This forum was a godsend when my daughter was going through her surgery and her complicated recovery. In January of this year her arm pain returned. The pain is an ache that never really resolves, and there are periods where she gets a level 10 pain down her arm that lasts 10-20 seconds. She also has decreased sensory perception in her right arm.
MRI's in January and October of this year show the syrinx "decompressed" and the rest of the MRI "looks good" with good flow. An EMG was normal. Gabapentin was stopped because it is not a nerve problem, and was ineffective anyway.
Neurosurgeon thinks the arm pain is caused by prior damage from the large syrinx, and referred her to physical therapy, massage therapy and acupunture. I guess we are confused because the pain existed before her surgery, went away for a year, then came back in January even worse than before. As I said, the MRI show the syrinx as decompressed even when her symptoms seem to indicate it is coming back. The NS said that unless the syrinx comes back, there is nothing he can do for her.
As for headaches, she had an occipital headache last month that lasted for a week, with sensitivity to light and sound. She stayed in bed for the entire week. The NS thinks it is Chiari related, the Neurologist thinks it was a migraine. So far, the headache has not been back, thank goodness.
Anyone have experience with acupunture, or returning symptoms when the MRI "looks good"? I just feel bad that she has this daily pain and loss of feeling, (but no muscle weakness).
I am recovering from decompression after a "normal" MRI. Is this the same NS that did her decompression? If it is, is he comparing the October MRI to a post-op one or just to his idea of normal? It could possibly be slowly returning and if he isn't comparing to her post-op MRI, it may not stand out to him. Also was the MRI complete of the spine and brain? Just checking if the actual Chiari was imaged again as well and looks normal.
I am sorry to hear about your daughter. I too had had arm pain intermittently for some years prior to my decompression surgery and had never had any answers for it. Even when I had a chiari diagnosis, I never put them together. After my decompression surgery, things were going fine in regards to my arm until I did a repetitive yoga-like movement over a couple of days which flared up my arm again and worse other stuff - very painful for a longtime. Soon enough, I did find out answers for this. I saw a fantastic physical therapist who diagnosed we with a problem with my "neurodynamics". My nerves were conducting to muscles fine enough but they were getting physically stressed at points along their pathways - all which my crazy chiari brain interpretes as pain. But it is funny pain that doctors do not always know what to make of then say that it is all in our heads! (does this sounds familiar or what!) The nerves were not physically moving well when I moved my body during day to day stuff. You forget that nerves are actual physical things!
Anyways, I have been doing these neurodynamic exercises for some time and things have definitely improved. I have a ways to go but I understand that the process is slow when it comes to nerves. Neurodynamics is one word and "david Butler" is some big guru physical therapist guy who figured a lot of this out. If you find someone who knows about this but who has not necessarily dealt with Chiari, they have to start SLOW and far away from the neck to start. There may be an element of scar tissue of the dura that is involved. It is kooky and does not show up on nerve conduction tests or MRI's but I know that there is a huge difference between my left and right side that is slowly decreasing and consequently decreasing my pain levels and increasing my tolerance to activity.
Hope that helps and good luck in your search. I have definitely found that doctors do not have all the answers for the wonky things that Chiari folk experience.
Hi and thank you for responding. Her NS retired so this is a new one. He has all her scans so compared her post op to her most recent and said all show interval decrease in the syrinx. It went from 9 mm to less than 1mm at the widest point. Her October MRI was also a cine MRI and CSF flow was ok. You are right that all her symptoms indicate the syrinx is back but the MRI tells a different story. She also has a small pseudomeningocele that the NS says is “normal” and not causing any problems. This fluid has also decreased since her last scan.
I hope your recovery is going well. Did you have a syrinx?
JoAnne
Hi Gabby! I am sorry you have the arm pain too however it is very encouraging that you are finding relief from PT. Just the hope I was looking for. I will mention neurodynamics to her PT…they tell me they have experience with chiari patients. Definitely will tell them to stay away from her neck especially with the small pseudo she has.
The NS also mentioned scar tissue at the dura, interesting. She also has decreased sensitivity very marked on her outer arm and the ring and middle fingers. Crazy that it doesn’t show on the EMG. I think if she starts to see some improvement she would be much happier. The NS said she’ll never be “perfect” which honestly ticked me off because we don’t want perfect we want pain free.
I’m having repeat chiari headaches along with lower abdominal pain, numbness/tingling in my hands and sensitivity to light and sound.
My MRI is normal aside from surgical changes and “there is no evidence of chiari malformation”. But I’ve had a headache since Oct 22nd that hasn’t dropped below an 8/10 on the pain scale unless I take 2 percocet at the same time. Right now the headaches appear to be the most pressing issue and I’m doing physio twice a week…
I know my symptoms are very different than you daughters but I thought I’d reply anyway saying I’m having repeat symptoms with a ‘normal’ mri result. We don’t know what the cause of my symptoms are yet.
I hope your daughter feels better really soon. Xoxo
Did she have a duraplasty or just a boney decompression? Did she get a plate to the back of her skull?
Has she been REALLY evaluated for Ehlers Danlos/ hypermobility? EDS is a concern because with many Chiarians with this hypermobility also have Cranio cervical instability. CCI and a regular decompression without the CCI fusion don’t mix. Untreated CCI often gets worse after a decomoression because some ligaments are cut and compromised, making the neck a bit less stable. If your ligaments are normal this is ok, but with EDS the ligaments are already struggling to keep proper bony alignment.
For EDS Google the Brighton Criteria and the Beighton Criteria. Many forms of CCI can be seen on a C-spine or brain mri (like basilar invagination, sharp klick axial angle, retroflexed odontoid) but to see the abnormal movement (caused by weak ligaments) she will need a flexion extension c-spine mri. Not all NS are able to screen for CCI correctly (or at all) and it takes a specialized NS who deals with the Cranio cervical junction in cases of Chiari and EDS. A regular NS will understand CCI in the case of trauma and a broken cervical vertabrae, but don’t consider the condition in cases of EDS or other hypermobility syndromes. CCI stretches and kinks the spinal cord and medulla
and the symptoms mimic Chiari.
The NS I’m aware of who fuse for the CCI are:
TCI, NY
Bolognese, NY
Henderson, MD
Rosner, NC
Frim ?, IL
Trumble, fL
Sandhu, MD
Patel, SC MUSC Just recently heard about him from Patty
So sorry she is going through this. Please give her a hug from us and a hug for you too mom.
UPDATE! First, thank you to all who responded, I carefully read everything on your posts and I can't thank you enough for taking the time to answer. My D is doing much better, she is on 10mg of amitryptyline at bedtime. This medication is an excellent migraine preventer and is also treats nerve pain. She had to have an EKG first to rule out any heart problems. So far, she has not had a major headache that motrin could not handle for some time (I'm furiously knocking on wood as I type this lol). She is also receiving accupuncture from an MD in Philadelphia...not cheap by any means as he does not take insurance, but I can submit payment to my insurance company for at least some reimbursement. Accupuncture is interesting...the tiny needles are inserted and electrical pulses are sent to the muscles. The arm pain has decreased in frequency, but remain as painful as ever when they do occur. We are hoping that with additional treatments the arm pain will decrease even more in frequency and level of pain. We are going to do at least 4 more treatments of the accupuncture and then assess where we are. Again, I am grateful for this forum and the people on it,