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

Oh Mark 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

Hi Mark,

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

I really hope they can do something for you soon xxx

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

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!

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

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.

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

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

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.

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!

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.

Mark 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

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*

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

Mark for updating us on your progress 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

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.

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I wish that everyone has a pain free weekend.

Regards

Mark