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 Should I be panicked?

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medmisfit
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PostSubject: Should I be panicked?   Thu Jun 14, 2012 10:17 pm

I just got my new programmable valve in April and was doing ok, but my clumsiness fell last Friday and now I'm concerned I've messed it up. I don't suppose anyone else has taken a header six weeks post surgery??

:doh

I really am so frustrated with myself I could scream! I feel so much better I'm trying not to panick, but I've woken up w/ a headache every day this week and today I feel awful. I still am having headaches when I lay down for long periods of time (overnight), but they seem to be taking longer to get rid of once I'm up. My eyes started hurting this week..today my vision and brain are a little fuzzy. I know a lot of people here are complaining about sinuses and allergies, so there's that possibility. I've also been on antibiotics for 18 days because I have an absess that won't go away, so could be meds. The surgeon said the valve may need to be tweaked, but I'm sure he wasn't talking about anyone doing a complete somersault on concrete..of course it was over my incision side. I felt fine the next day and just had a couple of small bruises, but every day has seemed a little worse. I don't suppose I can get a sinus infection while I'm taking antibiotics..I know different meds focus on different areas, so maybe?? UGH! Oh, and I also tried to be in the sun for 15-20mins on Saturday and ended up w/ sun poisoning..I'm a hot mess and really sick of it! Is it just me or does it seem to be just one thing after another w/ this disease?? Nothing can ever be easy. I'm a clutz so I run into stuff, drop stuff, fall down; my immune system gets compromised so I end up w/ an absess; I can't exercise w/o getting a headache so I keep putting on weight no matter what I eat..I am seriously at my wit's end today!!! For the first time since my surgery someone said "you look sick " and honestly I think it just totally freaked me out!

I guess I just wanted to know if anyone's had to have thier programmable valve/shunt adjusted..did symptoms come on gradually or were they immediate? I would say this has been a subtle increase since surgery, but sped up after my weekend of mishaps..sound familiar or am I bound for another job losing surgery??
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Sophiasmom
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PostSubject: Re: Should I be panicked?   Fri Jun 15, 2012 6:12 am

hi; I don't have a shunt and don't know how to answer your question but it does sound to me like you need to go see the neurosurgeon and tell him how awful you have been feeling since the fall. If you get an LP then you will know if it is not working. or can they just tap the shunt to see your pressure? with all the symptoms you are having I would rule that out before I start thinking it's a sinus infection. antibiotics for abscesses do tend to treat sinusitis though.

I do understand the one thing after another part of this illness. just when I think I have a handle on things then there's always something else. I spend my whole life "putting out fires". I'm sorry things have been rough. doesn't FMLA protect your job?
Deb
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PostSubject: Re: Should I be panicked?   Fri Jun 15, 2012 4:09 pm

Julie I did have a programmeable shunt when I had my first shunt revision, however, in my case it blocked 6 weeks later. I know from having it in the beginning my pressure was still a little high and my Neurosurgeon tweaked it and within a couple of hours it seemed to be a lot better. When it blocked the effects were almost immediate although I couldn't pin point exactly when it blocked but I knew in a short space of time.

I think for peace of mind and to sort out these headaches and symptoms it would be better for you to contact your Neurosurgeon, who can then investigate it further and tweak it if that be the case. Try not to worry too much, but give him a call so that he can put an end to the worries and stress you have about it too.

Let us know how you get on.

Heidi hug
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PostSubject: Re: Should I be panicked?   Fri Jun 15, 2012 6:51 pm

thank you for the responses and support ladies! I really do not like being and feeling so negative, but I sure seem to be ranting a lot. I guess I forgot how exhausting the chronic pain can be..the relief from pain, clumsiness, cognitive issues ,etc was so AMAZING I'm just hoping we'll figure it out again.

I actually called the surgeon yesterday and they just called me back. They're sending me for a shunt series to make sure I haven't loosened or dislodged anything. My surgery follow up is Tuesday, so the nurse said we can talk more about it once he sees the x-rays. I felt a lot better this morning, but my spine is starting to hurt again..hopefully I just jarred myself and it's all just soreness

Deb, thanks for the antibiotic info. I thought they'd given me a sulfa drug for sinusitis in the past, but have taken so many I'm never sure. FMLA gives you 12 weeks a year, but I already used 5-6 with appointments and surgery..I just renewed it in April, so concerned I'll run out. My employer hasn't been overly supportive, so I'm guessing they won't give me a lot of leeway..it'll be fine, I'm just a worrier. When a door closes a window opens, right??
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PostSubject: Re: Should I be panicked?   Fri Jun 15, 2012 6:59 pm

Oh my, Julie, I am so sorry to hear about your recent changes. I do hope that the appointment next week will provide you with the answers that you need.
Try to keep stress level down in the meantime. Just a few more days that you have to go through. Listen to some soothing music, take a warm bath...........you know the drill. hug
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PostSubject: Re: Should I be panicked?   Sun Jun 17, 2012 5:41 pm

Thanks Linda, I'm definitely back into the 'one day at a time' mode. The pharmacist & reiki practitioner I see both think changes are more related to my intolerance of meds..I just finished my 20th day of antibiotics, which is crazy considering I always have side effects. They're thinking because it's made me so sensitive to the sun I get sun poisoning just driving to work & walking 50ft into my building that it could be causing a lot of this other stuff..rare, but could happen seems to be where I live..lol. I'm using old fashion home remedies for absess moving forward & hope other symptoms will improve. Just trying to focus on the fact that I still feel much better than I did!
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PostSubject: Re: Should I be panicked?   Sun Jun 17, 2012 8:17 pm

you may know that doxycycline and other tetracyclines can increase ICP. but I just found info that Sulfa antibiotics can also cause intracranial hypertension. this seems counterintuitive because Diamox and Topamax are also sulfonilamides.
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PostSubject: Re: Should I be panicked?   Mon Jun 18, 2012 12:15 pm

hello

I had a vp shunt fitted the start of may and i had a fab few weeks but i couldnt ever sleep laying down
then i i got worse and Heidi told me to go AandE and after a week in hospital they finally changed my shunt from 1.5 to 1 this was done on friday. at the mo i would say it has helpped so so so much as my eyes are doing so well and i am back on my computer

i also have trainned in reiki and i do use it to try and relax me and releave my symptoms but i dont its never cured me :(

anyway i hope your shunt is fine and you just need a tweek xxx


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medmisfit
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PostSubject: Re: Should I be panicked?   Mon Jun 18, 2012 5:29 pm

Deb, that would make me so happy! If Sulfa antibiotics increase ICP, my symptoms make total sense..I'll look into it and mention it to my doctor, thanks!

And, thanks for the support VDubs..reiki is awesome, but definitely short lived!
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PostSubject: Re: Should I be panicked?   Mon Jun 18, 2012 10:31 pm

your very welcome hunny bum


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medmisfit
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PostSubject: Re: Should I be panicked?   Tue Jun 19, 2012 10:35 pm

Just got home from Cleveland Clinic, & nothing but good news..whew! My x-rays showed everything is right where they left it..lol. Surgeon said I could have jarred the system with fall, but all seems connected & fine now. He mentioned that I may not even have a Chiari Malformation as previously diagnosed. He said it seems to him that brain was just sagging from lack of fluid..only time will tell, but I'll take it! He also confirmed the headaches I get laying down are typical with the pooling that happens in that area, but even seemed to think that could improve. He was VERY pleased with progress & told me to give it time. I dealt with low pressure for three years, so may take time to resolve some issues. Basically a big sigh of relief for me! I love this man..he completely validated my concerns & explained every little thing. They told me to take it easy & be gentle for another couple of months, but I'm released to do whatever doesn't hurt. We reviewed all my symptoms pre-surgery & I have improved by leaps and bounds..just can't let the worries get to me & need to stop waiting for the other shoe to drop!

Thanks for all your support!
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PostSubject: Re: Should I be panicked?   Wed Jun 20, 2012 5:07 am

well, waiting for the other shoe to drop is kind of normal in our world so don't beat yourself up about it! when you are constantly being confronted with disabling symptoms and having to struggle to just do minor things, of course you might get a little uptight. you are in a constant struggle for survival, basically. so, fight or flight is just where we live.

SO glad you have a good doc, that is fantastic!
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medmisfit
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PostSubject: Re: Should I be panicked?   Wed Jun 20, 2012 4:10 pm

Thanks Deb! It took me 10 years to find him, but it was well worth the wait!
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