I am newly diagnosed with Chiari type 1. I have neurosurgeon consult in March. Does anyone find anything that helps for the throbbing upon exertion that goes away after A few seconds. It’s so painful. I bend and when I straighten I get a throbbing in my head that goes away when I stay still for a bit… is there anything I can do to prevent this from happening.
I am new to this too and also waiting anxiously for my neurosurgeon appointment. I get the same thing you do with dizziness and pain in my head. I feel like since I started drinking a LOT of water it’s helped some.
I need to drink more water
It is so funny that you mention this! I am not a water drinker and am always trying to get more fluid into my system. I have been struggling with severe headaches since the New Year and was diagnosed with Chiari four weeks ago. I have noticed that I have been super thirsty and have been drinking much more water than normal. Perhaps my body is letting me know that proper hydration is needed?
I find keeping my head and spine aligned helps eliminate a lot of the throbbing. Like don’t bend your chin into your chest but try to keep head and spine levelled when you do bend, and don’t bend for long. I also bend with my knees downwards when I need to (I have a toddler, so I need to fairly often) and don’t stay down for long because that is also more exerting and causes more stress/throbbing. Reducing inflammation can also help (eliminate certain foods and introduce certain others). Drinking a good amount of water is also good Take am anti-inflammatory if it is bad also, I hope these help!
Thank you for sharing this with me❤️
I had a Chiari Decompression and Cranio-Cervical Fusion 6 yrs ago and still get this when going from sitting to standing or extending my upper back/neck backwards. It gets so bad at times it can feel like my head will explode with pressure or I will black out. Some days/weeks are worse-some better. But even with surgery that although improved never went away. I know there are many more factors at play with that symptom than just blockage. It’s dysautonomia, it’s dehydration, it’s an overall inflammation, in my case I was also diagnosed with Lyme Disease and several co-infections which cause brain swelling and other neurologic issues. It’s unfortunately one of the scary symptoms I’ve just learned to live with.
Wow! God bless you! Thank you for sharing your experience. Overall would you personally say that you feel the surgery was a success? Would you do it again if you knew your results would be the same? I am trying to learn as much as possible for my daughter’s sake. She was diagnosed in August 2019 and if suffering from so many of the same symptoms I see others discuss here. My worry is that if I proceed with surgery for her and she has little relief from all the various ailments, will it have been worth putting her through. I have been told that because she is already suffering from quite a few different neurological issues ( likely caused by the compression of her spinal cord) that the success rate of surgery is greatly decreased. Thank you for any input you can share.
Best wishes and kindest regards,
I have this same trouble. For me, it can be cumulative. So if I have an exertion headache, I try not to do anything more that could cause another. No bending over, turning my head, no chin to the chest, pop a cough drop if I’m coughing, etc. It’s also much more likely to happen in the morning, so I take it easy when I get up. If the throbbing is really bad and making me nauseous, I find laying down flat on my back on the couch, bed, or floor makes the pain go away almost instantly. Then I try to lay there for a while until it all passes. Before surgery I had to do this multiple times a day. I’ve probably done it less than ten since decompression surgery three years ago. Best of luck to you!
Hey- So I am rarely on these forums anymore with all I have going on (use to be on forums daily). I saw it was your daughter involved and do want to give you information and experience you may find helpful in making some important decisions going forward for your daughter. My heart breaks for her as I have an 11 yo daughter as well who was only 2.5 when I became disabled by my symptoms. She’s been through A LOT herself just being with me while on this health journey as we never had much help or support and she’s never known a ‘healthy normal mom’. My daughter has seen far too much struggle for 11. It’s pretty much taken away her childhood as far as I see it. Our love and bond are deep but at a cost to her that saddens me. I remember I use to ask myself if I’d rather be the strong healthy woman I was prior to becoming chronically ill and having an ill child instead just so that I could fight and be 150% of what she needs or be the sick one where everything still falls on me but I can not give her the mother I wanted to be or could have been for her had I been healthy .
I always came back to me being the sick one because I’d never in a million years wish the pure hell that I’ve had to endure that comes from dealing with our broken medical system while having these ‘rare’ diseases on anyone… more or less a child. I have a ton of knowledge and experience to share with you to use as you see fit and hopefully it arms you and helps your daughter in some small way avoid having to endure some of what I’ve been through over this last nearly decade of Chiari-EDS-Lyme etc.
My name is Christin and my email is firstname.lastname@example.org. Send me a message and I will respond there. Talk soon.
Looking forward to learning from you! Thank you for reaching out. May God continue to bless you and your daughter I have prayed many times for God to take it away from her and give it to me, it has definitely robbed her of the innocence of childhood. I understand what you mean when you speak of “reversing the roles”. I think perhaps God gifted her to you to help you through…children are so very resilient! I will email you soon.
Thank you again for your kindness and support. Good night—Angel
I’m 4 weeks post op decompression, and was diagnosed mid December. But before that if I had had a heavy weekend or didn’t eat well it really effected me. By the way I’m vegan - so quite conscious - but can have junk food too! Drink plenty plenty of water and eat as clean as possible. Big factor is getting a good 8 hours sleep every night.
Yes! Perfect answer…although odd to what we’re used to by staying aligned with very minimal bending.This goes for after surgery as well for awhile if needed. We have to adapt to what our bodies are doing for awhile especially until we have answers.PT also helped some with the pressure in my head still with little bending and tons of water,rest and ibuprofen.
I would say that the decompression surgery was a success, but it only stops the valsalva headaches and further nerve damage from happening. It Was helpful to me to stop the nerve damage and also stop the headaches. Please, please, please, check around before settling on a surgeon. They don’t all do surgery the same. I found out that I had Chiari when I was 40, only because my son was diagnosised. My son found out by a pure blessing from God. We went to have a cough looked at, and the doctor said he thought he heard a rattle, so they did are chest X-ray. The chest X-ray showed that he had scoliosis, which was large enough to need a ortho doctor. The ortho doctor did an MRI, and this showed that his spine was packed with fluid. Upon further investigation they found the Chiari. The neurosurgeon stated that by the time he had symptoms he could have been paralyzed. That’s when I Realized all the doctors we’re wrong that told me that nothing was wrong with me, and made me feel stupid that I was always in pain. All 3 of my biological children were tested, and my girl boy twins both had it, but my oldest daughter didn’t. I searched for doctors, but all were telling me that the only way surgery was done, was by removing part of the skull and leaving it off. I was having a extremely hard time with the way they did surgery, by not putting the skull back to protect the brain. The surgeons continued to assure me this was the norm. I prayed and continued to search, and God led me to Dr Weingart at Johns Hopkins. I thought I should call, and by the time I was off the phone I had an appointment scheduled, free airfare for my husband, son, and I, and lodging at no cost. Did I mention my insurance was also accepted. We thought we have to go and talk with them. We were impressed from the get go, and at the end of the consult they explained the surgery. My jaw hit the floor when they stated they put an expander in between the skull they cut off, and reattach it, and it grows back like a broken bone does. The biggest thing they said after was there would be NO restrictions, after that I couldn’t believe why any other doctors could do this to someone when there is a better way, especially for kids. In my opinion unless completely medically necessary, they should not be able to do surgery by removing the skull and not putting it back. This was a life changer for my twins. My son had surgery when her was 6 and my daughter when she was 9. They are 14 now, and have not had any problems. Please pass this on to anyone who needs to talk to a neurosurgeon. Thanks for listening.