I thought I began a discussion but I don’t seem to see it. Anyone have shoulder pain, actually the back of the shoulder area? Or little u has been suffering terribly, even wincing during the night. Predicate any insight. Thank you! Hope you’re all managing ok. Xo
That should have said our little guy, not u 
He’s 8. Just wondering if you all think definitely chiari related. Thanks!
I also have bad shoulder pain. I actually sometimes sleep with my neck brace still and it helps somewhat , also very uncomfortable at night. Wish I could give more advice but I am only six months out of surgery my self.
Yes, my pain goes into my shoulders when it gets bad. I try to stay ahead of my pain, but sometimes it gets ahead of me. In fact, I've had a problem sleeping lately because I prefer to sleep on my side but both shoulders hurt right now, and that pain goes back up into my neck when I lay on them. I have to sleep on my back during these phases. And if I don't sleep with a pillow under my legs when I'm on my back, I wake up with lower back pain instead of m shoulders! I feel like I'm taxing my brain every night, trying to figure out how to best sleep so I'll wake up with the least amount of residual pain.
FYI: sometimes all I have to do is touch certain points on my shoulders and can feel pain like it's bruised.
I have really bad shoulder pain on both sides and I've noticed that it gets worse when I have really bad head days. I've tried injections, kenalog shots, and massage and nothing seems to help. I also feel like it is bruised to the touch most days :( I have no idea what causes this and my doctors just look at me like I'm nuts! I was decompressed in 2009.
I also have severe shoulder pains. I was decompressed in Jan. 2013. My surgery corrected all of my symptoms except for the shoulder issue sometimes when I am attempting to sleep on my stomach and lying my head on my arm, it feels like the tissue is torn. But the way I look at is that if this is the worst pain I have to live with, compared to the symptoms prior to surgery, piece of cake.
Severe shoulder pain has been a new symptom for me, it’s been constant for the past month. I hate it, nothing really helps except strong meds and I’ve tried everything at this point.
I have shoulder pain and found out it was due to TMJ....which I think is all connected somehow...I have to be careful with any activities where I am engaging my shoulders a lot(overhead) drink lots of water and I get massage. I went through TMJ treatment and I am so much better.
I have been getting like a tightness? And the back of my head has been hot lately? I noticed when my head gets hotter my twitching/shaking in my hands gets worse? Im sooo lost about all this. Seems like nobody wants to help me or try and fix me!
I have tightness in my shoulders. I get shots of botox every three months and the other months get lidocaine. It does wonders
I have shoulder pain as well, I have found that decompression surgery for the meantime was not for me. I almost had the surgery this past October in NY. Thankfully Dr. Oro found that we were going to try a different treatment first to reduce the fluid in the brain by taking medication. So, far it has worked and taken away 80% of my symptoms. A big one was my neck and shoulders. I still get them from time to time. This Sept we are going to see if there is any progress in my MRI scans with Chair. If you can afford to go out of state Dr Oro in Colorado is FANTASTIC....
I had severe shoulder pain before surgery. It honestly almost never bothers me now so I assume it too was chiari related! Good luck to your little guy! I hope he feels better soon!
Shoulder pain, neck pain and daily migraine headaches were constant for over 20 years after my Chiari surgery.In 2006 I went to a pain clinic and had steroid injections and radiofrequency rhizotomies which gave some relief for about 3 years. Of course was on all the usual pain medications,too. Finally had a spinal cord stimulator implanted in my hip with 16 electrodes running up to the back of my neck. Have been pretty much pain-free for almost 4 years. Still take muscle relaxants at night but the implant has been life changing for me. I think this could be very useful for many Chiari sufferers and the first step would be a referral to a good pain clinic. It takes awhile to get a diagnosis that will qualify you for the procedure. This is very important for insurance coverage as the entire process costs around 100 grand. I have 8 different programs and can change the type and duration of the electrical pulses depending upon where my pain originates.
The problems that cause the pain are still present but the stimulator blocks the pain signals. The diagnosis was “failed spinal surgery syndrome” as they do not yet implant the device for a Chiari diagnosis. Anyone wanting more information can look online at Medtronic spinal cord stimulators.
As always you are your own best advocate and you may need to explore many pain control options until something works for you. DO NOT GIVE UP, you do not have to go through life in pain!
I was decompressed a year ago and my should pain started about 5 months ago. (in both sides) But my pain sometimes shoots down my arm. But for the most part it just my shoulders. I'm trying therapy right now. Well we'll see how it goes.
Thank you everyone! I guess it’s chiari related like everything else 
We notice there is a small lump next his shoulder blade on the shoulder that hurts him the most. Is there a way to upload a picture to see if anyone has any insight? Thank you! I hope you’re all feeling ok “ish” as our little guy says!
I have severe shoulder pain too but it is in the joint. I also have pressure pain in my neck and shoulders that I attribute to Chiari, but I’m not sure about the joint pain. I seen to have all over joint pain my shoulders, elbows and hips are the worst. I working with a rheumatologist and filling out paperwork to get in to see Dr Francomana to R/o EDS but that will probably be a LONG waiting list.
Are you all referring to muscle like pain or joint pain?
I have had severe RT shoulder/arm pain for a year now. Spent many dollars on a Chiropractor. Was just diagnosed with Chiari last month after spending 2 days in the hospital with stroke like symptoms. Severe headaches, severe dizziness, RT eye wouldnt focus. I have a 10 mm herniation and the symptoms are progressing quickly. My headaches are daily.
My NS is telling me that the Chiari will not cause the dizziness and blurry vision so I am waiting to see another NS in 2 weeks. My blood pressure is also very erratic- 90/60 to 160/100 .
Edwin! Get a new doctor. The dizziness and blurry vision are 100% chiari related. I could give you a list that would make your head spin more than it already feels like. Our son also had vision cuts where he could see only half the room. We can never get used to the pain our son endures and it's both difficult, and insightful hearing so many of you suffering in much the same way. Our son's blood pressure fluctuated and when in severe pain, he would spike a fever of 102 or more for a few hours, until the pain subsided to manageable level (aks still terrible). He was diagnosed with periodic fever syndrome among other bogus things. Although he still suffers, two surgeries and a year later, the debilitating head pain was ameliorated and the fevers, night sweats, blood pressure red flags, swollen lymph nodes blessedly went with it. We think it was just his body reacting to, and trying to fight the physical pain and also, becuase there was no csf flow and a 23mm herniation, there were also many other issues.
Edwin Kelley said:
I have had severe RT shoulder/arm pain for a year now. Spent many dollars on a Chiropractor. Was just diagnosed with Chiari last month after spending 2 days in the hospital with stroke like symptoms. Severe headaches, severe dizziness, RT eye wouldnt focus. I have a 10 mm herniation and the symptoms are progressing quickly. My headaches are daily.
My NS is telling me that the Chiari will not cause the dizziness and blurry vision so I am waiting to see another NS in 2 weeks. My blood pressure is also very erratic- 90/60 to 160/100 .
Hi Anna, traveling in the car for any length of time is so tough for our son but I like the sounds of Dr. Oro, I wonder if he’d see a child?
Sandy, I can almost not get through your response. It is exactly what the chiair institute proposed for our son. Exactly. He had a csf leak and a few months after the surgery he could not walk or four and a half months. We found out he had celiac disease and I guess the 2nd surgery and complication caused a heightened auto immune response. He still has nerve pain on the soles of his feet and can nNot be without socks, he is extremely sensitive to even the lightest tough, like wind through his toes. They said, before we knew he had celiac and severe vitamin deficiencies, "he has basilar invagination, very large Odontoid, and brain stem at almost a right angle. We will fuze the skull to spine, 6 months to a year recovery, and if still not walking, we’ll in tether the cord. No thank you, we know a child, a teenager who had teh surgery and is now is unspeakable pain, and their response is that he just wants pain medication. The nerve! It slays us. We think they want to further there research and perfect teh surgery. If the surgery went perfectly, it may, just may yield a life with little or no pain but we have heard too many horror stories. You never said, but are you still suffering after Ll that hip, graft, fusion stuff? There HAS to be another way.
As for Gavin’s shoulder pain, I am going to try to upload a photo. There seems to be a lump near the area that hurts. Right shoulder area. Thanks
350-image.jpg (1.63 MB)
