Hi Everyone,
I’m new here…trying to figure how to navigate the site. I’m a little overwhelmed and not exactly sure where I want to start. :) I am a 37 year-old homeschooling mom of two wonderful children ages 14 and 10. I have a 6mm herniation, and the tonsils are kind of fat and rounded, not the typical cone-shape many of you have. I have been doing some forum searches on specific topics the last few days, and I am very thankful for the info. I’ve been able to gain from reading some of your stories. Sounds like this is a very supportive community, and I have found a lot of useful info. I’m very thankful to have found you guys.
Ok, so I guess I will share my symptoms and my story and ask for your thoughts and feedback. I’m sure I will come up with more questions as I go, but for now, I will start with sharing my symptoms and journey thus far.
(I am trying to make a very long story shorter; my first attempt at this post started to sound like a novel, so I am starting over and hopefully I won’t lose too many people along the way, haha. ;-) I will start by listing my symptoms in the order of severity:
-Chronic, recurring vertigo for over 5 years. It seems I have some level of “dizziness,” balance/spatial awareness issues everyday, but when I get true vertigo, my head spins for a few days to weeks at a time
-Numbness! I wake up most mornings with numb hands/arms. Sometimes they are just tingly pins & needles; other times I wake up in the middle of the night with “dead meat” arms hanging there and intense pain in my biceps/shoulder muscles. I feel like I’ve lost some of the sensation in my fingertips. Sometimes I will feel like the back of one of my arms is numb in the middle of the day. Other times I feel like the back of my thighs are numb. My feet go numb quite often.
-Intense head pressure going from sitting to standing, or walking up a flight of stairs. Feels like my head is filling up from the bottom to the top and pushing out intensely on my cheekbones. My vision will get dim, and it takes me several seconds to be sure I am not going to pass out. Then it goes away quickly.
-Visual problems – saccadic dysmetria, hypometric saccades, occasional double-vision, eyes tend to want to “defocus” during driving.
-Neve Pain – (Amytriptyline has definitely been helping some with this.) I have had lots of transient pain in the arms, wrists, hands. I had a week of severe burning foot pain that was waking me up every night for a week and then completely disappeared. Shooting, electric-like pains in my legs that will catch me off guard and make me cry out. Sometimes the pain will bother me for an afternoon or evening, or sometimes it will disappear as quickly as it came on…
-Migraine headaches – only a couple a month since starting amytriptyline. They usually break-through during my menstrual cycle. Usually frontal, behind one eye. Movement makes them worse. Sometimes I am nauseous, but I don’t ever throw up.
-Neck spasms, chronic foot cramping and spasms (both feet), pulsating head pressure at base of skull – usually short-lived and annoying, but not necessarily “painful”
-Raspy, strained voice – I actually did not connect this with Chiari until recently where I saw this listed on a symptom list. I had assumed it was due to my twice-a-day usage of a Symbicort inhaler for asthma which I was diagnosed with about a year and a half ago. But when I asked my PCP if Symbicort could be causing this, he said I should not be having this much trouble, and he can’t figure what the problem could be. He said to use saline spray in the nose, and we will revisit the situation in March when I see him again. I’ve been dealing with this voice problem for over a year, and saline spray is not helping at all.
-Ear pain/pressure/tightness in my right ear- feels like there is pressure from the inside, and there is pain on the eardrum whenever there is loud noise like my dog barking, etc. PCP says I do not have infection and the ear looks completely normal. He gave me some Flonase to try for a month in case it was due to a sinus thing, but it’s been over a month with no change. Wondering if this is Chiari-related….It’s very bothersome!
So those are most of my symptoms. Here is my story:
It all started for me just over five years ago when I had my first episode of vertigo which lasted on and off for days/weeks over the course of the summer of 1998. At that time I was also experiencing a lot of tingling and numbness in all of my extremities, but I was more concerned with the recurring vertigo that seemed to last and last for days on end. (I spent most of 2011-2012 very dizzy!) Long story short, I have spent five years searching for an answer to why I get this vertigo, and along the way new symptoms have started to stack up. Specialists I have seen include chiropractor, ENT, 3 neurologists (including 2 headache specialists, 1 of which is a renowned migraine specialist), neuro-opthamologist, physical therapy/bio-feedback, otoneurologist, and finally a neurosurgeon.
My neuro-opthamologist is at Cleveland Clinic, and she is the first one that took my MRI seriously, as she works closely with the Chiari specialists there at CCF, and has seen many Chiari patients. She is technically the first doctor to officially diagnose me. Up to this point all of my symptoms were getting dumped into what I call “The Migraine Bucket,” and every doctor told me to not worry about the Chiari mentioned on my MRI report – “It’s just a little ectopia.” During this visit with the neuro-optha, she initially also wanted to classify my visual problems as being migraine-related, but once she was able to look at my MRI, she allowed for the possibility that I might actually be having problems because of Chiari since it technically meets the imaging requirements based on measurement. She referred me to see two other Cleveland Clinic doctors: a migraine specialist, and Dr. Mark Luciano (neurosurgeon/Chiari expert).
I had my first visit with Dr. Luciano a couple months ago in September. I found him to be very knowledgeable on the subject of Chiari, and overall I liked him and feel he is a kind doctor. He is actively doing research with the University of Akron mechanical engineers on Chiari Malformation and CSF flow (which I think is pretty cool since UA is my alma matter, and my hubby is also a UA alum with a degree in mechanical engineering. :-). Anyway, when I met with Dr. Luciano, it was during a period where I was actually feeling pretty good with minimal symptoms. I had recently started a trial of Amytriptyline for a few months, and was having some improvement in headaches, vertigo, and nerve pain, so I didn’t have too many complaints on that particular day. (I’m sure some of you guys can relate – when you have a good long stretch with a few weeks of really good days, you tend to forget how BAD it is when it’s bad! At least that’s how it is for me…) So when Dr. Luciano looked at my film and reports that particular day, he essentially told me that even at 6mm herniation, he did feel it probably IS an “incidental Chiari – an anomaly, kind of like a crooked nose…just because it’s crooked, doesn’t mean it’s not working correctly.” That’s exactly what he told me. He said to him, the fluid spaces in my brain looked like they should on the static picture, but that we would follow up with a CINE MRI of my cervical spine to give a better idea what’s going on with potential crowding (which is scheduled Jan. 2014). When I asked him about having a lot of the top common Chiari symptoms, he simply explained that truly, the top common Chiari symptoms are the top reasons people visit their doctor in general, and there are many, many causes other than Chiari that can cause all of these things…He told me he tends to be more on the conservative side and only operates on about 20 percent of the people with Chiari that visit him, and that yes, he has many patients from around the country who consult with him about Chiari. So I was scheduled for a follow-up and CINE MRI of the cervical spine, and I will see him again in January 2014. I’ve had many more problems come up these last few months, so I have no idea what they are going to find on the CINE flow, or what he is going to recommend going forward. I’d love some feedback about your impressions, and questions I should ask at my next visit.
My dear, sweet, extremely supportive hubby is of the opinion that if Dr. Luciano says it’s not Chiari causing my problems, then I need to accept that and keep investigating other causes, and put this whole Chiari idea to rest, so to speak… It seems like Chiari patients, on the other hand, recommend searching out a new NS who will agree with you… Dr. Luciano said there are some “Chiari experts” out there who operate on everyone, so to beware. I’m not really sure what I will do if he again tells me in January that he doesn’t think I have a symptomatic Chiari. Advice?
After the appointment with the NS in Sept., I saw the migraine specialist, also at Cleveland Clinic to determine once and for all if my symptoms really are migrainous in nature or if they are due to something else. When he examined me, he did some things during the exam that other neurologists have not, and he told me he saw some problems with my reflexes being “brisk” and some other things I didn’t really understand. Combined with my symptoms of numbness, spasms, pulsating headache, etc., he said it points to something clearly wrong in my neck, and other than when I do get true migraine headaches, he didn’t think any of my other symptoms were very likely migraine-related at all. (Which is obviously a totally different conclusion than what every other doctor has said.) He told me that even though I have a “small” Chiari (He actually called it “unimpressive” at one point.:-), it might be an “important” Chiari. He said that I should not put out of my mind yet that I might ultimately need the Chiari surgery, and he told me that he was putting in his notes that he is actually recommending me for surgery pending the results of the CINE flow in January… I also asked him about the brief pressure headaches I get every time I go from sitting to standing, whether or not that could be POTS, and if I should be checked out for that? He said it could be, but he doesn’t want any more doctors or testing clouding/confusing the issue of Chiari because he said that Chiari could be the ultimate cause of everything I have going on. He said he wouldn’t recommend a POTS work-up UNLESS the CINE MRI looks normal. Does that sound right to you guys?
I am so sorry this got so long. Believe me, this is the “short version” Lol. I hope a few people have hung with me. ;-) For now, I am dealing with another vertigo spell, and all of this numbness. I am in waiting mode until January when I see Dr. Luciano again. I feel like it’s kind of a waste of time at this point to have my PCP take another look at my ear problem, considering it might all be a Chiari problem. I’d love to hear your thoughts and feedback on my story. It was nice to just have this opportunity to put it all in writing. My symptoms seem to sound so similar to many of yours. I am tired of feeling like I am complaining to family and friends – it never helps the symptoms go away, and I don’t want them to get weary of being around me. My hubby asks me every day how I'm feeling, and it's just to the point I don't want to answer anymore. I’m sure you all understand what I mean. Thanks for hearing me out, and thanks to all of you who have contributed to the site. I have found the info.here to be very helpful and encouraging so far.
