i no that csf is hydrosefles how do you no if you have it? excuse my spelling. my head fills like it is full and heavy.
Hi going crazy. CSF is just a term for normal flow of the spinal fluid. I could be misunderstanding, but I think sleepbree is implying that because hers is functioning ok that she is going to wait and see. Hydrocephalus is an excessive buildup of that fluid on the brain. That is very serious. You need a specialist caring for you to rule that out. Use the resources here and always reach out to our moderators for help if you need any information. You must have proper information! I hope your journey is a painless one and you find your light at the end fast! 
- TRACYJESSICA
goingcrazy said:
i no that csf is hydrosefles how do you no if you have it? excuse my spelling. my head fills like it is full and heavy.
thanks for the information at one time my neurologist said I had hydrocephalus then they say I don't my surgery was 2 years ago I still have so many problems I thought it would be fixed with the surgery but I guess it messed my neck up but I still sometimes feel like pressure in my head. I tell my neurologist about all my symptoms that I have but I am getting to the point to where I don't say much anymore cause I think he might think I am just crazy and its all in my head but I no its not honestly I have not been myself or right since I had the surgery. does anyone else feel this way or is it just me
I would suggest you seek a second opinion from a neurosurgeon that specializes in Chiari. A neurologist isn't going to be able to deal with you on that level efficiently. You should probably have an MRI done to see if something was missed during surgery or something else is going on now. It sound like you are wasting your time with your neurologist. Have you been back to see the neurosurgeon that performed your surgery?
i have had mri but I think they are just paying attention to the chiari at the surgery sight. they surgeon that I have is supposed to be one of the best surgeons that specializes in chiari he actually travels to different states to do surgery on chiari patients maybe I do need to go back to him and just talk with him on some things that are going on
Chiari has had a big impact on my job the last couple years. I was working full time in an office job. I spend a lot of time in meetings and work on a large complex so there was some walking back and forth and about a 1/2 mile walk to and from the parking lot. I was able to handle the job with occasional leave. I had an intermittent FLMA in place and was going about 3 or 4 days a month so I could stay home on my bad days. But its really gone down hill the last couple months. I was put in a different position in January that involves more walking and a lot more stress. I was starting to feel bad and missing more work. Then three weeks ago I figuratively hit a wall - I haven't been able to make into work for three weeks because I feel so awful. Now I'm wondering if I'm going to to have to go on disability until I get decompression surgery.
Denise,I know how you feel I had decompression 16 months ago and it has helped a lot.I still deal with sympytoms of what I think is dysautonomia,another condition that goes along with the chiari problem.If you have to have the surgery be sure you find a surgeon that does lots of decompressions each year.That is the most important thing of all.In my case I was very sick for 28 years wothout much help from the reg. Medical community,even though the surgery is not always perfect in ridding us of all symptoms it has been a God send for me.This has been a long recovery but I would do it again if I had to,the brain is a difficult organ to heal,just know itās a long haul for all the changes to be realized.There are so many on this site that have not been prepared for what lies ahead as for myself I wasnāt expecting it to take such a long time either.I am disappointed that I still have to deal with these other issues in the after math but greatful for the good changes,hope you find the answers soon.Keep us posted.
denise I fully understand what you are going through I had decompression surgery 2 years ago I still deal with sympytoms
I thought after I had my surgery I was going to be all better but that did not happen I am at the point to where I think I am going to have to deal with it the rest of my life one good thing is I don't have to work I just take it day by day I think more studys need to be done on this disease but how do you get someone to do that. I no it is a rare disease from what I understand you need a surgeon that specializes inn this type of surgery the problem I had was my brain was groing out of my scull and the brain stem had grown down in my spinal canal. I hope you get to feeling better keep us posted.
DeniseH said:
Chiari has had a big impact on my job the last couple years. I was working full time in an office job. I spend a lot of time in meetings and work on a large complex so there was some walking back and forth and about a 1/2 mile walk to and from the parking lot. I was able to handle the job with occasional leave. I had an intermittent FLMA in place and was going about 3 or 4 days a month so I could stay home on my bad days. But its really gone down hill the last couple months. I was put in a different position in January that involves more walking and a lot more stress. I was starting to feel bad and missing more work. Then three weeks ago I figuratively hit a wall - I haven't been able to make into work for three weeks because I feel so awful. Now I'm wondering if I'm going to to have to go on disability until I get decompression surgery.
Denise, I would definitely apply for disability insurance. You will have it to fall back on and to help you through recovery after surgery.
Hi all, that is the unfortunate thing about Chiari. The decompression operation only relieves some symptoms, but does not heal us and we will always have symptoms to contend with. I had a decompression op 3 years ago. What has worked wonders in my life is RADIO THERAPY RHIZOTOMY. When you constantly feel ghastly, battle headaches etc, ask your neuro to do this for you. It changes me from a ghost into a energetic, bubbly person within hours. I am clear of pain, it is now more like a quiet awareness of not being right on a day, without the pain. The pain is more just an awareness of quiet painless pain - do not know how to describe it but I need no pain pills any more.
What it is: Under aneasthetic in theater they insert a thin needle into the nerve in the neck that relates pain message to brain and stun it. It gives relief for up to 2 years or more. I also use medication to balance brain chemicals which then help prevent headaches.My neuro prescribes miztazerpine for the evenings.
This combination of treatments has made it possible for me to keep on teaching 3 days a week.
I hope this to be of help. Should your neuro want to speak to my neuro about this, let me know. I am from South Africa.
Yoga Girl -
I had ACM decompression surgery and C1 laminectomy in 2005. Before I had my surgery I joined a support group similar to this one and asked the same question you asked. I am active duty military and after my three months off work to recover, I had about a year before I was back to 100%. Now, 8 years later there isn't much I can't do, there aren't any military demands I can't meet and I even teach a high intensity fitness course a couple times a week. I felt great until a few months ago when I was involved in a head on collision and now my symptoms have returned; however, to answer your question on work, I think this is determinate on each person and condition. I wanted to share my story that everything can go back to "normal" after post surgery and recovery and that all hope is not lost.
I'd be happy to answer any other questions you have.
Bro, you are great example of how decompression surgery can go very well. My son also is doing very well after his surgery. He has a few side effects but even those are dissipating. I am worried for my son what has now happened to you. There are always accidents that can happen to ruin the surgery success. Have you had another MRI to see what the accident caused for your Chiari?
Toni -
I did have an MRI after my accident by my urging. My primary care doctor tried to explain to me that if the mesh had shifted my symptoms would be much worse. He wasn't a neurosurgeon or my neurologist, so I urged for him to order an MRI. He did to appease me. I am an MRI technologist so I reviewed the images with the Radiologist that I worked for. The herniation was not any larger than the last MRI and the mesh isn't visible on an MRI. The Rad didn't see anything concerning and neither did I; however a few limiting factors on imaging for these types of things are: patient positioning and image slice thickness. If my head was in a different position (even by a few MM) than my last MR, the herniation could present worse or better. I know that slice thickness used in our imaging and I know that didn't change from my last MRI.
Ultimately, just like the five years of symptoms prior to someone finding a diagnosis, I know something isn't right. I haven't felt this bad since prior to the decompression surgery. I am reaching out to this forum and the Mayo Chiari clinic to see if anyone can provide me some insight on my situation.
Bro, I'm sorry and must be so frustrating. Maybe you could have a flow study done of the CS fluid or have the MRI done in a different position? Maybe your spine is more affected from the accident? There is obviously something not right anymore from the car accident. I would have a second opinion from a neurosurgeon that specializes in Chiari. At this point, it couldn't hurt.
Aquarian, is your neurosurgeon a Chiari specialist? I am really shocked and surprised that you haven't had surgery immediately to take care of the Chiari because your symptoms are so bad...regardless of another condition. If I were you, I would seek out a second opinion from a neurosurgeon specializing in chiari. I just think it is ridiculous that you have had nothing done or suggested as far as surgery yet given how bad you have gotten in one years time?!
aquarian said:
Yoga girl,
I am a Hair Stylist too! I had to take 2 leave of absences from work and now I had to quit my job because my time-off has been too long. I have been off work now since January 2014. My symptoms are very severe. I have CM 1 and a herniation of 9mm according to my MRI, but my neurosurgeon thinks by her estimation that it is actually 18mm and is causing some of my symptoms but not all of them. She referred me to a movement disorder specialist to figure out the other reason for my condition. My legs and arms hurt (muscles and joints) and they are numb at times, extremely numb. I can barely walk. I have the typical tinnitus, dizziness and chiari headache, pain in my neck and shoulders, tremors, my shoulders and hips lock up when I move them out of a small range of motion and it's very painful. These are my symptoms in a nutshell. I have to use a wheelchair whenever I go anywhere now. All of this started in June 2013 and has been progressively getting worse. I am afraid I will be paralyzed soon. I am waiting on getting the decompression surgery because I need the other diagnosis first to see how much of my condition is caused by CM and how much is related to another disorder. Very frustrating waiting to see specialists and being miserable during this process as no medicine so far seems to help my condition. Although Flexiril helps with the muscle spasms it doesn't take away the constant pain.
As for returning to work, I don't think it is wise for me to go back into that line of work. I loved my job but I see how it affected my body and broke me down. Not sure if you had this problem too.
Have you seen your neurosurgeon yet? Please let us know.
I was diagnosed and had my decompression surgery in 2013. I am almost 7 months post-op and a lot of my symptoms have been coming back. I used to work full time at a hospital, but I would get "talked to" for taking too many sick days. That has been the story of my career! Every job I've ever had, I would call in sick too often, but I just couldn't help it! The headaches or fatigue or dizziness would just be too much! I now work from home. My husband owns his own company, so I keep the books and do payroll for his business. It is MUCH better since, if I don't feel well, I can just go lie down for a while. We have 3 boys, 17, 13, 12 years old, so they help me out when they're at home. I hate admitting that I "can't" do something, but......I really don't think there's any way I could work outside the home, full-time, ever again. :-( I'm fixing to turn 37 next month....
Have you researched the issues so many chiari people have after the surgery.I am 17 months out since decompressions and have dysautonomia symptoms,this is just one of the conditions connected to chiari.Thereās more things that you need to concider,Elers Danlos(excuse my spelling)and Pots are more conditions some chiari patients suffer from.The moderators on this site can tell you more about these issues,so many are going through these conditions and they can be treated.I know I am rambling on but because I am going through the dysautonomia I can tell you I just started taking a beta blocker and it has helped me tremendously.The symptoms I am been going through are excessive sweating,lack of sleep,blood pressure & heart palpitations,pain all over,fatigue,breathing issues.I know this may sound like my decompression has failed but it hasnāt.I am so much better than before,it is a disappointment to have to face another sickness.Please get to a NS who will test you for these other conditions,reasearch these conditions for yourself.I feel for you and hope you find answers,you will have to be you own advocate,we know that as chiari patients.It is up to us to find our way to a better life.It is of great importance that you get to a NS who will test you for other conditions so you can feel better.Please keep posting,without the friends here on this site I would have never found my way.I care for and feel for you,if thereās anything I can help you with let me know.
I worked in a warehouse filling orders and stocking. It was lots of bending/climbing/heaving lifting/looooong hours. I was having so much pain and dizziness and even passing out before i had the decompression surgery. After surgery I didnt do much better. Wasn't able to return to work, ended up filing for disability and after being denied and getting a lawyer and appealing was approved after a year or so. I would love to return back to work and have a sense of accomplishment and a type of freedom in a way (cause i feel stuck at home in pain most of the time) but not sure its gonna happen anytime soon unfortunately.
Rosey,I know that it is not always possiable for everyone to travel but you must get to a NS who does lots of surgeries each year.There are patients that have to have more surgery to realize a good outcome and that just is awful.Where do you live? Thereās a great surgeon here in N.C., he is located in Hendersonville,Dr. Rosner is one of the pioneers in this field.In some cases there are other conditions that occure in chiari people too,as for myself I have dysautonomia which is one of those things that can be treated along with one called Elers Danlos,and pots,look up these conditions to be sure youāre not experiencing some other problem.In some of the secondary issues there are treatments that make them bearable.Keep posting.
Rosey, Lynn is right. You need to have a NS that specialized in Chiari and it would be a good idea for you to go and have a second opinion. Decompression surgery isn't a cure all but you should not feel the same, you should have some relief. My son had his surgeries at the Penn State Hershey Medical Center in Hershey, PA. His NS is Dr Mark Iantosca and I believe the other NS for Chiari is Dr Mark Diaz. I am not sure where you live but if you need help in locating a good Chiari NS please let me know!