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 Just plain worried

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Raclawrence3

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PostSubject: Just plain worried   Wed May 09, 2018 5:31 am

Hi all, i decided to join this forum because i needed support or answers from people who are going through or have gone through what I am.

Its been a whirl wind 2 months to be honest. I have had migraines for about 10 years but two years ago I notices my symptoms changing including eye sight, where my pain was located and different little random symptoms. After tell my neurologist these things for two years he had not run and more testing or change meds so i learned to live with what I thought were normal people migraines.

Back to two months ago I was getting a new pair of prescription glasses and my optomotrist noticed severe swelling in my optic discs and nerves. She sent me to the opthamologist who ran a series or test for hours then sent me for and mri and mrv diagnosing my with IIH psuedotumor cerebi. Finally after years my neurologists atarted listening to me, sent me for a spinal tap which relieved the pressure for about 2 days. However since my opening pressure was 39 she did not want me to get a tap again and sent me to the neurosurgeon. He is amazing and got me an appointment the next day. He came in with a plan to do the LP shunt because my ventricles are too compressed to do the VP shunt. He drew me a picture of how everything will go and now I am scheduled for the 18th of this month.

Now that I have had time to sit and think I am full of questions that I hope maybe someone can answer. I am a mother of three, how has your recovery gone and did it take long to recoop? I have read way too much on google (huge problem of mine lol) what should I look out for is something is wrong after surgery emergency wise, my surgeon is over an hour away so i dont want to bother him and drive so long if I am just scared. Maybe just all in all how did everything go for you guys?

Thanks in advance
Rachel
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medmisfit
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PostSubject: Re: Just plain worried   Wed May 09, 2018 4:06 pm

Hi Rachel, welcome to the forum! I honestly had my LP Shunt implanted almost 20 years ago, so don't remember much. I also had a complication, so I know my story is a little different. I think they're still taking 4-6 weeks for recovery. You will definitely be sore, but I remember more issues with soreness in my stomach than my spine. They fish the catheter into your abdominal cavity, so a lot of things are moved around. I think my IIH symptoms subsided fairly quickly though. I did have to have a couple revisions because my shunt was overdraining, so I would just watch for symptoms to return and get it addressed as soon as you notice any changes.

I am wondering if they tried any medications or other treatments. I know treatments vary based on physiology, medical history, etc, but it seems pretty extreme to go from nothing to surgery. I would just make sure you've discussed all the treatment options and possible outcomes before having surgery. There is information regarding alternative therapies, medications, other procedures and surgeries throughout the forum, so take a look and let us know if you have any questions.
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Raclawrence3

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PostSubject: Re: Just plain worried   Thu May 10, 2018 12:30 pm

Thanks for replying to me. They tried diamox for it, I had already previously been on topamax (sorry my spelling is horrid), neither of which helped just made me violently sick.

My current question is until surgery I am unable to have a spinal tap, do you know anything I can try at home to get some relief from the high pressure headaches? I can almost deal with hearing my heartbeat at all times in my ears but the pressure this morning is outrageous.

Thanks, reading everything on here has helped me out tremendously!

Sent from Topic'it App
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mrwhipple

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PostSubject: Re: Just plain worried   Thu May 10, 2018 5:05 pm

If thing's are painful you can get serial LP's -  I tend to get one as soon as my vision gets effected at one point I was getting one every couple of weeks.

For pulsatile tinnitus I find donating blood really helps (lowers BP and changes composition of blood)
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medmisfit
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PostSubject: Re: Just plain worried   Fri May 11, 2018 2:51 pm

I'm glad they at least tried medications! I couldn't tolerate them either, so glad there were other alternatives. I ended up losing too much spinal fluid too quickly and having seizures following my LP Shunt implant, so it's probably best they're not going to drain fluid with a spinal tap before surgery.

I have found a few things that help with high pressure, but it varies for everyone. I find that laying on my side and propping myself up with pillows at 45-60 degree angle helps. It's a bit of trial and error to find your sweet spot, but it does reduce the pressure. I also have an eye pillow. I had to play with the content and weight, but it's made of satin so the coolness and little bit of weight provides much needed relief to my sore eyes. A cool, damp cloth can also help. I use a heating pad at the base of my neck, but others prefer cold and mentioned placing a soda can there. I know caffeine is supposed to be used for low pressure, but you also may try it if you feel a bad headache coming on. Stress and muscle tension can bring on other types of headaches, so it can at least take the edge off some times if used sparingly. Also, try to avoid processed foods because they cause inflammation and contribute to pain. That's all I can think of off the top of my head, but I hope you find something in here that helps.

Please keep us posted on your progress!

Take care,
Julie
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