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Newbie

Postby pseudotumor » Thu May 19, 2011 4:31 pm

Just thought i'd introduce myself. My name's Julie, i'm 23. I was diagnosed with a chiari malformation and syringomyelia at 15 after an imaging study due to migraines. This past year i've been dealing with pseudotumor cerebri in addition and am taking a crap load of medicine to deal with all my symptoms. A PFD was recommended when I was a teenager in Canada but my mother disagreed with several doctors advice and now that I live in the states it seems doctors don't agree with this surgury as much here, so I cope with spinal taps, diuretics, and narcotics. I feel awful on a daily basis, mostly fatigue and migraines and am having a hard time just dealing with living. I'm a student studying veterinary medicine, and though I don't have much in the way of hobbied these days, I used to enjoy drawing, painting, biking, and running. Though the ailments we share are not common, I had no idea before finding this website that they're even as common as they are, and I look forward to getting to know and support everyone.
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Re: Newbie

Postby karenb » Fri May 20, 2011 6:50 am

Hi Julie,

Welcome to the club that none of us want to be members of! My name is Karen, and I was dx'd with Syringomyelia in 2007 after 10 years of hobbling around, over a hundred bone dislocations in my feet, and years of general misery. Even though I don't share your particular problems, I do understand just how awful these conditions can be. Some of the folks on the board might have some suggestions for better ways of managing your symptoms - the treatments you've described don't sound like anything I've heard about (well... except for the narcotics!).

I really admire you for your perseverance in your veterinary medicine studies. You sound like one amazing lady!

Karen
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Re: Newbie

Postby Sinamyn » Fri May 20, 2011 1:49 pm

Hi Julie. As another newbie here, welcome. I'm still learning about this CM/SM stuff, as I didn't find out about mine until 2009, and listened to my NL who told me that's not the cause of my pain, fatigue, etc. Like you, I've given up some of my favorite hobbies, or had to really cut back on them. Right after my husband bought me my first personal bowling ball, bag & shoes so we could join a league together, the weakness in my arm became much worse and I've only been able to go bowling once since then.

Best of luck on your studies though! It's great that you keep pursuing that.
~Sinamyn~
Krystina
Wife, mom & stepmom
Lost in confusion, fear, and uncertainty.

"If we weren't all crazy, we would go insane." -Jimmy Buffett
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Re: Newbie

Postby pseudotumor » Fri May 20, 2011 7:58 pm

Karen and Krystina,
Thanks for the welcome. I would have thought spinal taps were one of the most common treatments to reduce syrinx size. Not that i'd recommend them - they suck and hurt really bad. The diuretic I understand not understanding since the nervous system is a closed system but at any rate, I try whatever I can. Going to school is tough (as is most things), but the thing that scares me is the thought of spending all my time to finish school only to be worse and not have the energy, pain tolerance, or steady hand to hold a scalpel or lift things.
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Re: Newbie

Postby karenb » Fri May 20, 2011 10:53 pm

Julie,

I had my first spinal tap when I was barely 35 - just 1-1/2 years into my "pre-journey" - I was willing to do anything to try to feel better. Ultimately, they didn't help, I was finally dx'd, and finally had to stop working about a year later. On the other hand, my first Physical Therapist first dealt with SM during his PT internship - at duke - 40-some-odd years ago. His patiend was the chairman of GM!

I still don't have a pain management doctor, but found a reputable local doctor today. There are no openings for over a month, so I'll have to go off my meds cold turkey shortly before the appointment, but I'm hoping for some positive results. In the meantime, it's just one day at a time.

Karen
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Re: Newbie

Postby *Hope* » Sat May 21, 2011 5:16 pm

Hello and welcome to you both!! :) I'm sorry you both are struggling right now, but I think you'll find the boards very helpful.

This will be short since I'm in a quite a lot of pain right and now and am laying down reading the boards. I had to log-in to comment on the spinal-taps. Those can be a HUGE no-no for Chiari patients. I have been told that removing fluid can cause further brain herniation in some cases. You really need to research them, and talk to a NS who is very experienced before you proceed with any more taps. Maybe even make another post just about STaps. I know plenty of people on here might know some concrete info on the subject. I'm no expert or doctor, so be sure to do your own leg-work on the subject. I haven't read about anybody else getting regular spinal taps on these boards for treatment of their SM either. That's not to say that it's never used, but I've been on here a few years and you'd think we'd hear more about it. I truly do hope you get some relief from some sort of treatment. Lord knows we could all use a break! ;)

I hope you guys like the boards and find lots of info, friends, and help here. Don't be afraid to post any questions or vent on here anytime. Talk to you later! :)
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Re: Newbie

Postby pseudotumor » Sat May 21, 2011 10:40 pm

Hope,
Thanks for your thoughts, I suppose I should clarify, in addition to syringomyelia and Chiari I have 'pseudotumor cerebri' or 'idiopathic intercranial hypertension' so the spinal taps are the only way to monitor (and if needed - remove) all my excess cerebro spinal fluid. If I don't the syrinx just gets bigger causing more nerve damage, and the pressure gives me such migraines that I'll be hospitalized. The last time I had gone so long without being checked on that all of a sudden I woke up with a migraine so bad that I was throwing up and had to go to the ER. To make the situation worse I was on a trip visiting in Boston and had to go to an awful awful hospital in Cambridge where they took 6 hours to even get some pain meds for me.
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Re: Newbie

Postby karenb » Sat May 21, 2011 11:08 pm

Hope & Julie,

Just to clarify - it wasn't until I found this board that I found out that spinal taps were a big no-no. My instructions following my diagnosis (just 4 years ago) were "do not climb ladders or step stools, do not lift anything over 5 pounds, don't bend, stretch, twist, or reach, ... and here's the script for your walker."

The spinal taps were done 11 years ago - 3 over a period of 4 weeks - I was so desperate for relief from my extreme pain & bone dislocations that I was willing to do just about anything in hopes of relief.

Karen
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