Cheers to everyone!!! I'm glad that there are people with the same problem with me,and even that this site exists,because in my country (Bulgaria),this diagnosis doesn't meet up with most of the doctors knowledge...I hope for all of us to find the cure for the terrible symptoms that our bodies and minds experience!!! I was diagnosed with Arnold-Chiari Malformation type 1 in February 2014,although all my symptoms and the MRIs declared that it's type 2.I was operated right away,after struggling to find the diagnosis after almost 3 years of constant blinding headache,abnormally high blood pressure (from 160/120 up to 240/180),going in and out of numerous hospitals,and the dizziness,the feeling that I'm beaten almost to death every single morning as soon as I open my eyes and the sleepiness,that was destroying me!Well long story short,they decompressed and the promination of the tonsils was 26,7 mm.They sent me home after 2 weeks in hospital.For the following week my total amount of sleep was about 3 or 4 hours,cause of the 3 times harder headache,i was again in the hospital with Spinal fluid leak,after 2 more weeks i was sent home again.For half an year I managed to somehow revive myself,neglecting the mean pain in the neck and I was doing kinda good.But for about 4 months everything came back again....everything!I went to 4 neurosurgeons,but every one of them told me there is nothing more they could do,but the tonsils were still 4 mm prominating.They told me to see a Cardiologist to adjust my high blood pressure therapy.I went and there were absolutely no cardiology problems identified.I don't know what to do,please If you've read my story,share yours and be free to give any opinion and advice possible!!! Btw I'm 20 years old :)
P.S. I am almost falling asleep right now and I woke up just 3 hours ago,i believe you know how it feels... :(
I had surgery 5 weeks ago (1-26-15). Although my vision loss & jerking/twitching has stopped, my pain has stayed the same in some areas & gotten worse in others, & my short-term memory is awful now. I was happy when I discovered this site too, because a lot of the various doctors I had seen were trying to tell me everything I was feeling was just in my head, & I KNEW it wasn’t. I know how you feel. I wish I had good news for you, but just know you’re not alone!
Wow! I just want to honor what a tough and courageous journey you have undertaken. My story is similar but quite different.
I just want to share with you that I met the conditions for surgery due to my clear block of CSF fluid in my posterior fossa. The wonderful team at The Mayo Clinic told me I should avoid surgery because many people find that their symptoms return over time.
I believe many people have had great outcomes with surgery and some have not. I have avoided surgery but my new fainting and collapsing symptom is getting ridiculous and I am not allowed to drive.
However, I am becoming more open to surgery as an option because this has been my hardest year.
I wish you well and please know you are in my prayers. I would appreciate an update.
Peace, B
Thank you Jules. That is so critical to remember that we are not alone. I am in grave pain and cannot get any rest. Ugh! I am sick of counting sheep. Hmmmm. How to make this more interesting.
Night night, mates. Bri
First of all I’m so sorry that you’re 20 years old and are dealing with this nasty condition. I had decompression surgery on December 5th and still experience pressure and pain in the back of my neck. And believe. Me when I say you are not alone in the fatigue and sleep issue. In addition to Chiari, I have fibromyalgia and osteoarthritis and all I w as by to do is sleep. Unfortunately, I can’t sleep all day, every day. But when you can sleep…do it. Sleep is a beautiful thing.
Hi to all of you,my unfortunate fellows ! I encourage you,fight with all the optimism that you preserve in your body and mind,for three years nobody could tell me what was wrong with me,and the neurosurgeons didn't even saw the malformation in the first MRI...Be strong and I hope we could support each other !!! Rissap,i agree that the sleep is a beautiful thing,but I don't seem to achieve any relief or any "sleep" at all. I drink coffee a LOT,just so I could get up in the morning and live my life,but my optimism always gets me up.I train 3-4 times a week and try to walk and to do any kind of movement,cause if i stop I'll just fall asleep standing on the sidewalk...Fortunately for you in USA,England,Netherlands,Spain or any other civilized countries you've got specialists who know what you're talking to them.Here - there is whole other story,for the 3 years of hospitals and the examinations,the doctors were just about to tell me it's all because of stress...haha.Anyway,what do you do for the sleep troubles and the headaches :(
So sorry to hear of your struggles with this disease. I have Syringomyelia, Chiari Malformation l, and osteoporosis. I have a success story but let me tell you that it took years. My surgery was in 1993. Had a spinal fluid leak 2 months after that only to go through a repair of the dura patch. Two months later the leak reared its ugly head again. My surgeon chose to wait. And little did I know it was a blessing. The leak after I year took care of itself. 20 years later I still have pain but that pain has lessened through time. So to all of you … DO DON’T EXPECT YOUR SURGERY TO DO MICACLE OVERNIGHT. JUST WILL NOT HAPPEN. As far as sleep goes, I have taken Ambien for almost 15 years. That is unheard of but I sleep. And sleep heals your body. So get something to help you sleep. Depending on your pain just a simple aspirin may work and for others you may need something stronger. Just know that miracles don’t happen overnight and rest is the great healer. I was there once too. Prayer to all!
Oh...What a horror story! 26.7 mm? I was 17 and thought that was bad. I have had 3 surgeries and my symptoms are returning...I know how you feel.
I have the pain and pressure in the back of my head and neck too all the time...3 surgeries later!!!
rissap0924 said:
First of all I'm so sorry that you're 20 years old and are dealing with this nasty condition. I had decompression surgery on December 5th and still experience pressure and pain in the back of my neck. And believe. Me when I say you are not alone in the fatigue and sleep issue. In addition to Chiari, I have fibromyalgia and osteoarthritis and all I w as by to do is sleep. Unfortunately, I can't sleep all day, every day. But when you can sleep.....do it. Sleep is a beautiful thing.
abbydabby195 I'm really sorry to hear that,my problems started when I was 17 too !!! That pressure continues with me too,along with everything else...Hope,optimism and refusal to be let down because of that diagnose are the main things to live by!!!
Karen McCann I too have break of spinal fluid right now,but the neurosurgeons tell me that there's no point in taking it out,because it's gonna be there again in the morning,so I hope it'll come up as good as in your case if I leave it this way! I don't believe that surgery will make it all go away,I just hoped for some improvement for more than 3 months after the surgery...It appears not... I'm going to a cardiologist to retouch my therapy for the high blood pressure,cause this one makes me even more sleepy...
I’m so sorry. My symptoms came back after 6 months of surgery.i have a great neurologist now and unfortunately I have tried everything there is to try. Nothing helps. I take pain meds every day and just try to make the best of it. I’m 45 years old and my pain didn’t get ad until I was in my 30’s. I’m so sorry you are so young. My neck pain even worse after surgery and now have trouble holding my head up. Prayers you feel better.
I'm sorry to hear that Karen,be strong mentally and you'll manage to cope with everything! I've tried maybe about 25 different meds for the pain but nothing has helped so far,my mind is soooo blurred that I can't even think straight most of the time cause of it and the pain.My neck is ABSOLUTELY the same,just can't hold my head up and my girlfriend always tells me I'm finding most comfortable some really abnormal body positions when I'm sitting.And Karen ,would you please tell me what "Ad pain" means? :) I'm almost positively sure it's not "abdominal" haha. Prayers for you and to all !!!
Hi Karen, first of all please know I will pray for you … For increased energy and overall good health. After my surgery, rest, sleep were crucial. 2 weeks after being home I started physical therapy. I couldn’t move my neck, my head felt like it weighed 500 pounds, couldn’t walk because my balance was off. I experienced memory loss, every possible side effect I had. Slowly but surely with physical and occupational therapy I began to get my strength back. I do also believe that the right combination of meducation helps, rest and therapy will get you back to what is normal for us, The Chiari Clan. Prayers and love being sent your way.
Rissap,could you tell me what medication were ypu on after the surgery and till now,if you can of course… I was the same case as you…
DKK, when I was discharged from the hospital I was put on oxycodone 5mg every 4 hours and because I have fibromyalgia he recommended 5mg valium every 4 hours as well. My doctor just wanted to make sure the muscles around my incision didn’t swell up around my incision site. After 4 week he extended my medication time to every 6 hours, then 8. The therapy really helped…I highly recommend it. Good luck to you DKK.
Thanks for the post Rissap!!! I’m really glad it helped you so much,i’ll ask mu neurologist for this! Did you have problems like constant exhaustion,the feeling that you’re gonna fall asleep every moment,the foggy brain and the disability to concentrate and not fall asleep…
I’m sorry my typing as been terrible. I meant to say I didn’t start getting symptoms until I was in my 30’s