Hello All!
I am exceptionally new to all of this but am wondering what others here have experienced as a means to perhaps have a better, clearer understanding that I am not alone.
At the beginning of this month, literally, I had a terrifying experience that led me to the ER and 'possible Chiari' diagnosis. I am still waiting.
My symptoms mimicked cardiac issue, although I was certain that was not the case. My CT scan revealed low lying cerebellar tonsils and cerebellar ectopia. I am currently awaiting the MRI results.
Here is my confusion/concern. I was informed by the ER dr to 'immediately' see a neurologist the following day. That was a two day journey into a lesson into things that are impossible. The earliest I could get an appointment with a neurologist was August.
My PCP states that this issue being congenital is really no big deal. Especially since I have been dealing with it since birth. This was interesting since I have never seen my PCP or spoken with her directly since diagnosis, but I have heard this information from her nurse. She did agree to order the MRI after she returned from vacation.
In the meantime, my symptoms are a day to day crap shoot. Some days are lovely. Other days I can barely figure our what the heck is happening. I've headaches the likes of which I can not describe the pain.Bumping into walls, my hearing comes and goes, nauseated, I've got the dropsies, I struggle for breath, and the scariest for me is never knowing I am going to choke on my food.
All this being said, it appears that the only person concerned is me. I have yet to experience a doctor (aside from my original ER doc) that thinks these issues are a big deal.
Can anyone here empathize with my experience, may share their experience with me...?
THANKS ALL for listening
Cerebellar ectopia is a term used by radiologists to describe cerebellar tonsils that are "low lying" but that do not meet the radiographic criteria for definition as a Chiari malformation. The MRI may reveal more. Had there been an actual brain herniation significant enough to show up on a CT, that indeed would have been a cause for concern, but the "low lying tonsils" is the key word that eliminated that possibility. It is highly unlikley that you would have a sudden onset of Chiari symptoms, as the condition was present at birth. There a re a few exceptions such as becoming a teenager and having rapid growth spurt or a traumatic injury. 80% of Chiari even with symptoms are not treated.
I'm sure its concerning but don't hit the panic buttton yet. There is plenty of time for that later if necessary.
Hi hon, I am sorry you are having such a difficult time. I understand how challenging it is when it feels like your whole world has been turned upside down and when you are in a lot of pain. One thing I have done when dealing with uncertain medical issues is to keep a detailed log of my symptoms. I write down what I was doing (which might just be sitting) and the symptom. I wow the day and time and I rate my pain on a scale of 1 - 10. Then I try to figure out ways to help with the pain. This helps me to feel more in control of my situation and also helps the doctors. I bring a copy of my symptom log to appointments and it becomes part of my medical record. I have also learned a number of mindfulness techniques which have helped me (with practice it wasn’t instant results). There is a mindfulness group here you might be interested in. Please hang in there and keep us updated on how you are doing. Hugs.
Hi GiftednBlessed,I can definitely empathize with you.I had no idea what was happening to me,I have had back issues that started in 1977(so I thought) when I was 22,I sneezed and when I tried I couldn't straighten up,all of a sudden my right leg was way shorter than the left,it came right after 2 weeks in hospital and didn't happen again till 1983,in 1997 while at work it happened again and never came right. An MRI showed my lumbar spine was worn out as well as sacro illiac joints.In 1998 I started getting a horrid pressure pain every time I strained doing anything but a CT brain scan came back clear of any nasties.By this time I was on narcotic pain meds and using arm crutches to get around then 2001 a Neuro advised a wheelchair to conserve my lumbar spine but he also said he was convinced I'd always had slight scoliosis but it hadn't been picked up.Fast forward to early 2011and I started having high blood pressure,problems swallowing, vision probs,tinnitus,balance issues when using crutches in non wheelchair friendly places and dropsies,if it was breakable it got broken.Trip to optometrist ended with him advising I have a brain scan,it came back advising an MRI for a Chiari Malformation 1.Took till August for that and results came back ,herniated tonsils 1.5cm and interrupted flow to brain fluid.Nobody had heard of it before, my Dr couldn't even pronounce it.Was March 2013 by the time I got into a neurosurgeon.Had my surgery 3 months later.During the time of diagnosis and surgery I had 9 bouts of Aspirational pneumonia which was caused by the swallowing problems, when I laid down flat the food was going into my windpipe, After the 8th bout in December 2012i started sleeping in a recliner chair and I still do.I did have pneumonia after my surgery though as when I came out of anaesthetic I was sick while still laying flat.I would suggest after you get your MRI results and if it shows the Chiari is interrupting brain fluid flow that you arm yourself with as much knowledge as possible, keep a diary of everything that happens,even if it seems trivial.I was made feel like an idiot when I'd end up in ICU with pneumonia, nobody would believe me about the Chiari and was blaming it on my pain medication mixed with the swallowing problems,if it wasn't for the Gastro Specialist knowing about Chiari and writing an urgent letter to the Neurosurgeon I'd probably be still waiting or would have died from the pneumonia or sleep apnea., something else I had and didn't know about till staying with my son. Hope this has made you feel not so alone,Good luck and keep a tally of dropping things.My tally I reckon just with broken coffee mugs would probably be 40-50 over the last 4-5yrs,plus lots of bowls and plates.Dropped my tablet 3 times the other night and now one side of my screen is white and other side is pink. Will keep you in my thoughts and prayers. Vicki.
We all have our journeys that ultimately led us here. Which is a wonderful place where u will realize your not alone and there are more of us out there dealing with the same or similar problems.
I was in an accident doing 65 mph (not my fault) in 2003 and have been dealing with the headaches ever since. My biggest obstacle was that because i dont look sick people think that its all in my head.... well (technically) it is all in my head. I have spent years having people think i was lazy or just didnt want to be around them. Spend alot of time "acting" like it doesnt hurt because who wants to hang out with someone who hurts all the time. But the trick is to come up with a gameplan and get the doctors to listen to what you are saying and feeling. I write down a list of all the new and weird symptoms i have even if i dont think they are related. I also keep a pain journal which i TRY to write in everyday. I start every page with what time i went to bed and what time i woke up. I then write down what level of pain i was i when i woke up. 1-10 is the simplest. I write down details of what i did that day and where my pain level went from when i woke up. Take it with you to the dr because they will start to take you more seriously cause what kind of weirdo would spend hours documenting mundane activities everyday, besides who has the time?
How many psychologists does it take to change a lightbulb??? ....... 1 but only if the lightbulb is willing to change.
Best of luck,
allura
Hi Allura,even after decom surgery I still take notes to my local Dr as he doesn't get that surgery isn't a cure ,I have been trying to get a referral to a Rheumatologist but he couldn't do it.he was not impressed to get a letter from Neurosurgeon saying he wanted me sent to a Rheumatologist. He's still stalling,did bloods last Tim ,said he'll do referral next week .I'm doing a diary for Rheumatologist, getting prepared..
Allura said:
We all have our journeys that ultimately led us here. Which is a wonderful place where u will realize your not alone and there are more of us out there dealing with the same or similar problems.
I was in an accident doing 65 mph (not my fault) in 2003 and have been dealing with the headaches ever since. My biggest obstacle was that because i dont look sick people think that its all in my head.... well (technically) it is all in my head. I have spent years having people think i was lazy or just didnt want to be around them. Spend alot of time "acting" like it doesnt hurt because who wants to hang out with someone who hurts all the time. But the trick is to come up with a gameplan and get the doctors to listen to what you are saying and feeling. I write down a list of all the new and weird symptoms i have even if i dont think they are related. I also keep a pain journal which i TRY to write in everyday. I start every page with what time i went to bed and what time i woke up. I then write down what level of pain i was i when i woke up. 1-10 is the simplest. I write down details of what i did that day and where my pain level went from when i woke up. Take it with you to the dr because they will start to take you more seriously cause what kind of weirdo would spend hours documenting mundane activities everyday, besides who has the time?
How many psychologists does it take to change a lightbulb??? ....... 1 but only if the lightbulb is willing to change.
Best of luck,
allura