[pratt4]

Hello...I am a 36 year old who has been having strange health problems for the last 6 years. My symptoms are severe headaches, balance problems, slurred speech and trouble saying what I am thinking, trouble swallowing, loss of motor skills in hands, muscle weakness throughout body, drooping eyelid, blurry vision, dilated pupils, eye sensitivity, sensitive to loud and to many sounds at once, joint pain, muscle pain, sensation of someone digging their elbow in between my shoulder blades on my spine, sensation of pressure coming up my neck and into my head that get's really intense, memory problems with trouble spelling. There are many more but those are the most prominent. I also herniate L5/S1 and had a discectomy but disk had since re herniated. I was finally diagnosed with fibromyalgia and started seeing a neurologist/pain management doctor who ordered a MRI of my brain to check for lesions ect. This doctor did not read my MRI for 3 months so I changed to a new doctor who in reading the old doc's notes told me I had a chiari malformation and when I looked up the symptom's I had everyone of them. I am being referred to a neurologist and I assume will be sent to a neurosurgeon who is familiar with this condition. I am glad I now know what I am dealing with but am very scared of what this means for the rest of my life. I am already in the process of applying for disability, as I know I can't work. I have 2 very active boy's and my husband has had to take on the housework on top of work and my boy's activities. I explained to them what this condition is but it hard for someone else to understand and I feel very alone. I was wondering if when you have the decompression surgery do the symptoms get better or are they pretty much permanent? Does anyone know of a support group in the Columbia, SC are? I really need to connect with people who understand what I am dealing with, because I try to hide most of my symptom's from my children as they are already worried about me. I also have a lot of guilt and shame over not being able to work and help my husband with the house and my children's activities.

Thanks,

Pam

[Transformed]

I am 6 years post op and live a very active life now. I had very similiar symptoms. I am so glad you finally got your diagnosis. You are not alone. Almost all of us have similiar difficulties in getting a diagnosis. I actually had a doctor tell me I had fibromyalia. Chin up you are at the beginning of a journey back to health. I can't garantee full recovery but at least some releif. It may take some time. Keep your chin up and be encouraged. There is a Chiari support group on facebook I am part of and it has been very helpful.

Jodi

[pratt4]

Thank you so much for your response of hope. I have been unwell so long and would love to get back to life. I have to admit I have had many surgeries and know this will be a painful recovery, but I would do it tomorrow if I could, I hope for a full recovery but would take anything i can get..lol! I will look on FB for the support group, I haven't been able to find one in my area. Do you have children and if so have they been tested? I have 2 boy's but only 1 is my biological child and I worry for him, since most research I have read say's this is hereditary. I had a cousin (my mom's twin sister) who was born with spinabifida and other condition's related to this and wonder if I should have my son tested, he is very active in baseball and plans to continue through college and hopefully pro's, he has a God given talent and if this could effect him also I want to get a jump on it. Again thanks for the encouragement!!

Pam

[ny jenn]

OMG!! i dont have all of ur symptoms but many. i was diagnosed with borderline chiari malformation a few weeks ago. I totally thought my droopy eye was all in my head as with many more of my symtons that i also try to hide. I too have 2 lil guys. 3 and 5. i am an acoholic in recovery and am really stuggling managing my pain. i feel like everyone thinks im faking it! is that crazy? i dont even want to tell my gp my meds arent wrkin cause i think he will think im "drug seeking". hope i didnt share to much

[MAETIGGER]

Originally Posted by pratt4

Hello...I am a 36 year old who has been having strange health problems for the last 6 years. My symptoms are severe headaches, balance problems, slurred speech and trouble saying what I am thinking, trouble swallowing, loss of motor skills in hands, muscle weakness throughout body, drooping eyelid, blurry vision, dilated pupils, eye sensitivity, sensitive to loud and to many sounds at once, joint pain, muscle pain, sensation of someone digging their elbow in between my shoulder blades on my spine, sensation of pressure coming up my neck and into my head that get's really intense, memory problems with trouble spelling. There are many more but those are the most prominent. I also herniate L5/S1 and had a discectomy but disk had since re herniated. I was finally diagnosed with fibromyalgia and started seeing a neurologist/pain management doctor who ordered a MRI of my brain to check for lesions ect. This doctor did not read my MRI for 3 months so I changed to a new doctor who in reading the old doc's notes told me I had a chiari malformation and when I looked up the symptom's I had everyone of them. I am being referred to a neurologist and I assume will be sent to a neurosurgeon who is familiar with this condition. I am glad I now know what I am dealing with but am very scared of what this means for the rest of my life. I am already in the process of applying for disability, as I know I can't work. I have 2 very active boy's and my husband has had to take on the housework on top of work and my boy's activities. I explained to them what this condition is but it hard for someone else to understand and I feel very alone. I was wondering if when you have the decompression surgery do the symptoms get better or are they pretty much permanent? Does anyone know of a support group in the Columbia, SC are? I really need to connect with people who understand what I am dealing with, because I try to hide most of my symptom's from my children as they are already worried about me. I also have a lot of guilt and shame over not being able to work and help my husband with the house and my children's activities.

Thanks,

Pam

Sorry to hear of your struggle I totally get that elbow in the shoulder blade deal,I describe it as an icepickstabbbing through my upperback by my shoulder blade & squishing the nerve that runs down my right arm. Grr I am fortunate as my children are grown and I did not have these symptoms when they were little, I was always a little off balance & had some back problems but not like this. Anyway I certainly hope you decide on a treatplan that works for you.& I think it might just feel better talking to people who feel what you are describing and knowing you are crazy

[MAETIGGER]

Originally Posted by MAETIGGER

Sorry to hear of your struggle I totally get that elbow in the shoulder blade deal,I describe it as an icepickstabbbing through my upperback by my shoulder blade & squishing the nerve that runs down my right arm. Grr I am fortunate as my children are grown and I did not have these symptoms when they were little, I was always a little off balance & had some back problems but not like this. Anyway I certainly hope you decide on a treatplan that works for you.& I think it might just feel better talking to people who feel what you are describing and knowing you are crazy

Omg I meant to say knowing you Arent Crazy !!!

[cmartin1129]

Hi,
I suffered from some of the same symptoms you describe however I chose to have the surgery in November of 2011. All I can say it was the best thing I could have done for ME and I would do it again to get the relief I have been experiencing. I'm still recovering but I have noticed a huge difference in such a short time. I know I'm still healing but I'm hopeful and excited to get back MY life. I thought about disability but I refused to be defeated. Be encouraged and pray about YOUR next step should be...

[MrsRuckus]

I had my surgery 2 months ago and have had some not so pretty complications and im looking at having them do the surgery over again in a few weeks. I feel the exact same way as Pam regarding feeling guilty and helpless to helping out financially with the household. I feel like I should be back at work already and every day that passes I feel more and more guilty about not physically being able to help out. To be honest, it's nice to know that other people feel the same way - even though it's not a nice feeling.

[mikegiar1]

Originally Posted by pratt4

Hello...I am a 36 year old who has been having strange health problems for the last 6 years. My symptoms are severe headaches, balance problems, slurred speech and trouble saying what I am thinking, trouble swallowing, loss of motor skills in hands, muscle weakness throughout body, drooping eyelid, blurry vision, dilated pupils, eye sensitivity, sensitive to loud and to many sounds at once, joint pain, muscle pain, sensation of someone digging their elbow in between my shoulder blades on my spine, sensation of pressure coming up my neck and into my head that get's really intense, memory problems with trouble spelling. There are many more but those are the most prominent. I also herniate L5/S1 and had a discectomy but disk had since re herniated. I was finally diagnosed with fibromyalgia and started seeing a neurologist/pain management doctor who ordered a MRI of my brain to check for lesions ect. This doctor did not read my MRI for 3 months so I changed to a new doctor who in reading the old doc's notes told me I had a chiari malformation and when I looked up the symptom's I had everyone of them. I am being referred to a neurologist and I assume will be sent to a neurosurgeon who is familiar with this condition. I am glad I now know what I am dealing with but am very scared of what this means for the rest of my life. I am already in the process of applying for disability, as I know I can't work. I have 2 very active boy's and my husband has had to take on the housework on top of work and my boy's activities. I explained to them what this condition is but it hard for someone else to understand and I feel very alone. I was wondering if when you have the decompression surgery do the symptoms get better or are they pretty much permanent? Does anyone know of a support group in the Columbia, SC are? I really need to connect with people who understand what I am dealing with, because I try to hide most of my symptom's from my children as they are already worried about me. I also have a lot of guilt and shame over not being able to work and help my husband with the house and my children's activities.

Thanks,

Pam

i too have a lot of the things you discribed. i think the pain between the shoulders is the wosrt of them. i won't have surgery until there is no other choice. with the doctors around here i don't like the odds. i am told if they mess one little thing up i could be in a wheel chair. that is not an option right now. i can still get around with the help of pain meds. i believe if you need the med ask for it. if you have the MRI to show they can see you need it. one last thing we know you're not crazy! i hope all works out for everybody. take care and be safe

[dtwaitmh]

Hi, I am sorry you are having problems after surgery but if the Dr. does not know how to evaluate all the different aspects and disorders related to Chiari a lot of people end up like this and having redo surgeries because there surgeon did not know what they were doing or enough about Chiari to operate. Did they ever check you for EDS (Ehlers Danlos Syndrome)? Also CCI (cranio-cervical instability) can be the result of EDS. Did they do a standing MRI to check this. Also what about TC (tethered cord)and syringomyelia? Then there is the retroflexed odontoid they need to check for with an X-ray and you tilting your neck back as far as you can during the X- ray and tucking it down too. Also do you have Scoliosis? This disorder is so multi-faceted and a lot of surgeon do not know that. Please feel free to ask me anything and I will try my best to help.

Originally Posted by MrsRuckus

I had my surgery 2 months ago and have had some not so pretty complications and im looking at having them do the surgery over again in a few weeks. I feel the exact same way as Pam regarding feeling guilty and helpless to helping out financially with the household. I feel like I should be back at work already and every day that passes I feel more and more guilty about not physically being able to help out. To be honest, it's nice to know that other people feel the same way - even though it's not a nice feeling.