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 Limbo hell

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mhaimowitz
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PostSubject: Limbo hell   Wed Apr 11, 2012 8:28 pm

All


My VP shunt surgery was scheduled for April 18th. Today I got word that my
VP shunt surgery is on hold. For 10 years I have high opening pressures by my
neurologist at UF Shands. On my most recent previous topic (VP Shunt Surgery
date) I posted that the Neurosurgeon at the Mayo Clinic insisted that I have an
LP by "Mayo" and that LP was normal pressure. He then had me see a
neuroopthamologist who did not see any papilledema (which I rarely have in the
past). As a result the Neurosurgeon at the Mayo Clinic is not convinced of the
diagnosis (which was made in 2002).



Now he wants to put me through another miserable test. He has ordered an LP
that remains in while my pressure is monitored over a 24-48 hour period while
in the ICU. He said that if this test shows high pressure then he can go ahead
with the shunt surgery. My biggest fear is that this test will be inconclusive
to him and then I am back to square one.



For a couple of years now my neurologist has been pushing me to have this
surgery and I have resisted in hopes that something less invasive could be
done. LP's and meds no longer manage my pain which normally is moderate when I
wake up and gets worse as the day goes on. By the middle of the afternoon and
into the evening it usually is nearly unbearable.



At 50 years old I can't keep going like this and can't imagine life
continuing as is. There has to be an end.



Regards


Mark
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Wylee
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PostSubject: Re: Limbo hell   Wed Apr 11, 2012 9:10 pm

Hi Mark,

What awful news. I thought for sure you were just around the corner from having a chance at pain freedom.

The lumbar drain test, which I had in June of last year, is not bad. Of course having the nurse come in every hour to take a measurement of how much fluid has been collected is rough if you are a light sleeper, but otherwise, it can be very effective in proving your point. As the pressure is slowly lowered over a few days and you show signs of improvement (I hope), then your ns should be convinced that regardless of the "number", the shunt is the way to go. That's what did it for me! And I am the first one (that they know of) that was given a shunt for my particular disease.

My advice, sign up for the drain test ASAP. My ns said you have to wait two weeks after having the lp in order to reduce the chances of getting an infection. Then you could get the shunt installed.

If your results are inconclusive, come on down to DUKE. The docs here understand what we go through and are willing to work with us. Especially given your history. LP's can only show the pressure at one given moment. That last one you had was probably right before your ventricle dumped a bunch of new fluid, so they caught you at your lowest point.

Don't lose hope, Mark. We'll get you better somehow!

Linda
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Heidi
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PostSubject: Re: Limbo hell   Wed Apr 11, 2012 10:53 pm

Oh Mark hug I feel for you I really do, but please don't give up hope. I know how hard it has been for you to come to terms with everything and then this has happened. I'm surprised that they are being so subjective , especially as for that particular day you might have been having a "good day", but the LP drain might do you a favour because it will prove in those 24-48 hours exactly what is going on with your CSF pressure. It has been well documented that you can have IIH without papilledema. I think you might find reading this Article on New Daily Peristant Headache interesting and helpful New Daily Peristant Headache which has a section on Raised CSF pressure headache.

In it, it does state that an LP should be done when a patient is symptomatic, maybe at the time of yours you weren't, which doesn't necessarily mean that you don't have IIH. You are not alone with having this kind of bombshell dropped on you, we also have another member who was diagnosed sometime ago, and has seen a different Doctor who says that she might have been misdiagnosed. Whether this is due to lack of knowledge or experience with IIH, couldn't be said, but we see time and time again, that there are Doctors out there that still have no idea as to the course of treatment or diagnosis of IIH.

Keep a regular log of your symptoms, try and stay positive, I know it's hard but it will give you the strength and determination to see this through. We are here for you every step of the way, and whatever happens will help and advise you all we can.

Heidi hug
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PostSubject: Re: Limbo hell   Thu Apr 12, 2012 6:58 pm

Hi Mark,

I'm so sorry that they seem to keep changing their mind about your treatment and have kept you in limbo. hug

I really hope they can do something for you soon xxx
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hunterofangels
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PostSubject: Re: Limbo hell   Thu Apr 12, 2012 10:54 pm

Hi Mark!

You have my deepest sympathies that you are going through this situation. I do hope that soon, your wishes are answered and you are granted some pain-free time. Please, keep us updated on your situation, and our thoughts and wishes and prayers are with you. Don't give up - you are never alone!

<3 Crissy
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Wylee
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PostSubject: Re: Limbo hell   Sun Apr 15, 2012 5:18 am

Mark, how are you doing? Did you get a reply from your doctor?

Hope you are feeling better and have a better plan of action. Darn doctors anyway!
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mhaimowitz
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PostSubject: Re: Limbo hell   Sun Apr 15, 2012 3:12 pm

Hi Wylee
My VP shunt was scheduled for April 18th (Wednesday). It is on hold until after the lumbar drain test. I am probably going into Mayo tomorrow or Tuesday (as soon as there is a bed in ICU). They said that I will be monitored for 24-48 hours. I am a bit down as I was ready for the surgery. It's sad to say but I am now hoping that the (extra unneeded) misery the next couple of days (not to mention the expense) will yield high enough pressures to go ahead with the surgery. I may be out of touch for a while as I certainly won't have my PC while in ICU and don't know whether I will be coming home after the lumbar drain or staying and having surgery. I am hoping that by this time next week that I will be recovering from VP shunt surgery but feeling uncertain. I will send you a private message with my cell phone number if you wish to call.
Regards
Mark
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mhaimowitz
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PostSubject: Re: Limbo hell   Sun Apr 15, 2012 3:27 pm

One other thing that I want to mention is that with the added stress of not knowing for certain my path I have had tremendous pain in my shoulders, neck, lower back and sciatica. I am having a body message (which I normally do once every month or so) in a couple of hours. I have never heard what affect if any message has on opening pressures. Again I hate to say it but I hope that it has no effect at all. Maybe someone can weigh in if they know.
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PostSubject: Re: Limbo hell   Sun Apr 15, 2012 5:23 pm

Hi Mark, it depends on what type of massage you go for. I got a deep tissue massage about two weeks ago cause I was in agony with my neck, back and shoulders. It did help relieve the pain with my neck and that and also my headaches eased but it only lasted two days and headaches where back. But it was nice to get some sort of relief Smile
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PostSubject: Re: Limbo hell   Sun Apr 15, 2012 10:14 pm

That's completely true..it does depend on what type of massage you get. There is a craniosacral massage that manipulates the flow of spinal fluid. Most of the research & specialists I've seen don't recommend it for IIH because no one really knows the cause/effect of the disorder. There are some practitioners that believe it would help, but I've never been brave enough to try it.

Generally, a regular massage will have minimal affect. I have some friends that are licensed massage therapists & they seem to think the main benefit is the affects of your relaxed muscles. From what I understand, relaxation reduces tension which in turn reduces inflamation. I also recently learned that myofacial release is beneficial because the tubing that encases the spinal cord & fluid is the facia /connective tissue in which our entire body is built..when it's pulled or tightened it affects your entire body & vice versa.

The bottom line with chronic pain is any relief is a benefit..it gives your body time to rest & heal. Pain causes tension, which leads to inflammation, so it should be a benefit. However, not every practitioner knows what they're doing & every person responds differently. Basically, if it hurts or causes any negative rebound affect, you may want to look into other options. There's an 'alternative therapy' section if you're interested in some of those.

I hope you're able to find some relief soon!
Take care,
Julie
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BananasMom
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PostSubject: Re: Limbo hell   Wed Apr 18, 2012 8:46 pm

Hi Mark ... by this time you are probably already in the hospital in the midst of the test, but I wanted to let you know my thoughts and prayers are with you, too. Smile

I've been following your story, but haven't chimed in much as I do not have any experience to share regarding shunts. But I actually think this is good ... being very certain they are doing the right thing BEFORE performing major surgery seems wise to me and would seem to be in your best interest. Hopefully, as others have said, this test will serve to prove your point, and they can move forward with shunt surgery and bring you some much-needed relief. Stay strong!
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Wylee
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PostSubject: Re: Limbo hell   Tue Apr 24, 2012 5:18 am

I spoke with Mark over the weekend. LP test is showing normal pressures. They are detoxing him from pain meds. Now for sure he's wondering what is going on.
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mhaimowitz
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PostSubject: Re: Limbo hell   Tue Apr 24, 2012 4:49 pm

Wylee - Thanks for updating everyone and for the phone call; it meant so
much to me.




I was released from the hospital last night. The determination from the
lumbar drain is that I do not have IH. They decided that the VP
shunt would not benefit so I didn't have the surgery.




They kept me in the hospital a week. The result of that stay is the
following.




Mayo believes that I do not have IH



They took me off Diamox and all narcotics



I had to have a urinary catheter that has remained in since day one (one
week) as a result of the lumbar drain's effect on my bladder and the light
anesthesia to place the drain.




They said it was too soon to remove the catheter; therefore sent me home
along with instructions for care (emptying, etc.).




I woke this morning with my left arm very swollen, red and painful, and
unable to bring my hand up to my face. My wife and sister (who flew in to be
with me) are concerned that I have gotten an infection as it is also hot to the
touch.




I am now waiting for a callback from neurology to take the stiches out from
the lumbar drain and to look at my arm.




To sum things up; I don't know if I have IH, don't know if I had it and it's
now gone, and don't know if I ever had it and was misdiagnosed for ten years.




The Mayo team of physicians discharged me with an apology that they were not
able to make me any better nor could they provide a new definitive diagnosis.
They told me to follow up with my neurologist (from UF Shands) to decide next
course of action and advised that Mayo has a renown headache specialist should
I decide to go that route (let their headache specialist decide future path
instead of my neurologist of ten years).




I will follow up with my neurologist in the next couple of days to make that
decision.




You all are now completely updated of my condition.



Regards your friend



Mark
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Heidi
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PostSubject: Re: Limbo hell   Tue Apr 24, 2012 5:15 pm

Mark hug so good to hear from you and I am so sorry that you're still having a pretty rotten time of it. You must be so angry and frustrated with all this and so must your wife be. I hope that your arm is back to normal and that nothing more serious is the cause for it swelling.

I am horrified you are not further on with this and have no definitive answers only more questions. I do hope that they continue to investigate what is happening and to give you both relief and answers. I am so pleased you and Linda managed to speak on the phone because I know how comforting that was.

Whatever the outcome, we will always be here for you Mark. Hopefully when you see your Neurologist he will be able to advise and help you further.

Thinking of you,

Heidi
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BananasMom
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PostSubject: Re: Limbo hell   Wed Apr 25, 2012 3:11 pm

Mark, I am so sorry that you have been through so much with this hospitalization, only to be left with more questions than answers and no relief of your symptoms. My thoughts and prayers are with you and your family. As Heidi said, regardless of whatever your status turns out to be with the IIH, I hope you will continue to stay connected with us here. Stay strong. *hugs*
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mhaimowitz
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PostSubject: Re: Limbo hell   Fri Apr 27, 2012 12:26 am

Hello and thanks for everyones support and understanding.
It turns out that I have blood clots in both arms. The good news is that they are not deep but rather are superficial. Im not certain if the treatment would have been any different. I have to give myself injections of Lovenox (blood thinner) twice daily in my abdomen for two weeks and use warm compresses on my arms a few times per day.
After a week managing with the urinary catheter they removed it and had me empty a few times to ensure that I would no longer need it. I was OK on my own for the rest of the day but woke at 3 AM this morning and was not able to urinate. I didn't worrie about it too much until the same happened at 6:30 AM. So I called my neurologist's office and they told me to come in to see what's going on. It turns out that I had to have yet another catheter to remain in for another week.
I am to follow up with my neurologist on May 1st to discuss next course of action and with my urologist May 3rd to determine I will need to be catheterized and if any further treatment is needed.
Now everyone is up to date on my status.
Regards
Mark
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Heidi
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PostSubject: Re: Limbo hell   Fri Apr 27, 2012 7:36 pm

Mark thank you for updating us on your progress hug I am so sorry though that you have this to contend with now. I hope that these problems you're having will be soon resolved and behind you. I hope both your Neurologist and Urologist will be able to shed some light on why this is happening to you.

I will be thinking of you.

Heidi
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mhaimowitz
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PostSubject: Re: Limbo hell   Sat Apr 28, 2012 6:12 pm

Thanks Heidi - I see my neurologist Tuesday afternoon and my urologist on Thursday morning. I hope that the diagnosis that the Mayo docs thought maybe accurate "Hemicrania Continua" is confirmed and I will be finally pain free. Below is a URL of a man in a similar circumstance that eventually was diagnosed with "Hemicrania Continua" and is living pain free.

[You must be registered and logged in to see this link.]

I wish that everyone has a pain free weekend.

Regards

Mark
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