Hi, I was just diagnosed with Severe Chiari Malformation after 8 years of suffering. It started with not being able to swallow and losing lots of weight 8 years ago. I went to every doctor locally and didn't find any answers. They ruled out myes thenias gravis and lou garretts disease. Food was going into my lungs. I went to the PCP, ENT, Gastro, Neurologist and no one knew what was wrong. I did speech therapy and I appeared to get better. About a year ago, my swallowing issues started again. Although, this time I didn't lose weight. Also my balance was getting much worse and I was at the point when driving to work I had to close one eye to see. It was terrible, but I continued to work two jobs. I made my rounds locally and after getting pneumonia, my lung doctor discovered there was barrium in my lungs from a barrium swallow study completed eight years ago. She tried everything with me and felt bad. She finally referred me to Mt sinia hospital in NYC where we have been going for years because my husband has liver cancer (another issue). Well , I went and met with an ENT and speech pathologist a month ago. They did a swallow study which I failed and stopped it and told me everything went into my lungs and not only did i not feel it, I didn't cough. I was terribel they said, and put me on a pured diet. They had me get a brain MRI the same day, and on the way home back upstate, the doctor called my cell phone and told me the MRI revealed chiari malformation and he was making an appointment with a neurosurgeon for me. I went the following week to the NS, and he showed me the MRI and said i needed surgery as it was very bad. My spine was like a clogged sink. No fluid was getting into my spine. I went last week for another MRI (very long) and pre surgical testing. i am scheduled for surgery Nov 16th and am nervous. this is my first surgery. They told me my balance and vision would improve, but not sure about my swallowing since it has been so long it takes lots of muscles of swallow. Guess, why i am joining is to find out how people did after surgery, did you feel ok, did symptoms improve, did it hurt. I am 51 and work for the state full time and county part time. They wanted me to be out three months, I want to come back in two. I am healthy other wise, but afraid that I won't get my senses back and will eventually need a feeding tube. (the ENT mentioned that to me). Please anyone with any info, it would be greatly appreciated. I only have 11 days till surgery but very grateful they found what was wrong with me.
The surgery will help. It gets gradually better at least for me. Are you seeing a good NS I went to Hopkins. It takes a bit to recover but it will be better in long run
I haven’t had had the surgery yet. I’m trying to put I off as long as I can, but my symptoms are getting worse. Please keep me posted how your surgery goes. My thoughts are with you.
Hi
My son is 13 and going for his op in 17th November so you will be in our thoughts.
He has the squeezing of the throat feeling - like someone is trying to strangle him
My doctor recommended chewing bubble gum when you are feeling better after the operation- strengthens the muscles - not sure if true but hell I have already bought the bubble gum
All our love
Thank you all for the responses. V I will definitely be thinking of you and your son the 17th. I am having the surgery at Mt Sinai hospital in NYC. I am very nervous as this is my first surgery, but not being able to swallow, see correctly and almost falling from balance issues is enough for me to go through surgery. I was happy to get diagnosed. The hospital called me Thursday to tell me I have to go Monday to get a occipital nerve block done. They said this was to help with spasms and I am guessing hopefully with the pain. Is this surgery very painful? Countdown for me.
Yes, my NS specializes in chiari surgery. I am going to get a nerve block on Monday a week before the surgery. did you get one?
Missy10 said:
The surgery will help. It gets gradually better at least for me. Are you seeing a good NS I went to Hopkins. It takes a bit to recover but it will be better in long run
Hi there,
i had the surgery 11 years ago. i went to TCI in NY. i've had occipital pain since and i'm wondering if, had i had the nerve block, i wouldn't have the occipital pain now. i'm just wondering if they explained why they are giving it before the surgery. is it supposed to stave off permanent muscle and soft tissue pain? (don't let my story scare you. i'm sure they've come a long way since 11 years ago.) are they doing the occipital nerve block with ultrasound guidance?
thanks, i look forward to your answers and hope you do well with the surgery.
martha
Hi, tomygirl! Hope your surgery went well! Give us an update on how you're doing when ever your up for that!
Hi
Send us your update - how you feeling - my son is doing great for now - but only 5 days since the operation but he has hardly had any pain except for the first two days.
THANKS VANESSA
tomygirl said:
Thank you all for the responses. V I will definitely be thinking of you and your son the 17th. I am having the surgery at Mt Sinai hospital in NYC. I am very nervous as this is my first surgery, but not being able to swallow, see correctly and almost falling from balance issues is enough for me to go through surgery. I was happy to get diagnosed. The hospital called me Thursday to tell me I have to go Monday to get a occipital nerve block done. They said this was to help with spasms and I am guessing hopefully with the pain. Is this surgery very painful? Countdown for me.
I’m having surgery this Wednesday and scared to death, I don’t think doctors really know what is causing my headaches, but they got worse after I had a snow skiing accident landed on my head. Done MRI and found CM. I’m dizzy at times , but my headaches painful on my left side. Ears hurt, I hear noise at the back of my head . Eyes hurt to light. Anyone else have any of these symptoms?
had my surgery and have been home a week now. Go to see surgeon tomorrow and have been having a nurse, PT and OT come to the house. The pain is tolerable. Taking lots of pain meds but they are upsetting my stomach and don['t usually sleep more than four hours at a time. Funny, all of my symptoms are on my left side. I didn't have the headaches but had serious swallowing,balance and vision issues. I work full time and part time and will be out of work for a little over two months and hope to be able to go back after. I look great with the exception of the sutures. Dr said they will dissolve on their own in six to eight weeks. I feel better, was scared, but would def do it again if I had too. Had an awesome surgeon and ENT and am hopeful I do not have permanent damage. I have been tracking my symptom,s since being home, such as when I get numb, ringing in ears, vision issues, but I know it takes a while to get back to normal. I did have a nerve block before surgery and have an appt with the same pain management doctor after my appt with my surgeon tomorrow just in case I want another. It helps with the spasms. I really didn;'t feel much difference, but maybe that is because I had one before surgery and I'll let him decide if he wants to give me another. Don't be afraid, you wake up in pain, but everyone was very nice and helpful. And to be honest, while I was hospitalized, my husband had to go through radiation cancer liver treatments during the same time frame. My NS and his oncologist worked together, to put both of minds at ease. I am 51, never had surgery, and pray things continue to go well. I want to be one of the SUCCESSFUL stories. I am a fighter and do lots for the community and my job. It's hard for me to accept help but this time around, I needed to and was overwhelmed by the support of family, co workers, neighbors and friends. All the best, fondly, tomygirl