Cant talk

[rusty809]

Is it a common symptom to not be able to locate the words for things, or is this something else?  I had decompression surgery 3 yrs ago and this symptom is getting worse!  Most of my symptoms were not relieved by the surgery. How common is it for surgery not to work????

[classiechic]

I can relate with you both completely. I haven't had surgery yet, in fact today is my first appt with the NS. I just found out 3 months ago that I have chiari. Its all very new to me, the dx that is. Although, I've suffered with crazy symptoms as far as I can remember. Only the nystagmus and slurred speech, loss for words and the Big DUHH state is recent and those scare me. Im very forgetful of a conversation and events that happen within five min after. I never know when I will feel this way or have any symptom for that matter. Every day with each moment is different. I tend to have Great mornings beside the constant whooshing and pressure in my head and pain in my neck. I usually have horrible afternoons. What started as a 2-3 day a week slumbs has turned into nightly. In just the last year I've turned for the worse. I have lads of questions and to be honest, im nervous and scared yet happy and excited at the same time. Good luck to y'all. How well did y'all feel after your surgery? I know I will need it soon and im really afraid. :/

[ssparklers26]

I have the same issue. Some days it doesn't bother me much at all other days it's the whole day fighting for words.

It *****. sorry.

[bbisweary]

It is very common to not be able to find the words.  I work for state government in Economic Development.  A cabinet where everyone uses an over-exaggerated vocabulary to say "good morning".  I feel that I am viewed as an absolute imbecile because I can't explain anything with clarity anymore, simply because I can't verbalize what my brain is thinking.  I forget simple words and have given up on using what used to be a fairly large vocabulary. Now that everyone knows I have a "brain problem" since my surgery, they just act like they pity, which isn't at all what I desire. It's frustrating to me because my position has been diminished to basically a secretarial position. I guess I can be thankful that I haven't been technically demoted, but it is humiliating. My surgery was still what I call a success because before surgery I staggered like a drunk, spoke with slurred speech like a drunk, and had seizure-like spells.  I literally had to be held up on each side by coworkers to get out of the building severral times.  Now I walk faiirly well, with the exception of stiffness, and my speech isn't slurred anymore. I do have tethered cord and will need surgery soon for that also.  I'm waiting for my NS Dr. Di to resurface from leaving the Cleveland Clinic.  I'm sorry your surgery seemed unsucessful and I hope you find someone to help.

[classiechic]

I thought surely I was losing my mind. Here recently my loss for words and what I call my "digg" dumb state began. I have always had a Great vocabulary and my Sister says I have a way of putting everything into the right words, but not anymore. I get lost and stutter. I slur all the time. I want to cry when it happens which is really often. I've had people ask me if I was stupid and that is hurtful. :(:(.

[fatenabu1]

I have recently loss the ability to talk as well. I can't find the right words to say or pronounce them correctly without a lot of work Two of my friends on facebook who have chiari also have speaking issues. It also harder for me to make vocal noises. My vocal chords from all I can tell went paralyzed for a few days. I would try to even just scream and nothing but air came out. I am post surgery I have all of my symptoms again as I have posted on a different forum and some new ones.

[selmaS]

Hi and welcome to the Chiari forum.

We do have a thread with a list of drs that the members here have gone to and liked...u still need to research to find the right dr for u.

I do remember there being Drs in the Boston area......There r specialists in WI and NY and CO...u may need to travel to get to a true chiari specialist.

I hope u took time to read the poem at the top of the forum by Dr Oro...it helps give us all hope that there r drs out there that do understand.

I am happy to welcome u to our little family here, but sorry u had to seek us out.

"selma"

[CHRISTEN149]

I RECENTLY WENT TO A NEUROLOGIST WHO COMPLETELY DOWN PLAYED MY SYMPTOMS AND DIAGNOSIS AND AM LOOKING FOR A SECOND OPINION IS THERE ANYONE THAT KNOWS ANY SPECIALISTS IN THE SPRINGFIELD MASS AREA.????

[sherimom]

My son had this symptom when he had the surgery. It was odd. Apparently he did not even realize it was something he had a problem with until it was asked on the initial screening.  He just assumed it was normal to search for words, he didn't know any different. He was 15 when he had surgery in Jan. The surgery went well, but recently he has been having some symptoms return.

[tmk83]

In my operation I had apart of my skull removed as well as the dura expanded with a graph.
I have apparently been checked for a tethered cord and syrinx and do not have either.

[selmaS]

HI ...wow, I am sorry u r going thru all this.

May I ask if u had a patch  and if ur tonsils were cauterized?

There r several types of decompressions...one is less invasive...bony decompression...then the PFD in which the dura is opened.....and the endoscopic decompression.

And then u could have had a laminectomy and/or a fusion.....

Did u have a CINE MRI?.....and were u checked for tethered cord?

"selma"

[tmk83]

It has been two and a half years since I had my decompression surgery.  I had a leak approx 6 weeks after where I returned to hospital but they didn't operate again to fix it because it 'fixed itself'.
ever since then I have been putting up with the same pain I had before surgery.  Last week I had an MRI which they compared to the one I had a year ago - fancy this - it showed that my chiari which was 13.4mm is now 18.4mm.  So to the doctors who think that I should be fine after surgery - no I am not, and no I am not exagerating my continuing symptoms - they do still exist.
Now it is a waiting game to see if my surgeon actually wants to do anything for a second time??????????

[pdxmomof3boys]

I know your last post was awhile ago, but I saw it and had to ask...

My NS said that my 5.2mm herniation will not get worse -- but it appears that it is possible that it might. My symptoms are worsening, and it's been nearly two months since my dx. Hopefully it will not get worse, but how often will they do MRI scans? My insurance is great, but i have to get them approved before we do them. Did your friend go into the ER for evaluation with worsening symptoms, or just go back to the NS with them?

Thanks,

Rosemarie

[selmaS]

HI and welcome to the Chiari forum.

It is difficult to say bcuz we r all different. U deff need a Chiari specialist .....
I am not sure if u have a NS in mind.

U do have quite a few symptoms going on.......and I would suggest u take as much time as possible and go back to work very slowly.

I had surgery and am 6 months post op....but I am not back to work.As I said we r all different and I have had a few other issues going on too.

Ur dr would be best to say how long u may need to be out, but u must listen to ur body too.

I am glad to welcome u to our little family here...it is a great group of people here!!

"selma"

[Sesnick]

I have been diagnosed with Chiari1 with hydrocephalus and a cervical syrinx as complicating factors. I was diagnosed 17 years ago and in that time have had a shunt insertion and 4 revision (most recently in April 09). In the last few months, the headaches have become even worse then ever, if that is possible, with problems with balance, hearing, speech, swallowing , pain in my back - too many to mention really also getting worse. My origonal surgeon has 'ducked and weaved' on the idea of doing a surgery so I decided to get a second opinion. The upshot is I need a decompression within the next few weeks because the syrinx is now encroaching on the spinal chord. Additional tests being done in the meantime. Oh and the other complication? Recently diagnosed with a benign tumour in the parietal area of the brain (small, slow growing - so they are not doing anything for a few months). You might say this has not been the best of years. Bottom line is I know I have to have the surgery but I am terrified of it and how long I might be off work (sole income earner). Reassurance would be very much appreciated.

[Ms_Mon]

I, too, have had the surgery. Type I.  I am having increased headaches, my neck feels like a line backer looks, and stiffness.  Although I do have MS too, it's hard to tell which symptom goes with what illness.

I am trying to get in to see my NS.  For those of you in Northern IL, Dr. Todd Alexander is the NS that did my surgery.  His bedside manner is somewhat to be desired, but he does know what he is doing.

[Shane99]

Yes, the herniation can and generally will grow. Basically what's happening is, your brain is being squeezed out of your skull. As it herniates it actually gets into the spinal column and causes a blockage of spinal fuid (CSF). This blockage, called a syrinx, can cause paralysis.

There are sort of 5 types of Chiari. I say "Sort of", because Chiari "0" isn't an official term, but can still cause problems. This is what a minor Chiari is called - basically anything less than around 5mm. Chiari "0" is the only one that will ever change names.

Once it reaches a point above 5mm, it's called Chiari 1. The size of the herniation may change, but if you have Chiari 1, you will always have Chiari 1. I for instance have Chiari 1 at 20mm. A friend of mine from these boards was diagnosed originally with Chiari 1 at 5mm. Three months later she had Chiari 1 at 10mm and was operated on. That is a pretty rapid growth, but it can happen.

Chiari 2 is similar to Chiari 1, but the cause and effect is different. Whereas in Chairi 1 your brain is being squeezed into the spinal canal, in Chiari 2 your spine is actually pulling the brain down (this is called a tethered cord). Same basic problem, but different reason. Often this type is noticed earlier, perhaps in addition to spina bifida as a child.

Chiari 3 and 4 are much worse cases of deformity and seldom live past infants.

As far as your son goes; he will need to have periodic MRI's maybe every other year, unless he starts have symptoms - then he'll need to have them more often.

One way or another, he needs to be under a Chiari Specialists care as well as a Primary Care Physician that is either knowledgable about Chiari or at the least, willing to become so. The PCP will always be the primary care giver even if he has the surgery.

[ThePeachy1]

Absolutely, nobody gets it, and even those who have it have it differently i think, there are days when my symptoms are so different than other days and I think wow, I really felt like that?  Above did you say your son has it?  I cant imagine that?  I try to take mine with a huge dose of humor and that gets me thru most of the time but I don't think that would be the case if one of my kids had it, so hats off to you if you are dealing with it affecting one of your children. Hang in there and feel free to talk anytime. as a side note, there are a lot of nice people I would have to my house for a BBQ, I wouldn't let them cut on my head, I havent had surgery or anything but I am getting the impression from the people on here that have the it seems pretty important to see a chiari specialist, they have a list of them on the board. I am currently trying to get to one. I wish you the best

[rusty809]

Thank you for your info, it is so nice to talk to people who are right there.  I have a great husband, but you just cant GET it unless you HAVE it!!

[rusty809]

Well I am not sure if mine was that successfull, I feel like I swapped some symptoms for new ones!  My son had to miss his last day of school today be cause his chiari is acting up.  Our Dr. said that surgery for him would not be an immediate thing, but his head hurts all the time.  Can the herniation get worse (bigger) is this why you have paralasis?  Should I be more concerned about my son?? He is 13 and active. I would not consider my NS as a specialist, nice guy but not a specialist.  

[Shane99]

The statistics say that 80% of decompression surgeries are considered successful. That still leaves 20% that aren't. And you also have to define "successful". There is no cure for Chiari. The surgery is performed to help with symptioms and to slow down and hopefully stop any further problems.

I, for instance, still have several problems; dizziness, mentally slow days :), headaches, and some mild paralysis, etc, but I think I would be considered a success because I was quickly heading toward severe paralysis and my headaches are less than they used to be. I'm no where near as healthy as I was 2 years ago, but I'm a lot better than I was 1 year ago, so it's all relative.

[ThePeachy1]

Peachy here, I am not a specialist and I haven't had surgery but yes the problem is very common,  I used to have an awesome vocabulary in fact my husband said he was originally attracted to my rapier like wit, now I speak like I stuttering twit. you have to find humor in it or it will drive you insane.  I often can not find the word, use sounds instead of words, stutter, and then there are the really bad times when no words come at all.  I read one post on here,  I think it was on the, "you know you have Chiari when" thread- somone said-  you tell your 6 year old to throw their clothes in the trash instead of the hamper, and they do because they are 6.  I find mine is getting worse with numbers and names,  it's not that I don't know them I absolutely do, they just don't come out of my mouth properly. As far as any questions related to surgery I just can't answer those, I havent' been there or done that,  but I am sure Shane or another will "zip" on here and post for here until I am one.  Best of luck with your symptoms and keep up your spirits I know it can be a pain in the foot- hip, side sometimes but hang in there you are not alone.  Peachy