I was diagnosed with Chiari last June, while on Mat Leave. I was having tingling and numbness on my left side of my back, and I was concerned it was MS, because my mom has MS, (she's had if for the last 15 years). I went to her neurologist, and once I had the MRI, it was confirmed I had Chiari instead. Other symptoms now make sense, but I always just thought it was normal. For example, getting major head pain when I laugh or cough. My balance is always off, and I am very clumsy, but just thought it was me...
The Dr. sent me to see a Neurosurgeon this past March, and I have to go for EP (?) tests and another MRI. When he looked at my last tests, he said I could have the surgery, but he wanted to do these tests anyway. My EP test is July 13, my next MRI is August 18, and the next appt. with him is Sept. 21. The Dr's office said once all the appts. are done, I could have the surgery within a couple weeks, so I'm assuming in October. I have 2 small children a husband and I work full time, but I would like to know how I can plan after the surgery...I've been reading this wonderful forum for the last few months, and finally got the courage to write on it. I think it's amazing how much support there is and I thank you for that. I live just outside of Toronto, Canada, but the hospital is St. Mike's in TO. Thanks in advance for any advice...
well - every single person is different. we all have healed at different rates and we all have coped in different ways. thats the really hard part about chiari....no one is the same. there is no set time for recovery although the doctors use the standard "6-8 weeks" - THATS HORSE **** - pardon my language. Everyone has different life function and criteria for their jobs and daily life function. ALL of us require time to heal....as long as it takes...
how large is your herniation? im interested to see how your maternity process has gone and continues to go (ie: delivery) now knowing you have this going on. We would love one more child but am waiting at least a year post op before we discuss things.
now for my advice/story.......im honest- brutally honest ....As others will attest to :)
i would reccommend seeing a doctor that specializes in Chiari. There is a great list on this forum of doctors all over the country. If you know you have it, give yourself and your family the most accurate information possible before you make any decision. This surgery is a huge deal if you decide to get it. Im sure, as you have read, it is life changing. Many of us are not back to "normal" function two years post op and dont know if that "normal" will ever return. (normal meaning how you functioned pre op)
everyone also has a different story. some have dealt with pain and symptoms for years and doctors blowing them off. some have been fortunate enough to have the chiari found before it causes serious damage.
personally - i dropped to the floor in front of my two children ( ages 5 and 2) and thought i was having a stroke. im 32. i had been having "symptoms" for years and many MRI's, scans, blah blah blah......all missed the chiari.....AWESOME. i was rushed to a trauma center where they intially told me my MRI was "pristine" and sent me home..... only to get a phone call six hours later telling me to return to the hospital within the hour - that i have a major brain issue.......thats it.....no further explaination. my husband (also a police officer) puts me in his patrol car and proceeds to rush me to the trauma center. we get two miles down the road and i "appear to have a stroke again' and fall in and out of consciousness, puking everywhere......AWESOME again..... pulled over on the side of the highway, medics were called to pull my lifeless body from his vehicle and rush me AGAIN to the trauma center. I was admitted, highly medicated on February 2nd because i couldnt function, walk, sit up without falling down or getting sick.
MY surgery was February 11th (considering insurance saw my procedure as "optional" since i was not paralyzed or on breathing assistance......unreal)
i remained in the trauma center until February 17th. I was without my children for the entire time. . . . as a mother, medicated or not, you know how that ripes your heart out. My herniation was 10mm. it was compressing my brain stem and spinal cord. i was "millimeters from being paralyzed and death".......shesh.....LOVELY......
my recovery has been difficult and frustrating. i still have tremors, floaters in my vision, and clumsy. ( i spill stuff all over myself all the time. its gotten to be funny now. i'll sit on the couch and watch tv and suddenly feel my boob is wet.....holding my drink, half of it is now on my shirt........**sigh** ) i could list all of my "symptoms or set-backs" but dont want to scare you about the procedure, though i might have already......sorry :(
again, im only 4 months post op. i am "functioning". i can care for myself and my kids. i can drive and stuff but not without pain typically. i am on medications but wont take them during the day since i have a little one at home. i take meds after my husband gets home, just in case im a little sloppier than usual. I have been forced to retire as a police officer after 12 years in law enforcement. Very difficult to handle.......
so- as i have shared my story, you will read others that arent so bad. the best part about this site is that EVERYONE is honest about the procedure and things that occur daily in their lives. it truely helps you and your family understand the severity of the circumstances and things you will surely encounter should you choose to have the surgery OR should you put it off for a little.
Either way, you have definately found the right group of ladies and gents to talk with.
dont feel the need to sugar coat your questions . just ask them. im 100% sure someone has experienced it and has a story or advice for you.
Good luck with everything. i hope i was helpful and not annoyingly longwinded......you can say if i was.....im laughing at myself as i type....... i need a life...ha!
HI.....I am soooooo glad u decided to join us on the forum by sharing ur concerns and questions : )
And Jillian is right, we can all give u a totally diff story...some have gone back to work while others have not and will not be able to.It all depends on when the CM is found and treatment given...sometimes we have pressure on the nerves for too long and it can cause perm nerve damage.DO u know if u have a syrinx?....the longer chiari disrupts CSF flow a syrinx can grow and put pressure on the spinal cord and cause nerve damage.
Some like myself may have several chiari related issues keeping us from going back to work....I have a herniated disk in an area of stinosis (spinal cord is smaller) so this is causing yet another CSF blockage for me.Plus I also have tethered cord which needs to be addressed.
Jillian pointed out about getting a chiari specialist, which I am not sure being in Canada is possible unless u do go outside ( if u can afford to)
Contact cmoeller as she is from Canada too and she had the surgery approx 5 months ago...she can share her experience on that side of the boarder with the medical staff and how she was seen by,
I was told to be off work for five weeks. When I went back to the doctor on the 5th week I requested more time off, he was fine with allowing me to take any amount of time I wanted. I asked for another 4 weeks. So I was off work a total of 9 weeks. Everyone is different. I think I should have taken more time. At five weeks I couldn't even turn my head...
Jilian and Selma have given you great advice. I had some minor complications after surgery, other had severe complications. I think because I felt so good I rush to get my life back to normal, and paid for it later. Sometimes I still pay for it and have learned to limit my activities.
I am from Victoria, BC and have been through the dx and surgery process. First of all, let me say I am so thankful that you have found a good NS who validates your symptoms!! A lot of Canadians I have spoken too have found it hard to find a good one. I agree that in a perfect world it would be nice to have a Chiari specialist but I think you will be hard pressed to find one here and would have to travel to the US.
You are probably describing the ENP tests (evoked nerve potential)..where they set up electrodes at different areas of your body and on your head, then they put this buzzing thing at different locations and record the messages to and from your brain. I had this done too and it wasn't very helpful in determining things for me, however, I did NOT know at the time that I had Chiari so they didn't know what to look for.
I know what you mean about realizing that all the things that you thought were normal, were not normal at all!! For years when I would cough or sneeze..I would get this stuffy pounding feeling in my head...BTW- I was a very clumsy child in fact I had a nickname "Careless Carolyn" (yes very damaging at the time lol) b/c I would drop things, have trouble with attention span etc... My poor gymnastics teacher probably didn't know what to do with me b/c I always fell off the balance beam!!!
Anyhow, surgery recovery time....I know what you are feeling, I have 3 boys and that is the information I wanted most...when can I get back to being their mom and doing all the stuff I normally do? Unfortunately, for me, I didn't find this forum until after.
What I can tell you...if your hospital is like mine..the surgery took about 5-6hrs..including the time spent in the preop room (when they were prepping me) and the time spent in recovery. I did not spend time in the ICU but went directly to the neuro floor. It was a tough few days...I'm not going to lie...make sure that you have a good pain management plan..I did not due to several drug allergies and reaction to the anesthetic and I believe that is why my initial recovery was rough. That said, I didn't have any complications...no leaks, no patch rejection ect... I did have a issue with the pressure in my head which lasted for several weeks after.
When I got home..pretty much for the first two weeks I could get up and down only for short periods and definitely appreciated having someone there to help me with the kids. Also, a very big thing for me with having kids was the meals ppl brought for the freezer!!! It made everyone's life easier..
After 4 weeks, I found things more manageable and after 2 months I felt I had recovered from the surgery for the most part.
I will add here...I was misdx for a very long time and that caused my progression to go further than it should and has caused some damage...so I do still have some issues.
I am a believer that the sooner you catch it and get the surgery done, the easier and faster your recovery will be. It sounds like you are at the stage I was at about a year b4 I had surgery...so I am pleased to here that you will be having it sooner than later.
Well now that I've written a book...feel free to contact me with any questions :)
Wow, I can't believe you all have taken the time and effort to explaining your individual situations and strategies. I really appreciate your knowledge and your honesty. I feel quite a lot better now, knowing that I'm not alone.
Let me just clarify, that I had already had my baby, and I was on Maternity leave. In Canada, we are allowed to take a year off to take care of our baby, and our employer is required to keep our position for us, unless we decide not to return to work.
Thank you Jilian, Selma, 'Redkim' and Carolyn...I honestly had tears in my eyes after I read all your posts. (in a good way!)
I'll keep you posted!
I can relate to you so very much. for the longest time I thought that the head pain when laughing or coughing was normal. The first time i felt tingling i was at the movies watching the grudge..thought i scared myself so much i was having a heart attack.the dumb docs..gave me a mammogram...dont ask me why. The next 2 years i didn't have symptoms w/exception of the painful head pain. I noticed the symptoms came back stronger after i gave birth to my daughter. Makes me wonder if pregnancy does anything to you . I'd assume it does with the crazy hormones and extreme pressure. It took them 2 yrs to diagnose me. Even after an MRI that showd an 11mm herniation the neorologist said patients w/chiari dont have symptoms (yea right) so he said...here..go to a neorosurgeon..THEY KNOW MORE about it. I saw the neorosurgeon who said..ok..see how your eyes do this..how you walk like this..how your hands do that etc...and said..ok your a candidate for surgery. Come back whenever you're ready. REALITY is...you'll NEVER be ready. I was debating on it bc of my daughter but while i was debating i got pregnant AGAIN. weird thing..though through my pregnancy i hardly felt symptoms..but now 4 mths post partum the symptoms are horrible and scary. and I've come to the conclusion that i need to face it and get the surgery done..because its a no win situation. It wont hurt to try and make this better w/surgery . Only God knows how you'll do afterwards. We just have to keep praying that it will allgo ok and that God helps you cope with the outcome good or bad. My husband works out of state , my family here in town thinks its all in my head (crazyness, anxiety, etc) the rest are out of town and i wouldnt have any help unless my mother in law (who cares for a 30yr man w/paro willie syndrome) comes and help me. Its a hard decision to make and something so tough to have to go through especially when you want to be there 100% for your children. I'm right there with you. We're all here to help eachother out.
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