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?

[The_Marine_Corp_Brat]

I haven't had decompression surgery, but I go through what you are experiencing on a daily basis. My heart goes out to you that you are having to experience that horrible feeling! I deal with it night & day 24-7. I know my GP said it was due to pressure. I have Chiari and a severe neck compression that both have gone untreated as there are no specialists in my area! The NL tries to treat my symptoms but we've found nothing that works! I have many other health issues and am unable to travel the long distances it would take to find a true Chiari specialist.
I will be praying for you as I understand having to deal with other health issues before being able to get anything done! (((HUGS))))  

[Viva001]

What surgery did you have?  I had severe vertigo from cervical compression, which was eliminated after a laminectomy.

[irislita]

did they ever check for related issues like craniocervical instability or disk issues?

[Sug_97]

I had a decompression, craniectomy, C-1 laminectomy, and duraplasty in Oct. 2010. I've been swelling with fluid since and my NS offered to do another surgery to put in a shunt, but he said it would probably go away by itself and asked me to give it at least 18 months.

I've had MRIs of my head and one full cervical and the only thing my NS says he saw was an abundance of fluid at the incision site and some inside of my cerebellum now.

[Sug_97]

I've had the dizziness and gait problems before, but never to this extent. This has left me completely unable to function.

[Sug_97]

Did I say cervical? lol... It was of my full spine, not cervix. Oh, my!

[selmaS]

  Hi...so sorry u r still dealing with all this....may I ask, b4 u get a shunt and the dura patch replaced what type was it to begin with...many with EDS reject the foreign patch by creating too much CSF....instead of removing the patch they then install another  foreign body, a shunt and the problem persists...I really feel if they replace the patch with ur pericardium and put u on DIAMOX with a drain it may help relieve the issue JMHO

Too many times we find those with these excess fluid issues r dx'd with EDS post op instead of pre op.

[irislita]

Maybe i am already getting on peoples nerve...but cervical instability has similar chiari symptoms and can go together especially these with eds. And it has to be motion xrays or mri to detect it.in my case my instability is causing more problems than the chiari....just a thought

[selmaS]

  Iris, I feel like I am the biggest pain, as I am always saying check for EDS...and so many discount it , but it can be more of an issue then the Chiari and cause more issues if they have surgery....so I know how u feel, EDS is so important to rule out next to getting a Chiari dx and checking CSF flow...JMHO

[irislita]

Hahaaaa...selma u r sooo cute,but i really just understate...getting a specialist and getting related things checked is essential.i am very sure there are a lot of people outside who think the surgery didnt help their symptoms because...no educated doctors...and quite a lot do have related issues...i am with u totally.hugs

[Sug_97]

I know it was a synthetic patch put on my dura. I don't know beyond that.

That would actually make sense, as I wasn't very swollen with fluid on the morning of my MRI and I don't feel swollen now. The way I feel right now, is the exact way I feel on Vicodin, and I'm allergic to Vicodin. I'll check with my NS.

I asked my GP about getting tested for EDS, as I'm not only double jointed, but I've had a problem with my joints going in and out for years. All of them: ankles, knees, hips, elbows, wrists, shoulders, and jaw. My GP, who originally said he didn't know what EDS was said this: "In terms of joint pains, there are obviously different causes for them. Some of the things you had mention such as EDS is a diagnosis of exclusion. Patient usually have a lot of skin laxity with this - very stretchy skin. In terms of pain control, I would recommend using the types of medications that work best of you such as Tylenol or Ibuprofen. If you do not tolerate pain medications, you can also try using heating pads or ice packs. Weight loss is also recommended for hip and knee pain. You can also be seen by physical therapy if you are interested. Take care."

I know there are different types of EDS (I watched the videos you shared Selma), but I don't know which of the 6 kinds to have them check for and each test is different.

[selmaS]

  If u go to a Dr that knows EDS, they will know how to test u, they also send u to a geneticist for more testing...so, it is not that involved or difficult to do.

I am going to send u a list of Drs in CA listed to treat EDS....I am not familiar with them, but it may help u locate one that can help u.

My Dr that dx'd my Chiari was a rheumatoid Dr, but he did not recognize my EDS...makes me wonder about him...but at least it was found,,,,

[Sug_97]

Thanks Selma... I'll check out the list.

[Sug_97]

Here is what my NS responded when I asked if the vertigo could be associated with my buildup of fluid:

11/26/2012  2:04 PM PST

It sounds like you are experiencing acute vertigo, and I don't think this is due to the fluid build-up. I think you should investigate with your primary care provider.

We have many patients with a fluid build-up like yours and I have yet to see it cause vertigo.

As for the patch, we used a synthetic graft called "Durepair." It is thought that this patch eventually leads to the formation of connective tissue in the area.

Best regards,

[selmaS]

  Well I do not understand his dismissive attitude....or y he would have ur PCP figure out y u have vertigo post op.....that he should be doing.....

Deff still look into EDS, and POTS and ICP....

This can be so frustrating, and we have to push past some of these answers we get to find the right answer.

[Sug_97]

Worse yet, my pcp replied telling me to try taking dramamine and doing these vertigo exorcises where I lay on my side (with the affected ear, not sure which ear that is) for 10 seconds and get up, over and over again until it goes away. I saw no expressed interest in the cause.

I have Kaiser, so my covered options are limited. However, I'm supposed to have a say in my care. Do you know what department would cover EDS, POTS and ICP, so I can request a referral?

[selmaS]

  Yes, that is the Epley maneuver...I was also told to try this when I had vertigo...I also took Dramamine...

This technique of getting up a certain way is done when they feel the crystals in yr ear canal move and throw u off balance, getting up this way is to help move them gently so u do not get thrown off balance....and shift the crystals to where they should be.

A Rheumatoid Dr or a neurologist should be able to test u for these....

I have heard that the Kaiser network is not the best to work within....

[Sug_97]

Met with a neurologist today for the first time. It was the first time that I really felt like a doctor listened and understood what I was saying without thinking I was a hypochondriac. He understood everything I was saying, even with my weird descriptions of my symptoms. He thinks I have two kinds of vertigo: central vertigo which has to do with my cerebellum (Chiari) and peripheral vertigo (bppv; which has to do with my ear), and treating one without treating the other would leave me continuing to have symptoms and lose hope! (Which is so true.) He's referred me back to an ENT for the appropriate tests. (In fact, they've already called, and I see an ENT on Tuesday.)

I really feel blessed. I've been praying for my "team of doctors" that Kaiser promises and this is an answer to prayer. I cried in the doctors office, when the doctor said he didn't think I was a hypochondriac and that considering the chiari, all my symptoms pretty much make sense, and I cried as I thanked God all the way home!

[BB11]

That is so uplifting to hear you found a dr willing to listen. When we come across these rare gems it's almost like you've hit the lotto. FINALLY someone believes me!!  It makes me so happy for you. Cant wait to hear how it goes with your ENT. Selma, I had the same experience with my rheumatologist. He told me I had EDS after i asked if i had it, but he wasnt concerned about it. He was more concerned with dx'ing me with fibromyalgia and all the new age books to help me try to solve my issues with "mind over matter".  On my own I went to a university hospital genetics clinic to find out for sure i have it and what type i have and learn more about it.  These boards are a blessing so we dont feel so alone. Too many drs believe they know everything and if they dont, the patient must be depressed or a hypochondriac.

Great uplifting, encouraging story sug_97. Thx for sharing. Best of luck to you.

[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

[selmaS]

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

How have u been?

[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]

  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.