Hi all, I have been recently diagnosed with type 1 Chiari and told I need surgery. I have suffered with symptoms for the past 5 years. My major symptom is lightheadedness/dizziness. I also have chronic neck pain, nerve pain over my head. I don't go for walks anymore because of the pressure at the back of my head and dizziness that makes me feel drunk and unstable. I now have walking difficulty where I feel like my signal isn't getting to my legs fast enough. Has anyone got relief from dizziness after surgery? Please help as I am so anxious and scared. I don't see many positives from surgery?
Hi alana, I was like you before surgery, I'm better than I was, but it's been long recovery, I still have some symptoms but not on the scale it was, getting up on a morning the pressure round my head and dizziness was so bad I had to steady myself on the wall till it eased off before I could walk. I'm now working part time, I except I won't be the same as I used to be, as surgery is to prevent symptoms getting worse. I suffered for years yrs till my spine consultant found the cm on one of my scans, it wasn't picked up previously. It is scary and a big operation, but everyone is different some recover better than others. But i think having this forum and knowing you can talk to people who are in same boat is good. I didn't find this till months ago, my surgery was Aug 2014. I even enjoy a sml glass of wine now lol
Hi, I too am post op like Helen. My surgery was May 2015, I had terrible dizziness and horrific headache (pressure type pain) and also the classic Chiari valsalva headaches, like Helen said, the recovery is tough, but stay positive as it really makes a huge difference to your wellbeing during the recovery.
I no longer have the dizziness like before, my headaches have pretty much gone. I am so thankful I was brave enough to have the op and cannot believe how far I have come in the past year.
Do be prepared to feel like crap for 3 months but, if the op gives you the chance to improve your quality of life & prevent the symptoms worsening, then we must try and be positive & thankful that we can have a procedure that may offer this.
Do you also have a syrinx? (Assuming you have had a full spine MRI?)
Hi Helen, thanks heaps for your response. It is so scary thinking about surgery but I will remain positive and also have a glass of wine. I do hope you continue to recover or at least not get worse
Hi Hayley, thank you so much for your response. I am so pleased my brother told me to start talking to others. I don't have syrinx and am waiting for the MRI results re CSF flow before going back to surgeon on 8 April. I know I definitely need the surgery to try to get some relief as quality of life at present is very poor. I basically work and come home to the couch. Just so happy to have a supportive husband and family xx
Your welcome, a few things happened to me after surgery, I lost my speech and had to eat mushy food. But it was only for 1st week. Reckon it's with nerve damage. I wasn't prepared for how sickly I was after operation, but you will be and it's not so scary if it happens you know ur not alone hun. Lots of people on here in same situation. X
Hi Alana
I'm not a sufferer, my daughter is. She had surgery March last year, was dizzy, nauseous, tingling numbness down one side, very bad shape and it came on violently, it wasn't a question of it was when. She has a 99% recovery rate. Still numb, has headaches every now and again, dizziness gone, has some balance issues. This is a great site for questions etc. Find a good neurosurgeon he'll be able to give more advice.
I had surgery November 2015, I'm having numbness and tingling, is this normal with anyone else??? My left side of my head feels really weird, tightness.
Hi, thank you for letting me know. Sounds crazy but I am crying all the time at the thought of surgery. I have suffered for so long with my dizziness and pressure after walking that I just don't know anymore. I have seen so many doctors over the years, had massage, physio, accupuncture and nothing ever stopped the dizziness. Does it matter if I don't feel much with coughing or straining. I find my dizziness gets worse when I am talking or laughing or out at the shops etc. sometimes I think I make it worse from tension due to anxiety about a dizzy spell coming? Did your daughter have this sort of thing. Thank you so much for all your support. You are such strong people!
Hi Helen, thanks again. How large was your herniation if you don't mind me asking and where are you from? I am in Brisbane. It just scares me so much to think of the surgery and what if it is not that. I keep asking myself but I know the next scan will give me a more definitive answer cine mri. I think I get a lot of anxiety as I have not had very good experiences with surgery in the past so makes this worse. Did you or anyone have days where you felt reasonably good? I have those days where I feel quite normal and that gives me doubt but I think it is because I don't go anywhere or do much around the house. Once I start walking longer or house work it gets bad again. Even moving my arms or brushing my teeth makes me feel dizzy at times. It is a horrible illness that is very impacting on your body.
I went through all that too Alana, but you know what your facing now, and we have all come through it, you will to hun. We will be here for you, as most know how scary it is to go through this. X
I'm not sure they didn't tell me Alana. I'm in the UK. I just got told I would benefit from surgery. But i went yrs before a diagnosis. They told me there's no cure but surgery prevents it getting worse. But i do have bit better quality of life after surgery.
We are in the exact same boat and it's sinking it feels like to me the pain and burning in my head and the pains in my neck it's bad I sneezed today and flew down I wish I could turn back time ..... sorry that we weren't some of the lucky ones...
Helen, I am a little concerned about jumping in and actually having occipital neuralgia or cervicogenic headaches. I sit at a computer all day and have tight neck muscles. I know I get pain at the base of my skull and lightheadedness is my major symptom. My posture is bad and I struggle with strength to stay upright at the moment. I just don't know if this is because I have been so inactive because of the dizziness or because I have a different issue. I guess I will discuss this with my neuro but sometimes they dismiss things without considering it. Though I do know I have tried all treatments to improve but wonder if I was just too lazy in my exercises. I know any physical work or use of my shoulders aggravate dizziness. I think those two conditions would probably not affect my balance with walking - the feelings of sometimes uncoordination or floaters in my eye sight but not 100% sure which worries me. Thoughts? Thank you for all your help and answers. It really is assisting me
Yes I can relate to all that Alana, I was in an office for ten yrs before my surgery, I took my redundancy before my surgery and had just under a yr off before getting little part time job as domestic in a hospital. If I sit too long reading or on laptop I feel dizzy when I get up. I try to excersise my neck a bit as stiff. I go to pilates but have to take it slow getting up and down or I end up on my friends mat next to me haha, so as you see there is still a life after surgery for some of us. You have to push forward but not over do it. Which I must admit I have an odd time. X
Hi Helen, just wanted to ask if you ever felt like the problem was your C1 or C2? Did your symptoms happen with head positions?
Hi Hayley, did you ever feel like it was your C1 or C2? Did your symptoms worsen with head positions?
Im not sure about the c1 or c2. But yes my head still hurts a bit if I'm sitting reading for a long time and lift it up I can feel it, but not as bad as before surgery. Even turning over in bed. Hope this helps
Thanks Helen, I am just going through all the what if scenarios and questions for my surgeon. Just wondering if my lightheadedness is from a misaligned disc - doubt it but again I think everyone goes through this type of thinking first. I get lightheadededness lying on one side or both sometimes, after walking, and when I sit for too long or certain head positions
Yes it's same sort of thing, and if my neck is stiff it's giving me lots of dizziness so i try and do neck excersise, I should move neck more as I get very tense. .