It is hard to tell if CM is progressing naturally, if there is an acute change it will be obvious but because CM is congenital its progression is slow, quiet a few people dont recognize the changes until things get out of hand and they need to see a Doctor. I have had some symptoms all my life that I did not know were symptoms, I thought it was normal ageing.
Many of the symptoms of Chiari are the same as those of SM, the only way to see progression is having an MRI, Chiari experts advise that ppl with CM or SM should be monitored regularly & have an MRI done about every year.......
Thanks, Ray! I had an MRI in May (with CINE) and did not have a syrinx at that time. I had a 'chiari episode' a couple nights ago with travelling numbness (arm, fingers, tongue, lips), kinda that out-of-body experience, and my vision has been worse since then. I've had more coming and going numbness on the right this week as well. It's a noticeable addition/difference in symptoms--not 100% of the time, but more than the last couple months. I think I had another ischemic attack, but just wasn't sure what to expect with chiari. My follow-up appts with NS and optha is in November (6month follow up)...just didn't know if I should request another MRI or appt with NS...symptoms aren't bad enough for me to consider surgery, but they are noticeably worse--just don't want to ignore and assume it's a progression--to find out that it's a syrinx or something!!
Any other input? Those who have developed a syrinx--talk to me about it. What was the dif in terms of 'normal chiari symptoms' to "something different" and I hould get in to be seen...
I have known about my chiari for about 8 or so years. My original complaints were dizziness, severe headaches, and just feeling "fuzzy headed" all of the time. Apparently 8 years ago I did not have a syrinx. Then in 2007 my PCP sent me for an MRI because I was having all of the same symptoms as before but at that time 2 of my fingertips were numb. The syrinx was noted at this time but my PCP never mentioned it because she felt that it wouldnt cause any problems. It has since grew signifigantly since 2007 and so have my symptoms. Now I am dizzy most hours of the day. I can not stand in one spot for more than like 30 seconds without feeling like I am going to pass out, most of my fingertips and tips of my toes go numb all of the time. I have the headaches, neck pain, shoulder pain, back pain, and feel like my spine is burning all the time. My scalp goes numb on the right side, my right eye feels droopy and my right side of my face feels "almost" numb.. A lot of these symptoms have became extremely worse in the past month and a half. I cant drive anymore, and taking care of my household is becoming harder. Plus I have 5 kids that are 7,6,5, and 1 year old twins..I hope this helps. I do know that everything I have and symptoms went from "tolerable" to "I dont know how long my body is going to make it without the surgery" I personally have been through numerous neurosurgeons until I found one I am comfortable with. And I will be having the surgery as soon as my new insurance starts..
Everyone's body is different, and if you feel that something is wrong push your doctor.. Syrinx's can cause nerve damage that is irreversible.
Hi...Ray is right that most drs will monitor those whose symptoms and condition does not make them surgery candidates...however, my NS said every 6 months with active symptoms...and especially if u have new symptoms to help avoid missing the formation of a syrinx.
Always call ur dr if u have increased or new symptoms in case he feels ur 6 month should be done a little sooner.
thieb9--I feel for you...my kids are 5 and 2 and I am determined not to let it interfere with my parenting--but as symptoms emerge, I am disheartened and realize I may need to change some of my thinking. So, how long from tolerable to I need to have surgery?? Is that the 8 years?
selma--Thank you for your input! It was your comment in re: numb feet a couple weeks ago compounded with these new symptoms/increase in symptoms/worsening of symptoms that made the possibility of a syrinx creep into my mind. Does an achy lower back go along with anything? Mine started last night when it actually woke me up....and has continued today--feels almost muscular, but I haven't done anything that would cause muscular back pain...just curious.
My achy back is due in part to my IBS and tethered cord...it acts up from time to time and the last month or so it is getting progressively worse...not sure right now it is iti the change in seasons/weather or my TC.
IF u do indeed have a syrinx, that too could cause pain and where depends on where the syrinx lies.
Keep us posted
I have been dealing with some of these symptoms for 8 years but when it started interfering with interactions with my children and me not being able to drive, that is when I decided to go with the surgery. But like I said before I do have a syrinx and it it getting signifigantly larger in what doctors consider a short period of time. I have seen many NS's and it took me a while to find one I felt comfortable with, and all of them agreed I need to have surgery to stop progression of the syrinx. I feel worse with each day so if it were up to me I would have the surgery tomorrow in HOPE that it will help!
I am having the same problems right now; within the last month or 2 my symptoms have gotten much worse than they were. I currently have had a headaches for 2 weeks straight that will not go away and I can barely get out of bed in the morning. I have a 5 yr old and I'm pregnant so my drs seem to think it's because of pregnancy but yesterday I finally demanded a full spinal and brain MRI because I am constantly worried about there being complications from Chiari. I have never even had a full spinal MRI and was diagnosed a year ago so a syrinx is deff. a possibility. I wish u luck on finding something out!
Sarah357--So sorry to hear that you are struggling!! When will the MRI's be? Can they do the CINE as well to assess flow?
Unfornately I do not really have a good neurologist and my NS is 3 hrs away so I'm waiting for them to schedule the MRI's in my local area. I had a CINE done in April and my flow was blocked so I'm supposed to get the surgery after my baby is born. I will keep you guys updated!
Sarah--When are you due? I'm going on a weeklong headache and cannot imagine adding the pregnancy piece to it :( How is your 5 y/o doing with all of this? I also have a 5y/o.
And, heading in for CIN MRI and Dr Di appt on Nov 4th...and can move it up even more if needed. I think I posted that on another thread...I need to only have one thread going at a time...too confusing for me otherwise!
I am finally getting a C-spine MRI next Tuesday. I don't need a CINE flow because I had one in May and my flow was partially blocked. I will be getting the decompression surgery after the baby is born. I am due on Feb 8th, it will be 1-2 wks earlier since I will be having a scheduled c-section. My head is better but I'm having extreme neck pain. My daughter is ok, I know it is hard for her when I can't play with her; her dad will take her out when he can and she gets a little upset if I don't go with them. But she also understands that mommy has a "boo-boo" on the back of her head. Let us know how the CINE flow turns out!