i need to vent for a second. I am about 5 months out of a decompression and my mom has started to give me grief about "faking my illness" she thinks that i should be 100% back to normal every day and the truth is that im not. i still have a lot of pain and i dont know if its normal. while my mri's show that my CM and syringlomyeila is completely gone i still have many of the same problems i did pre-surgery, is that normal? or is it in my head like everyone tries to make me think it is...?
Sadly decompression surgery is a treatment but not a cure. It can help symptoms in some cases, halt progression of symptoms, but it is not a cure. Depending on the amount of nerve damage sustained before surgery you can have lasting issues. :(
i guess i knew that going into the surgery, but then my NS kept saying that i was cured and it just gave my mom so much doubt and now she thinks that im faking it all for attention
Please have your Mother either join this group or read your posts. Many times post op symptoms are worse than pre op symptoms. I wish I felt as good as I did pre op. I would almost give anything if that was possible. A lot of NS tell patients they are healed and that is absolutely not true. I am sorry your Mom thinks you are "faking" feeling bad. If you would like I would be happy to talk to her. Do you have a good PCP or Pain Management Specialist ? You are going to need post op care that NS's don't provide.
Please contact me if you need anything.
Tracy Z.
thanks tracy, i stated seeing a neurologist who is treating my pain symptoms (its not helping much) but i guess i just wish she understood, because to her she hears that im better but just sees me being sick and i know i dont feel right but it made me wonder if this was normal, its all so new to me and ive never really had anyone else to talk to about it
Your Mother doesn't "get it" and because your life affects hers it's a struggle for her too.
I'm a Dad with a son in your same spot. Tell your mom that she can believe in you and be wrong or not believe in you and be wrong. She will regret the second choice the rest of her life. Hang in there and never give up!
thanks everyone it reassuring to know other people are going through the same thing and the support never hurts
It’s so hard to get friends and family to understand chiari. I had my father tell me, three weeks out of surgery that “I should be making more of an effort”!!
Because it is an invisible disorder people find it hard to accept - I hate the phrase, you look so well. If only they could see inside me, the headaches, the dizziness. I feel the benefit from the surgery in my back and neck pain, in the last few weeks its almost gone but there are still symptoms that remain.
I agree with the suggestion to get your mum to join the group and build her knowledge and understanding of your chiari so she can give you the support you need.
Wishing you all the best, Vivvy x
I understand how you feel. I had a severe headache two days ago that lasted over 8 hours. My mother (who I currently live with) was so frustrated and called me lazy. No one understands because I am fine one minute then in complete agony the next. My decompression is scheduled for December. I’m afraid her thinking will get worse after the surgery. Really hoping all my symptoms go away with the surgery.
When I went to my follow up visit with my NS (post surgery), my mother asked the question "What are his restrictions?" and he replied "No restrictions." Of course this news spread throughout my family and was completely misunderstood by everybody. What he meant, and should have said in my opinion, was that there is nothing I can physically do to mess up the surgery that has been done. Of course that's a wonderful thing but man did it get blown out of proportion haha.
Anyways, I just wanted to say hello, I'm right there with ya :) Just keep doing the best you can <3 Nobody will ever truly know what you're going through but you. As far as the chiari-world goes, at this point it sounds like what could be done for you surgically - has been done. For now we just have to keep on living while the research is being done. Medical and Surgical techniques are advancing rapidly as well :) There is a lot of hope in our futures... also, I've been told by a lot of people that it takes between 6 months to a year to feel better... so some positive change may be right around the corner for you.
Much love to you and your family<3<3<3
i sure hope so because i dont know how much longer i can take this. it is completely ruining not only my senior year of high school but also every dream i ever had. its like im watching everything i worked for my whole life slip away
I know what you mean about the slipping away :\ The same thing has happened to me. You are very lucky to have found your problem so soon! I began getting sleepy in high school, I dropped out of college after my second year... I'm now 30 and living with family. I tried so hard for so many years to make things work just because of all the stupid tough love people were giving me, telling me there's nothing wrong with me, but then my body started to fight back and there was nothing I could do. There are certainly times where I have felt that I have lost everything in my life but I know that's not completely true. I'm definitely in a different place but most of the time I"m just grateful to still be alive :)
I also am writing today because I wanted to share the wonderful experience I had today. I woke up feeling at least 50% better today and it was amazing. It lasted about an hour but it was so clear and beautiful that I'm finally certain that I'm on the right track. It's happened before but usually only for about ten minutes so today's hour of clarity was definitely encouraging. Hopefully the worst IS behind us and all it will take now is time <3 Just hang in there and don't let anybody give you any crap! :) (i can't stress that enough haha).
<3
Elsie Nash said:
i sure hope so because i dont know how much longer i can take this. it is completely ruining not only my senior year of high school but also every dream i ever had. its like im watching everything i worked for my whole life slip away
I know exactly how you're feeling! I think it's normal. My surgeon said I'm completely cured, but there's still a lot I can't do. I had my last decompression in March. I have headaches daily, but they arent as severe as before. I don't think anyone with Chiari can really say they will ever feel normal... People who don't have it just don't understand.
From what I understand, the longer you have had the symptoms, the longer it takes to heal. It was explained that the nerve damage didn't happen over night and will not heal over night. Of course some nerve damage may be permanent. I also heard that before the surgery, different nerves may be blocked from receiving signals that something is wrong, and after surgery, your brain can receive them and it may appear that you are worse off than before, but keep in mind , your brain didn't get the msgs. And I also heard that the improvements are being reported as far out as 5 years post op. So there is so much hope. Yes, healing may be slow, yes, you may get some new pains that you weren't aware of, so just stay positive and realize things are healing. Another thing that you can be hopeful for is that our brains and nervous systems are remarkable. It has been shown that when there is nerve damage, sometimes our brains learn a new route to take.Just be very careful and aware of any medicine you may be taking. Sometimes the side effects cause other issues that aren't pleasant. Good luck and praying for healing.
Wow! 5 years, that's amazing :) Where did you read that?
Also... very well written response, thank you<3
Donna Mace said:
From what I understand...
Bill,
Read these links about Central Nervous System Neruroregeneration. I agree with Donna's statements about nerves being damaged and may not receive signals or are too damaged to process them. A lot of Pain Specialist think that some people have chronic pain because the damaged nerves are like on a reel to reel tape recorder & they just keep resending the signal for no finite reason. When they did my emergency CM & C Spine Surgeries my cranial nerves were stretched too far for for too long. My surgeries lasted 16 hours. I am in constant pain because of the stretched nerves, I was also very interested in the possibility of Nerve Regeneration. Everything I have read today says that it is impossible for Central Nervous System Nerves to regenerate. My CM surgeries were 7 years ago. I wish more than anything this was possible & hope one day researchers will be able to regenerate CNS Nerves. I don't want anyone to suffer as I have & do daily. The Peripheral Nervous System can regenerate damaged nerves under certain situations. The Research is definitely promising and very interesting. I hope in our life time they can unlock the secrets to the CNS Regeneration.
Donna,
Please do not think I believe in any way you gave incorrect information on purpose. I know we all hear many things re: CM. I researched the CNS neuro regeneration, because I wanted to know as much as possible & hoped it was true more than you will ever know.
Tracy Z.
http://biomed.brown.edu/Courses/BI108/BI108_2001_Groups/Nerve_Regen...
http://en.wikipedia.org/wiki/Neuroregeneration
http://ntp.neuroscience.wisc.edu/neuro670/reqreading/RegeneratingTh...
http://www.brc.cam.ac.uk/principal-investigators/james-fawcett/axon...
Hi ...
I am sorry that your mom is uneducated about your surgery...the way my NS explained it to me was .."Your CSF was not flowing right for at least your entire adult life, if not your entire life...therefore, it is going to take the brain/body a while to 're-calibrate' to the new CSF flow..and it could take a year , maybe more..."
He was so right....but I did feel improvment in some areas earlier in recovery.....Hang in there....We are here for you.
Peace,
Lori
Dr. Michael Rosner told me that a patient of his has been reporting improvements 5 years out. The nerve issue, I can't honestly remember why it stuck in my brain the way it did. I know some of the inspiration was with the actor, Christopher Reeves and some of his physical therapy regiment and the goals. The other source of inspiration for the new pathways is based on my mother-in-law who has since passed away. Rita,of whom I speak; had strokes and then a major stroke that left the right side of her body paralyzed, took away her ability to speak and to read. Years later, she was able to read again, it was so amazing. Some mornings (years after the stroke ) you could hear her say clearly "good morning" when speaking to her bird. So in my uneducated and non researched opinion, something was improving in her brain. But it seems to me I heard some other information somewhere, but for the life of me, I can't remember and I never researched the info. Hopefully, I didn't post any wrong information here.
Bill Zern said:
Wow! 5 years, that's amazing :) Where did you read that?
Also... very well written response, thank you<3
Donna Mace said:From what I understand...
Thank you Tracy, If I posted incorrect information, it was stuff I heard about years ago and it always stuck with me as something inspirational as to never give up on some body who has suffered any type of brain damage. Of course, now that I look back, I guess I was focused on spinal injuries and stroke victims. Then I heard snippets of information and just took for granted that it would be accurate. However as I posted a reply to Bill, my mother-in-law had a remarkable recovery in the reading aspect of her ordeal. Okay, I think it was her doctor that said her brain learned a new pathway to read again. I wish I could remember the words he said because it has been so many years ago. But I do know for certain that she couldn't read after her stroke and was like that for many years and it may have been 6 yrs post stroke when she got the ability back. You should have been at our house when she discovered she could read. She excitedly motioned for me to come over to the table where she was looking at a book.She gestured with her hands and skimming the lines to indicate she was reading. So upon questioning her, she emphatically said, "u hu, u hu". Then I read out loud to her the words on the page and asked her if that is what she read, and she replied the same thing to me. Then after that, she became an avid reader again. But I don't know if her story is helpful here or not for the nerve damage issues, it just seems like it was a slow healing process for Rita and it just seems to me that it could be possible for other things as well. So if this isn't useful for Chiari patients, maybe somebody could use the inspiration if they know of a stroke victim. :)
TracyZ said:
Bill,
Read these links about Central Nervous System Neruroregeneration. I agree with Donna's statements about nerves being damaged and may not receive signals or are too damaged to process them. A lot of Pain Specialist think that some people have chronic pain because the damaged nerves are like on a reel to reel tape recorder & they just keep resending the signal for no finite reason. When they did my emergency CM & C Spine Surgeries my cranial nerves were stretched too far for for too long. My surgeries lasted 16 hours. I am in constant pain because of the stretched nerves, I was also very interested in the possibility of Nerve Regeneration. Everything I have read today says that it is impossible for Central Nervous System Nerves to regenerate. My CM surgeries were 7 years ago. I wish more than anything this was possible & hope one day researchers will be able to regenerate CNS Nerves. I don't want anyone to suffer as I have & do daily. The Peripheral Nervous System can regenerate damaged nerves under certain situations. The Research is definitely promising and very interesting. I hope in our life time they can unlock the secrets to the CNS Regeneration.
Donna,
Please do not think I believe in any way you gave incorrect information on purpose. I know we all hear many things re: CM. I researched the CNS neuro regeneration, because I wanted to know as much as possible & hoped it was true more than you will ever know.
Tracy Z.
http://biomed.brown.edu/Courses/BI108/BI108_2001_Groups/Nerve_Regen...
http://en.wikipedia.org/wiki/Neuroregeneration
http://ntp.neuroscience.wisc.edu/neuro670/reqreading/RegeneratingTh...
http://www.brc.cam.ac.uk/principal-investigators/james-fawcett/axon...