Had surgery may 2014. Felt ok for couple months and healed really fast from surgery. But am now having symptoms i never had before such as the muscle jerking, hair loss and the choking on nothing thing is happening more than usual, also the pain. It is progressing and i cant keep up, am on imitrex , lyrica and inderal. The inderal helps with the tremors and the vertigo so i like it but does nothing for head or neck pain.and the headaches travel down arms to hands and halfway down my back. A,so have herniated disc at c3 c4. And arthritis in neck a d degenerative disc disease. Also have migraines, and then nausea is getting to be almost 24/7. So anyone taken any meds that actually help??
Abby had good advice above.
Have you talked to your neurosurgeon about symptoms coming back? Have they done any follow-up MRI's?
Havent seen neurosurgeon since post op. No new mri. He works at 3 diff hospitals and also the cancer treatments centers of america. Am seeing new neurologist on feb 2nd. but is taking forever to get here.
Most common cause of late failure(good for a time, then recurrence of symptoms), is progression of scar tissue. If you were good after surgery, at least that portion of the symptoms that got better were related to the Chiari. Scar may cause recurrent pressure(that's why most of us open the dura now, in order to try to minimize this risk but it can happen regardless.
This is a case I would suggest you don't want to waste your time with neurology. Call your neurosurgeon. Let them know you have recurrent symptoms and ask for a follow-up appointment.
This is the setting in which I prefer a cine MRI of the CVJ, because, even if the decompression looks good, flow may become obstructed by scar/webbing. Much of the frustration is that, the treatment would then be repeat decompression with lysis of adhesions(breaking down the scar) but, once you've scarred enough to block flow, the risk of failure of post-operative improvement is higher. You may want to confirm any images the neurosurgeon wants prior to the appointment.
The above is based on the likelihood you would want repeat surgery if ongoing obstruction was found. If not, certainly proceed with neurology.
Im not gonna lie Dr. Trumble, The idea of cutting the scar open for the 3rd time in 2 years isn't exactly making me jump up and down for joy.lol. But I am desperate enough to do anything if there is a chance it will help.
thank you,
allura
This post is what made me join this group. My husband was diagnosed 9/18/14, surgery 10/14/14, symptom free for four weeks then in 11/18/14 the symptoms returned and have gotten worse with the addition of the neck & head jerking and pain shooting through the top of his skull. He has been on pain meds for over a year due to an unsuccessful fusion of L4-L5 but his dosage has been significantly increased in the last 6 months. We were told his last MRI was normal and referred to a neurologist. I’m just not happy with his lack of concern and apparent ignorance in ACM so I’m currently waiting for his neurosurgeon to call me back with a new plan of action. We has seen 3 drs this week and all of them said ‘I DONT KNOW!’ It’s torture watching my husband ho through this.
Is the pain in the top of his head a lightning bolt type of pain??
If so, lyrica will help with it because it is nerve pain.also there is garbapentin (sp) but it gave me significant side effects. Am so sorry you both are going thru this, i cant imagine having to watch a loved one in so much pain and feeling helpless to help them. Ice at base of skull or at the site of pain may help. Heat feels good until you take the heat away then it makes the pain worse.
Allura
any suggestions on getting a neurologist to test for dysautonomia? the neurologist i seen a couple weeks ago diagnosed me with Benign Paroxysmal Positional Vertigo.(after i tripped fell and almost sent the scale thru the wall at dr. office cause everything was spinning) which brings me to my second question, what does balance therapy entail?
Abby said:
You might be suffering with another disorder called Dysautonomia, many of us also have this in addition to Chiari, also Ehlers Danlos,
here is a short explanation of each one.
Dysautonomia is the dysfunction of the autonomic nervous system. The brainstem controls the autonomic nervous system, and dysautonomia can be caused by the damage done to the brain stem by cranial settling or Chiari 1 Malformation. The autonomic nervous system controls everything that happens in the body that an individual does not have to think about, like respiration, blood pressure, temperature regulation, digestion, balance, and heart rate.
Dysautonomia is categorized into several types.
Postural Orthostatic Tachycardia Syndrome (POTS)
Quick Identification
Symptoms: fainting, palpitations, nausea, lightheadedness, overheating, hyperventilation, vomiting, chest discomfort or pain, headache, loss of balance, loss of sweating or excessive sweating, weakness, tremulousness, neuropathic pain, and/or abdominal pain when upright
Diagnosis: A tilt table test is the standard method for diagnosing POTS. A change in the patient's heart rate of 30 beats per minute (bpm) along with the patient's symptoms should be used for diagnosis.
Individuals with this disorder experience loss of balance, lightheadedness, overheating, hyperventilation, palpitations, chest discomfort or pain, nausea, and/or fainting when upright. The autonomic nervous system cannot control heart rate, blood pressure, constriction of the blood vessels in the lower body, or respiration in individuals with POTS. When a person changes to an upright position, gravity begins to act upon their blood and pulls it to the lower half of their body. Most people's bodies adjust heart rate, constriction of blood vessels, and blood pressure to push the blood out of the lower body and up to the organs where it is needed. In an individual with POTS, this compensation does not occur and essential organs cannot get the blood they need while the individual is in an upright position. Upon returning to a neutral position, symptoms will subside, though it may take hours for them to do so.
Ehlers-Danlos Syndrome(EDS) is characterized by a weakness of the body's connective tissues. Connective tissues act like "glue" in the human body, holding everything together. Collagen, a protein that adds strength to the connective tissues, is not produced correctly in an individual with EDS. The resulting weak connective tissues are too weak to hold the organs, ligaments, joints, ect. of the body in place.
Ehlers-Danlos Syndrome is currently separated into 6 major types. Individuals may have a combination of several of these types.