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.
Welcome, tomygirl. What a tremendous relief for you to finally have a name to assign to your symptoms. You have been through some incredible difficulties. I just wanted to wish you the best with your surgery and a speedy recovery. I have not had this kind of surgery but surely others here will share experiences. Recovery time is highly individual. Some put it out as far as a year and a half and others as soon as six months. If you haven’t yet please do check out the Chiari Info tab above. There is a good deal of information for those newly diagnosed. Please share your surgery update with us as well.
Big hugs!
Laurie
Hi I had surgery exactly 2years ago. Was in terrible pain with headache, limb and back pain. Had tinnitus, vertigo and nausea too. Surgery is very painful in the first day or two post op,but with proper care and pain control meds you will cope fine. Thereafter pain was on par with my pre op headaches and over a week or two resolved. Surgery for me was a magic wand. Pains and tinnitus were gone and vertgo improved over 3 months. Back to work in a busy physical job at 4 months. However had ones active year and now things declined, back to same symptoms and see the surgeon on Monday. Pain of surgery would not put me off further surgery, surgery worth it to have an active life again.
Hope surgery is worth it for you, its an uncomfortable experience but over with quickly and makes a big difference. Best wishes to you.
Ps my biggest fear was the staples and having them removed post surgery, told my surgeon and she did glue and disolvable stiches instead. I was the envy of other chiari pts on ward who had to get staples taken out. Might be worth asking for this.
Alison x
Hi, tomygirl! I just want to give you my best wishes! I hope the surgery will bring relief for you!
Fugu said:
Hi, tomygirl! I just want to give you my best wishes! I hope the surgery will bring relief for you!
Thanks for the wishes,,,,,I'm petrified. Mt Sinai phoned me yesterday and now I have to go Monday for a Occipital nerve block. They report it will help elimate the spasms after the surgery.
BaltimoreBaby said:
Welcome, tomygirl. What a tremendous relief for you to finally have a name to assign to your symptoms. You have been through some incredible difficulties. I just wanted to wish you the best with your surgery and a speedy recovery. I have not had this kind of surgery but surely others here will share experiences. Recovery time is highly individual. Some put it out as far as a year and a half and others as soon as six months. If you haven't yet please do check out the Chiari Info tab above. There is a good deal of information for those newly diagnosed. Please share your surgery update with us as well.
Big hugs!Thanks fo the welcome....I go for a nerve block Monday.....they report it will help before the surgery.
Laurie
Alison said:
Hi I had surgery exactly 2years ago. Was in terrible pain with headache, limb and back pain. Had tinnitus, vertigo and nausea too. Surgery is very painful in the first day or two post op,but with proper care and pain control meds you will cope fine. Thereafter pain was on par with my pre op headaches and over a week or two resolved. Surgery for me was a magic wand. Pains and tinnitus were gone and vertgo improved over 3 months. Back to work in a busy physical job at 4 months. However had ones active year and now things declined, back to same symptoms and see the surgeon on Monday. Pain of surgery would not put me off further surgery, surgery worth it to have an active life again.
Hope surgery is worth it for you, its an uncomfortable experience but over with quickly and makes a big difference. Best wishes to you.
Ps my biggest fear was the staples and having them removed post surgery, told my surgeon and she did glue and disolvable stiches instead. I was the envy of other chiari pts on ward who had to get staples taken out. Might be worth asking for this.
Alison xthank you Allson. I hope I don't have much pain and wanted to be back at work at 2 months. Maybe I am thinking my progress will be quicker. I am petrified of it not working. I want to be able to swallowing and see without closing one eye. I am getting a occipital nerve block on Monday. Did your surgeon have you get one?
Hi tomygirl. My name is Brandon. Its crazy to think you lived with this for 8 years before properly being diagnosed. I cant even imagine. I became ill 8/12/15 and it started out with neck pain, numbness to my right arm and tingling to my fingers. From there other symptoms followed, headaches, nausea, difficulty concentrating, tremors to my lower body. I went to my primary care physician who treated me with some pain meds and ordered an MRI however after waiting a few days on the approval I could not bare the headaches so ended up int he emergency room and hospital. I was diagnosed with degenerative neck/back disc disease. I later was told I would have surgery for this, however this did not occur. I was discharged from hospital with not treatment plan/options. I ended up going to a different NS who upon hearing my symptoms ordered a Brain MRI. Withing a few weeks of this I was diagnosed with Chairi. I had surgery 10/13/15. I did not realize the recovery time for this was at least 4 months.
I am currently 24 days post op, all of my symptoms did subside after surgery. Although some are reappearing. My speech/though process has been affected my short term memory has been affected. I do not know if this is short term or permanent. I have developed myclonic jerks/seizures I see a neurologist 12/28/15 do not know if I will be able to drive. I am looking at possible permanent disability saying all this I am in a much better physical state then before the surgery. I feel better. Although I am dealing with pain and other deficits at this time they are no where near the level before the surgery. What has got me through this last two difficult months is an extremely supportive family and my faith. Nobody with this condition can get through it alone. Try not to get offended when people dont understand how you feel because they are ignorant to this and not stupid. I suggest if you have not seen it you and your husband and anyone in your support group watch the movie Still Alice. She depicts the process we go through with our condition. My wife watched this movie with me and not only did it help me have a further understanding it tremendously helped her. I have been informed by my doctor that my recovery will be four months because of the job I do. One thing I have learned in the last 3 weeks of recovery is to take very small steps, I learned the hard way to not over do it. Don't feel embarrassed during the time that people are till doing things for you. I hope this has been helpful and if you have any other questions I will respond. Praying peace for you and your family from here until surgery and well after. God Bless!!!
Bowler said:
Hi tomygirl. My name is Brandon. Its crazy to think you lived with this for 8 years before properly being diagnosed. I cant even imagine. I became ill 8/12/15 and it started out with neck pain, numbness to my right arm and tingling to my fingers. From there other symptoms followed, headaches, nausea, difficulty concentrating, tremors to my lower body. I went to my primary care physician who treated me with some pain meds and ordered an MRI however after waiting a few days on the approval I could not bare the headaches so ended up int he emergency room and hospital. I was diagnosed with degenerative neck/back disc disease. I later was told I would have surgery for this, however this did not occur. I was discharged from hospital with not treatment plan/options. I ended up going to a different NS who upon hearing my symptoms ordered a Brain MRI. Withing a few weeks of this I was diagnosed with Chairi. I had surgery 10/13/15. I did not realize the recovery time for this was at least 4 months.
I am currently 24 days post op, all of my symptoms did subside after surgery. Although some are reappearing. My speech/though process has been affected my short term memory has been affected. I do not know if this is short term or permanent. I have developed myclonic jerks/seizures I see a neurologist 12/28/15 do not know if I will be able to drive. I am looking at possible permanent disability saying all this I am in a much better physical state then before the surgery. I feel better. Although I am dealing with pain and other deficits at this time they are no where near the level before the surgery. What has got me through this last two difficult months is an extremely supportive family and my faith. Nobody with this condition can get through it alone. Try not to get offended when people dont understand how you feel because they are ignorant to this and not stupid. I suggest if you have not seen it you and your husband and anyone in your support group watch the movie Still Alice. She depicts the process we go through with our condition. My wife watched this movie with me and not only did it help me have a further understanding it tremendously helped her. I have been informed by my doctor that my recovery will be four months because of the job I do. One thing I have learned in the last 3 weeks of recovery is to take very small steps, I learned the hard way to not over do it. Don't feel embarrassed during the time that people are till doing things for you. I hope this has been helpful and if you have any other questions I will respond. Praying peace for you and your family from here until surgery and well after. God Bless!!!
thank you for the response and it was very helpful. I do not get headaches and that is a huge relief. I was called yesterday and told to go to NYC on Monday to get a Occiptal Nerve block. the doctor says it will help with the spasms. Did you happen to get one before your surgery? Now I am more petriried than ever. I am 51 and other wise very healthy.....I've been struggling with this for quite some time and the docs are amazed that I did. Wishing you the best in your recovery as well.
tomygirl said:
thank you for the response and it was very helpful. I do not get headaches and that is a huge relief. I was called yesterday and told to go to NYC on Monday to get a Occiptal Nerve block. the doctor says it will help with the spasms. Did you happen to get one before your surgery? Now I am more petriried than ever. I am 51 and other wise very healthy.....I've been struggling with this for quite some time and the docs are amazed that I did. Wishing you the best in your recovery as well.
Alison said:Hi I had surgery exactly 2years ago. Was in terrible pain with headache, limb and back pain. Had tinnitus, vertigo and nausea too. Surgery is very painful in the first day or two post op,but with proper care and pain control meds you will cope fine. Thereafter pain was on par with my pre op headaches and over a week or two resolved. Surgery for me was a magic wand. Pains and tinnitus were gone and vertgo improved over 3 months. Back to work in a busy physical job at 4 months. However had ones active year and now things declined, back to same symptoms and see the surgeon on Monday. Pain of surgery would not put me off further surgery, surgery worth it to have an active life again.
Hope surgery is worth it for you, its an uncomfortable experience but over with quickly and makes a big difference. Best wishes to you.
Ps my biggest fear was the staples and having them removed post surgery, told my surgeon and she did glue and disolvable stiches instead. I was the envy of other chiari pts on ward who had to get staples taken out. Might be worth asking for this.
Alison xthank you Allson. I hope I don't have much pain and wanted to be back at work at 2 months. Maybe I am thinking my progress will be quicker. I am petrified of it not working. I want to be able to swallowing and see without closing one eye. I am getting a occipital nerve block on Monday. Did your surgeon have you get one?
thank you Allson. I hope I don't have much pain and wanted to be back at work at 2 months. Maybe I am thinking my progress will be quicker. I am petrified of it not working. I want to be able to swallowing and see without closing one eye. I am getting a occipital nerve block on Monday. Did your surgeon have you get one?
Bowler said:
Hi tomygirl. My name is Brandon. Its crazy to think you lived with this for 8 years before properly being diagnosed. I cant even imagine. I became ill 8/12/15 and it started out with neck pain, numbness to my right arm and tingling to my fingers. From there other symptoms followed, headaches, nausea, difficulty concentrating, tremors to my lower body. I went to my primary care physician who treated me with some pain meds and ordered an MRI however after waiting a few days on the approval I could not bare the headaches so ended up int he emergency room and hospital. I was diagnosed with degenerative neck/back disc disease. I later was told I would have surgery for this, however this did not occur. I was discharged from hospital with not treatment plan/options. I ended up going to a different NS who upon hearing my symptoms ordered a Brain MRI. Withing a few weeks of this I was diagnosed with Chairi. I had surgery 10/13/15. I did not realize the recovery time for this was at least 4 months.
I am currently 24 days post op, all of my symptoms did subside after surgery. Although some are reappearing. My speech/though process has been affected my short term memory has been affected. I do not know if this is short term or permanent. I have developed myclonic jerks/seizures I see a neurologist 12/28/15 do not know if I will be able to drive. I am looking at possible permanent disability saying all this I am in a much better physical state then before the surgery. I feel better. Although I am dealing with pain and other deficits at this time they are no where near the level before the surgery. What has got me through this last two difficult months is an extremely supportive family and my faith. Nobody with this condition can get through it alone. Try not to get offended when people dont understand how you feel because they are ignorant to this and not stupid. I suggest if you have not seen it you and your husband and anyone in your support group watch the movie Still Alice. She depicts the process we go through with our condition. My wife watched this movie with me and not only did it help me have a further understanding it tremendously helped her. I have been informed by my doctor that my recovery will be four months because of the job I do. One thing I have learned in the last 3 weeks of recovery is to take very small steps, I learned the hard way to not over do it. Don't feel embarrassed during the time that people are till doing things for you. I hope this has been helpful and if you have any other questions I will respond. Praying peace for you and your family from here until surgery and well after. God Bless!!!
I am having occipital nerve block done Monday, one week before surgery. did you have this done too?