I am so happy to be a part of this group, & thank you everyone for always answering questions & giving support! We all get scared & have suffered from a multitude of symptoms caused by this thing we call chiari. Just for fun, to raise my spirits, & hopefully some of yours, I would like to hear from people who have had surgery & have had good results! Dont get me wrong, its important to talk about our bad experiences & our pain, but for now, lets celebrate some stories with happy endings, what do you say guys? anyone out there happy they got surgery?
I am extremely happy I had the decompression surgery. From the moment I woke up from my surgery I felt 100x better. I had a constant Chiari headache and dizziness quite often. The headache was gone when I woke up, however my neck was very sore. I occasionally experience dizziness, but nothing like before my surgery. I also experience fairly severe short term memory loss. I have not had a headache since my surgery, and it has now been a year and a half. The only downside, I think, is that I am very wary and cautious about physical activity, however, before my surgery I was told to immediately stop all physical activity anyway. Hope this helps you!
I have no regrets about having my decompression surgery! I have seen great improvements in my headaches, dizziness, tingling, numbness, and especially with my fatigue. I was barely able to make it to work before and spent all my free time in bed. Now at 9 months post-op I work full time and am able to do chores, socialize, and exercise when I get home.
I’m a success story. I teach full time, sing and run 20+ miles a week plus half marathons. Before surgery, 3 years ago, I used a cane, had left hand pain, memory issues, left eye pain, swallowing issues, neck pain and headaches. Two weeks ago I hiked more than 50 miles in the Rocky Mountains. I still have pain come back and need to listen to my body, but life is much better!
I'm 10 weeks out from my decompression...I'm thrilled I had it done!!! Specifically here are my improvements:
* My headaches are far less frequent and far less intense. I usually can just take two tylenol when I feel one coming on. I honestly think most of my current headaches are from tension I still have in my neck from the surgery. So, sometimes I take a muscle relaxer also.
* My hypersomnia (EXTREME fatigue) is much, much better. I only need about one or two naps a week as opposed to one to two a day. I can actually drive my car from point A to point B without fear of dying along the way.
* Brain fog is seriously lifting! I told my husband that I wonder how long I have been sick and didn't realize it. I am able to think much more clearly than I've been able to for the past several years. My creativity is really returning also.
* My arm numbness was gone the very afternoon I woke up from the surgery.
* I am back to Zumba and even tried push ups, plank, and very light weights last night.
* I have been weening myself off of an antidepressant I have been on for at least 3 years. I've completed two weeks at half dosage without feeling down and out. My doctor and I meet again in two weeks to discuss coming off slowly but completely.
Aside from what the surgery has done to help me, the Chiari journey itself has positively changed me too. I have learned how to better understand when others face difficulties how I can be there for them. I felt so loved throughout my struggles this past year and I want to make sure others feel that way when they are faced with trials. I appreciate every day so much more now - with my husband, my kids, my mom, and all the people I love. Nothin' like brain surgery to help you gain perspective as to what matters most in life. My husband and I both talk frequently about how our hearts have been softened through all of this. We cherish moments so much more now.
I would be happy to chat with anyone who is trying to decided if they should have surgery or not. No doubt it is a huge decision to make and a tough road to travel for a time. But, walking with Chiari is a tough road already...THERE IS HOPE!!! Please message me if I can be of any help to any of you. I thank the Lord for all that He has done through Chiari and the decompression surgery!
Hello there Jessica! My name is Kat and I am 2 months post op! I am 24 years old a model and happily married. My surgery went very well and my recovery is surprising me every single day! Before I could not even ride in a car or ever dream of starting a family, now I am traveling to other states with minimal symptoms and my husband and I are Finally able to start planning to have children. I have always felt like a burden on the people around me now I am apart of what’s going on! I still have pain and bad days but not even close to before surgery! I am off pain meds and clear headed for the first time in so long. I am greatful for my surgeon, my family and friends and my husband for dealing with everything that goes with chiari!!! I can answer any questions if anyone is curious! I am still limited on how much I can do and my headaches can still last for days But most of the pressure is gone!
I just want to thank everyone for their inspiration stories, I am 6 weeks post op and not sure how I feel. some days are difficult and I cannot decipher which pain it is. although the dizziness is gone I still have some neck pain. but again it’s early in the game so only time will tell
I am thrilled to hear of the improvements, I am going to have surgery in August after waiting and wondering. My symptoms have really gotten worse and I know it needs to be done. I have been afraid but I am trying to look at the big picture and know I want to feel better than I do now, thank you for the hope!!
Suzy
nancyejane said:
I'm 10 weeks out from my decompression...I'm thrilled I had it done!!! Specifically here are my improvements:
* My headaches are far less frequent and far less intense. I usually can just take two tylenol when I feel one coming on. I honestly think most of my current headaches are from tension I still have in my neck from the surgery. So, sometimes I take a muscle relaxer also.
* My hypersomnia (EXTREME fatigue) is much, much better. I only need about one or two naps a week as opposed to one to two a day. I can actually drive my car from point A to point B without fear of dying along the way.
* Brain fog is seriously lifting! I told my husband that I wonder how long I have been sick and didn't realize it. I am able to think much more clearly than I've been able to for the past several years. My creativity is really returning also.
* My arm numbness was gone the very afternoon I woke up from the surgery.
* I am back to Zumba and even tried push ups, plank, and very light weights last night.
* I have been weening myself off of an antidepressant I have been on for at least 3 years. I've completed two weeks at half dosage without feeling down and out. My doctor and I meet again in two weeks to discuss coming off slowly but completely.
Aside from what the surgery has done to help me, the Chiari journey itself has positively changed me too. I have learned how to better understand when others face difficulties how I can be there for them. I felt so loved throughout my struggles this past year and I want to make sure others feel that way when they are faced with trials. I appreciate every day so much more now - with my husband, my kids, my mom, and all the people I love. Nothin' like brain surgery to help you gain perspective as to what matters most in life. My husband and I both talk frequently about how our hearts have been softened through all of this. We cherish moments so much more now.
I would be happy to chat with anyone who is trying to decided if they should have surgery or not. No doubt it is a huge decision to make and a tough road to travel for a time. But, walking with Chiari is a tough road already...THERE IS HOPE!!! Please message me if I can be of any help to any of you. I thank the Lord for all that He has done through Chiari and the decompression surgery!
Thank you, I was so afraid of the surgery. But I am more afraid of these symptoms that keep getting worse. I don't think anyone really understands how much it makes you hurt and limits you. Mine will be in August, thank you!!
Suzy
Quiltaholic said:
I consider myself a walking Chiari miracle! I am only 9 days post op. The majority of my neurological symptoms resolved the moment I opened my eyes. I am 64 and suffered for 26 years because of misdiagnosis. Who would believe a 64 year old could out of this surgery as well as I have. The lingering issue was my head tremor but he told me to give it a month. 2 days ago I woke up and it was gone! My major symptoms were extreme fatigue, weakness, tremor, ataxia, loss of balance, hoarseness, slurring and stuttering in my speech, muscle contractions on the left side of my body, foot drag, loss of fine motor skills, diminished gag reflex, IBS, POTS and high blood pressure. I never got the "classic" headache and vertigo...maybe if I had, I would have had the correct diagnosis much sooner. I am now off hypertensives and BP checked 3x a day is normal. The only lingering symptoms seem to be the fine motor skill thing, hand writing and trying to automatically form the next letter is not there yet. I may have to practice like a grade schooler to get that back! Short term memory is still bad too.
I have had many surgeries in my 64 years and believe me this one was a far less painful one than many of the others. The apprehension was far worse than the reality. I am so elated that I really think I am the happiest person on the face of this planet! Just think, if I am this good now, imagine at the 1 year mark!
Any questions, just message me and best of luck. Just make sure you pick the best neurosurgeon you can get your hands on!
Thank you for sharing your story!!! sometimes we forget to talk about the good!!! soo happy for you!! & soo happy for the hope
Suzy said:
I am thrilled to hear of the improvements, I am going to have surgery in August after waiting and wondering. My symptoms have really gotten worse and I know it needs to be done. I have been afraid but I am trying to look at the big picture and know I want to feel better than I do now, thank you for the hope!!
Suzy
nancyejane said:I'm 10 weeks out from my decompression...I'm thrilled I had it done!!! Specifically here are my improvements:
* My headaches are far less frequent and far less intense. I usually can just take two tylenol when I feel one coming on. I honestly think most of my current headaches are from tension I still have in my neck from the surgery. So, sometimes I take a muscle relaxer also.
* My hypersomnia (EXTREME fatigue) is much, much better. I only need about one or two naps a week as opposed to one to two a day. I can actually drive my car from point A to point B without fear of dying along the way.
* Brain fog is seriously lifting! I told my husband that I wonder how long I have been sick and didn't realize it. I am able to think much more clearly than I've been able to for the past several years. My creativity is really returning also.
* My arm numbness was gone the very afternoon I woke up from the surgery.
* I am back to Zumba and even tried push ups, plank, and very light weights last night.
* I have been weening myself off of an antidepressant I have been on for at least 3 years. I've completed two weeks at half dosage without feeling down and out. My doctor and I meet again in two weeks to discuss coming off slowly but completely.
Aside from what the surgery has done to help me, the Chiari journey itself has positively changed me too. I have learned how to better understand when others face difficulties how I can be there for them. I felt so loved throughout my struggles this past year and I want to make sure others feel that way when they are faced with trials. I appreciate every day so much more now - with my husband, my kids, my mom, and all the people I love. Nothin' like brain surgery to help you gain perspective as to what matters most in life. My husband and I both talk frequently about how our hearts have been softened through all of this. We cherish moments so much more now.
I would be happy to chat with anyone who is trying to decided if they should have surgery or not. No doubt it is a huge decision to make and a tough road to travel for a time. But, walking with Chiari is a tough road already...THERE IS HOPE!!! Please message me if I can be of any help to any of you. I thank the Lord for all that He has done through Chiari and the decompression surgery!
Thank you so much for sharing! I am so happy for you, & needed some good stories!
Jeannean Miller said:
Hello there Jessica! My name is Kat and I am 2 months post op! I am 24 years old a model and happily married. My surgery went very well and my recovery is surprising me every single day! Before I could not even ride in a car or ever dream of starting a family, now I am traveling to other states with minimal symptoms and my husband and I are Finally able to start planning to have children. I have always felt like a burden on the people around me now I am apart of what's going on! I still have pain and bad days but not even close to before surgery! I am off pain meds and clear headed for the first time in so long. I am greatful for my surgeon, my family and friends and my husband for dealing with everything that goes with chiari!!!!! I can answer any questions if anyone is curious! I am still limited on how much I can do and my headaches can still last for days But most of the pressure is gone!
AWESOME!!!! thank you so much for sharing!!
Miranda Dillard said:
I'm a success story. I teach full time, sing and run 20+ miles a week plus half marathons. Before surgery, 3 years ago, I used a cane, had left hand pain, memory issues, left eye pain, swallowing issues, neck pain and headaches. Two weeks ago I hiked more than 50 miles in the Rocky Mountains. I still have pain come back and need to listen to my body, but life is much better!
It absolutely does help, & congrats on your improvement!!! thanx!
kerr_mac said:
I am extremely happy I had the decompression surgery. From the moment I woke up from my surgery I felt 100x better. I had a constant Chiari headache and dizziness quite often. The headache was gone when I woke up, however my neck was very sore. I occasionally experience dizziness, but nothing like before my surgery. I also experience fairly severe short term memory loss. I have not had a headache since my surgery, and it has now been a year and a half. The only downside, I think, is that I am very wary and cautious about physical activity, however, before my surgery I was told to immediately stop all physical activity anyway. Hope this helps you!
I love reading all of these stories!! So awesome (especially since now I can be one of them…) I had surgery the day after I received my high school diploma, May 23, and although I was impatient at the beginning, I’m a million times better than I was before surgery. They told me to embrace my last headaches in case I never had them again, and even as they rolled me into the OR I was suffering from a bad Chiari migraine. After? Nothing. No headaches! Of course, being barely 6 weeks post-op, I’ve had my share of sore neck and nerve-regrowing head pain, and my surgeon even told me that since I lost a lot of csf during surgery, my having a week of extreme pain right after being released was normal. My body still needed to balance it out, I guess, and although that week sucked BAD, ever since I’ve been steadily getting stronger and more active, and I no longer require a daily 3 hour nap!! I’m 18 and I have been taking naps to relieve my fatigue daily for almost 2 years, and now I don’t need them. If that’s not a miracle, I don’t know what is.
Oh! And pre-op, NO pain meds could touch my pain. NONE. I was on the strongest narcotics my doc could legally prescribe me and they didn’t come close to touching my pain, but now I can take ONE Tylenol and I don’t hurt! TYLENOL! I don’t regret the surgery one bit. I may not have had the most exciting summer, but it’s been the most painless one of my life!
I would love to provide encouragement to others that are on this difficult journey, whether they are trying to navigate the medical system to get the help that they need, contemplating if they should have surgery, or are about to undergo surgery. I want you to know that it doesn't have to be a nightmare experience. I want more than anything to offer support and encouragement to you. JUST 3 wks ago...I was still lying in a recliner with awful sx, desperately awaiting our trip to MD to finally have my decompression/craniocervical fusion surgery with Dr Fraser Henderson (who I will be eternally grateful to). Let me just tell you that I AM A WALKING MIRACLE! My surgery went amazingly well....and my post-op recovery was even more amazing (truly a miracle). Within an hour of being brought to my room from recovery, Dr H walked over to me, took me by the hands and pulled me to my feet, had me walk over to a chair, up on my tiptoes and rocking on my heels (checking neuro function) then sitting up for hours. I barely used pain meds.....had no pain in any of the 3 incision sites, and was discharged in 2 days! He called me a miracle. Within a week I was just taking tylenol as needed.....and was able to go into DC to watch the 4th of July parade/fireworks. I have progressively been doing well.....just tired! I have no pain and just about all of my pre-op symptoms are resolved. When your head is attached, it's amazing how well the body can work. I am forcing myself to lay low still b/c I know that my body is working hard to heal....but I have never felt so alive and restored in my life!
At my post-op apt. Dr H handed me the surgical report that is so detailed in terms of all that I had wrong and all that he did to fix me. My official diagnoses are:
Ehlers-Danlos Syndrome with craniocervical instability, chiari 1 malformation, foramen magnum stenosis, kyphotic clivo-axial angle, spina bifida occulta with instability at c-1, and cervicomedullary syndrome!!!!
QUITE A MOUTHFUL HUH?? In English....I was a walking time bomb! My brainstem & spinal cord were so compressed that when he did the sensory evoked potentials before surgery it took way longer than it ever should for the electrical message to reach my feet, which indicates spinal cord issues. It also took him 30 pounds of traction force to lift my head off my spinal column so that it wasn't compressing everything. He used a rib to help build up my skull so that my skull won't fall down on my brainstem/spinal cord and once everything was in perfect alignment and just where he wanted it, he used plates and rods and screws to hold it all together. He was able to put my clivo-axial angle back to perfect so that there is no more brainstem compression. He removed one of my nerves that would have been compressed by the hardware to avoid future problems. I haven't noticed anything at all so guess it's not an issue!
He went down the list of all the symptoms that I had pre-op to see how they are doing.....I think just about every one of them have resolved. I told him about how amazing the dreams are that I've had since surgery....I literally haven't dreamt in years so the surgery has obviously helped my sleep cycle as well. I hope that means less fatigue!
When I read his report, it leaves me in awe of how I walked around for so many years like this....clearly feeling awful and having days that I layed in the recliner more than anything else...but I am in awe that I was still functioning. I should not have been. Again....only by the grace of God!
It makes me very excited to come home and make MANY copies of this report and write many letters to all the jerk doctors that had the nerve to tell me that nothing was wrong....that dismissed me like I was crazy....that blew off the PT who clearly knew what he was talking about....and who literally let me walk around like a time bomb and deteriorate far more than I ever had to. I hope it knocks them down a few pegs and checks their arrogance just a little bit. The next time a patient goes in with issues similar to me maybe they will think twice before being such jerks! That will be my next phase of recovery..... I was lucky enough to have the determination and empowerment to fight until I got the answers...others aren't as lucky!
I truly believe that I expereienced a miracle in MD. I came home and quickly got it all down on paper b/c I never want to forget the details of this experience. I have attached it for those that are interested in reading it. If I can help anyone or offer encouragement, answer questions etc... don't hesitate to contact me!
My file was too big to attach....I removed photos...so hopefully it'll work now!
358-MyMIRACLEstory2.doc (43.5 KB)Welcome,Jessica glad you’re here it is so good to have so much in put on this site and you are at the best place.everyone here knows the loneliness of chiari,we sure have many knowledgable people.I am very greatful to God and a very chiari smart NS My life is better than it’s been in many years,lots of blessings to speak about,nothing better than to be encouraged by so many even better to be able to help anyone along the way Thanks be to God!
Di,
What an inspirational story! Good for you! I am still on my journey and hope to be writing a happy ending story of my own. i had a decompression 5 mos ago and am wondering if I could possibly have an instability. How did you come about the diagnosis of your instability? Specifically, what radiologic/ imaging did you have that allowed your doc to see it? I believe I have EDS because I scored high on that part of the exam with my neurosurgeon, and my almost non-stop headache is still going on after 5 mos. I do have some days with little to no pain… Is that possible with an instability? Thank you!
Jenn
I am two days post op. I feel fantastic considering how I felt before. Dr. Carrie Muh at Dukes Children hospital did my surgery. Herself and her team were fantastic!!!!!!!!!!!!!!! I'm leaving the hospital today to go home. My incision is not painful anymore. Dr. Muh has a technique that I hadn't heard about from other neurosurgeons. Instead of slicing right through the muscles in your neck, she peels them back to promote quicker and better healing. I have full motion of my neck and everything else. I've done my own little neuro checks, such as brain teasers and brain games and have done well. I feel like I did before the surgery. My head still hurts a little and is a little stiff but that's as to be expected. I've already showered, ate, and been walking the floors today.
Now on the note that I am at the childrens hospital, Dr. Muh is a pediatric neurosurgeon. My first referral was from an adult neurosurgeon at MUSC in SC. He was horrible, didn't know what he was talking about and made me feel very uncomfortable. I then got a referral to an adult neurosurgeon at Duke who specializes in Chiari 1 but after reviewing my MRI he referred me to Dr. Muh because my Chiari looked a little more advanced than the normal Chiari 1. I thank him a million times over for that. Dr. Muh and her team have an excellent bed side manor and explain everything in great detail. She's very confident and makes you feel comfortable with everything she's doing.
jcdemar said:
Di,
What an inspirational story! Good for you! I am still on my journey and hope to be writing a happy ending story of my own. i had a decompression 5 mos ago and am wondering if I could possibly have an instability. How did you come about the diagnosis of your instability? Specifically, what radiologic/ imaging did you have that allowed your doc to see it? I believe I have EDS because I scored high on that part of the exam with my neurosurgeon, and my almost non-stop headache is still going on after 5 mos. I do have some days with little to no pain... Is that possible with an instability? Thank you!
Jenn