How severe can symptoms become?

[tattie35]

Can anyone tell me how severer can Chiari symptoms become? I wake up everyday with nausea and been vomiting, I take nausea and headache medicine which do not seem to be helping....I have been feeling intense vibrations throughout my body where it feels like my entire nervous system is being attacked...

I have been decompressed once and I am terrified that I will have to have the sugery a second time.... I had my surgery by DR. Di at the Cleveland Clinic... I have an appointment with him again Sept 2nd... I can just say that I don't feel myself anymore even my tongue feels like nerves are being affected, weakness in my arms and hands, muscles feeling weird...I just don't know anymore even my sense of taste is not like it use to be...Could there be a leakage again? Can the herniation come back once you had the surgery? Please Help feeling alone and depressed.

[4inline]

So sorry you're dealing with this.  I really have nothing to offer here because I haven't had the surgery so I don't know how that is.  I do have the nausea and diarrhea though so I can commisserate (sp?) with you on that.  Don't know if it's from all the drugs I take or the Chiari.  I do take drugs for the stomach that help a lot.  I know it's hard not to get down and I hope and pray that you get answers and help.  People think because you have something that's not fatal, which is wonderful, that life's peachy, but poor health is so hard to deal with.  It is such an alone feeling because no one can really understand unless they've been there.  God speed.

[608lion]

I also have the whole body shock,pulsating,burning thing going on. I had my surgery in Sept of 09. I had two leaks and a pseudomeningocele. They did do two LP's which showed elevated protein and WBC's. They think the elevated WBC's was from the surgery,still in limbo on the protein. I have not had relief from the surgery and now have a pulling sensation down my spine and still feels like my head is cracked and also have that bobble head feeling. I just had a blood patch done 3 wks ago,because they thought I might have another leak.My NS says every thing looks fine besides the indent that is left in my head!! My NS has told me not to give up that My NL will figure out what is wrong!! All the blood work they have done is fine. So yes you are not alone in this crazy thing we call Chiari!!!

[fatenabu1]

My symptoms suck pretty bad. I can't walk due to extreme muscle weakness, sometimes I can't even feed my self with silverware due to coordination issues. I also have chronic full body pain, imagine your whole body having a migraine. My pain is controlled by a pain management medication though so I can tolerate it mostly. Sometimes all my muscles from the neck down quit responding. I have numb finger tips. I go paralyzed from the waist down from time to time. My muscles from the knee down really just don't work. I pretty much never have feeling in my finger tips and toes anymore. My feet, arms, and jaw have no reflex reaction meanwhile my knee have a hyper reflex reaction. I have loss of sensation pretty much all over from one time to another. I have trouble telling temperature difference most of the time. I also have neck pain as well. I also have extreme dizziness and have the feeling I want to pass out about every day. Traveling in a car tend to make my symptoms worse because the vibration of the car actually causes my brain to vibrate.

As for other issues besides physical ones, some of the more cognitive issues is that I get confused in large groups, I have focusing issues, memory loss, I either get insomnia or chronic fatigue (no happy medium). I also have speech issues. My brain sends the signal to say a word or sound more than once even though I only want it to be sent once, thus I have a bad stuttering problem. I also have random vocal cord paralysis as well. I also have mood swings from time to time.

I would go into more detail about what I go through every day because I really have no idea what I will wake up to, some days I wake up not being able to move for about 20 minutes other times I wake up pretty much okay (okay for me). I did not post my symptoms to scare you or anything and will say most people I talk to only have one or two really bad symptoms and several minor things, where as I have generally only major symptoms, which is somewhat rare but does happen. (not saying other people symptoms aren't bad, that is just what someone told me on a forum once)

God Bless,

Dustin

[selmaS]

I didn't mean it has to be chiari related......like a thyroid issue...or u may have vitamin levels  that r unbalanced....there r other things that could cause ur nausea.

It could be ur chiari....sometimes it is just the GERD flaring up...have u been dealing with that?

"selma"

[tattie35]

Thanks for letting me know the kind of surgeries that can be performed didin't know it could be done by laser.... learn something new every day... Selma u said that I could have something else going on and I don't know what that could be bcuz I have been tested for many things and everything comes back normal...

By the way I am not working at this time because symptoms are just that bad....I just be trying to get a bit of encouragement from ones that have been dealing with the same problems... but thanks for the encouragment.

[selmaS]

Thanks Lu for giving me an out...I know chiari did too, but u r right it is his name's fault...lol.....

[lu7997]

Selma. It is all good. : ). Chiari equals a great excuse for everything.  Lol.  Not to mention ... Shh.... Full moon time...  Hahaha.     He needs a longer name IMO.   U look at it. And think dr.   Ok u going to finish that name.   Lol.  

[selmaS]

Geeze...I was in a fog...I overlooked the fact u mentioned ur Dr's name....sorry and thanks lu....bcuz of ur post I went back and re read the thread....

: )

[lu7997]

Tattie dr Di is my doc as well.  Though I have not ha surgery I have done extensive research on the docs I see.  He is known (he actually patentet the surgery) do doing endoscopic pfd.   U should expect a smaller scar area from that.    From what I have learned it is a trial and error surgery with pray to God results.   Even the best doc can't tell u for certain what the outcome will be for it is so individualized.   With tht said. I am so sorry u are ping through this again.  I am sure u were hoping it would be all ove with.  But as a nurse not too many surgeries work like that. There is always more problems that pop up. The beat results are justvthat there are less and more managable than what u started with.    I am glad to hear u are going back to the doc. Hope things get better.  Hang in there. Take it easy. And if u are still worried call up an talk with the nurse before ur apointment.  Good luck

[selmaS]

No worries.

U should have had a 6 month post op visit with MRI's to see how things were healing.....in fact u r still healing as it takes up to 2 yrs to heal .I had my surgery in May of '09.

There r diff types of surgery done for chiari...one is the typical PFD with a moderate size zipper...and then there is a endoscopic with a much smaller scar.
If u look at my scar, it is larger than most in that  I also had skin harvested for my patch right from my scalp...so mine is big.

We r all diff and it all depends on what ur dr had to do once inside that will dictate the size of the scar. May I ask who ur dr was/is? DO u have to travel far to get to him?

Mine is in NY and I am in PA...so it is close to a 3 hr drive for me....I do have to go back at some point, but I want to wait until after my DD's wedding....

It may not be the fact it was not done correctly, but that u may have something else going on.....r u back to work?

"selma"

[tattie35]

Thank you for your words of encouragement.....to let you know my surgery was 3-5-09 and I have not been able to see my neurosergon since my last check up 4/05/09... not many docs wherer Ilive know about Chiari.

I was also concerned about the size of the scar it is about 3-4inches. I didn't the zipprhead look it was so small it was hardly noticed... does that mean he didn't correct it correctly? just so many things going through my mind at this time.... but thanks Selma for the wonderful advice.

[selmaS]

Hi I am so sorry u r feeling so poorly...we all expect, and hope that surgery will take these chiari symptoms away...and sometimes it does, but sometimes it doesn't.We pray if it does take them it will be forever.....again, that is not always the case.

Depending on how long since ur first surgery, it could be scar tissue...IIH or another related issue.

A Leak could be a possibility, especially since u already had one....

Some herniations r still there after surgery...not all drs cauterize the tonsils....they make space around them larger to allow CSF flow.

U r not alone...many of us have a recurrence of symptoms after PFD...and u r going to see ur Dr very soon.

Listen to ur body with ur activities to help keep symptoms at a minimum until u r seen.

"selma"