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QUESTION OF THE MONTH ~~~
Hi ALL...wondering....
What do u feel is the biggest CHANGE to u since ur DX?
At first, I was ecstatic to have an accurate Dx, after 16 yrs!
Then, I was relieved to have shed so many symptoms.
Now, 11 months later, the reality of my "delicate condition" has set in, so I am learning to tread carefully through the new territory. It has been rough terrain.
Then, I was relieved to have shed so many symptoms.
Now, 11 months later, the reality of my "delicate condition" has set in, so I am learning to tread carefully through the new territory. It has been rough terrain.
COMMUNITY LEADER
Viv...I think we all can relate to that...as we all have to learn for ourselves what is ok and what is not as there is no guide book...and no help post op.
This is the biggest issue I have since the NS's only will see u if u need surgery or it's a follow up...so we r left hanging with all the Drs that had no idea what Chiari was/is and they certainly have no idea on how to help us....
My Dx was a shock cause I didn't know the problems was symptoms.
What happen after surgery I am glad to be where I am at, the best things is able to play with my grand baby, no more back pony rides. But we can do it on the legs. I am just thankful that I am alive and able to do anything. Thank you God for this.
What happen after surgery I am glad to be where I am at, the best things is able to play with my grand baby, no more back pony rides. But we can do it on the legs. I am just thankful that I am alive and able to do anything. Thank you God for this.
COMMUNITY LEADER
Amen...I agree...I do not have grand babies yet...but I am so happy I can play with my grand puppy...lol...and look forward to the grand kids when they do arrive <3
Another change--I just wanted to die before; I felt that I WAS dying. The recovery has been rough, but coincidentally, my son got engaged, will marry in September, and next week they are moving 2 hrs. away!
So now I am much more future oriented. Dr. R. gave me my life back.
So now I am much more future oriented. Dr. R. gave me my life back.
Biggest change... I feel worse than I did before I was dx... I wish I never found out last year+ been a nightmare.. in a total depressive state I am angry all the time.. I was much better thinking I had a brain tumor.. I still cant get over the fact its going to be the same for life... and probably get worse.. how can I ever have kids if im suffering every day so thats getting me down.
I am adamant I am going blind cant stop asking myself what did I do to deserve this
I am adamant I am going blind cant stop asking myself what did I do to deserve this
COMMUNITY LEADER
I am so glad u can see the future again...it takes time and the road may be bumpy...but it is worth it to move forward......as our life is not the same, but we have a new path and a life waiting for us <3 ((hugs))
COMMUNITY LEADER
I am so sorry u r no better...and I have to ask, were u checked for CSF leak, POTS, Tethered Cord,ICP or EDS?
Many underlying conditions related to Chiari can cause us to feel worse post op.
U do not have to feel worse the rest of ur life, it is finding a Dr that can help u pinpoint what was missed or what may have developed since ur surgery to make u feel this way.,...
((hugs))
Since my diagnosis I am more depressed and very moody and I feel anxious and very shaky not to mention insomnia
I have been reading your post for several months. I just joined the forum. I am a RN and was diagnosed 11-2012. I was wondering what if you were in the medical profession because you are so knowledgeable. I am still working altho I have called in sick 3 times in a few weeks. I work 2 12hr PM shifts a week. I have just cut my contract to 1 day a week. I don't know if I can even do that. I have a lot of questions......
My anxiety has been awful. I'm scared to be home alone with my children because I get random weak spells and think I'm going to pass out. I spend a lot of time with my mom since she doesn't work outside of the home either. She takes me to appt.s and helps me with my babies (age 3.5 and 1.5). I just don't feel like me anymore (I'm usually very independent and active), and its been this way for over a year. Anxiety and depression is taking its toll.
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
No, I am not a medical professional, I only share what I have learned along my Chiari journey....I do some research and my NS was great in explaining a lot of what I share.
Post ur Questions and we all will try to help u the best we can.
I no longer work....I was terminated when I was still out on sick leave...it was for the best as I know I could no longer do that job...it was too demanding....
Check into the ADA standards to see if that covers u or use FMLA time to cut ur hours back....
My first MRI showed a 3.9mm herniation so I went to my local Neuroligist who said all my symptoms were COLD findings.(Had nothing to do with such a small herniation. 5 years earlier I had a normal MRI read by him for the same symptoms. 20 years ago I had a normal MRI with complaints of headache. I gave him one more chance and kept record of all my symptoms. He did not want to see the records. He only wanted to go my his assessment and the old MRI. I was upset because by then I have read alot and knew he was wrong.
I went to Mayo had a MRI and it was now 6mm with diminished flow on the CINE. Also I requested a C-Spine and I have small bulges in a
C joints ,facet synovitis in two joints and a fissure in one.
Mayo offered surgery.
I went to Mayo had a MRI and it was now 6mm with diminished flow on the CINE. Also I requested a C-Spine and I have small bulges in a
C joints ,facet synovitis in two joints and a fissure in one.
Mayo offered surgery.
My doctors never told me to limit my activities or lifting. They told me you are a nurse you should know what to do. I have read for my self what not to do. My job requires that I can lift 40lbs, catch a patient who may fall,struggle with a patient who has dementia and may need to be restrained,hold down a combative patient who needs a IV. My job can be dangerious.
I gave up bike riding for safety (10 to 20 miles several times a week)
And Kayaking 3hrs a week.
I cut my hours already, It is hard to consentrate and my headaches are worse.
I gave up bike riding for safety (10 to 20 miles several times a week)
And Kayaking 3hrs a week.
I cut my hours already, It is hard to consentrate and my headaches are worse.
COMMUNITY LEADER
Did Mayo rule out a syrinx in the thoracic and lumbar spine, rule out tethered cord, and ehlers-danlos?
It is important that they do look into this.
When they do surgery did they tell u what all they planned on doing? Dura plasty and if so what type of patch, and laminectomy?
There r several diff types of decompression.....
Keep in mind just bcuz surgery is offered does not mean that is the place to have it...u need to know why it is offered having chiari is not enuff.
I requested a MRI to R/o syrinx but he would only order cervical. I 've read around 70% would show up there. It showed a faint visualization of the central cord canal in a few images although a well defined syrinx with expansion of the cord is not identified. no intrinsic cord lesion.. All c discs are bulged with facet synovitis c4-5 6-7, mild lordosis,annular fissure at c6-7 bilaterally mostly right, compatible with mulilevel facet synovitis
I was offered surgery on the phone by the NS but quickly told him NO I am not that bad.(I had to get ready for work and was shocked) In his office (BEFORE THE NEW MRis)he just said the treatment was a decompression and he took it that I was already familiar with the procedure. BAD MOVE. I now know more of the options.
I do have some pain in the bra strap area and more when I carry a book bag over the shoulder, a few times it felt like my leg was hurting at the same time. I didn't remember to tell him every thing. My follow up was with a neuroligist there wait and be worked in to first open slot with who ever you get. He was a very nice Headache dr who wsaw the results of the new MRI's and said the NS should adress them. Hesaid he wasNOT a chiari dr and would access my head aches only the refer me back to NS. He did order labs and nerve tests. that were negative except right hand 50% nearve pinch. He did diagnose the HA's as Chiari.
I was offered surgery on the phone by the NS but quickly told him NO I am not that bad.(I had to get ready for work and was shocked) In his office (BEFORE THE NEW MRis)he just said the treatment was a decompression and he took it that I was already familiar with the procedure. BAD MOVE. I now know more of the options.
I do have some pain in the bra strap area and more when I carry a book bag over the shoulder, a few times it felt like my leg was hurting at the same time. I didn't remember to tell him every thing. My follow up was with a neuroligist there wait and be worked in to first open slot with who ever you get. He was a very nice Headache dr who wsaw the results of the new MRI's and said the NS should adress them. Hesaid he wasNOT a chiari dr and would access my head aches only the refer me back to NS. He did order labs and nerve tests. that were negative except right hand 50% nearve pinch. He did diagnose the HA's as Chiari.
Will labs r/o ED. I am stiff to bend over, I am 56 yrs old. I had a spinal block which gave me a spinal HA at 24yrs old. And in my teens I bent my tail bone bouncing in the bottow of my brothers race boat and had chiroproctic adjustments to straighten it. The cord does not go that far. I told the doctors alot but none of this.
I getting mixed up on how to post, I hope you get them.
My main symptoms are: numb face, slurring words and wrong words with the feeling of drooling . Parastesia in arms and legs, pressure in back of neck ,hot pressure in the head apon bending head front or back. Poor consintration, titnitis, cant smell bleach, various shooting of pain in different extrimities poor cognition. Bad vertical doulble vision corrected with prisims and doulbe when tired.Heavy arms, Pain inthe Jaw, pounding in back of neck, numbness when sleeping on my rt side of arm and leg dizzyness when turning over. All symptoms come and go : the worst is numb face after riding in a car thats bumpy. Hear aches are geting worst but tolerable when I lay dowm. Some nausea.
Other history:
Hypo thyroid, Gout, Celiac disease,New Borderline diabetes(trying to fix with diet ) before it is too late.
I was very active biking kayacking, white water rafting, roller coasters last year with a few falls. I broke MY Self.
My main symptoms are: numb face, slurring words and wrong words with the feeling of drooling . Parastesia in arms and legs, pressure in back of neck ,hot pressure in the head apon bending head front or back. Poor consintration, titnitis, cant smell bleach, various shooting of pain in different extrimities poor cognition. Bad vertical doulble vision corrected with prisims and doulbe when tired.Heavy arms, Pain inthe Jaw, pounding in back of neck, numbness when sleeping on my rt side of arm and leg dizzyness when turning over. All symptoms come and go : the worst is numb face after riding in a car thats bumpy. Hear aches are geting worst but tolerable when I lay dowm. Some nausea.
Other history:
Hypo thyroid, Gout, Celiac disease,New Borderline diabetes(trying to fix with diet ) before it is too late.
I was very active biking kayacking, white water rafting, roller coasters last year with a few falls. I broke MY Self.
I'm more frustrated with doctors after chiari Dx, they still don't want to listen. I have since done research and basically diagnosed myself (later confirmed when I forced them to do testing) with Hashi's and LPR. How many times must I be right before they listen. Still can't get anyone to listen or attempt to diagnose connective tissue disorder, whether it be EDS or something else. The pain tells me something is wrong. I also need a new MRI of my thoracic and lumbar due increasing excruciating pain, but no one seems to think anything is wrong there either. Went to see a so called chiari specialist last week and it was a joke. He said the only symptom I have that is due to chiari is my headaches yet still recommends surgery due to blocked CSF. HE has no idea where other symptoms are coming from and didn't care. He also said I was unlikely to develope syrinx even though CSF was "significantly" blocked. Glad he has a crystal ball. Needless to say, I'm back to doctor shopping. Getting so irritated at having to be the patient AND the doctor. Not sure how much more I can handle.
Hi Selma,
I had headaches 24/7, pain and tingling in my legs 24/7, shoulder and neck pain, trouble swallowing, heavy arms, throat pain, severe vertigo and dizziness, was driving left of center and stopping beyond red lights and stop signs-depth perception was off ,had concussion from mva, major nausea, nystagmus, falling stars, incontinence, dropping things, ataxia, forgetfulness, numbness of hands and feet, cp, severe weakness and lethargy, very poor concentration, blurred and double vision etc pre op.
Are you a nurse? How did you get your disability approved? and how long did it take? Where u pleased w/TCI? How long does it take to get an appt?
Did u have any trouble walking pre op? or now? still having n/t in legs walking. I am post op over a yr.
I had headaches 24/7, pain and tingling in my legs 24/7, shoulder and neck pain, trouble swallowing, heavy arms, throat pain, severe vertigo and dizziness, was driving left of center and stopping beyond red lights and stop signs-depth perception was off ,had concussion from mva, major nausea, nystagmus, falling stars, incontinence, dropping things, ataxia, forgetfulness, numbness of hands and feet, cp, severe weakness and lethargy, very poor concentration, blurred and double vision etc pre op.
Are you a nurse? How did you get your disability approved? and how long did it take? Where u pleased w/TCI? How long does it take to get an appt?
Did u have any trouble walking pre op? or now? still having n/t in legs walking. I am post op over a yr.
Hi,
Surgeons only operate for 3 reasons, diminished flow is one, I had little if any flow on my CINE. Size of herniation doesn't matter. I had a very large one 20mm and was diagnosed after an mva w/ multiple symptoms. Can u work light duty? Get another opinion w/ a NS that does a lot of chiari operations. Selma is wonderful and can refer u to the list.
Surgeons only operate for 3 reasons, diminished flow is one, I had little if any flow on my CINE. Size of herniation doesn't matter. I had a very large one 20mm and was diagnosed after an mva w/ multiple symptoms. Can u work light duty? Get another opinion w/ a NS that does a lot of chiari operations. Selma is wonderful and can refer u to the list.
COMMUNITY LEADER
I am not a medical professional in ne capacity...
And I never got disability approved in fact ky LTD was denied and to fight that is now a federal case bcuz of a new law ERISA...and there r not too many lawyers versed on this and it would cost more to fight then I would win, so not ne that would take it either,....
I was well pleased with my NS at TCI....It can take 6 to 8 weeks to hear back, and then a few more weeks, as they review all cases at a weekly meeting and take the worse cases first.
I have had a cane since the yr 2000 and had no idea what the issue with balance was...as we felt it was from a botched ankle surgery....I still use my cane for uneven surfaces...grass, gravel roads...etc...but I am doing better now then b4 surgery.
B4 u had surgery for Chiari, were u tested for ALL related conditions?
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