Extreme Dizziness/Nausea/Vertigo

[Sug_97]

I've posted before with questions. I'm 2 years post-op and I'm awaiting a second surgery to repair/replace my duraplasty and install a shunt. I'm not sure all that the second surgery will resolve, but the build up of fluid around and in my cerebellum is the only problem my NS is seeing in my MRI. I have other non-related problems that I need to get resolved before I can have my second surgery, so I'm hoping for mid-February at the latest.

However, I started getting so dizzy and nauseated on Wednesday night. It was really bad on Thanksgiving and yesterday. Today, it feels a little less. I've had the dizziness/nausea/vertigo before, but never this bad. I basically get motion sickness whenever I walk or move. I'm fine sitting/laying still, as long as I don't close my eyes. When I close my eyes it feel like the whole room is spinning. I'm sure it's the dizziness that's causing the nausea. When I had to ride in the car it was so bad. I get heaving and had to have the windows down even though it was freezing cold. Anyone have this or know more about it?

[selmaS]

  Fabulous news...good luck <3

[Sug_97]

Decompression by far took the longest to heal for sure. Stay on top of things and keep pushing your NS and PCP to give you the care you need. You will be in my prayers.

[Sug_97]

I contacted my NS about the rubber-band feeling and questions concerning my spinal cord and he wants to do another MRI. I'll keep you posted!

[selmaS]

  Hi and welcome to the Chiari forum.

Was ur decompression for Chiari? I know there r diff types of decompressions and reasons for having them.....

Since it is so soon in ur recovery, ur NS should be available to see u if u r having issues, so call the surgeon that took care of u and ask to be seen...

[jchree71]

oh my, you have been through so much! i have been researching vertigo and nausea and found your discussion. You are an amazing women! I had my Decompression in late Jan.2013 and was feeling great but in the past 3 weeks am back in bed feeling horrible dizzy with nausea and a piercing headache. cant get into a NS and my pcd knows nothing. im so frustrated!

[selmaS]

  Call around to diff Rheumatoid Drs in ur area and see if they treat EDS...there r several types and not all have the issues with the skin....so do pursue this.

Does ur BP change with position?...that would be a POTS symptom...one of them...and blood pools in the lower extremities.

A tilt table test is done for POTS.

Keep a journal of what is going on to see if there are changes and if what u do affects u and so u can show the Dr....many times we forget an issue we dealt with for a day or two when we go to the Dr and then it may crop back up after the visit so keep track of things and it may help ur Dr figure this out or a new one too.

[Sug_97]

Yeah, this surgery was pretty spontaneous. My GI had a CT scan done and found the problem with my abdominal shunt. It didn't hurt, but it did get uncomfortable as it collected more and more fluid outside of where it was supposed to go.

I've talked to my NS about the low pressure HAs and the pulling but it seems like he's lumping it all together. I've had the full spinal MRI a couple years ago and nothing else was wrong. They haven't given me any tests on EDS or Pots, only the run around. The neurologist said my skin doesn't look like EDS and he wouldn't know where to send me to be tested for it. He mentioned connective tissue, but then shrugged it off because of my skin.

This rubber-band feeling is different from the low-pressure problems I've had in the past.

[selmaS]

  Oh goodness I had no idea u had to have another surgery....did they check u for tethered cord? Or scar tissue..have u told ur Dr about this?

I have TCS and it does feel like pulling like that ..a rubber band is just how I describe mine.....

Did they rule out Ehlers-Danlos for u...POTS?

Are u keeping hydrated? Drink plenty of water while u have these low pressure HA's....did ur Dr give ne indication as to how long u may have these?

I have not heard of this pulling as a result of low pressure., but that does not mean it is not related....just that I have not heard this issue related to that.

I hope u r feeling better soon <3

[Sug_97]

You're always so good with advice...

I felt fabulous for about four months, then my shunt came out of my peritoneal cavity. The pocket of fluid was forming under my skin instead and I had to have another surgery to fix the bottom portion of the shunt. Once it was back in the right place my NS warned of low pressure headaches for the first several weeks... that was 11 days ago.

I am having these low pressure headaches, as it only hurts when I sit or stand and when I'm laying down, I feel perfect, but I'm also having this tightness from the back of my neck when I'm up. It feels like a giant rubber-band from the back of my head downward (like it's making it real tight and hard to move my head forward).

Have you heard of this before and do you thinking it's related to the low pressure?

[AnnieDear]

That is so good to hear! Fingers crossed for continued improvement :)

[selmaS]

  I just wish I had known and I would have posted a Prayer thread for u....sending prayers now as well as sending Healting MoJo for u : )

[Sug_97]

Selma, you should never feel bad... you are an amazing support for so many going through this. I can't tell you how much I appreciate you!

[selmaS]

  Thanks for the update....I had no idea u had the surgery....did I miss something?....I feel bad that I didn't know...but so glad for u that u r feeling so much better.....abs side....I am sure that all will heal too.

Fabulous news !!

Keep us posted on how u r doing sending u some healing MoJo for those abs : )

[Sug_97]

Before my surgery, my NS explained that the shunt was basically a shot in the dark and that it was his hopes that if the shunt could keep the fluid drained from my incision site, it would eventually drain out of my cerebellum. He said it may take about 6 months.

Well it's now been 3 weeks since my surgery and from the time the anesthesia wore off, I could tell the vertigo was gone. At first I was in a lot of pain, since the shunt required "tunneling" through the tissue to get it to my abdomen. I ended up needing three incisions: they reopened part of my head again to put in the top catheter, they put another catheter into one of my abdominal muscles (my peritoneum which is about five or so inches to the right of my belly button), and they had some trouble putting the shunt through around my collar bone, so I have an incision there too. I chose to go home the day after my surgery and at they gave me Morphine, Percocet, Valium, and some nausea meds. At first I needed them, but after a couple days, I was just on Ibuprofen and an occasional Valium. At first when my head was draining, it felt like butterflies flapping their wings in my head; then I'd feel my abdomen start to swell a little. A week ago Tuesday (1/8/13), I had a headache and muscle spams really bad. I took everything I had to take, but I forgot to take the nausea med and ended up throwing it all up. Funny thing is, the heaving made my neck and head feel better. I have a bit of a cold right now, so I'm been coughing and sneezing. That hurts my abs and I take Ibuprofen, and NyQuil or some Tylenol for the other cold symptoms.

Right now, I honestly feel sorta Chiari free, for the first time in over 12 years. Just waiting for my abs to heal and I'm so ready to press on and hopefully start a whole new chapter in my life!

[Jorlex37]

Very informative post!  Hoping all goes well and you soon find relief!!!

[AnnieDear]

Thinking of you this morning! Praying that this surgery goes well and you feel much better!

Annie

[Sug_97]

Met with my NS today and had my pre-op appointment. He showed me my MRIs and how they compared to my 12/2010 and 4/2011 MRIs... and I think I have a better understanding now. Basically, my previous MRIs did show a pocket of fluid at my operative site (which is slightly bigger now). The main difference is I now have a large pocket of fluid inside of my cerebellum (it's almost balloon shaped, with the tip of it pointing towards the outer pocket of fluid at my operative site) and he believes it's probably being absorbed into the cerebellum because of it's location. He's not sure if the fluid is the source of my vertigo problems, but he knows there shouldn't be a build up of fluid inside my cerebellum. So he's not going to mess with the patch at all. He's simply going to put the catheter at the operative site near the cerebellum and believes that as that drains to my abdomen, the fluid will drain from my cerebellum and eventually drain through the shunt as well. The shunt insertion is called suboccipital pseudomeningocele to peritoneum and I will be having it Friday morning at 8:30am. Should only be in the hospital until Saturday or Sunday.

Then 6 weeks later, I will have another MRI to see if it's draining properly. He said that it may take several months to see if there's going to be any improvement from it, but that it's the only thing they can see that can/should be corrected anatomically and after that, my neurologist will have to help me medicinally, but I have high expectations... still!

[iren182]

Do you have some experience with Diamox?

[BB11]

I'm sorry you're still experiencing symptoms. Hopefully your surgery will help. I will keep you in my prayers. Hugs!  

[Sug_97]

I still have vertigo, while it's not as bad, I can feel the pressure building in my head. I've opted to have my shunt surgery on December 28th.

[selmaS]

  Glad that was ruled out....does ur NL work with ur NS? If so, they should forward all the info to ur NS for u and that should clear u for surgery.....

  Keep us posted as to what is going to be ur next step and when.

[Sug_97]

I saw the ENT today (she's actually a neurotologist, so she really knew her stuff). She ruled out bppv and any other ear problem, and she disagrees with my neurosurgeon about the build up of fluid not causing the vertigo. She even said that they get about three people with bppv a day and it's usually people having problems when they roll over from one side to another in bed, not full instability like what I have. She says when they get someone with my symptoms to be checked for bppv, it always ends up in the long run that they have Chiari (which we already knew going in).

I'm going to email my neurologists with a few more questions and then probably schedule my surgery. (My infection is gone, so I'm now eligible for the surgery again.) I'm hoping this is the last surgery I end up needing, so I just want my neurologist to look over my MRIs and maybe take another one, to try to ensure that everything is taken care of this time.

[selmaS]

  Hi,  Tina.....thanks for sharing, and it is good to see u on again it's been a while.....

How have u been?

[dpulum]

I had all of the motion/balance issues that you mention before my surgeries, I also experienced intermittent blindness.  I also was motion sick all day, everyday and had horrible balance issues and tremors.  I had CM with a large herniation and disc issues (cervical stenosis) at 6 & 7, so I had decompression surgery and spinal fusion on the same day.  I don't know which surgery fixed the problem, but one of them worked.  I almost never have these issues anymore and my balance was restored.  I had also been taking Topamax when I was symptomatic to help with the headaches, I wondered if that was part of the problem too, since I developed nystagmus while all of the rest was happening.  I think the nystagmus may have been caused by the Topamax, it can be a side effect of that med.

I hope your docs are able to help you to feel better, I'm glad that you were able to find a neurologist who was willing to listen to you.  

Tina