Is anyone willing to share their long term (1-2 yrs+) progress after surgery? Maybe a little about your diagnosis, how long ago you had surgery, any issues you’ve experienced since then, how you live your life now…
I was diagnosed with Chiari type 1 a little over two years ago was 12mm displaced, had no syringomyelia issues. I had surgery shortly after and recovery went great but about 6 months later i over did it baling hay and have had pain in my head ever since. Working with a neurologist I control the pain with some medications but it has taken about a year and a half to find a good combination, which isnt 100% effective. At one point I had pain (migraine like) 5 out of 7 days a week and had to keep my physical activity level very low. I am now at migraine like pain only 1-2 days per week with slightly moderate physical activity level. I have not worked full time since my surgery but I am beginning student teaching which is fulltime work next week.
My doc thinks the pain is residual nerve pain/damage from the surgery. I am curious to hear other long term stories and also if anyone else has had this pain issue and what they did and if it ever went away.
I had decompression surgery 3 and half years ago. I have not returned to work since my surgery - home with children became a priority while the cognitive and physical aspect of my job are daunting to me. Cognitive impairment of poor divided attention remains - means that I cannot do two things at once, nor be interrupted. No worries though, as I am very pleased with my status compared to before surgery. I always say that surgery got me out of bed after being pretty much an invalid to now I can do most of my household jobs and can be a wife and mother. MUCH better than before.
For neck and head pain, I have done a variety of things which worked for what was ailing me at the time.
Scar management techniques so that I could touch my head, wear a hat, and sleep with my head on the pillow - worked great. I have no concerns now. Physical therapist with post-surgical experience for scar management can give tips and pointers. Takes a while and is painful to do but worth a good night’s sleep.
Motor control exercises for the neck and shoulder. Car accidents, Chiari, and surgery all played a role in how my muscles had learned how to move in pain-producing ways due to muscle imbalances. A good physical therapist who has taken motor control courses or Shirley Sahrmann courses (PT in USA that offers courses and has excellent books) and USES these techniques in treatment can help. I did and do these exercises as I found that arm and neck movements and positioning were causing pain and I just felt weak. My neck has better movement and repetitive chores are not nearly as aggravating.
Neurodynamic techniques - again a physical therapist who has taken courses through NOI (Neuro-orthopedic Institute), a research group from Australia that offers courses around the world. Again, arm and neck movements would cause pain but in a disconcerting way. Achiness, burning, heaviness etc - all your funny descriptors that doctors hate because they make no sense.
Myofascial techniques. Again, a good physiotherapist is a better candidate. Perhaps a massage therapist more specialized can help. It is just that I have been to a number of massage therapists who offer myofascial release massages and was sorely disappointed. This has been helpful for neck and head pain and ease of movement through more full ranges as my motor control got better.
I have not done these all at once but used these techniques over the years to address whatever my priority was at the time.
I am of the belief that chronic pain does not have to be simply tolerated nor managed. It is quite the challenge to find good help and direction. Having someone assessing your own particular set of sub-classifications is vital to determine what techniques would be appropriate for you. Good luck, ask away if your have any questions
I had surgery Oct 2014. I have neck pain, eye pain, leg pain, spine pain, coordination problems, hard to walk, sometimes I stutter and can’t talk, constant head/brain pain. My family had to place me in assisted living. I wish I could say a lot of positive things. I’m in the bed most of the time. Everyone is different so don’t judge. You can worry about tomorrow but live fully for today.
I started having weird symptoms in 2008. I was diagnosed with sleep apnea. I had head pressure and anxiety and was taking klonopin. I thought the klonopin was causing head pressure. I went to eye dr and she said I had pressure on optic nerve sent to er. A MRI was done and nothing showed up. Primary care dr said head pressure caused by diet sodas. Also, I slipped on ice and hit my head in 2011. My bp keep going up. I went to cardiologist and had all kinds of tests up to a heart cath. There was no answer. Feb 2013 I had surgery for c5/c6 herniation in my neck. I went back to work but continued to get worse. By November of 2013, I went home from work and haven’t worked since. I found out my l5 disc was hitting my s1 disc. This was my back. I started having instability in my walking. At this point I’m at home and started having pain behind my eyes. It looked like the shape of my eyes changed and I quit wearing my contacts. My hand coordination got bad and I could not cook. I continued to go to neurologists and no answer. My pcp told me I had the Chiari but not to worry unless I had problems. Finally, neuro did cine MRI and sent me to Emory University in Atlanta, Ga and I had surgery. I continue to have all the problems I mentioned. Some of my problems are not Chiari. Based on what I understand the operation is not a cure. I know it’s hard to make a decision. I wish you the best. If I can answer a specific question, please let me know.
Thankyou.from what ive read from other people my minds telling me to stay clear of surgery,i will have to see what my surgeon says.im scared of having the op and being paralised.x
gabby jazzypants, Thanks so much for sharing. I wish I would have taken advantage of some quality phys therapy options after surgery. I am glad you had some luck in finding quality resources, even if it took some experimenting.
Hi Dawnie31
I know surgery can be a scary idea, more than scary really. I seriously wrote in case I die letters to my family. Iwanted to share that my issues after surgery are totally different than my before issues. Before I had my surgery I would literally find my self in such pain I would have to lay on the ground, my body physically couldnt stand. I was 12mm displaced and my brain was hitting into the bone with such pressure that the pain was absolutely unbearable. I found my self in bed most days, still in pain. I dont know what your symptoms are like but mine simply were not manageable.
After surgery (surgery consisted of a decompression, duraplasty, craneoplasty, and cerebellar cauterization–pls excuse my spelling lol) I was fine until I “over did it” so now I have headaches/ migraines. Which are pretty intense on the headache scale but no where near my ‘before’ pain. And I have them pretty well controlled at this point with 2 types of medicines and some essential oils and vitamins. The confusion and problems multitasking I also experienced but I found that the more I read and did ‘brain games’ and challenged myself the better it got. but im sure thats different for everyone.
Talk to your surgeon about the risks, if you dont feel like hes being honest find another surgeon. Mine was very honest with me, he had one case that resulted in stroke like issues over the course of 30+ years.
My well being is very similar to gabby_jazzypant’s. Although, I would say my motor skills, fine and other have declined since my surgery. I have a mild claw hand issue, and had some recent success with physical therapy (hopefully it lasts) I would say that cognitive issues are also a big factor, especially when someone rattles off directions.
This causes much frustration in my life because I think I look like it I got it all together. So, when people address me, I must come off like a box of rocks. So, at my daughter’s school, or at church, I always try and mask my ailments (very tiring). Why…??? I don’t have time, neither is it appropriate for me to issue someone a health resume when interacting with them. Also, for whatever reasons I don’t know, my health is shameful to me. So, for what few times I have to leave the house, I just try and be normal.
Regarding headaches, that part has been somewhat better since decompression. However, I also have syringomyelia. The ratio per week/day is much lower. Ultimately, if it was found when I was younger I think I would be much better off.
Catlover, I’m glad that physical therapy has had a positive impact. Something that helps me keep my cool in public when im getting confused is a simple note pad. I will say, ok wait one sec let me get my note pad bc I don’t want to forget this or mix up these directions or …Fill in the blank. I also find people talk slower when they know your trying to take notes, if they’re not slowing down I’ll ask them to. No shame in that.
I have mixed feelings on my chiari journey… it has clearly interrupted my live at only 26 yrs old, it has changed the way I have to do things because of my headaches (nerve issues after surgery), some days I’m disgusted with it and absolutely hates it for changing my life in this way.
Now at 28 yrs old, sometimes I am proud of the strength and wisdom I have gained from the journey.
Does anyone else have a love hate relationship with Chiari?? Maybe love is a strong word lol