Hi everyone, I was diagnosed on August 13th with chiari 1 malformation. I'm 27 years old and have a 3.5 year old daughter. My story of being diagnosed.... I started getting pain in my shoulder in may. I work on a computer 8 plus hours a day. So I thought it was from working. The pain gradually got worse. The pain moved into my neck and was bad. A couple days later my arm started going to numb randomly . Then I started getting pins and needles feeling in my hand. I went to urgent care and they told me it was a muscle spasm. To just stretch and it would go away. I went back to urgent care 4 days later and they told ,etc the same thing.....muscle spasm keep stretching and gave me pain pills. I ran out of pain pills and i still had the pain 2 weeks later, so I went back to urgent care. This time it was a new Dr and she said it was a pinched nerve in my neck and it would go away, but she wouldn't give me Norco because the pervious Dr had already gave it to me . So she gave tramadol which just made me sick. A week later I finally got into seeing my primary care Dr and he said it was a pinched nerve and referd me to a neurologist. The neurologist agreed that it was a pinched nerve and ordered an MRI. After waiting 3 weeks I finally got the MRI. This whole I was fighting to get pain meds that actually worked. Finally I went and saw my pcp again for a follow up app. He gave me the results of my MRI and gave me pain pills!!! After being accused of drug seeking. Any ways the results of the MRI were chiari 1 malformation and Syrix of the spinal cord from c3-t9. After that appointment my symptoms have progressed... now the pain is in my spine, the numbness is in bot hands and feet, I started getting pressure headaches , and muscle jerks while resting, and blurring vision. I also suffer from depression and anxiety. I went and saw the neurosurgeon today and he ordered a MRI of my brain so he doesn't miss anything. If there is nothing wrong with my brain he will be scheduling decompression surgery. I'm very nervous about the surgery. Can you guys tell me about your decompression if you had it done. Please. I'm wondering about the recovery since I have my 3 year old!!!
Your diagnosis was pretty quick!! Mine took about 12 yrs and a lot of research on my part. I was diagnosed with a 13mm herniation back in May and had my decompression July 31st and what a wild month it has been. My doc chose to remove some of the skull, hollowed out my 1st vertibre rather than removal and fusion and he chose a duraplasty without shocking my tonsils. The procedure it's self is pretty physically taxing, I din't think it would be but wow!! About 5 days after I went home the first time I sprung a csf leak. This is seriously the worst headache I have ever had, EVER, and caused me another 2 week stay in the neuro ICU, 8 days of which I had to stay completely flat on my back 24/7. I have been home a week and a half now and am feeling stronger day by day but without my families help I would be hard pressed to make it work. You are going to need a strong support system for you and your little one in order to make this work. Also remember each of us is different and Chiari hits each of us in unique ways. I by no means want to talk you out of it, since honestly it is the best thing I have ever done for myself. Just be prepared like all great things this too requires sacrifice and work <3 Good luck on your journey and I am always here if you need an ear <3 ~Amy
Regarding recovery, I would plan on having live-in assistance for 2-3 weeks post surgery. With plenty of additional assistance for two months post surgery. Cook up freezer meals and stock up on the baking. If you belong to a church, tapping into that resource would be helpful. A hired cleaner or someone doing it for you for at least that 2-3 months would be wise. If you do not ask, people do not always think about the recovery period for a young person with out a highly visible disability. Good luck with your planning if you go ahead.
I also had all your symptoms and was diagnosed with chiari and a syrinx so I feel your pain! I was diagnosed two years ago and finally couldnt take the pain any longer so I had surgery six weeks ago. I had a five day hospital stay and it was tough but im already feeling better. Headaches were the worst pain after surgery but now im only dealing with a little dizziness. My neck pain from the syrinx is still there but seems to be getting a little better every day! Im still recovering but this was very helpful whenever I had any questions so dont be afraid to ask for help.
I was 25 when I had surgery with a 4 and 6 year old. Make sure you have help and don’t over do it. It was really hard for 2-3 months because I was so tired and just felt exhausted. They took muscle casing from my thigh which hurts and makes if difficult to chase around kids and do stairs for awhile. Best of luck.
I got sick also on 8/13 and woke up with severe neck pain and numbness to my right arm. I went to my PCP and he gave me some meds to help with the pain. They helped a little. The pain worsened and then the headaches started 8/17/15. I went back to my PCP and he gave me a steroid injection and then said he was going to order a neck MRI. That took several days before I even heard anything so I went to the ER and ended up in the hospital. The medicine they gave me Morphine helped. I was given a diagnosis of degenerative disease in my neck. I was even told I needed neck surgery but a few things happened in between there but I too was seen as a med seeking freak instead of being heard of my symptoms especially the headaches. I found a 3rd neurosurgeon and he immediately saw something in the neck MRI's that were done while in the hospital and he ordered the brain MRI and a few more just to rule out other things but he diagnosed me with the Chairi 9/28/15. I had surgery 10/13/15. Since then most of the headaches are surgery related. I no longer have arm pain, shoulder pain, or nausea, my thought process is improving. I am much weaker then I thought I would be after surgery, I walk with cane for safety reasons but doing better. Usually waking up once a night for pain vs three times a night for pain. Prior to surgery I had myclonic jerks in my legs and post surgery I know have them through out my whole body and scheduled to see a neurologist for that. Benzodadiazepime such as ativan, or cloponie, help with these. Since surgery I have felt like my head is in bowl/helmet but that is improving daily. I also work at a desk working at a computer 8 hrs a day because of this type of work my dr said my recovery time is 4 months and can not return to work till then. Some of my post opt restrictions included no lifting up more then 15 lbs, no vigorous activity, no bending down, i accidentally bent down once and realized why they said that because it is very painful. I personally believe it would be beneficial to speak to your doctor about an anti depressant before your surgery because all surgeries especially this one is depressing. Large amounts of rest is necessary after this surgery I have never been able to take naps but now I take 2 hour naps every afternoon. One day I didnt and had more pain that night than other nights. if you have any questions please reply and will reply because I too still have questions for people who have had the surgery. But to add all of my pre-opt symptoms have subsided now I just have to deal with post surgery/recovery. Good luck and God Bless