Hello! I am new to this community. I was diagnosed last May by a pain management specialist who was looking for the cause of not only my neck pain but the weakness, numbness and tingling in my arms. She acted as if the diagnosis was no big deal and was more concerned with the Carpal Tunnel Syndrome in my right wrist. I was put on Neurontin and a muscle relaxer but soon lost my job and my insurance. This diagnosis explains just about every health issue that I have experienced in the last 10 years. Most of the time, I was told that it was all in my head or I was looking for attention or trying to get out of working. I have zero support at home as my partner and family just see it as an excuse and my employer is the same way. I feel like I am drowning in my symptoms. Two of my vertebrae are pushed out slightly in my neck (C1 and C2) and I have a narrowing of my spinal cord as well. I haven't gone a day without pain in months and now I am having trouble with my eyes. I am terrified and just looking for some answers. I am waiting to hear about insurance but in the meantime, I need to find ways to alleviate my symptoms so I can function.
I had the exact same problems in the beginning when I was diagnosed.
I delt with my pain for almost a year until finally seeing a neurosurgeon who immediately said surgery was my only option in complete relief. I’m now 1 month and 5 days post op from my initial decompression surgery (I had to have two other surgeries afterward, but thats a whole nother story)
But I also lost my job from it and haven’t worked in about 6 months- my symptoms by the time it was time for my surgery were so bad I could hardly get out of bed most days.
I had the worst pressure headaches imaginable, tingling and numbness in my hands and arms, neck pain, blurry vision and vision disturbances (seeing blAck spots), dizzy spells where I’d nearly collapss and couldn’t see or walk, muscle weakness, nausea and vomitting, all that good stuff.
My primary doctor also didn’t believe my tingling and numbness was from my Chiari and he too was adamant it was carpal tunnel and made me take a nerve conduction test (of course it wasn’t carpal tunnel). I was put on Gabapentin (the generic form of Neurontin I believe for the pain from the tingling, and it helped for about a week, then nothing and eventually gave me violent shaking episodes.
I’m so sorry you have no support from your loved ones, that makes the whole process even more difficult. I couldn’t have made it through without the help from my mother, especially after surgery.
Not having insurance also makes a huge set back, but I’ve also been in that situation during my journey with this.
As soon as you can get that situated you need to get a referral to a Neurosurgeon ASAP. And make sure it’s one who specializes with Chiari or you’ll get no where.
Do research on Neurosurgeons in your area who specialize with this condition. Also do your research on the aurgery and preare yourself mentally to be told this could be an option.
I will not lie, brain surgery is no joke, and was extremely painful afterwards. But it was well worth it, I’ve been headache free since, only pain now is juat surgical pain.
As for pain relief in the meantime, unfortunately there is not much that can be done. I’ve tried almost every medication you can think of.
Don’t let you Primary doctor give you medications to treat migraines, they won’t do anything as you don’t have what would be classified as migraines, however let them treat you accordingly for the pain you have in your neck, with your spine and your nerve pain- eapecially if the Neurontin is working for you.
But once I saw my NS and explained my symptoms (I was extremely symptomatic. Also, a little background- I had a 7mm herniation and also have a very large arachnoid cyst, but my NS insists that just needs to be left alone)
The firat thing he said was that he recommended surgery- I was already fully prepared for this news and prepapred to accept. But I was afraid I would have to wait like another month to get in for surgery because I know doctors can be booked far out in advanced sometimes, and so I asked him what he could do for my pain until then, and he said the only option for complete relief was surgery, the other option would be pain management but even then that wasn’t going to truely help my symptoms. Luckily the day I saw him I also booked my surgery appointment and it was for 5 days later.
I really hope some of this information has helped you. If you have any questions, or I missed anything, please don’t hesitate to ask and best of luck to you!
I haven't actually been treated in over a year. The only thing I have for pain is Aleve and Advil. I am working on getting insurance so I can be seen for it. My symptoms seem to have intensified over the last 6 months. I appreciate the advice and the information. I have only met one other person and she is 10 years post op. She is geeting ready to have another surgery because she is once again having symptoms. She said my syrinx was an emergency situation. My biggest problems are my blurry vision and my gag reflex. It's hard to brush my teeth. Any ideas of safe exercises that I can do to stay active? I know I can walk but I am hoping I can add to that. Thanks again!
I have had chiari symptoms for over 15 years. I had a decompression in 2012 and also a corpectomy with c5 to c7 fusion, the fusion was a year later. As for exercise i I do recovery yoga, the deep breathing helps with the pain. Some days I have to do it laying down because of the vertigo and nausea, go slow and listen to your body. I hope your family comes around. I have been blessed with my husband and my two sons.
OTC medications did absolutely nothing for my pain. My primary doctor gave me so many other prescription NSAIDs and anti-inflammatories with no avail. And bad as it is, and many dread the thought, the only real pain relief would be stronger opiate type pain relievers…
Hopefully you’re able to be seen soon. I was in the same situation, I dealt with my symptoms for about a year until finally getting to see a NS, but in the last 6 months before seeing him, my symptoms gradually intensified to where they became unbearable most days.
My blurry vision became a big problem for me as well, and I still have it post op, I feel as though it’s worse, but then again, it could also be that I am in need of glasses as well.
I never had any sort of gag reflex issues, as I’ve never had a gag reflex.
If you’ve been told your syrinx is an emergency situation, then you definitely need to get that addressed asap. I know getting insurance situated is very difficult, and I had to pay a lot of money to get mine going. I’m very lucky though to have Tricare and they’ve taken care of everything. But your syrinx can cause permanent damage even after treatment if you wait to long, so please try to get that taken care of as soon as possible.
As for exercise, I’m really not sure. I stopped being able to do any sort of exercising about three or four months before seeing my NS, as any sort of activity would give me horrendous headaches, I would especially feel it the next day. I normally woke up with indescribably painful pressure headaches, but if I had tried to do any sort of exercise the day before (I had bought a bicycle thinking it would be an easy type of exercise) the pressure headaches I’d wake up with the following day were far worse than normal. But that was just me, I have abnormallu high intracranial pressure- even after decompression surgery. I had contracted meningitis after my CSF leak repair surgery and while I was in the hospital for that they gave me a lumbar drain to determine if I’ll need a shunt. I’ll have to have one more spinaltap in about two weeks when I go in for a follow up to check my pressure levels again, and depending on if its at the same level it was when I left the hospital or if its gone up, then I’ll have to have a shunt put in.
So everyone is different. Just do light exercises, you could try bike riding or yoga or things like that. Just take it easy, you don’t want to make things worse.
Hello I am also new to the diagnosis of chiari and also to this website, I was diagnosis this March. I took myself to the emergency room because I thought my head was going to burst. The E.R. doctor told me that I have migraine headaches did a CT scan of the head and told me that everything was ok I had no hemorrhage or stroke send me home with prescription for migraine. Two days later again same headaches with numbness in the back of my head, headaches that would wake me up in the middle of the night and neck pain I took myself to the doctor's office and told him that I didn't feel like my self I had no energy and my neck hurt he thought that maybe I had meningitis and was admit to the hospital.
At the hospital I had two MRI done one of the Brain and the other of the cervical spine, the findings were a 7.7mm cerebellar tonsil herniation. So my doctor told me not worry about it "I was born with it and it's just like having a deform ear" lol and the neurologist who saw me at the hospital said "it was nothing" so he decided to do a nerve blocked in C2 and C3 for my neck pain to help me out with the pain I was discharged went home with Neurontin but my headaches and pressure in the back of my head would not go away followed by some neck pain. Now a couple of months later my neck pain and my headaches have subside some what I have found to help me is rest of course some medication also the doctor prescribe physical therapy to help with my cervical instability.
All I can say is that I feel very sorry that you don't have the support of your family just don't give up and maybe educate them on what this condition is all about, take out articles on these condition so they can learn. Remember if doctors that see us sometimes they don't know themselves how can we expect for our family members to know. Help them understand what this is all about and have them go with you to the doctors appointment. Don't stop educating your self and look for a doctor who knows about this condition. Hope this will help. dizzyt
@Dizzyt- I’m sorry you’re going through that. It sounds a lot like my situation when I first started having symptoms. Only difference is, I was diagnosed at the ER when I went for my headaches, but at least they told me and I knew from the beginning, they told me I had Chiari and other abnormalities they couldn’t explain. However I didn’t know the details of of it (like how big the herniation was or the fact I have a huge arachnoid cyst) until my primary doc sent me for an MRI and I got a copy of the report…
Just like you though my.doctor told me I was birn with it and it couldn’t possibly be the cause of all of my terrible symptoms.
Even though with him believing that he still sent me to a neurosurgeon who immediately said I needed surgery or it would just keep getting worse.
My advice to you is don’t listen to your primary. They more than likely don’t know a damn thing about your condition, and will try to find every excuse for your symptoms to not be caused by that (mine swore the painful tingling and numbness in my arms were carpal tunnel -.-) of course, my doctor was completely incompetent, it took months for him to finally give me a referral to a neurosurgeon. He kept trying to tell me I suffer from “daily migraine headaches” even with the proof of the MRIs right in front of him. We played the medicine games for months (until I got to the NS) they were always migraine medications which do not work for Chiari headaches, ours are in a different class. They’re caused by increased intracranial pressure from the blockage the herniation is causing.
The very last time I saw my primary he gave me Gabapentin (Neurontin) &Indomethacin- both of which didn’t help, in fact the Gabapentin gave me violent shaking episodes. But I asked him “if these medications don’t work this time, because none have in the past, what will we do next?” And the exact words out of his mouth were "well hopefully by the time we find out if they work or not, you’ll be seeing the neurosurgeon and you’ll no longer be my problem, you’ll be his"
I was appalled.
I was sure to call Tricare and change my primary after be released from this last stay in the hospital, because I know eventually I’ll be released from the care of my NS back to my primary, and I was not going to go back to him if I was such a burden on him.
So what I’m saying, do your research, all you can on your condition. Learn everything about it, and learn all you can about treatments and how the surgery works, everything. (I have a notebook I filled up with all the information I found) don’t let your doctor tell you you aren’t feeling something that you know you are. I had gotten to where I didn’t trust doctors anymore, I was lied to by mine and he didn’t try at all the medicate me properly to help me be comfortable.
They think because they went to med school they know you and your body better than you do, and that’s clearly not the case.
Best of luck to you! Educate yourself as well as you can and don’t let your doctor dismiss your symptoms. Ask for a referral to a neurosurgeon if you haven’t already seen one, and let he/she take over your case.
Feel free to ask any questions. Just like most of the people on here, I’ve been through hell and back with doctors, and had two surgeries related to chiari, contracted meningitis and also had surgery for a lumbar drain. So I’m here to answer aby questions.
I wish you the best of luck!