Does dizziness resolve with surgery

[lasel22]

After  almost 2 years of strange symptoms I finally met with a true chiari specialist in long island who thinks my symptoms can all be chiari related.  TCI, however, turned me down.  It was nice to finally talk to a doctor about these bizarre symptoms like feeling like you are rocking back and forth when lying in bed and contracting my leg muscles and without hesitation hearing that’s from chiari.  When in the past I would get a look like I had two heads and was told I am having anxiety problems.  My herniation is 4 mm.

One of my most distressing symptoms is dizziness.  It happens if I need to look up and down a lot or if I need to move around and move my head at the same time.   Then after walking for a period of time when I sit down I am rocking back and forth for a while.  If I do way too much or bend over a lot then it progresses to outright vertigo.  I tried vestibular rehab during all of this and my symptoms got so back I was waking up in the middle of the night feeling like I was sleeping on a raft on the ocean.  My ENG testing also showed a 48% caloric weakness in the right ear along with SNHL.  While doing the caloric testing I suffered from severe headaches in the back of my head and behind my eyes.  My headaches aren’t too bad now that I have restricted my movements so much.  I have pursued all ENT avenues – had sinus surgery and perilymph fistula surgery.  Sinus surgery helped relieve some of the head pressure but that is all.

Anyway, the doctor I saw stressed to me that often times this sense of dizziness doesn’t always resolve with surgery.  I think at first he might have thought that was my ONLY symptom, because the more I talked about all my symptoms he became more willing to help me.  It went from come back in 6 months to give me a call in 2 weeks and see if you can get back to your normal activities and try to ignore the dizziness and see how your other symptoms are.  He just stressed to me to have the surgery for the other symptoms not the dizziness.  However, it’s this strange dizziness/rocking that is so limiting for me.

So, my question to everyone is has your dizziness improved with surgery?  Has the rocking sensation gone away after surgery and the feeling you are being pulled to the side sometimes.  I also have vertigo if I do too much.  That was my first symptoms, it happened after running one day.  Haven’t run since.

Thanks for the help!

[Dloshaw]

I had severe dizsinews. I would have bouts of vertigo that would confine me go a chair. Yoga stopped the dizziness for me. Once I started. It, the dizziness was gone. If you have more problems than dizziness, see dr. Seiff in Las Vegas. He did my surgery and half of my horrible problems  were gone before I left the hospital. I've found him listed on reputable sites as a chiari specialist. Las Vegas Nv

[lasel22]

I'm sorry to hear you needed an additional surgery.  I'm just curious, did you need a laminectomy also?  I wonder if the trauma from surgery caused instability?

I would love to feel increased fatigue and not feel my other symptoms!  As it is now, I can't keep up with my 70 year old mom due to my symptoms.  I used to love running and working out and now can't handle food shopping.  And there is no way I would have been able to work through this, I feel too sick.  I am a stay at home mom and my husband and mom have taken over many of my responsibilities.

At this point, I am leaning toward surgery.  It's just so hard to make that jump when I've seen 4 neurologists and 4 other neurosurgeons who are all saying chiari can't be my problem and they urge me not to have surgery.  I don't think Dr. B would consent to it, though, if he didn't believe it was the cause of my symptoms.  My gut feeling also tells me after all the research I have done and knowing what causes my symptoms to flare that chiari is the cause.  This condition really is misunderstood.

[Elisaandbucky]

My surgery was like what you said the doctor described above. I will have my first year anniversary next month and I can tell you how my recovery has gone. I will not lie to you. Many of my symptoms are greatly diminished (headaches, dizziness, nausea); however, my neck pain remained from the beginning of the recovery time. When I went to my 6-month post-op visit, I learned that I had an increase in a measurement that showed on my MRI. Before the surgery, the measurement was between 6 and 7. By the 6 month visit, the measurement had increased to 8.8. I think what it is called is the "Grabb-Oakes" measurement. The criteria for having a fusion for Cranial cervical instability is a measurement of 8 (in some reports, I have seen 9). I had this second surgery on 4/15/15. This recovery is going much slower than after the first chiari surgery. The thing that I notice most is the significant physical fatigue and increased need for sleep. I have to take naps during the day. So that means that I have had to greatly reduce my work schedule.

Overall, my first surgery recovery went well, but I had to alter my daily activity level some. Now, after the second surgery, I am cutting down on my daily activity even more. But, honestly, with all of that said, I would do it over again. Dr. Bolognese is a tremendously gifted surgeon. He will give you excellent care. I know it sounds scary. Do some reading about the surgery to make yourself a little more familiar with the terminology and the procedure. When I educate myself on a new and scary thing, I feel more in control. Let me know what you are thinking.

[lasel22]

Thanks Elisaandbucky for your positive comment.  My doctor urged me to try and get back to normal activities and keep track of my symptoms and I just got back from going shopping with my mom and I just feel terrible and had to cut it short.  I started getting head rushes, like a building of pressure then a slow release.  For me they hit me in my temples, forehead and behind my eyes.  It only affects the back of my head when I bend over.  With the head rushes the dizziness and rocking increases along with other symptoms too.

Can I ask, did your surgery involve removing the tonsils and then just sewing the dura back up without a patch?  That is how he described it to me.  What was your recovery like?  I think I am most afraid of the pain afterward and recovery rather than the procedure itself.

So glad to hear things worked out for you.  I completely understand the fear of vomiting.  It hasn't gotten that bad for me yet, but I do fear it on my bad days that it will come.  I also fear that the dizziness/vertigo will not resolve right after surgery and I'll have to deal with that on top of dealing with just having had surgery.

[Elisaandbucky]

You have gotten all the best information above. And, I may be biased, you saw the best doctor. He is my surgeon as well and I greatly respect him and his philosophy. To address your question about the dizziness and vertigo, I have some good new to report. For years, my dizziness and vertigo were with me everyday. Then, about 10 years ago, the vomiting came as a result on the very worst days. I developed a true pathological fear of vomiting. I am a teacher in front of a class, and I would never know when the nausea would come. Speeding up the story, I had chiari surgery in July 2014. I can tell you that, even though I have difficult days, the vertigo, dizziness, nausea and vomiting have practically stopped. I am just very careful when I am a passenger in a car. I keep my eyes straight ahead. Before the surgery, whenever I turned around to talk to my son in the backseat or turned to look at something going by, I would get those feelings. I also am faithful in holding onto railings when I am on stairs, in case I do get dizzy again.

I really hope you feel better, and that your symptoms become bearable. Post back to let us know how you are doing.

[lasel22]

sorry, just reread your message.  I think you meant hot yoga helped your dizziness and you did not have surgery.  don't think that would work for me.  thanks, though, for the suggestion.

[lasel22]

Thanks for your reply.  I used to do yoga and when my symptoms started I tried to just stretch in childs pose and I immediately had an intense headache and when I got up was dizzy.  My headaches have lessened since I stopped moving/bending over but the dizziness/vertigo/rocking has been constant for 10 months and increases the more I do.

Thanks again.  It's good to hear positive results.

[Dloshaw]

I had severe bouts of vertigo before I was diagnosed. I was always a little dizzy. When the pain started I did hot yoga. I have not had a vertigo problem since. I would strongly recommend trying it.  Clear it with. Your dr.

[selmaS]

  I agree it is hard to know what they have been told..but it is worth asking if something is a possibility....like could you have POTS and then add the reason you asked.....

[lasel22]

During my appointment his PA asked me a bunch of questions related to EDS and tested the flexibility of some of my joints.  I have also had a flexion extension mri and it was fine.  I assume the doctor was looking for CCI.  Been told I don't have MS or lupus or lyme.

Regarding the POTS.  When my symptoms are really bad I have noticed my heart rate increases a lot when I get up and then goes down when I lay down.  My symptoms have to be very bad for this to happen.  I've also almost fainted a couple times, just reached blacking out, started to sweat, and then came to.  I have wondered about POTS.

Sometimes I wonder how much the PA tells the doctor before the doctor sees you.  I told the PA all this.  You don't want to repeat everything you just told the PA but then you don't know what they told the doctor.

[selmaS]

  See TCI really misses Dr B...when he was there he was part of deciding who they brought in...now he is no longer there to help make that decision.

No I did not have that , but POTS is a related condition and you should tell Dr B about it.

Has Dr B tested you for the related conditions?

[lasel22]

I did not make an appointment with TCI, I just sent my images and they said I didn't need to be seen.  So, I waited a long time before I sent my images to Dr. B (that's the doctor I saw in LI) and he brought me in and listened to my symptoms and what causes them to get worse.  I asked him if I truly have chiari, i.e a small posterior fossa and he said yes and showed me on my mri.

I do not have any related conditions and have been tested for everything under the sun over the last 10 months.

I have never been tested for sleep apnea, and only seem to have problems when symptoms are really flaring.  It is a weird feeling.  Heart palpitations wake me up a lot, but only when other symptoms are flaring too.  I find that if I lay flat at night I have problems too, so I try to prop myself up but then over time I must move and sink down and I start waking up with my ears ringing very loud, feeling like I am rocking, and my heart beating fast.

Before your surgery, have you ever noticed that your circulation didn't seem right?  My legs tend to redden on me like the blood is pooling and they feel slightly swollen, very similar to how it felt when I was pregnant.

I am seeing the head of neurosurgery at Mount Sinai tomorrow for another opinion and am having them reviewed by Dr. Gilmer in Michigan also.  I'll see what they have to say...

[selmaS]

  I did not mean to imply the flow obstruction would be the only reason for surgery...it can be one of the reasons but other related conditions play just as big a factor like a retro flexed odontoid....

Thanks.....

Did you have an appointment at TCI or was it just a review of your MRI's and files? Wondering if they would have drawn a different opinion had they seen you and your symptoms along with a physical exam....

Keeping in mind it is possible to have a change of issues/symptoms sometimes in a short time frame.....

It sounds so scary to wake and not be able to breathe....were you tested for sleep apnea? I never heard of the anesthesia being a culprit to flare symptoms....position of the neck yes....hmmm

I know too many horror stories  some of which I feel are preventable....by having testing to rule out ALL related conditions as I am a strong believer that these related conditions can and do affect how we feel and heal post op. Those that have not been tested just chalk it up to a failed surgery.

[lasel22]

I did have a cine flow study in October which did not show an obstruction.  During this period of not know what was causing my symptoms I was put on prednisone and it always did just enough to make me more functional and reduce symptoms.  I was on 30 mg of prednisone during my flow study.

I have also read and heard from other doctors that the flow study isn't always that important but rather the constellation of symptoms and signs of compression.  It's funny and frustrating that you hear so many different opinions.

TCI just sent me a letter saying there was no pathology.  That's all I heard back from them.  I have a 4mm herniation that seems somewhat wide to me, on the axial views it looks like the tonsils wrap around the brainstem, especially on the right side which is the side I have more problems with.  I've had right sided eye twitching, facial numbness, tingling, ear problems, I also notice a loss of taste when symptoms are flaring.  I have the leg pain and tingling especially if I am active.  I've had tailbone pain for 10 years (though that was after childbirth) and unexplained pain in my feet for 8 years.

Also, my symptoms flared very badly after sinus surgery (when doctors thought my dizziness and headaches were due to my sphenoid sinus).  After surgery I couldn't walk unaided my balance was so bad and I had no sinus pain just neck pain near the top of my neck which radiated behind my eye.  I couldn't sleep through the night.  I kept awakening not being able to breath, MAJOR heart palpitations that were somewhat painful, arm numbness, facial tingling, and nystagmus.   The chiari doctor and the original ENT doctor who suggested chiari said the same thing, the position of the neck for general anesthesia made symptoms worse, as well as the anesthesia itself causing a rise in intracranial pressure.

Selma, I'm glad to hear your dizziness and balance issues aren't as bad post surgery.  Sometimes you read about such horror stories.

[selmaS]

  Hi...it all depends  I can sometimes still have dizziness or feel off balance but it depends on what I am doing....and I am 6 yrs post op....BUT it is nothing like b4 surgery.

May I ask why TCI turned you down?

Have you had a CINE MRI? Did they rule out ALL related conditions?

How you feel can sometimes be directly related to what you do, what your activities are....so do keep that in mind.....but surgery is not done to cure symptoms but to restore CSF flow or correct other issues like a retroflexed odontoid, bulging disks....etc...

It is just as important to know which related conditions you have or don't as to know you have Chiari as they can affect how you feel and heal should you have surgery.