Hi all! My names Sarah. I’m 20 years old. I was diagnosed two years ago. Five years prior I complained to my parents of headaches and neck pain all the time. My doctor said I had a lot of muscle tension so she sent me to a chiropractor and physical therapy. For three years I did both but never found much relief. Finally, after attending my freshmen year at Western Michigan University, I started going to physical therapy there on campus and after doing one of the stretches my hands went numb. My therapist ordered an MRI, and of course I was then diagnosed. For years I was told it was a muscular issue when in fact no one would listen to my true complaints and in fact it was much more serious. At first I wanted to avoid it because I didn’t want surgery so I let it go. A year later my neck pain was seeming to get worse and worse. I got a second MRI and was sent to a neurosurgeon. He was super eager to do surgery but I wanted a second opinion. I was then sent to a neurologist who said surgery wouldn’t help. It would help my headaches but probably make my neck pain worse, which was my main concern. I can’t sit at my computer, read a book, do school work, or anything else of the sort requiring my neck to be bent downward without being in pain five minutes later. I’m a cosmetology student and the pain is just becoming unbearable and I just feel like there has to be something someone can do to make this pain go away. My doctor basically has said that it’s something I’m going to have to live with and perscribed me muscle relaxers. I’m on 450 mg of that, but it’s not working. I began taking so much Ibuprofen I gave myself stomach ulcers. I’m going insane. I live in the Grand Rapids area and would love some feedback, emotional support, recommendations, and any info anyone has to offer that would help me out in anyway! I can’t live like this the rest of my life!
I’m 30 and have two kids and I had the decompression surgery 3 months ago, and my neck is sore in days. My headaches are gone and my neck pain that was there before is gone. The surgery has been a blessing I feel so much better and everyday I improve in the quality of my life. Brain surgery is scary for any reason but I’m glad I took the risk. My advice trust your surgeon a skilled surgeon is the key to a good outcome.
I was diagnosed with Chiari Malformation about 6 weeks ago and had the decompression surgery in the 1st of April. I am curious if they told you whether or not you have a syrinx and if the cerebellum has herniated out. My brain had herniated 13.5 mm out of the bottom of my skull and my syrinx in my spinal cord is roughly 12-15 in long. My neurosurgeon encouraged me to take care of this as soon as possible since a syrinx can cause paralysis.
Hi Sarah I had decompression surgery 3 years ago, the first year post op was great I had few headaches. One of the main things that has improved are the headaches I would get from coughing and sneezing, this was a big problem be cuz I have asthma and during cold season I have a chronic cough. I still suffer from headaches now, and I don’t think that will ever go away. Just like you said tilting your head a certain way causes a headache no matter what. The best medication I’ve been given for daily regular headaches is Midrin. I’d say surgery will help but you’ll probably always have pain in your head/neck from certain movements. It’s a sad reality I’ve accepted. The surgery is intense, very painful and long recovery period. I suffered complications a csf leak and infection so it was really tough. I hope this info helps. Continue to read up about this.
I had decompression surgery in 2001 (and a PV shunt for an arachnoid cyst in 2004). Though the recovery was long, about a year, I feel so much better. I do get a headache each month around my period and my neck does get stiff but nothing compared to before surgery. I getonthly massages and that helps a lot. Good luck, I know it’s scary!
I was diagnosed just a few months ago, and don’t have any advice to offer as far as surgery…it is off putting that the surgery could make some of your symptoms worse, but there are many people who are glad they had it…I will say that since I have been more relaxed my pain has eased up. When my headaches were bad the best thing I did was buy a soft body pillow. Also, I’m a working cosmetologist (esthetician). my advice on that is to watch your posture, try not to put unnecessary stress on your body…I did nails for a while and my symptoms were the absolute worst they have ever been, getting to where I would feel like passing out doing a manicure (I think because of my posture). Anyway, I get the need for emotional support, being in pain sucks. I’m here if you need to talk to someone.
Hi Sarah, sorry you are going through this. As most of the people on this site can tell you it is really important to find a neurosurgeon who specializes and understands what chiari is. One who knows will go by your symptoms and not the size of the hernianation. Don't be afraid to ask for a second opinion or ask the doctor how many chiari surgeries he has performed.Same with the neurologist, the first one I saw literally clapped (I was his first chiari patient)as he was so excited, then sent me for a test that I should never have had, needless to say I never went back I'm hoping someone on this site can give you a good dr reference. Stay strong.
Hi Sarah, I’m 10 months post decompression surgery. I don’t have the constant pressure and pain in my head and neck that I had before surgery, but I do sometimes get headaches now. Before surgery I can remember coming home from work and crying for my husband to rub my shoulders for me. I should own stock in icy hot patches! I don’t have that anymore thank God! If I over exert myself I pay for it for a couple of days. I still have insomnia. I can feel where surgery was done inside and it feels sore and throbs at times. They say I’m still healing. I sure hope it goes away, but if not my quality of life is still better than before. Deciding to have surgery is a very personal decision and don’t let anyone influence you one way or another. Only you know what is right for you. Do your research and choose a Neurosurgeon you feel comfortable with. I saw two Neurosurgeons before making a decision. I have come to realize everyone has some sort of ailment and I try to stay positive and take one day at a time. It can get very frustrating trying to explain Chiari to coworkers, friends and family when we are still learning about it ourselves. Most think I should be FIXED because I had the surgery and that’s not so. I have a good support system, but only a fellow Chiarian truly knows our pain. You will find you’re stronger than you ever thought you could be!
Hi Heather! You say that your headaches and neck pain have greatly improved since surgery, were headaches and neck pain your primary symptoms pre-surgery? Did you have other symptoms that affected your daily life? Did you have a syrinx or just herniation?
I am in a similar position with my headaches and neck pain being the worst and really the only 2 symptoms that affect my daily life...but those 2 symptoms are often debilitating. I am considering surgery, but have had differing opinions from 3 NS on whether surgery is necessary and would help my headaches. The only reason for me to go through with a decompression is for relief of my headaches and neck pain. Though I do have other symptoms, they are certainly not enough to warrant surgery for me. It's such a tough call on making the right decision when it comes to a life-altering decision, one way or the other, especially when you get such different recommendations from doctors.
Heather said:
I'm 30 and have two kids and I had the decompression surgery 3 months ago, and my neck is sore in days. My headaches are gone and my neck pain that was there before is gone. The surgery has been a blessing I feel so much better and everyday I improve in the quality of my life. Brain surgery is scary for any reason but I'm glad I took the risk. My advice trust your surgeon a skilled surgeon is the key to a good outcome.
Hi Sarah! Sorry to hear you're having such a tough time at such a young age. I am in a similar position so can't offer much advice as I am just now currently getting opinions on moving forward with treatment. I was diagnosed several years ago and dealt with the neck pain you describe all through college and so I understand how difficult it is just to get through the day and study sometimes. Many of us share the sentiment that we can't live the rest of our lives like this...at times it seems so difficult to find the answer...because with this situation it seems like there is no "right" answer. There are so many variables and factors that come into play for each person to make the best decision for themselves.
I guess my advice is to hang in there and stay positive though "getting better" seems impossible at times! I also had one NS tell me to never let any doctor perform a surgery for my so-called "Chiari" and another who said if I was his own daughter he would recommend surgery. It doesn't get anymore confusing than that! It's the most frustrating thing because you have to rely on a doctor at some point...it is their expertise...but which opinion do you trust...how do you ever truly know that is the right opinion to go with?!? I know how I feel, but I still have to rely on their expertise and recommendation at some point, but which one?!
Are you planning on getting another opinion?
Yes my primary reason was headaches and a feeling of pressure in back of my neck. My neck felt like I had someone’s fist in my head and neck. It was so bad it seemed daily and I started spending more time in bed then at work or enjoying my kids. And quickly I was adding to the list of symptoms I got dizzy, eye twitching, numbness. One night holding my two year old I made the decision either I went through with surgery that was recommend by dr and have possibility of being improved or stay the way I was going. Either way held risk but I felt surgery at least gave me hope when I was feeling hopeless. It’s a very serious and personal decision, I’ve learned no one case is the same as the next. I’m still recovering and taking it easy and day by day but huge improvements daily my advice is to take time to heal and don’t push yourself to fast if surgery is what you choose. A good surgeon is so important and also a neurologist that can follow up and monitor your condition after is key. I was blessed with amazing doctors for both.
Skye said:
Hi Heather! You say that your headaches and neck pain have greatly improved since surgery, were headaches and neck pain your primary symptoms pre-surgery? Did you have other symptoms that affected your daily life? Did you have a syrinx or just herniation?I am in a similar position with my headaches and neck pain being the worst and really the only 2 symptoms that affect my daily life…but those 2 symptoms are often debilitating. I am considering surgery, but have had differing opinions from 3 NS on whether surgery is necessary and would help my headaches. The only reason for me to go through with a decompression is for relief of my headaches and neck pain. Though I do have other symptoms, they are certainly not enough to warrant surgery for me. It’s such a tough call on making the right decision when it comes to a life-altering decision, one way or the other, especially when you get such different recommendations from doctors.
Heather said:I’m 30 and have two kids and I had the decompression surgery 3 months ago, and my neck is sore in days. My headaches are gone and my neck pain that was there before is gone. The surgery has been a blessing I feel so much better and everyday I improve in the quality of my life. Brain surgery is scary for any reason but I’m glad I took the risk. My advice trust your surgeon a skilled surgeon is the key to a good outcome.
Did you have just a craniectomy or duraplasty too?
I'm realizing that finding a doctor that you really trust is the key in this situation, but unfortunately that hasn't been so easy for me.
Yes, I know what you mean! I have days where I think to myself I can't possibly do this any longer even if surgery isn't as successful as I would hope, but then other days..."better day" I guess, though they're not great, have me feeling like I'm only dealing with headaches and neck pain (and visual disturbances). Don't get me wrong those two are very bad, but I know that so many people with Chiari suffer much greater than that and then I second guess and get down on myself for complaining about headaches. It's a vicious mind game that occurs.
Heather said:
Yes my primary reason was headaches and a feeling of pressure in back of my neck. My neck felt like I had someone's fist in my head and neck. It was so bad it seemed daily and I started spending more time in bed then at work or enjoying my kids. And quickly I was adding to the list of symptoms I got dizzy, eye twitching, numbness. One night holding my two year old I made the decision either I went through with surgery that was recommend by dr and have possibility of being improved or stay the way I was going. Either way held risk but I felt surgery at least gave me hope when I was feeling hopeless. It's a very serious and personal decision, I've learned no one case is the same as the next. I'm still recovering and taking it easy and day by day but huge improvements daily my advice is to take time to heal and don't push yourself to fast if surgery is what you choose. A good surgeon is so important and also a neurologist that can follow up and monitor your condition after is key. I was blessed with amazing doctors for both.
Skye said:
Hi Heather! You say that your headaches and neck pain have greatly improved since surgery, were headaches and neck pain your primary symptoms pre-surgery? Did you have other symptoms that affected your daily life? Did you have a syrinx or just herniation?I am in a similar position with my headaches and neck pain being the worst and really the only 2 symptoms that affect my daily life...but those 2 symptoms are often debilitating. I am considering surgery, but have had differing opinions from 3 NS on whether surgery is necessary and would help my headaches. The only reason for me to go through with a decompression is for relief of my headaches and neck pain. Though I do have other symptoms, they are certainly not enough to warrant surgery for me. It's such a tough call on making the right decision when it comes to a life-altering decision, one way or the other, especially when you get such different recommendations from doctors.
Heather said:I'm 30 and have two kids and I had the decompression surgery 3 months ago, and my neck is sore in days. My headaches are gone and my neck pain that was there before is gone. The surgery has been a blessing I feel so much better and everyday I improve in the quality of my life. Brain surgery is scary for any reason but I'm glad I took the risk. My advice trust your surgeon a skilled surgeon is the key to a good outcome.
Thank you all for the info and support! I truly appreciate it! I have to say, there is a slight relief in finally hearing that there are people out there who actually truly know what I’m talking about and understand the pain I feel. It’s so hard trying to explain to people what it feels like. They think I just complain of back pain and that it can’t be that bad, which is half the battle. Just trying to get someone to understand why I have tears in my eyes at work in school is frustrating enough! For those of you who have had the surgery, my main question is about the neck pain/muscle spasms. My headaches, while they suck, I seem to not care as much about. If almost rather have headaches everyday with no neck and shoulder pain because that is just so much worse for me. While you’re headaches have decreased what about the neck pain? have you found as much releif there as well? At this point I’m so scared that if I have the surgery and my doctor in fact is right and that my neck pain could get worse I won’t be able to cope with it. I don’t know how or what I’d do if the pain got any worse. Also, has anyone had any luck with any medication for the pain? I’ve been put on different muscle relaxers for it but some, like flexerol, we found out I’m allergic too, and the other stronger perscription, methocarbonal, just isn’t seeming to work either, even with a 500mg dosage.
Gypsieme: I have a 10mm herniation but have never heard anything about the other issue.
Skye: Yes, I am currently seeking a third opinion. I have a doctors apt with my regular physician on Monday to discuss a different referral. I was recently given a list of a few different spine and cervical doctors from a customer at work who thinks they might have some new incite for me so I’m hoping I can get in with a couple of them and go from there.
Sweetness: Yes, school has seemed to be the biggest struggle! I’m trying to find ways to adjust my posture so that it isn’t so hard on my neck. A lot of the time my educators will scold me for cutting/working with my arms up so high but I find the higher up I bring my arms the best relief I have on my muscle spasms in my neck. I too have a body pillow and I find sleeping on my stomach with my arms later out above my head gives me the best releif. Thank you for the support though, I feel like cosmetology isn’t the best career for my condition but I absolutely love what I do and I don’t want to have to give it up because it causes too much discomfort.
I am now 8 months post op and I am still having severe issues with my neck. My headaches are gone but my neck is worse. My occipital nerve was damages during surgery, which is very common. So I have severe numbness and tingling on the left side of my head. I went through 4 months of physical therapy with little effect. Some days I question why I had surgery for this reason but know if I hadn’t I would eventually not be able to walk. Sometimes you have to out way the pros and cons and know there are complications that occur even with the best surgeon. Best wishes!
I had the craniectomy and duraolasty and I didn’t realize how much pain I could cope with until after the surgery. I realized just how bad my pain was before surgery when honestly the surgery pain was less then before. I had the surgery built up in my mind to be a nightmare and I can honestly say the pain was manageable and after three weeks I’ve only needed ice and hear packs and some Motrin for pain on sore days. I’ve had a really good outcome but I’ve been off work and on restrictions for three months I notice a lot of doctors push people back to work after a month. I think taking the time for your body to heal is key, as every person is so different.
Skye said:
Did you have just a craniectomy or duraplasty too?
I’m realizing that finding a doctor that you really trust is the key in this situation, but unfortunately that hasn’t been so easy for me.
Yes, I know what you mean! I have days where I think to myself I can’t possibly do this any longer even if surgery isn’t as successful as I would hope, but then other days…“better day” I guess, though they’re not great, have me feeling like I’m only dealing with headaches and neck pain (and visual disturbances). Don’t get me wrong those two are very bad, but I know that so many people with Chiari suffer much greater than that and then I second guess and get down on myself for complaining about headaches. It’s a vicious mind game that occurs.
Heather said:Yes my primary reason was headaches and a feeling of pressure in back of my neck. My neck felt like I had someone’s fist in my head and neck. It was so bad it seemed daily and I started spending more time in bed then at work or enjoying my kids. And quickly I was adding to the list of symptoms I got dizzy, eye twitching, numbness. One night holding my two year old I made the decision either I went through with surgery that was recommend by dr and have possibility of being improved or stay the way I was going. Either way held risk but I felt surgery at least gave me hope when I was feeling hopeless. It’s a very serious and personal decision, I’ve learned no one case is the same as the next. I’m still recovering and taking it easy and day by day but huge improvements daily my advice is to take time to heal and don’t push yourself to fast if surgery is what you choose. A good surgeon is so important and also a neurologist that can follow up and monitor your condition after is key. I was blessed with amazing doctors for both.
Skye said:
Hi Heather! You say that your headaches and neck pain have greatly improved since surgery, were headaches and neck pain your primary symptoms pre-surgery? Did you have other symptoms that affected your daily life? Did you have a syrinx or just herniation?I am in a similar position with my headaches and neck pain being the worst and really the only 2 symptoms that affect my daily life…but those 2 symptoms are often debilitating. I am considering surgery, but have had differing opinions from 3 NS on whether surgery is necessary and would help my headaches. The only reason for me to go through with a decompression is for relief of my headaches and neck pain. Though I do have other symptoms, they are certainly not enough to warrant surgery for me. It’s such a tough call on making the right decision when it comes to a life-altering decision, one way or the other, especially when you get such different recommendations from doctors.
Heather said:I’m 30 and have two kids and I had the decompression surgery 3 months ago, and my neck is sore in days. My headaches are gone and my neck pain that was there before is gone. The surgery has been a blessing I feel so much better and everyday I improve in the quality of my life. Brain surgery is scary for any reason but I’m glad I took the risk. My advice trust your surgeon a skilled surgeon is the key to a good outcome.
Hi Heather!
I’m new here too and you have an abundance of responses so I will defer to group on this one. But I do want to send you support, hugs and prayers If that is appropriate. I think we are in the right place as these folks really know what we are and have been going through. Keep us apprised of your journey and Most Importantly, Hang in there!!!
Kris
Hello! Welcome! Glad you found the site. Having advanced from being an athlete in a slow decline into disability, I find myself now always thinking about adaptive ways or devices to enable people to do things. If you can get registered at your school as having a disability/limitations then sometimes reasonable concessions and or modifications can be made. I am wondering if a rolling adjustable stool to sit or kneel on could aligh you at a different height where you could be more comfortable and still accomplish the tasks necessary to the career you love? It would probably take some trial and error and you might have to lower and spin the customer as opposed to you moving as much but I think adaptation could be achieved with some experimenting. Given that a stool might be a pain in the butt to move around and convert to but in time with practice it is likely to become an extension of your body that dances with you. I think with a lot of things if there is will there is a way and if an a adaptation can make your dreams possible it seems to me to be worth giving it a shot. Just a suggestion thou. Others may have better ideas to try also. Hang in there! Kris
There is a website Ask jan dot org that focuses on finding workplace accomidations to comply with ADA rules. It might be a good place to start to come up with an individualized plan that can help you adapt to your workplace environment while achieving your goals. My understanding is it is a free service and they have a 1800 number you can call.
This site has a referral list with Drs in most states. That is the biggest step for you so you go into this feeling confident with your choice of surgery or no surgery.
I was a hairdresser for 35 years. I didn’t know I had Chiari for 32 of those and had to work. A rolling stool was an absolute must for me. And a super massage therapist who really listened to my body brought me to tears from relieving so much tension that hadn’t been done my whole life.
There is never a one size fits all answer for this Chiari business. So the more you learn the more you question yourself and those advising you. But that’s good. It makes us all advocates for each other to get the best care, and to expect it.
I hope you find your answers soon!
Go to conquerchiari.org loads of info there surgery helped me