My daughter underwent decompression surgery for Chiari I about 18 months ago. She still gets headaches occasionally and was diagnosed with migraines about a month ago and takes medication for that as well. She was trying to take a full semester at college, but had to drop down to part-time due to uncontrollable daytime sleepiness. She took Provigil (a stimulant for narcolepsy) which did nothing, and was just prescribed another stimulant like Adderal (I forget the name of it - starts with a V), which is used for ADHD. She took a pill, then two hours later fell asleep for a few hours. This condition is more debilitating than the pain from Chiari, and no one seems to have a clue as to the cause. She had a basic sleep study done to rule out apnea and such, and will be having another more involved one as soon as the semester ends. She sleeps about 8-10 hours at night, wakes up, falls asleep about 2 hours later, goes to a class, comes back to her room for another nap, then finds it hard to make it to bedtime without falling asleep. Some of the doctors are hinting at depression, but her psychiatrist has her on Lexapro and doesn't believe it's depression either. The psych is concerned that this is a brain stem thing or an aftereffect of Chiari surgery, or some other neurological condition. Has anyone else experienced something like this?
Well 18 months is soon to be doing a lot especially if there is something else going on. And yes, Chiari can cause fatigue even post op...many of us have auto immune thyroid issues like Hashimoto's which can affect how tired we are, and some have EDS which is a connective tissue disorder which can cause joint pain (mis-dx'd as fibro) and can also cause mal absorption of vitamins and minerals.
She should have her potassium, magnesium, vit D and B12 checked....
The brain stem compression can cause us to have depression issues, and anxiety and it is more the brain stem then other causes more typically noted for these issues.
Look at her daily activities...she may have been over doing it and it could just take time for her body to catch up...we all have to listen to our bodies, we can not use a pre determined time line as to when we can do something or how much we can do...we have to try and see and cut back when our body says it is too much....hers is saying she is doing too much.
It can take up to 2 yrs to heal completely from this surgery, and some of us heal slower then others....
Thanks for responding so quickly. It's interesting that you say 18 months is soon to be doing a lot. My daughter's NS brushed off her complaints about fatigue and pointed out that with her follow-up MRI with cine being normal, she should be fine. It's so frustrating that all the doctors and people in general believe her recovery should be over by now. She's tried so hard to resume a regular schedule, but this fatigue is overwhelming. Are you saying many post surgical patients feel this way?
Coincidentally, she was diagnosed with Hashimoto's thyroiditis at least a year before the Chiari was detected. We check her thyroid hormone levels every 6-8 wks and the endocrinologist fine-tunes the medications accordingly. It seems her thyroid is very unstable, which I'm sure adds to the fatigue, even when it's within normal limits.
I'll take your advice and have the vitamin and mineral levels checked. Thanks again for giving me information that no one else has shared so far.
The biggest problem for us, chiarians post op is care...too many did not have a NS that was well informed on chiari. It is important that we find and go to true chiari specialists.....
Even tho the CSF flow was restored, does not mean she still did not have internal swelling that could cause an issue, the more we do the more blood and CSF flows which can constrict due to ne swelling...so even tho the flow was fine for the MRI, she was not active for that or just b4 that...
From what I am learning about chiari and know from experience is, that chiari is life altering...surgery or not.....and having the surgery myself I know how I felt post op and I do take longer to heal but from talking to others with chiari post op since Sept of '08 I see a pattern forming, and that is we have to wait longer to return to regular activities.....those that do not suffer set backs.
Moderation is key....and knowing what all is going on...IE- thyroid, vit levels, and any other related conditions.
Is there a way you could direct other members to my question about exhaustion? DD is talking with the counseling dept at her university about possibly withdrawing. It's past the deadline and there will be consequences. I was hoping that if other chiarians experienced the exhaustion and difficulty concentrating that make it impossible to study, or even make it to class, they could share their stories with DD and she'd feel less like a failure. This is a very emotional decision, and I know she's afraid some of her family members, including her father, will see her as a quitter, or lazy. She was an honors student before she became sick, first with Hashimoto's, then Chiari, and people had very high expectations of her. She was capable of getting into an Ivy League school. Now she can't manage 3 courses. I'm afraid the emotional recovery will be far worse than the physical. Maybe she won't beat herself up so much if others relate similar difficulties.
Thanks again, Selma. You've been such a help already.
I am reading your post and I got really emotional, because being a chairian and having surgery sounding like same as your daughter I can totally relate. I am 49 so I am a lot older, but I know the flustration. With me I had to have acturally 4 surgeries in 4 months. 3 of them on the head. It really set's us back having surgery. I never had surgery before having decompression surgery. It's a major surgery that I think for people who were active, people before being diagnosed has a big problem with. As Selma states and I have found out that having surgery isn't a cure. It help's and I don't regret it for a minute, but it is a life altering. I am dealing with not being able to return to work. A job that I loved and I hated to leave, but I know in my heart I can't do any more. Please tell your DD that she is not alone and she should only do what her body allow's. I know how flustrating this is. Thing's I used to be able to do I can no longer do. With your daughter with school I would think her having her head bent while studying, looking up at board at school, thing's like this still give me headaches and she should avoid for a while. She is not a failure, she just need's to take time for her self right now. School will still be there. She will just finish a little later than planned. It's o.k. to look out for our self's and she will learn it doesn't matter what other's think. You just worry about you and your family. As I said I am 15 month's post op and I am dealing with the same issue's. It is flustraing, but having this forum to come and talk to has helped me so much, no one else understand's. The healing process is a difficult one. I was a person that though ok I'll have this surgery and get back to my life. God had different plan's and it's for the same for your daughter. It's good that she listen's to her body and when she need's to rest, rest. My NS told me the #1 key for recovery with chairian is Patient's. Your DD dealing with school, the pressure of it all just isn't worth is. Ask her to try to lay her head back and rest it why reading, same as looking up while in school. I don't know if these are things that still bother her, but these are the issues I deal with. Also I can't be around a lot of noise. I don't think we realize the seriousness in having this surgery and also just having anestia. I never realized what it did to our bodies. It's ok please tell your daughter that for me, and you are in my chairian prayer's. I know how you are feeling, but just take one day at a time. Maybe your daughter need's to take 1 class at a time. Only she know's. I wish you the best. Your not alone in this jouney.
I know of a member that is young and supposed to be in college and ur words sounded just like hers...it echoed what she felt when she made the decision not to go this fall.I agree it is an emotional choice and we all tend to feel like we r looked upon as lazy as u can not see what is wrong with us, we look fine...but do not have the energy to do what we would like.
This member just had more surgery and I am not sure if she is up to posting, but I will ask her to pop on when she is up to it.
Thank you for sharing your story and for the encouragement. I read your reply to DD as she was walking back to her dorm, but it probably wasn't the best timing because it make us both emotional. It does help that there are people who feel exactly as she does, though she continues to be hard on herself and feels guilty when she has to sleep rather than do homework.
I wish I could ask you more about your own experience, but I have to go out shortly. Thanks again, and hope you have good days ahead.
Thanks again. Please send my best wishes to the student who just underwent another surgery. I'll be praying for her.
This forum is invaluable both for chiarians and their families who don't understand what they've just gone through. I wish I had discovered it a year ago. My hope is to get DD to make the connection herself, but right now she's too distraught to talk to anyone.
Just wanted to let you know I am on here all the time. It's good therapy, and if I can do anything to help I am here for you. This forum has helped me make decision with surgery, has helped with recovery, and if I can help any one deal with this I would love to. Just let your daughter know she is not alone and she definetely is not a failure. She will just have to celebrate her graduation a little later than usual. Something for her to look forward to. I know how quilty she is feeling. I dealt with that with having to quit work, but with the blessing of Selma and her unconditional understanding and reaurrance it has gotten me through so far and so will your daugher.
hi! my name is molly and im 18 i am the person selma is talking about. im so sorry to hear about ur DD and whats happening. i had my first surgery in aug of 09 for chiari and on nov 7 just had my ninth surgery. i was suppose to go to college this fall at salisbury university. after being in the hospital for the month of july and the first two weeks in aug i had to make the decision that i just could not manage in college right now. i was so afraid of what my parents would think and my older brother who is a senior in college. but i no i made the right decision for me and i have come to the conclusion that this is all that matters. ur DD is NOT a failure she is a WARRIOR and she is not letting anyone down but just taking care of her health which is most important! people will see how strong she really is and if they dont then they were not a good friend in the first place. please no this is all my opinion and i am not a dr just a kid living with chiari eds ect.
Talk about a warrior! You have an amazing attitude for what you've gone through. Would you mind telling me why you had so many surgeries? It must have been so difficult being in the hospital for such long periods. Besides the pain, noise, bad food, and lack of privacy, it must have been hard to be separated from people your own age. That's part of what makes this situation so hard for my DD. I imagine your troubles started when you were a freshman or sophomore - probably even earlier. It's difficult to maintain relationships with friends when you are hurting or just plain too tired to go out. I hope you have friends who get it.
Your opinion matters very much. I'd rather hear from people like you, than from professionals who can only guess what living with chiari is like. I really appreciate your taking the time to respond. I don't know when your latest surgery was but I hope you're starting to have good days. I'm sorry you weren't able to start college right now, but like other members have said, college will still be there. I'm sure your family thinks no less of you after what you've been through, and if you want to pass along my DD's experience with trying too much too soon, it may reaffirm the fact that you made the right decision.
I'd like to give your name to my daughter, Olivia, if that's ok. She's never been on a chiari forum to my knowledge. You've already helped me, but it would make a lot more sense for her to speak with you directly. Thanks again - I'll be thinking of you and sending you good vibes.
thank you. i deff have my days but i try to keep a positive outlook. my issues started when i was five but i wasnt diagnosed with chiari untill i was 16. the reason ive had so many surgeries first off is because i didnt have the right dr the first few times now i with a good dr who has done my last 4 surgeries. theother reason for so many is because i have some related conditions as well as some not related lol. i hate being in the hospital but i no i need to to get better so i deal with it. um as far as friends go i have a few great close friends but i have lost some friends in the process of all this but i have also gained a whole chiari community which has been absolutly wonderful its like a place where i fit in. my latest surgery was nov 7 and my next one is nov 29. id be more then happy to talk with ur daughter and if she prefers facebook name is molly lichtenstein.thanks for all the encouragement!
I'm in college - slightly different situation as I am working full time & doing my graduate degree. It's tougher from a social perspective for someone wanting the "college experience" as an undergrad. But Molly is right (and AMAZING)...it's OK for your DD to take time for her health. When I first got sick, it was the middle of the semester. I made arrangements with my professors so that I didn't have to withdraw as your DD is considering...I don't know if my experience with that would help, but happy to try. Then I took the following semester & summer off. College will wait!! Depending on the program, she can probably start right where she left off and with as few or as many courses as she is comfy with.
Oh and from one over achiever to another - leaving for a while doesn't stop achievement :) I spent my "healthy" hours learning things for when I got back to school! Nerdy I know, but it made me feel better.
Wow, your story is remarkably similar. DD and I were just discussing whether she should withdraw or try to make arrangements with her professors so she can finish the semester. This is the first opportunity she's had to live on campus, and I hate for her to miss out on the college experience, as you said. She was just starting to enjoy herself for the first time in years, but the work is just too much and she has a very difficult time staying awake. Like you, she will probably take next semester and the summer off.
I had to laugh when you said you spent your time off learning school-related things. DD is an over-achiever with nerdy tendencies as well. She'll probably do the same thing.
You didn't mention how you're doing now, but I hope you're over the worst of it. I'm amazed that you're working full time and going to school. That's a big load for anyone. Any you're right - Molly rocks!
I'm glad to hear you finally found a dr you have faith in, but sorry to hear that you have to go back so soon. I'll definitely be thinking of you on the 29th. It took us a long time to find the right dr who found the chiari - most of them looked right past it on mri's. At some future point she may need neck surgery for two bad discs. Some people think they're related - the bad neck and chiari. Who knows.
I'm really hoping my daughter will join the chiari community. She's turned inward lately, and I trying to get her to reach out. There are so many great people I've heard from, including Selma. I'll let Olivia know you're on fb too in case she likes that better for some reason. Thanks again for posting. I hope you have a good day tomorrow.
Just wanted to wish you luck tomorrow. I don't know if you have another surgery scheduled after this one, but I hope this is it for a long while - or forever! I'll be thinking of you often this week. When you're feeling better, let us all know how you're doing.
Hi I am 38 years old and scheduled for surgery Oct 17th. Im really scared and worried, I have a 17,16&11 year old and I was wondering how long it will take for me to recover and if I need to find help after the surgery and for how long? Also how long does the surgery itself take? And how long does it take to get back to normal? Thank you
I wish your DD well. I was just finishing up my degree in college counseling at 45, when I became very ill. From my perspective as a college counselor and a Chiari patient, I agree that she is probably taking on too much.
If the counseling dept doesn't take her needs into consideration, then IMO, the college is not living up to their mission. There IS a way to drop out or drop back due to poor health.
As per advice above, she needs to take as good care of herself as possible. I'm fortunate in that my NS recognizes the seriousness if this condition and does not expect me to bounce back in 6 wk. (if anything, he is overprotective; how sweet is that?!)
My major symptom was fatigue, not pain--I was sleeping ~20 hr/day for > a yr--so I was Dxd with chronic fatigue syndrome. This is what I have learned: sometimes the body interprets (or disperses) pain to help us continue to stay function, or at least stay alive. I think if she needs that much rest, then she needs it. She may also still need pain meds, the right kind, if her body is protecting her from pain.
Also, sometimes w\Chiari, it takes a long time to heal from that compression. Think of a hose that has a kink in it--it never goes away, does it? I suspect that some of us don't heal as well because we still have that kink (as well as underlying conditions).
I have a Rx for Ritalin from my pcp that I have used only a couple times, when I had to drive for several hours. My NS is very opposed to frequent usage of stimulants to override fatigue or attention deficit for our condition.
I hope I was of help, in addition to the good advice you received above.
How long the surgery takes depends on ur Dr and what they find when they get inside and what all is planned...it can be ne where from 3 hrs up to 7.5 hrs....
Same thing for how long it takes for u to recover it depends on u, and how u deal with pain and healing....if u typically heal slower, then it will take longer then some of the people....the biggest problem I see people have post op is the feeling great post op and rushing to do too much and then have set backs....rest, and remember the meds r hiding a lot of the pain post op...and as u heal and get off the meds u may feel some of the symptoms as part of the healing process.....
U will need help...there is a list of what not to do post op.....and u can not do house work, lifting , pushing, pulling .....bending ....
Recovery also depends on how long the symptoms have been affecting u and if u have ne other related conditions.....
May we ask where u r going?
Post ur surgery info on the surgery date thread and do have someone post updates on ur progress : )
I just noticed the part about your DD's neck--that could be it! I had a laminectomy first, 12 yr ago; I was not fatigued (nor dizzy) after that surgery. I am 3 mo post op from posterior fossa decompression, same NS.
My NS said that the 2 problems go together ~40-50% of the time.
My daughter had surgeries for the tonsils and the neck and the tethered cord and now she has "a sleeping disorder" where she blacks totally out - twice in her car - resulting in hospital stays. I am concerned that it is something that is totally related to Chiari and can find no definite answers. Many doctors and hospitals are unaware of how Chiari's affect the body and the mind. I am afraid of this rush to judgement and if diagnosis is correct then how to relate it to Chiari. Do any of you have any information. I have offered to send her to New York to again undergo surgery or at least get tests run years ago because I knew something was not right and now the narcolepsy after a short time in hospital. She is not receptive to another surgery.
I was having the same blacking out spells that started in November. Saying they are scary is an understatement. The doctors were thinking sleep disorder at first, but nothing came of that and of all the other tests that were run. Finally I was put on an anti-seizure drug and that stopped them. I've gotten off of this medicine in the past few weeks though because of the side effects, but I have been able to control it through diet and exercise. Still not sure what exactly is causing it, but glad it hasn't happened in a while.
That story sounds exactly like mine when I was in school, except I was decompressed after I graduated. The constant fatigue would wear me down so badly that there were some days that I just couldn't go to the classes, but some how I make it through with a BS in Mechanical Engineering. The best advice I can give is to keep up hope. As long as she has that, she can make it.
My daughter never had this problem, just constant exhaustion. She's been recently diagnosed with chemical meningitis caused by a defect at the surgery site. There is something called Chiari drop attacks which happen suddenly but from my understanding they are different from syncope, or fainting. Since your daughter was hospitalized (was it from a car accident or the blackout?), I assume she had a cardiology workup. Was there an EEG done to diagnose the narcolepsy? Blackouts can be caused by many things but she should really discuss it with her NS since Chiari drop attacks are not that uncommon.
Thank you for the hopeful words and congratulations on getting your degree!
I had my surgery 3 weeks ago and am exhausted daily. I can sleep most the day away and then sleep all night long; this was happening before I was diagnosed. I read that Chiari can cause chronic fatigue syndrome. I'm hoping this is something that will decrease with time.
i am almost 6 months post op and i am always tired and worn out.. i could sleep all day if people let me and i feel no better when i wake up like i havent slept at all. also find it really had to concentrate too and i get confused alot because of it. i feel like i cant even read properly anymore. its really frustrating. but i am also still getting alot if not all the symptoms i was getting before my op and the doctors just dont seem to understand about it at all. all they say to me is "you have had your op now so you must be better" and then just give me more meds to take and send me on my way :( .. i get lightheaded soo much its like every time i stand up i feel dizzy and my head goes fuzzy and i can hardly keep myself stood up. i have only come back to work part time and im still struggling so your DD is not alone. i keep having to take time off but i also feel like everyone just thinks im lazy or putting it on .. esp when the dr and NS say im fine to be at work .. they dont understand how i feel or what its like i dont think anyone who hasnt had to go thru it does. i even feel like my family dont belive me sometimes :( they brush it off like im just putting it on and my NS says im all better now and can do everything i could do before with no restrictions! wich is not at all true so even he doesnt understand :( its so hard .. he just goes by what the mri scan says at that moment in time not how i feel all the time and if he doesnt get it how do i make my family understand?
I completely understand and know how frustrated you feel. I didn't take any action for a long time after my daughter's surgery because the mri and the NS said everything was ok. It really wasn't. I don't know what the time frame is for healing but 6 months could be premature to expect to feel better. In my DD's case, there was a specific reason she wasn't getting any better and I wish we had addressed it sooner. It is now 4 years since her surgery and we're in the process of finding a new NS. During all that time post op one of the hardest things was dealing with people's opinions. In what was probably a bad move, she went on a family trip to San Francisco 2 months after the surgery. It was a big wedding and she really didn't want to miss it. She had trouble walking up a steep hill and her aunt got impatient and called her a princess! And the aunt has a PhD in physical therapy! It just goes to show how ignorant and insensitive people can be. Other people have asked "what does she do all day?" It's hard to explain how debilitating all these symptoms, the pain, dizziness, exhaustion, nausea can be day after day. Especially when the dr signs off telling you you're good to go. I think you should consider looking for another NS (I know how hard it is to go through the process), one who is a true Chiari specialist. I don't know if your other NS fits that description. But it was my experience that once a surgeon feels he did his job correctly, he doesn't want to be challenged. We went back several times post op and the dr. never even considered that anything could be amiss. As far as family goes, I showed some people this forum so they could read for themselves that my DD was not unusual. I think it helped. I hope you find a dr who will listen to you, as some of the symptoms you're describing sound like some of the related conditions that might need to be addressed.
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