the cause. Always better to be safe than sorry, especially when they previously mentioned the enlarged pituitary.

I know that IIH can progress quickly at times, but vision loss can often be reversed with proper treatment for either issue. Maybe the VP shunt would be appropriate treatment for both, but I would ask. It seems like it would just be a band aid if pituitary is the issue, but maybe they're just trying to help her vision and pain while they address that issue. The VP shunt isn't as horrible as it sounds, but will only work if it's appropriate for her condition. She should find fairly immediate relief, if that is the case and all goes well.

I hope they were able to provide you with more answers today, and your partner finds relief soon!!!

Good luck,
Julie
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PostSubject: Re: Friends and family    Wed Nov 16, 2016 4:45 am

hey Julie, which folder is this thread in?  at the top of this page it says it's in "Living with IIH" but it's only to the side of this because the last post was in it.  otherwise, how do you find it?  it's in the folder on the side called "Recent Posts" and that is where you can see two copies of it.  but I don't see it anywhere else.  once it is not a recent post, where will it be?
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PostSubject: Re: Friends and family    Wed Nov 16, 2016 8:51 am

Hi guys,

The doctors have said that the pituitary gland is normal but she has raised prolactin. They definitely think it's a case of IIH. She had lumbar puncture last night and her opening pressure was 52 which is slightly higher than last time. Now she is just waiting to be transferred to another hospital so she can have surgery.

Kaitlin
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PostSubject: Re: Friends and family    Thu Nov 17, 2016 6:05 am

OK, good, I'm glad you got them to clarify that.  I hope the shunt helps her!  I would not be a happy camper at 52!
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PostSubject: Re: Friends and family    Tue Nov 22, 2016 7:22 pm

Deb, I found it under "Living with IIH", "Friends and Family". I did notice there were 2 entries at one point, but I usually just check the "view posts since last visit" and have no idea what happened. Hopefully just a glitch. PM me, if you find any others. Thanks!

Kaitlin, no wonder she couldn't find any relief..52 is very high. I hope the shunt helps, but please keep us posted and let us know if you need anything else. Take care!
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PostSubject: Re: Friends and family    Tue Nov 22, 2016 9:47 pm

Hello,

My partner was finally transferred recently! She has had her 3rd lumbar puncture in 2 weeks and the opening pressure was 29 which is a lot lower than previously. They drained it to 20. After this lumbar puncture she stopped seeing double vision however the headaches are still there and she still has tunnel vision. We are just waiting now for a surgeon to see her, I hope things get moving soon. This will be her 3rd week in hospital and its starting to take its toll haha.

Kaitlin
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PostSubject: Re: Friends and family    Wed Nov 23, 2016 2:48 am

normal is under 15.
there are many people with IIH with pressures of 20 who still feel like crap and have headaches, although they may not have papilledema at that pressure.  however the neurologists tend to blow off people with pressures below 25.  I am not sure what they think is going on between 15 and 25, but I can tell you that it's not pretty.
maybe they didn't want to drop her too quickly.  but next time she has a tap, ask them to close her up at a pressure of 14.  THEN she might feel OK.  my son is dancing and laughing and singing at 14.
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PostSubject: Re: Friends and family    Wed Nov 23, 2016 10:32 am

I know they wanted to drain more but the needle slipped and they were reluctant to find the spot again because she already has a bad back with a fractured spine and it was causing her too much pain. Fingers crossed that they do the surgery before having to do another lumbar puncture. I'm glad your son is finding relief!
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PostSubject: Re: Friends and family    Wed Nov 23, 2016 4:54 pm

oh, well, my son's ICP is 23, so they won't treat him.  they don't pay any attention to the fact that his autism was reversed for 2 days after the tap.  it's such a huge clue staring them in the face but they don't pay attention.  it makes you wonder what else they have gotten wrong.
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PostSubject: Re: Friends and family    Fri Nov 25, 2016 11:07 am

I know, doctors aren't perfect they still make lots of mistakes, I've seen that first hand too.
So the surgery took place yesterday but was unsuccessful. Her ventricles were too small and they couldn't do it but they were able to put the tube to her stomach. She will have to have surgery again soon with another surgeon who will try and put the catheter in her brain. I just wish this nightmare would end.
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PostSubject: Re: Friends and family    Fri Nov 25, 2016 5:27 pm

oh no I'm so sorry!
it makes you wonder about that procedure for her.  how can they drain any pressure out of her swollen brain if it's not coming from the ventricles?   they are being squeezed from the outside, that's why they are so small.  maybe an LP shunt would make more sense.  the pressure in IIH comes from along the outside of the brain.  I hope they find a solution!

with this particular issue in IIH, recognizing at what pressure someone has symptoms and ought to be treated, it's not on the level of individual doctors making random mistakes.  it's a system wide problem in that they are taught incorrectly based on a series of incorrect assumptions.
"men don't get IIH"
"you have to be fat to have IIH"
"you can't have IIH without papilledema"
"we only treat IIH if the pressure is 25 or higher"
"there is no important clinical syndrome that occurs at borderline ICPs"
and the big one:
"normal ICP is ........"
the fact is that in determining the normal range they made incorrect assumptions in choosing their "normal" group, such that their results may be incorrect, in fact must be incorrect.
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PostSubject: Re: Friends and family    Fri Nov 25, 2016 8:05 pm

She can't have an lp shunt because she has a spinal fracture and having a shunt in her back might mess up her plans to get her back fixed so I think they're trying again Monday so hopefully everything will work out. She is in so much pain after the shunt but I suppose that's normal right?
And yeah absolutely I agree, they can go off assumptions.
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PostSubject: Re: Friends and family    Mon Nov 28, 2016 10:45 pm

Quick update-my partner had another unsuccessful vp shunt placement. Two failed operations in the space of less than a week is really hard hitting and to be honest it's making me feel really disheartened. They are now considering an lp shunt but I don't know how well that will work with her existing back problems. Has anyone got an lp shunt and could give me some reassurance about it?
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PostSubject: Re: Friends and family    Tue Nov 29, 2016 4:39 pm

Kaitlin, I'm so sorry!!! I can understand why you're feeling disheartened..how horrible! My first shunt was LP and I had it for 13 years. It wasn't perfect and I had some revisions, but definitely helped with my symptoms and allowed me to get back to work, etc. I'm not sure how it will affect your partners' back problems, but praying this one will be successful and she'll finally find some relief!

For me, the shunt was placed in lumbar region of my spine and catheter wrapped around my right side into the peritoneal cavity so excess fluid could be reabsorbed. My spinal fluid dropped too quickly with surgery and I initially had seizures when I tried to get up, but after laying flat and a couple of caffeine IV's all was well. I think I was in the hospital 4-5 days because of it, but recovery was typical 4-6 weeks once I was home. It's been many moons ago, but if I remember correctly it was the little incisions that bothered me the most.

And, just an FYI. I interestingly enough had a CT Scan yesterday and they found that my pituitary gland was enlarged. The ENT said it can happen with increased intracranial pressure, but they're scheduling a MRI just to make sure I haven't developed a pituitary tumor. Your post was the first I remember hearing anything about the pituitary gland and IIH, but it all makes sense to me now..lol.
Always something to learn with this disease!

I hope all goes well for your partner, but how are you holding up, Kaitlin? Please make sure you're taking time to take care of yourself! I'm sure it seems impossible, but there are many places to get away at the hospital. The roof was always one of my favorite spots, if you're allowed access. I also sat in the stairwells..take a brisk walk, meditate, eat, got to lounge and take a nap. Whatever helps you to refuel. I always tell my family and friends that I think caregiving is harder than being the patient, so take care.

Keep us posted,
Julie
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PostSubject: Re: Friends and family    Tue Nov 29, 2016 10:08 pm

Hi Julie,

Thanks for all the information that you've shared, it makes me feel better knowing that people have had lp shunts and it has helped them get back on their feet again. Did the shunt cause you any back pain after the surgery that has permanently stayed with you? If so, what does the back pain feel like? I've heard that it may feel like a constant lumbar puncture but I'm not sure how true that is. Also, how many revisions did you have and did you have them relatively soon after the initial surgery? What type of shunt do you have now?

I'm glad I wasn't going crazy then about the enlarged pituitary gland. I really hope that your mri scan comes back all clear. I know with my partner they've put the pituitary glad aside while they deal with the IIH which makes me feel as if they don't see it as an emergency. So I hope all goes well with you.

Thank you Julie, I think sometimes you do feel forget to take care of yourself while you're trying to stay strong for others. I'm trying my best to refuel in the times that I'm not at the hospital. I suppose I will feel much more relaxed when treatment actually works. It's just such a shame that there's not many options and the options that are given are not necessarily guaranteed to last. I really hope that in the future more treatments are discovered and used with IIH.

Best wishes,
Kaitlin

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PostSubject: Re: Friends and family    Tue Nov 29, 2016 10:11 pm

Also what I don't understand, she had another lumbar puncture today to relieve pressure while she decides if she is going to have an lp shunt. The opening pressure was 24 which is moderate with IIH I assume? They drained it to 10 and there is still no relief?!
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PostSubject: Re: Friends and family    Wed Nov 30, 2016 3:45 am

going down to 10 maybe she is having low pressure symptoms now.  when you say no relief, what do you mean?  are her eyes better at 10?  they ought to be, one would think.  if not ask about the pituitary effect on the optic chiasm.
I'm so sorry about all these problems!
there is another type of shunt, a cisterno-atrial shunt.  I wonder if this might be the best option for your partner.
https://www.dailystrength.org/group/pseudotumor-cerebri/discussion/for-anyone-needing-a-shunt-please-read-this
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PostSubject: Re: Friends and family    Wed Nov 30, 2016 8:40 am

Yeah she still has the headaches after lumbar punctures and there's not really any changes in her vision. I have never heard of that shunt and after googling it, I can't seem to find much information about it. Please could you tell me more about it?
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PostSubject: Re: Friends and family    Wed Nov 30, 2016 6:21 pm

Kaitlin, I had some sciatica following the LP shunt placement that flares up every now and then, but that's the only negative effect from the surgery..no back problems at all. I had a few revisions, but the first was a few years after placement. The catheter had dislodged and rolled up into a ball, so my high pressure symptoms came back. The last couple were because of overdraining. I dealt with low pressure symptoms at that point.. basically only found relief when laying flat and pounding caffeine. I did develop a mild Chiari Malformation because of the overdraining, but that's just because it took so long for someone to believe my symptoms were real. Around here they seem to think that if you're overweight you're depressed and symptoms are psychosomatic..lol. Funny how my "depression" always went away when they fixed my shunt. Sorry, I digress! Those surgeries were just abdominal and much easier than the shunt placement. The overdraining was a malfunction of my shunt, but it was at least 10 years old when that started.

I have a VP shunt now because the overdraining issue didn't seem to resolve. They tried ligating the LP shunt because had it set at 200 and thought maybe I no longer needed it, but the high pressure symptoms came back with a vengeance. I'm not familiar with the cisterno-atrial shunt that Deb mentioned, but may be worth a conversation with the neurosurgeon before doing the LP shunt.

Unfortunately, IIH is one of those rare diseases that isn't life threatening, so there isn't much research or information available. IHRF is the lead, so you may contact them (www.ihrfoundation.org) for other ideas.

Thanks for the well wishes. I had no idea the pituitary gland could be affected by chronic high pressure, so I'm just glad you had mentioned it. We'll see how true that is after my MRI..lol.

You guys take care, and let us know if anything else you need.

Julie
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PostSubject: Re: Friends and family    Thu Dec 01, 2016 5:08 am

all I know about that shunt is in that thread I posted the link to.  I flashed on that conversation while thinking about all the trouble your partner has had.  I remembered how the woman who posted on it was so thrilled with that particular shunt and was trying to spread the word about it.  I can try to contact her and see if she will write to you.  but it was several years ago so I don't know if she can be contacted through that site or not.

http://pubmedcentralcanada.ca/pmcc/articles/PMC4323899/
authors out of U Miami and Brigham and Womens in Boston.

yeah there isn't much out there.
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PostSubject: Re: Friends and family    Thu Dec 01, 2016 5:19 am

ask your partner's neurosurgeon about it.  he may know who he can refer her to for that shunt.  it does seem like she is a good candidate for it.  where in the country are you located?
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