New to site, New to CMI

First posting from a new member. I am not a CMI patient, but my wife is.

I will do my best to keep this historical description brief. About 6 months ago my wife started experiencing some tingling and numbness in her hand, then it moved up her a arm a little then her foot on the same side. The on the other foot and hand. She went to her PCP and they did a bunch of blood and cardio tests and found nothing, so she was referred to a neurologist. We went to him in early December. He was great and preformed and exhaustive physical exam on her and felt she had small fiber neuropathy (SFN). SFN is the result of another problem, like pre-diabetes, B-12 deficiency, etc.. So he too ordered a battery of blood tests, a MRI with contrast, and others. All her blood work came back fine however her MRI show CMI with a measurement of 6mm. When the Neurologist spoke to us about the results he explained that many people have CMI and are asymptomatic. My wife 39 was asymptomatic as well. Even after racking our brains we couldn't come-up with any historical symptoms that could be attributed to this newly diagnosed CMI. So, we felt pretty good.

A week ago, she felt pain at the back/top of her neck and this eventually turned into a headache that radiated forward and had some nausea. She went to bed that evening and woke up again with the neck pain and eventual headache. This pattern continued for the first 4 days, with probably a slight lessening of severity over these days. On day 5 she woke up with some slight pain in neck, but no real headache and no nausea. On day 6 she was up and about for about 3 hours before any neck pain and got a headache about 3 hours later, she sneezed a few times and there was no additional pain/sensation (as there had been on day 3). On day 7 she woke up without any neck pain and had only a slight (what she called a regular) headache, not that painful radiating forward one. She was without neck pain for 14 hours, which started right before she went to bed and was minor. Today, day 8, she woke up early and was free from any pain and still is almost 5 hours later. She is a teacher and is going back for half a day today, and has the support of her staff to take it easy and slow. She is going to take tomorrow off and use those 3 days over the weekend to REALLY take it easy and hopefully feel better by Monday.

I would like to say that so far her neurologist at the Cleveland Clinic has been great. She has an appointment with him scheduled for later this month, so long as nothing changes or gets worse, and we will be discussing next steps and referrals to a CMI specialist at that time.

So I guess what I am wondering as we are both new to this whole thing, is can her symptoms flare up like this and fade over time? Prior to this episode, she was on her feet a lot and walking around barefoot on hard surfaces, for like 3 days. I am thinking that this jarring may have aggravated her previously dormant condition, and the lessening/fading of symptoms over the past 8 days as she is taking it easy, seems to support that, or maybe this is all just coincidental. What do you think?

My symtoms come and go all the time. Sometimes lasting only a day or sometimes a week. Each time I get a little nervous when I wake up and still have numbness,weakness, neck pain or my head feels to heavy for my body I wonder if it is going to be permanent this time and then I start to feel better. I guess when it does not get better they might consider surgery for me, who knows. I do know that my symtoms are brought on easily by things such as sneezing alot or tilting my head back to look up at the sky for to long among other things. You start to learn what triggers yours. Although some days I have trouble and don't remember doing anything at all. I think it is great that she has the support of you her husband and the school she works at that is huge, wonderful. There are alot wonderful people here and so much you can learn so welcome.

I hope she gets answers. She is lucky that you are so supportive!

My symptoms also come and go, I guess that is what you would call a flare up. Before I was diagnosed, I would hope that the headache was going away, just to have it come back with a vengance. I too have triggers, we all do, and Tiffany was right when she said you start to learn what triggers yours. I knew my triggers before I was even diagnosed! I swear the docs looked at me like I was crazy when I would go to the ER with a horrible headache and they would ask me when it started, I would tell them "3 years ago" (I know they were thinking, yeah sure the headache started 3 years ago). They would say okay then, when and how did it get really bad? I would have to then tell them "Oh, I sneezed a few hours ago." They would tell me they had no idea, and put enough medication into an IV to knock out an elephant then send me on my way. The point is, even though the triggers sound like strange reasons to either start or intensify a headache, they are really not strange at all (not to us). We all have things that make it worse that we try to avoid, but it is not always possible (I cannot avoid sneezing, or the hiccups but I can avoid laughing and bending over).

It is so nice to see a husband so caring about his wife and her condition, that he thinks to look to a support group for some answers. Everyone here is very helpful and supportive of everyone else and that includes the caregivers of a loved one with Chiari.

Just one more mystery here... On Friday my wife was in pretty good shape, only noting some neck soreness (about halfway down) on and off 3 times or so during the day. Then just before bed, she read an email from another teacher that really aggravated her and immediate said her neck now hurt, not ached, hurt. Strange.

This happened again on Saturday, she woke up fine, after a couple of hours we took a long walk to Starbucks, all is well until she talked to her Mom on the phone, they had a disagreement about our kids and she then told me her neck just started to hurt. This faded away after about 30 mins. This basically happened again at night when she lost her patience with our 8 year old, got mad, bam! immediate pain. I should also mention that while she has had some minor headaches over the past days (some in the back of her head, some near her temples, but never as bad as those first 3-4 days), EVERY TIME I hear her sneeze or cough I ask if it hurts ANYWHERE and it never does, even when I know she is having a headache.

I am starting to wonder, hopefully of course, that these pains and headaches might not be her Chiari becoming symptomatic, and may be something else. Tension headaches (not the muscle kind) or some other kind of headache I don't know about.

Mercifully she really has no other Chiari symptoms other than that nausea that was there at the very beginning.

All of this will be discussed with her Neuro ASAP.

What do you guys think?

Oh, and thank you all for all the kind words and responses to my original post. I really appreciate all your support.

Ok, maybe I spoke too soon. Last night she had a weird episode where her left arm, from her mid humorous down got tingly and numb. Although she still had all sensations of touch and movement without any weakness or other problem. This lasted only a little while, about an hour. After going to bed, sat about 1a, she told be the arm tingling and numbness was back, and now also her left leg. Again, no weakness or lack of mobilty, and she was still able to feel touch. Both were gone by morning. She says that all of this felt just like the small fiber neuropathy that had just recently all but disappeared. How strange all these symptoms are…

I am new to this site but not CM1 and for me at least I had a large cluster of what I was told are “Thunderclap Headaces” during the first two years of CM1. I was diagnosed right away because they thought I had a brain hemorrhage, which was lucky for sure. But what my GP’s did from there (which would seem to work) was put me to sleep on morphine on gravol IV drip and I would wake up about a day later and be functional for a while. I only had about two dozen “Thunderclap” Headaces over the course of just over two years. When I would have a bad day I would take 200mg of Codine Contin, 30 mg of Cyclobenzaprine and 150 mg of PMS-Diclofenac. Codine and Diclofenac were taken half dose twice daily and the benzaprine was thee times at 10 mg.

I guess I don’t know much, but symptoms seems to gradually get worse and better as they see fit. I also think that symptoms are not usually coincidental.

I have not had a thunderclap in going on my third year so knock on wood, but W/O the thunderclaps I now have had trouble with sleep, numbness, shaking and weak left side, which I was told by a Neurologist that it was “Essential Tremors” and an inner-ear infection. I guess I had an ear-infection for two and a half months then. I am currently no longer taking the previously mentioned Meds and am on a new regime of Teva-Propranolol at 40 mg 3x per day and 7.5 mg of Zipiclone to sleep. I find the Propranolol helpful for the shakes, but I am not sold on the Zipiclone for the sleep. For the weak and numb, I started going to sauna’s or steam rooms just to warm up and get sweating, I don’t know if it helps a whole lot, but I do truely feel better after. I have also started riding a seated exercise bike couple four times a week for about and hour at real low impact/stress. I have found the exercise helpful but I am 27 and should be able to do these things. Just know that if you try and do Cardio or Propranolol, well at least I have not been able to get my heart rate above 90 BPM, so I don’t know what the long term of that is…

I dunno, I went almost symptom free for two years before I got dizzy, numb and shaky. Of everything I’ve read, I don’t think the rhyme or reason of CM is near being understood, so I remain sceptical about coincidence and I hope this helps a little.

Hello! I came across your profile and see you are from Medina, I am in Berea. I recently found out I have Chiari 1 and just the other day found out I have a syrinx as well. Who does your wife see at the clinic? I have a neurologist at University that I like and she helped me to find a neurosergeon that I like as well. However, I have done a lot of research lately and have come to the conclusion that I am going to travel to Denver to see Dr. Oro who is well know for treating this condition. I live with daily pain from headaches, to neck and back pain, numbness, sleep apenea,anxity/depression, etc. I am a flight attendant so going to work has been real tough lately. I was told that I sould have the surgery and real nervous for many reasons. When I came across this site it was a blessing in a way to see I am not alone. I would complain of aches and pains all the time, which others would just think I am crazy. I think its great that you are very supportive of your wife and helping her to look for answes. On my end, I feel as though some close to me just dont want to hear about it. I wish you both the best of luck!!

Hi..

My Sx's come and go in severity and I am over 3 yrs post op...I am very bad at taking my own advice and resting , ect.when I need to.

Forgive me, I have been off the site for a while due to my moms death and I MUST go and read your profiles..all you newbies....so happy you are here!!!!

Peace,

Lori

I too have been away from this site for numerous reasons but hopefully I have the time and technology to be more connected now. 2 years ago my symptoms and pain were out of control. The insomnia from Chiari and menopause made me crazy. I honestly believed that I would have to stop working and file for disability, which I did not want to do. So I made changes that I hoped would improve my quality of life and I am better today for it. Chiari symptoms vary and unfortunately CM pts never know what each day will bring, so we learn to roll with the punches. I can be pain free and symptom free one day and then in crisis the following day. I know my triggers so I make a conscious effort to avoid them. Stress is a major trigger. It can't be avoided but it can be decreased. I think it is a true testament of your love for your wife that you are so involved. Kudos to you. I wish your wife the best!

Sheila

Neo and all other newbies WELCOME!.


Sounds like your wifes Chiari is aggrivated by stress, when my chiari came to a head i strongly believe it was brought out by stress and once it started there was no stopping the trend of symptoms either, it was defidently a ride thats for sure and not always the most enjoyable one. I know once i learned a lot more about chiari i was surprised to learn the number of things i been dealing with all my life that i just always thought was normal.

the best advice i can give to you is try to minimize your wife's stress- maybe even start now with learning some biofeed back or relaxation with her it can be of great help! (you can buy some cd's and even d/l some free online)

another suggestion i want to give to ALL NEW PEOPLE is Keep a journal for your medical symptoms and medication doctors apts etc what works what doesnt etc..this way you will have a journal of your journey (another helpful tool) ALSO Please remember to get a copy of ALL testing that you go through to keep for your records and if at all possible get their "findings also (the techicians reading)" this too is also helpful-for any possible future appointments with new doctors.

check into this link for some helpful information http://www.chiarisupport.org/page/member-resources

i wish each and everyone of you the very best

~Lisa

My initial symptoms were from a very stressful situation in my life. A situation that isn't just getting angry at someone and then calming down. Mine was life altering and with that so was my pain. I have read many different profiles and blogs about their symptoms coming from a head trauma, mine started not with a head trauma but from STRESS. It never got better, even after the stress slowly calmed down, I only had decent days and horrible days. When I would go into the ER because of the pain they would of course ask if I had been stressed out, and of course I told them yes and they would say it was a tension headache. Then the stress faded and the symptoms were still there, then they had no diagnosis for me at all. Good luck to you and your wife!

I haven't seen yet someone else say that their Chiari was bought out by stress. I am so glad I am not the only one. My family (my grandmother) was horrible and told me to take care of my stress and maybe see a therapist and then maybe my little headache will go away. I don't talk to her anymore, because when I finally had my diganosis and surgery scheduled she didn't respond at all about it and never even once called to make sure I was okay. Oh well, one less stressor in my life : )

Lisa W said:

Neo and all other newbies WELCOME!.


Sounds like your wifes Chiari is aggrivated by stress, when my chiari came to a head i strongly believe it was brought out by stress and once it started there was no stopping the trend of symptoms either, it was defidently a ride thats for sure and not always the most enjoyable one. I know once i learned a lot more about chiari i was surprised to learn the number of things i been dealing with all my life that i just always thought was normal.

the best advice i can give to you is try to minimize your wife's stress- maybe even start now with learning some biofeed back or relaxation with her it can be of great help! (you can buy some cd's and even d/l some free online)

another suggestion i want to give to ALL NEW PEOPLE is Keep a journal for your medical symptoms and medication doctors apts etc what works what doesnt etc..this way you will have a journal of your journey (another helpful tool) ALSO Please remember to get a copy of ALL testing that you go through to keep for your records and if at all possible get their "findings also (the techicians reading)" this too is also helpful-for any possible future appointments with new doctors.

check into this link for some helpful information http://www.chiarisupport.org/page/member-resources

i wish each and everyone of you the very best

~Lisa

well i know mine was not brought out by hitting my head or any type of accident of sorts. but i do know i had been under a terrible amount of STRESS. and I know if you tell your neurologist STRESS brought it on he or she will look at you like you turned every shade of purple and green and just sprouted horns- believing that is completely IMPOSSIBLE!! But I KNOW what brought it about and the facts do not change!!.

like i said though once the chiari came and slapped me in the face there was NO stopping the symptoms, everytime i woke up i woke to something new almost making me fear waking up anymore- but i thought this too i shall survive-- i did have the decompression ONLY AFTER FINDING a chiari SPECIALIST and someone i felt comfortable with- not some knucklehead who told me to come back when i could no longer breathe (no lie that actually came out of an NS's mouth)- the road to recovery had its ups and downs and i was one of the lucky ones who had setbacks but those too i survived-and continue to work with...and lessons learned along the way.. here are a few:

symptoms are many & often life long -that i accepted as "normal"

love and support are KEY

journaling is a great way to keep track of things

always remember to get copies of ANY testing done

dont get discouraged (this is a tough one)

soft collars are of great help for longish drives'

biofeedback is a wonderful relaxation tool (once learned)

listen to your body (extremely important)

open yourself up to learning alternative ways of doing things.

accepting change( this was hard for me because i am not who i was b4 chiari hard to explain i guess- most respects i am but there are things that have been made much worse since chiari ie-esclators,large crows,lots of movements etc)

not all NS's are knowledgeable

MOST NL's know NOTHING about chiari

Thanks to all for your kind words, thoughts, and prayers. They are greatly appreciated.

The other thing I should say as far as history goes, is that we are in the Cleveland area and have always seen doctors that are part of the CLeveland Clinic system. Our kid's Pediatrician has always been phenomenal, and we have encountered very few docs that weren't the same. We are lucky to live in this area.


Quick Update: After a call to her Neuro to describe her strange new symptoms (intermittent tingling in arm and neck pain), he recommended a trip to the ER (our local hospital recently became part of the Cleveland Clinic, so that is VERY good as they are all tied in together). His logic was that while he didn't think it was anything serious like a stroke, but wanted to be safe. He also said that while at the ER, they would run tests that would take weeks to get done as an outpatient. Well he was right. After 7 hours in the ER, wife had blood work, a CAT scan, EKG, and a CINE Flow MRI (maybe other MRIs but I am not 100% sure). Her ER doc was great, and after I told her about the Chiari, she mentioned that the attending Neuro was a specialist with this. I recognized his name as someone I was interested in maybe switching over to from our current general Neuro and ask that she involve him in my wife's case if at all possible. It was the end of the day and even though we didn't see him in person, he read her history and her current Nuro's notes, he ordered all the tests, and when everything was done he read all her tests that she had done in the ER that night. He prescribed her some steroids to try and address what he believed might be some swelling that is causing her sudden pains, and some painkillers as needed.

While being discharged, our ER doc read the neuro's notes and he stated that she had some restricted flow and wanted her to see one of the Neurosurgeons who specializes in Chiari at the Clinic's main campus for a consultation. We are seeing her on Tuesday. We are also switching over to this new neuro when we see him in 2 weeks. Both appointments are very encouraging as it usually takes weeks if not months to see a CCF doc. They are busy because they are good (usually). The NS's office called yesterday to confirm the appointment and said that they had reviewed her films and images and that they saw the restriction and eased our fears that she was any immediate danger (my concern).


Condition Update: 2 days after leaving the ER, my wife says that the pain is much less than before (reduced or no pain, no dizziness, no nausea no more tingling (she thinks)), she only took 2 painkillers on Tues (4a & 1p) and feels much better. I am guessing the Steroids/ant-inflamatory is doing what the Neuro hoped it would do. Hopefully this will continue to settle down for her and she will be comfortable. For anyone that has been through this stuff you can all understand how encouraged we are that we are going to be seen by a NS and Neuro that specialize in Chiari at one of the world's great healthcare facilities without having to travel 2 or 3 states away. There is always HOPE!

I am encouraged by the fact that she was diagnosed with CMI on December 19 (asymptomatic), experienced her first symptoms on December 29, and is going to be seen by a NS and Neuro who are Chiari specialists in mid Jan. I can't imagine a better scenario for her to be in if she had to be in this situation. We are fortunate that she won't have to go through the years of trying to figure out what her problem is. For this we are VERY thankful.

After we meet with these folks I will be glad to share our experiences, but I just don't feel comfortable sharing their names at this time. Thanks again for all your support and encouragement.

FlyGirl,

We are, and always have been, dealing with docs at the Cleveland Clinic. If you go on their site http://my.clevelandclinic.org/staff_directory/specialty_search.aspx you and enter "Chiari Malformation" in the Specialty, Disease or Treatment field you will get a list docs that treat Chiari. You can also start researching the work these folks have done and you will see that several have done lots of work in this area. I did this and feel comfortable that the 2 folks that we are going to be seeing are true specialists, not just doc who put Chiari on their list of conditions they treat.

After we meet with her NS and Neuro I will be glad to share our experiences, but I just don't feel comfortable sharing their names at this time. Thanks again for all your support and encouragement.



77flygirl said:

Hello! I came across your profile and see you are from Medina, I am in Berea. I recently found out I have Chiari 1 and just the other day found out I have a syrinx as well. Who does your wife see at the clinic? I have a neurologist at University that I like and she helped me to find a neurosergeon that I like as well. However, I have done a lot of research lately and have come to the conclusion that I am going to travel to Denver to see Dr. Oro who is well know for treating this condition. I live with daily pain from headaches, to neck and back pain, numbness, sleep apenea,anxity/depression, etc. I am a flight attendant so going to work has been real tough lately. I was told that I sould have the surgery and real nervous for many reasons. When I came across this site it was a blessing in a way to see I am not alone. I would complain of aches and pains all the time, which others would just think I am crazy. I think its great that you are very supportive of your wife and helping her to look for answes. On my end, I feel as though some close to me just dont want to hear about it. I wish you both the best of luck!!

I have had "migraines" for quite a few years and just chalked it up to that. I also get horrible headaches in the back/bottom portion of my head when I laugh too hard or cough, yell and such. Again I never told anyone about them because well...what are you gonna say? Some days are better than others, I can go for days without headaches and such but lately the headaches are daily and pretty intense. I also get vertigo at times. Your wife definately needs to take it easy if she's feeling rough. (even though I am currently sitting at my desk at work with an ice pack on the back of my head so the pain will subside enough for me to drive home.)

Thank you for taking the time to get answers.

Patty

Neo- sounds like you have everything undercontrol, your wife is very lucky to have sure a wonderfully supportive husband by her side- youd be surprised how many people don't have that.

You are one of the lucky ones who have been fortunate enough to have the right balls fall in the right places so she hasnt had to suffer much and go through years of doctors and pain to get to the end of things and to find a doctor who knows Chiari. You are very fortunate.

It does sound like the anti-inflamatory,steroids are helping her feel better and thats great! glad she found some relief I do hope your upcoming appointment goes well, I hope you and your wife had a lengthy disgussion about surgery and how she feels about the possible prospect of surgery, the pros and cons?- if you havent had this disgussion this may be something you want to have with your wife so you know how she feels and she knows how you feel.

Best wishes to you both

We met with Dr. Violette Recinos at the Cleveland Clinic. She is a NS who specializes in CM. She was great and actually didn't think my wife's CM was the cause of her problems. I do have respect for a surgeon who doesn't want to cut someone open. She made all the ime in the world for us and talked us through her whole thought process. I can think of nothing but good things to say about her. Good luck to you.

77flygirl said:

Hello! I came across your profile and see you are from Medina, I am in Berea. I recently found out I have Chiari 1 and just the other day found out I have a syrinx as well. Who does your wife see at the clinic? I have a neurologist at University that I like and she helped me to find a neurosergeon that I like as well. However, I have done a lot of research lately and have come to the conclusion that I am going to travel to Denver to see Dr. Oro who is well know for treating this condition. I live with daily pain from headaches, to neck and back pain, numbness, sleep apenea,anxity/depression, etc. I am a flight attendant so going to work has been real tough lately. I was told that I sould have the surgery and real nervous for many reasons. When I came across this site it was a blessing in a way to see I am not alone. I would complain of aches and pains all the time, which others would just think I am crazy. I think its great that you are very supportive of your wife and helping her to look for answes. On my end, I feel as though some close to me just dont want to hear about it. I wish you both the best of luck!!

welcome and happy to have you here. I am relatively new to the site here but the people I interact with and the group as a whole are very supportive , positive and informative. Hope all goes well