shunt surgery tomorrow

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Re: shunt surgery tomorrow

Postby reedy » Sat Nov 19, 2011 12:04 pm

Have you tried keeping your coffee consumption high? It can interfere with sleep, but it does seem to do good things for CSF. I decided to Google this to check up on what Dr Heiss told me and it looks like there is benefit to caffiene if you've got brain trauma:
http://www.nature.com/jcbfm/journal/v28 ... 0539a.html

or this http://bja.oxfordjournals.org/content/91/5/718.long , which says:
Caffeine
Caffeine is a central nervous system stimulant that amongst other properties produces cerebral vasoconstriction. I.V. caffeine 0.5 g was recommended as a treatment of post‐dural puncture headache in 1944.62 It is available in an oral and i.v. form. The oral form is well absorbed with peak levels reached in 30 min. Caffeine crosses the blood–brain barrier and the long half‐life of 3–7.5 h allows for infrequent dosing schedules.

The most frequently quoted work on the treatment of post‐dural puncture headache with caffeine is that of Sechzer.113 114 He evaluated the effects of one or two 0.5 g doses of i.v. caffeine on subjects with established post‐dural puncture headache. There are some statistical and methodological flaws in this study, but it was concluded that i.v. caffeine is an effective therapy for post‐dural puncture headache.
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Re: shunt surgery tomorrow

Postby MichelleW » Sat Nov 19, 2011 4:00 pm

The nurses did say that they used to treat people with IV caffiene but that they no longer offered that as a treatment for the low pressure headaches.

But I tell ya, coffee and coke are slowly becoming my best friends...

It really makes a difference and I actually found that tylenol migraine (tylenol with caffiene) is a great pain reliever for me too.


I just don't wanna have to up this caffiene consumption forever... i really need sleep too!!!

But if it helps the headaches in the mean time, i can live with being awake when I should be sleeping!
SM C1 to T8 15mm wide
Subarachnoid shunt 9/9/09 FAILED
Syringopleural shunt @T1-2 18/11/09.
Syrinx collapsed even more, revealing SUBARACHNOID CYST at T5/6
2nd syringopleural shunt planned for 11/2011
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Re: shunt surgery tomorrow

Postby gunflint » Sat Nov 19, 2011 8:44 pm

I am very happy for you. It's so nice to find something that helps.
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Re: shunt surgery tomorrow

Postby Sueli » Mon Nov 21, 2011 7:49 pm

Dear Michelle!

I'm so glad you are home! I hope the low pressure headache is a little bit better, day by day. A long while back, I thought I read about a medication that caused one to increase the amount of csf that the body produces. I couldn't tell you what it was, but perhaps someone on the board knows of it.

Please heal and rest. Our thoughts and prayers are with you!

Hang in there!

Sueli
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Re: shunt surgery tomorrow

Postby Sueli » Sat Dec 03, 2011 8:55 pm

How is it going? Hope you are ok...
I'm having some residual leg pain, but hanging in there.
Keep us posted.
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Re: shunt surgery tomorrow

Postby MichelleW » Sun Dec 04, 2011 11:57 am

Thanks for asking Sueli....

I am doing ok but dealing with post-op muscle spasms in my back.

I started with physio on Tuesday and by Thursday told them to cancel the rest of my appointments. Only three weeks post-op they wanted me on exercise equipment doing weights to 'loosen up' (25+lbs benchpress and 60+lbs leg press). I told them obviously they don't understand the extent of the surgery I had only 3 weeks ago and walked out. Considering the NS wanted me there for 'balance retraining' and they told me I didn't need that, they opted for an exercise routine to loosen things up. Well, no kidding Sherlock!!! Of course my shoulder blade is spasming...I just had a surgical incision right through that muscle.

So, I'm working hard on taking it easy and stretching as I can.

The headaches seem to be doing better. I had a little setback yesterday because I wasn't drinking much water and ended up dehydrated and could tell right away because my head started hurting. It's all a learning process.

Other than that, I've stopped taking the baclofen because I am having an allergic reaction to something and can only assume it's the baclofen. My legs are spasmed up pretty bad, but I'm still managing to get around ok.

Healing from a surgery like this is a long process, but hopfully the reward at the end is worth it!
SM C1 to T8 15mm wide
Subarachnoid shunt 9/9/09 FAILED
Syringopleural shunt @T1-2 18/11/09.
Syrinx collapsed even more, revealing SUBARACHNOID CYST at T5/6
2nd syringopleural shunt planned for 11/2011
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Re: shunt surgery tomorrow

Postby gunflint » Sun Dec 04, 2011 4:48 pm

Physical therapy seems to be answer for all that ails. I went for 10 weeks for the arm pain I was having. Of course anyone with SM knows how well that worked out. I tried it for my lower back several months before that. The pain was almost unbearable. I agree that PT is beneficial in a lot of cases however I also believe that it's way over prescribed particularly when the physician is at a loss for treatment.
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Re: shunt surgery tomorrow

Postby Janice » Mon Dec 05, 2011 12:07 pm

Hi Michelle,

I can't imagine trying to bench press at all, least of all, so soon after surgery starting at that amount.

It's bizarre that you had to stop the baclofen. A while ago, I was taking it for charlie horse type spasms in my spine & thighs. I started at 10 mg, up to 50 mg. For me, shortly after beginning 50 mg, my spasms began to relax but I began having an adverse reaction to baclofen. I had to stop taking it, but it was alright because the baclofen had done it's job & the spasms were gone.

Once a month or so, I still get those horrid spasms. I start taking 20 mg's of baclofen, right away. I only need a few doses if I start taking it as soon as I feel the spasms coming on. I don't want to stop the med all together since I tried over a dozen meds having an immediate reaction so they were all useless to me. At least I can take Baclofen on a short term basis, at a lower dosage.

I hope you can find something to help those spasms. For me, they were a nightmare.

Take care, love & hugs!
GOD Bless!
Janice

Thoracic: SM T3-T12 / Disc Buldge T7-T9 / Mild Scoliosis
Cervical: SM C2-C6 / DDD / Kyphosis
Hemangioma's: T9-T11 & L4

http://janice-mylifewithsm.blogspot.com/ (Copy & Paste link into your browser)
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Re: shunt surgery tomorrow

Postby Sueli » Wed Dec 07, 2011 8:04 pm

Dear Michelle,

I'm so glad you are a little bit better from surgery. I'm shocked the PT wanted to use weights with you! My NS actually said NO to PT. He said Idiopathic Syringomyelia is so rare that a PT wouldn't know what to do with me and could actually harm me. He suggests do whatever you think you can , then do 10% less than that.
About the Baclofen, I don't know...but I use very low dose valium (1/2 a 5 mg). It helps a bit.

I sort of regret not doing the syringopleural as I still have problems with walking. But, I did notice a tiny bit of improvement in pain level. He said recovery is 6 months to a year.

But , watch out for PT. Don't get hurt!

Happy Holidays and get stronger everyday!!

Sue
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Re: shunt surgery tomorrow

Postby Sueli » Wed Dec 28, 2011 11:33 pm

Hi Michelle!
Hope you and yours all had a great holiday! Wondering how post op is going...

As for me, I feel great regret over choosing the smaller shunt...

I should have listened to you.

Tell me how It's going..

Sueli
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Re: shunt surgery tomorrow

Postby MichelleW » Thu Dec 29, 2011 11:25 pm

Hi...

Things here are going well.
I have very little pain left from the surgery itself. The muscle spasms have pretty much ended and I am back to doing almost everything I could before surgery.

We had a great Christmas and it was nice to be feeling somewhat decent.

The headaches have gotten a zillion times better, today being the only day I have suffered with a headache in over a week. (and I think it's PMS)

I still have a few moments of lung pain, and I get short of breath easily, but those are few and far between and the shortness of breath is eased with stretching.

I see the NS for a followup on Jan 3rd, and I will post an update after my appt!

Hope you had a great Christmas too!
SM C1 to T8 15mm wide
Subarachnoid shunt 9/9/09 FAILED
Syringopleural shunt @T1-2 18/11/09.
Syrinx collapsed even more, revealing SUBARACHNOID CYST at T5/6
2nd syringopleural shunt planned for 11/2011
MichelleW
 
Posts: 185
Joined: Thu Jun 18, 2009 12:09 am
Location: Moose Jaw, SK, Canada

Re: shunt surgery tomorrow

Postby pmaxwell » Fri Dec 30, 2011 11:54 am

Michelle,

It is good to hear things are coming along so well and in really quck time too. Be sure to take it easy and give your body plenty of time to heal. Baby steps! :)

best wishes,

Patricia
Together We Can...
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Re: shunt surgery tomorrow

Postby Catrine » Sat Jan 07, 2012 8:00 am

Michelle,

It's great to hear you are feeling better. Gives me hope that my spinal shunt surgery, when it happens will help.

Take it one step at a time!

All the best and happy new year,
C
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Re: shunt surgery tomorrow

Postby reedy » Sun Feb 05, 2012 8:38 am

MichelleW, just wondering how you are doing?

Looks like I'm heading towards another surgery - this time a syringopleual shunt. Its a bit scary, to be honest.
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Re: shunt surgery tomorrow

Postby MichelleW » Sun Feb 05, 2012 5:18 pm

Doing good recovery wise. Not much change to my pre-op symptoms though.

I remember very vividly the first time I was told I'd need a syringopleural shunt. It was very scary!

Thankfully I have been very lucky both times to recover well.

I wish you all the best with your surgery!
SM C1 to T8 15mm wide
Subarachnoid shunt 9/9/09 FAILED
Syringopleural shunt @T1-2 18/11/09.
Syrinx collapsed even more, revealing SUBARACHNOID CYST at T5/6
2nd syringopleural shunt planned for 11/2011
MichelleW
 
Posts: 185
Joined: Thu Jun 18, 2009 12:09 am
Location: Moose Jaw, SK, Canada

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