I was recently diagnosed (couple of months ago..) jan 2014.. with with chiari 1.. 9.6mm..
I have pretty severe symptoms.. bad migraines.. sometimes I cant even move my head from the pillow.. tingling in my arms.. bad neck pain.. memory loss.. severe fatigue (sleeping ALL THE TIME) through EVERYTHING.. I have 4 boys.. and my husband is remodeling the house.. I sleep through the kids... the sawing.. hammers.. WHAT THE HECK!!?? I have been nauseous for years and years..take nausea medication every 4 hours.. memory loss...
june 2012.. I was in the hospital paralyzed from the waist down.. they said it was neuropathy.. got sent home in a wheelchair.. but after 6-8 weeks of physical therapy.. I was walking..and working.. now here I am.. I cant even drive.. the ground always looks like its moving.. im so dizzy all the time.. but I am terrified to go through with this surgery.. I am so sick of pain and just want it to go away...
im terrified of not waking up....
I have a severe phobia of vomit/vomiting.. and I just want an easy way out.. but im scared there isn't one :/ anybody have the surgery?? any success stories?? anything I need to worry about??
I am in MA.. any good doctor suggestions?? if anybody has any advice for me please respond and we can chat.. please.. just looking for somebody to relate to.. or somebody who has been through this before..
Hi Shelley, I am in Mass too. I am 5 1/2 weeks post op and doing pretty well. Dr Carl Heilman at Tufts is my NS. I recommend him. He will explain things to you and he is very experienced. You can also go to MGH or Beth Israel or Brigham and Women's for top surgeons. You should get at least 2 opinions.
Hey Hope, how was the surgery.. were you sick afterwards??? I was referred to Dr. Carl Heilman.. have heard great things about him.. I have been to 2 other neuro's already.. had 2 occipital nerve blocks.. which actually made me feel worse.. :/
The surgery went well. I know you are concerned about vomiting. I had terrible nausea when I woke up in the neuro ICU. They gave me medication for it and I didn't vomit. I think a lot of people do, but I'm sure you can get through it. If you do have the surgery, make sure you tell them at your pre-op and have your family tell them in ICU about your phobia. It is a serious surgery and you will need to plan for at least an 8 week recovery. Dr. Heilman is good. I went to him every year for 3 years for a re-check before I decided to have the surgery. I am at the point now where I see some improvement, but I also still have post-op pain around the incision. He will be very upfront about if he thinks the surgery will help you or not. You will like him. Make sure you write down your questions and bring someone with you who will take notes or help remember what is said. You mention that you have been to 2 neuros, but you really need to talk to a Neurosurgeon or 2.
I have been to 2 neurosurgeons.. actually 3.. one was an older guy cant even remember his name.. dr. Johnson from south shore neurospine wants to "watch and wait" and referred me to brigham and womens..ive also been to a couple of neurologists..the headache clinic, dizziness clinic, pain clinic, and my pcp every darn week... I don't want to have the surgery.. and as of right now the condition is not life threatening.. but it is most def. life altering.. I lay down almost all day every day.. either too tired and dizzy to get up.. or too nauseous.. or migraines.. I have 4 young children.. I cant live the rest of my life like this...but one of my friend's friend had decompression surgery with Dr. H.. so my PCP is sending over a referral.. Its worth a shot..
as for those injections into the occipital nerves.. NEVER AGAIN!! They made me SO MUCH WORSE
It was the good experience with Dr. H. of a friend of a friend of mine that helped me to decide to go for it. She had such an improvement after surgery, I have improvement already and I am very hopeful that after I heal completely from surgery I will have a more active life. I was very very afraid going into surgery, but I am glad I did it. Even though my symptoms were not life threatening, having an inactive lifestyle from my Chiari takes tolls in other ways. My Chiari symptoms kept me from doing things I enjoy. I also think the Chiari contributed to: less walking, weight gain (from less activity), high blood pressure (from weight gain and less exercise), depression, back pain, less productivity at work, travelling less, entertaining guests less....etc.. basically Chiari stopped me from living a happy and fairly active life.
I didn't know South Shore Neuro did Chiari Surgery. I know for sure that for any surgery, you want to go to someone who does it often - an expert.
I hope Dr. H will help you or point you in the right direction so you can get some relief. Good luck and God bless you. I hope you find relief from your symptoms. Let us know how it goes!
Dr. Johnson referred me to brigham and womens.. I saw a dr who didn't know much about chiari and said I should find a true chiari specialist.. this was last week.. so I am trying to find my own.. I told him I wanted to do some research..
my life is on hold.. I didn't sign the kids up for tball.baseball.... I sleep all the time.. I have a hard time driving.. I cant look left or right or behind me too frequently.. I cant even cough without severe pain.. ugh.. I really wish there was a non-surgical way to fix this ... now I worry about my 4 kids having it.. its hereditary isn't it?? I have 2 (out of the 4) with neuro issues..
That sounds really tough with younger kids. I was lucky in that it really didn't get really bad until I was older and my kids are older. When I did mention symptoms - headaches, dizziness, fatigue to my PCP in my 30's and 40's, he blamed being a mother of young children. We all worry about our kids, just mention it to their doctor if they have any symptoms. I can relate to the looking behind and the cough headache. I understand worrying - that is my specialty, but you are moving in the right direction, trying to find treatment. Enjoy your boys as much as you can - they will remember the good times you have together, not the things they did not do.
I'm sorry you are having such a difficult time. I had the surgery and have been very pleased with the results. I did not have nausea or vomiting afterward but I know some people do. I would make sure the doctor knows of your phobia so he can order you anti-nausea meds! Best wishes whatever you should decide to do. I was very scared to have surgery but now that it is over with I am so glad I did it.
Yes, the sleep study is usually done in a sleep lab. But my experience was very good. The staff was awesome and it was like sleeping in a hotel room. I have a 2 yr old so I joked it was like a getaway (it helps me calm my nerves to laugh about it!) I get my official results back today. Having central sleep apnea makes surgery more likely because the only treatment is to correct the neurological problem causing it and it means the chiari herniation is likely pressing on the brain stem. It can be deadly. I have all those same symptoms! I’ve been waking gasping for air for a few years, tachycardia, waking up feeling like a bus ran me over, etc. My sleep study dr expedited my results which makes me worry because they said they’d only do that if something was wrong.
I kind of don't even want to know... ugh.. I hate this crap.. everybody keeps saying stay positive.. youll be fine.. IF ONLY THEY KNEW!! I have the worst headache I have ever had right now.. I took 2 fioricet at 10, a nausea pill, and at 12:30 I took motrin.. I am MISERABLE.. something has got to give..
*I am going to meet with MGH neurology dept.. they are calling me with an appointment day/time shortly* hopefully sooner rather than later... I also have a follow up with 2 other docs in the south shore, MA area... did any of you have memory loss?? I'm only 26 and VERY forgetful.. I have 4 children.. and went to the pharmacy the other day and forgot my sons bday .... its humiliating because nobody really knows about the chiari... my parents and husband and a couple close friends do.. but nobody else really.. and if they did know they wouldn't know what it was all about.. they always say "its all it your head" GOLLY GEE they were right!! (lol)
one of my biggest concerns is $... I am on workers comp since 2012 I was lifting a paralyzed patient (who weighed 288lbs) and at the time I was only 100lbs.. I was trying to put his hoyer jacket on him.. and I threw out my back.. ended up having 2 full blown herniations.. so been in and out of physical therapy for that.. if they find out about this.. they will do everything in their power to blame my back injury on this!... ugh.. my children are being so loud...no nap for me.. this is terrible :(
You’re NOT crazy. You have a large herniation and likely CSF blockage. I would see an experienced chiari neuro. They will order the CINE MRI for you. I would not address the issue with anyone other than an experienced neurologist or neurosurgeon. And trust me, if you have apnea, you want to know! Your kids need you! Also, chiari is congenital so it cannot be blamed on your back injury. I promise you that.
what medicine has worked best for your migraines/headaches? I take motrin, fioricet and Percocet.. ive had a 4 day migraine now, and already took motrin 2x and fioricet 4x today.. im seriously considering making a trip to the ER.. but whenever I go there I end up with morphine or dilauded and I get sick.. so I might try one more fioricet and another nap... ive been sleeping for days.. and when I wake up.. I come on this site;.. chiari is ruining my life!!
I have a 2 yr old so I joked it was like a getaway (it helps me calm my nerves to laugh about it!) I get my official results back today. Having central sleep apnea makes surgery more likely because the only treatment is to correct the neurological problem causing it and it means the chiari herniation is likely pressing on the brain stem. It can be deadly. I have all those same symptoms! I’ve been waking gasping for air for a few years, tachycardia, waking up feeling like a bus ran me over, etc. My sleep study dr expedited my results which makes me worry because they said they’d only do that if something was wrong. 