Return of symptoms?

[DSH519]

Had malformation type 1. Had decompression surgery in April 2001. Recently many of the same symptoms have returned.  Should I call my neurosurgeon or have mri done first. Anyone heard of symptoms returning basically overnight?  Had blockage in 2001 and they did patch, removed part of C1 and electronic shrinking of the tonsils. Numerous ct scans have come back negative for syrinx and they can find nothing wrong. Can the patch eventual.y fail.

[Dloshaw]

Yes.  Multiple times. At least 4. I couldn't move from a chair. It was hell when they come. They last about 3 to 7 days. They are horrible.

[Lottida]

Also sounds like symptoms of Semi-circular Canal Dehiscence which is small pin holes in the inner ear canal that allows small seepage of CSF.  I have a friend that had to have surgery for that & it was very successful in relieving symptoms.  Anyway just a thought of a possible diagnosis to consider since it mimics Meniere's & is probably why they want the more detailed MRI.  I think the nausea/vomiting is more pronounced with the canal dehiscence tho.  Wishing you the best of outcomes!!!!!

[DSH519]

Absolutely. You guys have been a great help as I deal with this. Today my neck feels like if I touch it it will break. Tomorrow I will probably wake up fine. The symptom cycle is the worst thing about this disease I think. It makes diagnosis hard too.

[selmaS]

   Thanks for the update.
  Crossing my fingers for you.....keep us posted !!

  

[DSH519]

After thinking it over, the surgeon wants me to drive from Orlando to Miami for a better MRI picture. I think the meniers diagnosis was correct to a certain degree,but he is concerned that the ear fluid is csf. The MRI he has ordered is purely of Braun stem and c-spine. I will let you guys know when the MRI is scheduled

[DSH519]

I was surprised too. It makes me feel better that the surgeon confirmed dx. Great that it was no cad blockage. Apparently this was brought on by a sinus infection. Will keep you posted.

[selmaS]

  I know many of us are given that DX but it tends to be b4 they find Chiari....
and I find this an odd DX at this point as I would think if you had it you would have had the symptoms all along.....

Please keep us posted on how treatment for this helps.

[Lottida]

Glad you finally got some answers.  Hopefully with diet changes & meds you will be able to control the symptoms better.  I know there is a regimen the ENTs in my hometown use that consists of a Prednisone tapering of 81 pills over 10 days along with diet changes & Klonopin every night.  Didn't work for me since I was missed diagnosed with Meniere's, but I do know lots of people that it has worked wonderful for.  Sending prayers your way!!!

[DSH519]

Brain scan showed some irritated areas due to spending the better part of a month in bed. Both neurologist and surgeon agreed with a meniers disease diagnosis.

[selmaS]

  Fingers crossed, good vibes sent and prayers said for you <3

[DSH519]

Hey guys. Please keep me in your thoughts and prayers as I have my scan tomorrow.

[Lottida]

Oh I wanted to also say that my husband had his decompression in 1997 & does get horrible vertigo, tinnitus & pressure when he has Labrinthitis.  ENT will usually give him Prednisone & Antibiotics which works wonderful!!!  I just had my decompression 6 weeks ago & I have a CSF leak from my Durapatch.  I do not have many symptoms thank god!!!  Hope you find the answers to your problems soon!!!  Wishing you the best!!

[Lottida]

I had severe vertigo at times.  That's 1 symptom why chiarians get missed diagnosed with Meniere's disease.  I had to take Dramamine several times daily for 7 weeks b4 my surgery (Dramamine is Anivert over the counter).  I was having severe vertigo issues along with hearing loss in right ear.  I received injections of steroids thru my eardrum into my middle ear, but I went into the most severe vertigo attack EVER after the 1st injection.  The room started spinning at least 100 mph......I honestly thought that I would go into a grand mall seizure!!!!!  It is possible that you could have some inner ear issues going on also.  My doc thought that I was possibly having Semicircular Canal Dehiscence (small holes in ear canal allowing CSF fluid to leak in inner ear).   I would suggest that you have a workup with an ENT to rule out all possible conditions with inner ear b4 assuming it is Chiari related.   I now know that mine was Chiari related------all issues resolved after my surgery.  I did have a multitude of tests done by ENT b4 my decompression surgery tho!!!

[DSH519]

Has anyone else had severe vertigo as a symptom of chiari?

[DSH519]

Does anyone know if a cat scan can show evidence of a Tia in the neck area? Both of my recent vertigo attacks have put me in the hospital, and both times they were concerned about Tia. Both ct scans were negative for Tia's of head and neck, but are the ct's good enough to see brain stem area?

[DSH519]

All those following my posts:  today I had another extreme vertigo attack.the firefighters had to carry me from my second floor apartment to the ambulance because I couldn't walk.  The Valium they gave me worked quickly to ease the vertigo symptoms, which suggested to the doctor that something was going on with my neck muscles and they were pinching my balance nerve in my neck.  Unfortunately the hospital I was rushed to didn't have a working MRI machine. The good news I found out is that my cerebellum appeared on ct to be in the right place. Hopefully that will rule out another full decompression. Also there is no csf buildup in the ventricles which. Is a good sign.  Waiting anxiously for MRI Wednesday for neuro appointment. Hope patch didn't collapse

[selmaS]

  Oh you had a funny guy there to suggest sleeping outside the Drs office...lol....indeed....

Glad it seems to be normal pressure and not elevated pressure.

I pray you get to your MRI on time and safely.

[DSH519]

Quick update: was back in the er last night with. My ear popping, feeling full and bad tinnitus. Another ct was tasked of my head, and the doctor on call actually was well versed in the malformation. It seems that some of the increased spinal fluid is settling in my eustacian tubes and they are dumping the blued when the pressure gets too high, which will cause my vertigo.  They were able to drub behind my ears to get them to drain last night.  Today ringing is back but the brews sure is better.  He said since my head doesn't feel full of pressure the Chiari is probably causing normal pressure hydrocephalus. He said to take a blanket and sleep outside the doctors office Tuesday night so traffic doesn't cause me to miss my MRI.

[Elisaandbucky]

Sorry to hear about you missing your appointment. Traffic where I am is pretty horrific also. You are smart to keep calling about cancellations. My experience has been good in getting earlier appointments that other people cancel. I will be sending you good wishes.

[DSH519]

Unfortunately, I missed my test this morning due to traffic.  The neurologist said his next appointment is a week from now. I will be calling frequently to see if anyone cancelled, and it no appointment I may drive to Miami to the Cleveland Clinicbranch there, where my NS will have instant results

[Elisaandbucky]

Good afternoon. I am following you thread and am thinking about you today as you have your MRI. I really hope it can provide some answers to help you with this process. I will check back tomorrow to see what you have to report. I hope you have a good day.

[selmaS]

  Hi and welcome to the Chiari forum.

I have heard of them using electric currents to help with pain for the head....not sure about what it was called ......I may remember in a few hours...lol...

May I ask, were ALL related conditions ruled out for your wife? Syringomyelia, POTS, ICP, Ehlers-Danlos?

Also may I ask what she was doing on a daily basis when she began to feel poorly?

[DSH519]

Has she been back to see her neurosurgeon.?  Before my first decompression 14 years I had vicious cycles of symptoms. My headaches lasted 3-5 days on full bed rest. I have never heard of the omega proCedure. Odd that an MRI didn't find what was causing her symptoms. I wish her the best

[patrickt35]

My wife had chiari surgery on april 22 2013 and by july was doing great then came august it was like she got hit by a mack truck we spent the next 2 month in and out of the hospitals only to find nothing then got better for a period of time then she developed seizures and complete numbness on the left side.  Now her symptoms are getting worse she has numbness on the left side that can last up to 5 days and the headaches are back to the point we are in and out of the ER for pain meds.  They have done several CT cans and MRI's but show nothing blood work is all good.   Has anyone ever heard of the Omega Procedure its an electrical stimulater placed under the skin around the head and controlled by remote it claims to work does anyone have any experience with this procedure.