What is the worst thing I deal with (have dealt with) with Chiari?
1. So many vague symptoms that can be chalked up to other simple causes (back pain? lose weight... feet numbness? get up and walk...)
2. Dr took 5 YEARS to finally send me to Neuro. It took my foot refusing to work right because of muscle weakness before he took me seriously.
3. Others thinking/saying I was lazy because I literally could not do things that required me to bend over due to the excruciating headaches it caused, I had total lack of energy, and muscle weakness in legs and arms/hands.
4. The return of symptoms after a time of actually feeling mostly normal. That would be very depressing.
These are all Pre-Diagnosis.
Wow…. Lol! Not laughing at you or the question. Just the reality of how many ways Chiari has an affect or effect or lives is just overwhelming if you let yourself think on it.
When a trip to the ER becomes necessary, visit to a new Doctor, etc. With virtually any change in your health care you have to deal with the sorry but idiot policies. Here we have what they call a trauma center. Locals call it a joke. Yet to get anyone to give me the time of day when things do go wrong I have to drive not 3 miles but just over 3 hours to get help. Here the ER has sent me to Cleveland Clinic for sciatica pain. Well the fact that I’m a double amputee has more to do with the sciatica pain than Chiari does???? More recently I’ve given in and sought a therapist just to help my mind come along for the ride. I’ve always had issues riding or driving pain wise due to other issues. So making us drive additional hours ina car because medical staff here can’t do a little research on their own.. ahhh wrong day for me to have read that question Sis. LOL
For me, it my legs and speech difficulties. A friend of mine understands what's happening to me, he asked how I was doing and he was like "oh crap" because I held up my crutches, he understands it progressing. I went undiagnosed for almost 15 months now. I hate when a couple of people claim "Chiari can't progress" and it can. I went two fully functioning legs to legs that can't work well. Last weekend, I had two visitors they were like "you're walking fine" to that Monday they were like "you don't need crutches to walk." and I felt humiliated because I do need the crutches to help because I can barely walk, when I do walk without them, I struggle big time. I can do short distances, like really short but long distance is hard.
I think the ever changing symptoms, (as well as the usual continuous symptoms) are confusing to me, let alone a doctor! When I’m asked, “what are your symptoms?”, by a doctor, I often don’t even know where to begin, it’s so extensive! :(
I also feel that I’ve been told for so long, that it’s all in my head, that sometimes I believe that it may be the case (or wish that were the case) I honestly don’t know what’s real and what might be in my head anymore!
Getting my thoughts straight, on paper, isn’t the easiest either, never mind going to a doctors office and being expected to shoot off the most important essay of my life, only to walk out without answers to most of it!
I could go on and on here...stay tuned! Ha!
Wow! You come up with some good questions selmaS!
I’m taking a break from my normal response to answer this question. Normally, I would read all the responses before answering so as to not repeat someone else. With this question I believe repeating may be necessary to help us all see the real answer to the question. So her goes I’ll try and keep it short lol
Doctors that think their own perceived knowledge give them more insight than a specialist who actually understands chiari. Doctors who see CM on your chart and turn you away from the ER thinking oh they are just making it up. Doctors who like to ignore you to tell you what is going on without even talking to you about why you came in for the visit.
I’m not sure if this fits or not? Forgive me if it doesn’t. Perhaps my absolute most emotionally difficult thing with Chiari is never knowing if this new symptom is another evil tentacle of CM that can be ignored or if I’m going to have to fight to get some doctor to open their eyeballs enough to see oh we should check that out. Current example - part of my birth symptoms from CM was near death due to spina bifida occulta. My spine stopped just short of killing me at birth. Because of that my spine has continued to decline the pain is so extreme at times I can’t even get into a bathtub to soak. Yet you go to the ER for what? Help? NO, because they don’t do anything but say oh it is just your chiari. I hate living in a small community of blind people. My wife gets it because she knows me and sees what I deal with even when I try to hide it. Others who knew me my whole life??? People I’ve bent over backwards to help my whole life... do they get it or even try??? Nope. I’m not alive anymore because that would be too difficult for them to accept. I hate the part of me that still wants to help even those people. I hate that I can’t just say screw you and move on. I hate that it isn’t someone’s fault that we can blame but you know what it really is our load to carry not that of others. Sometiems for me that is the hard part. When pain from a combination of things gets to the point where you feel like you need help but no one will listen because they figure ‘we’ll he had the surgery he should be fine’ or even worse is the IDIOTS calling themselves Doctors that have the understanding of an unborn child.
I’m sure the list goes on for us all. To boil it all down for me it is the same thing that I already despise in humanity. It is just amplified by the above things in my case. I expect basic human decency from anyone I associate with or consider my doctor. With CM you seem to loose the right in the eyes of others to be treated as a normal human being. When they have a bad you are supposed to bend over backwards with empathy but when you do it is just oh you having a bad day. Ok well hope it goes well and they disappear. Doctors are some of the worst at this!!! They want easy cases not something that might have a hiccup
Hi Everyone, I saw a Dr. a while ago now who actually said that my diagnoses was an accidentally finding and that I should see a physiologist. Never in my life have I felt so belittled. I get that I can live a normal life more than not but when I have my days they are not good. I am always getting fluid in my ears or infections and then when I go to the specialist they say there isn't any fluid there. My family Dr. wasn't happy about it but nothing he can do he isn't the specialist. I have a 10mm herniation and never had surgery the one Dr. I saw in Newfoundland was totally so unprofessional and honestly I wouldn't let him touch me at this point.
Hi no worries and no need to apologize....we all have BTDT and been treated that way...you defiantly need to find a true Chiari specialist. I will add the link to a thread that members added names of Drs in Canada that helped them....NOT ALL on the list may be true Chiari specialist but the list is meant to be a tool to research Drs.
Please do not rush to have surgery just because a Dr offers it...many do because they get paid when they perform surgery...but ego's do not always allow those Drs to think it out and admit they do not know the co-morbid conditions OR precautions to take during surgery. Many Drs have left patients off worse then they were before. Surgery is NOT A CURE OR FIX it is only meant as a means to slow progression and restore CSF flow...so how, HOW can a Dr offer surgery without a CINE MRI? It is possible to have symptoms without an obstruction to flow....if that is your case surgery should not be done....
Take deep breathes....slow down and educate yourself on Chiari and ALL related conditions and research Drs in your area...OR travel to get to a Dr that is well informed and EXPERIENCED with Chiari and ALL related condiitons.
- the obvious constant head, neck, and, joint pain, the daily muscle weakness, spasms, twitches and numbness, the heat explosions (because they are definitely not hot flashes - trust me, I've been through menopause), the ear, nose, and head fullness, the inability to maintain a normal body temperature, the memory, speech, balance issues
- finding out the newly discovered symptoms, that are connected to this condition, daily
- the one or two days a month when you actually feel okay and, you think "wow, everybody is right, there really is nothing wrong with me"
- the several different diagnoses' from the so-called "trained" experts
- realizing at 54 years-old that, I can't perform my work duties but, I don't qualify for LTD because, my GP made some bad decisions, when filling out my application
Sorry, if I sound like a Debby Downer LOL just wanted to put it out there!!
Getting doctors to understand my vague symptoms.
Feeling like they think I'm just an anxious mess!
One of the hardest things for me is not having the family support. Aside from my husband, who has been my rock
Hi all....I am hoping that some of you will participate in this thread....reading these threads can help those that have yet to join to see they are not alone in how they feel.