Alone, confused and scared

Hey everybody,

I am Belle and I live in New Zealand.

I was diagnosed with Chiari in 2012 and had surgery early 2013. I suffered physical and nerve pain for 2 years prior to the diagnosis and suffered a lot of humiliation as no one believed me and I was told it was all in my head..turns out it was, just not the way they thought! Even a psychiatrist laughed at me for going to the emergency room so often.

Having gone through that, I have not much faith in the medical profession and I tend to suffer in silence. Having found this support group has given me some comfort as I can finally talk to people who know exactly where I am.

I really need some feedback as I don't even know that what I'm going through is typical of Chiari patients.

Firstly, was anyone else diagnosed with a mental illness prior to a Chiari diagnosis? I was diagnosed as Bipolar in 2004 and have been on meds for this ever since. Is there a correlation between Bipolar and Chiari?

Secondly, after surgery, my pain diminished for a while but has now got to the point where it no longer even responds to my pain meds (Dihydrocodeine). The pain keeps changing and intensifying. My pain is predominantly in the base of my neck, my lower back and completely down the left side. I don't even know if this is normal.

I would really appreciate your feedback..I am alone, confused and scared

Belle

I am sorry to hear of your Chiari journey. Sometimes it seems that we are dismissed far to often by medical professionals who simply do not understand the multitude of CHiari symptoms and do not have a knowledge base to support their patients.

I cannot speak directly to a bipolar diagnosis nor if their is a correlation with Chairi. I was diagnosed with a major depression that was some how "atypical" before Chiari malformation was discovered, upon examining those tests post surgery, Chiari explained my complaints. I may have been a touch depressed, what with people not believing me and me not understanding what was going on. With you, it might be beneficial to review symptoms/medications post-surgery (with another psychiatrist?) to see if symptoms can be seen in a new light. Talking to people who have been diagnosed, it is difficult to change a mental health diagnosis once it has been made.

I can speak better to the worsening pain. The central nervous system is complicated and like any complicated system, things can go awry. This does NOT mean that a person is responsible or some how deficient in their mental capacity AT ALL. The brain can interpret stimuli as being painful when it should not be painful. Think of if an arm that receives a light touch - one person will perceive a "light touch" whereas someone else might perceive a "sharp pain that recedes into a dull ache". Faulty wiring!

With Chiari, there is long-term stimuli from a compressed brainstem that the brain is supposed to figure out what it means. However, the human brain is not wired to make sense of this physical malformation so the central nervous system can start to make things up to try and explain it. Wonky things happen like pain in the head, thoracic spine, shoulders, hands.... You are lucky with where you live. Neuro-Orthopedic Institute is a physical therapy based research and teaching group based in Australia. I am sure that their teachings have spread to New Zealand. Check out their web-site. Lots of stuff on a new understanding of pain AND what to do about it using a graded motor imagery programme. They have books that are written for a patient to understand what is going on. I have been doing the computer-based part for neck. Lots of work but am making head way. Check it out - ask any questions and I am sure that you would be able to find someone well trained near you to help you to understand pain and learn what you can do about it

Good luck

Hey, Belle! I'm glad you found and joined us! For me, being a part of this support group has really helped. I don't feel completely alone anymore. Hope it will do the same for you.

I know how painful and stressful people, especially doctors, not believing your symptoms, is. The best way to look at it, that I have found, is this: those people judge you based on their own "normal", that they assume applies to everyone. If they make the choice to be and stay ignorant, then you should not allow them to hurt you. Don't waste your energy on them by holding on things they have said! Don't waste your time and healt on doctor who are not there to help! They are not worth it! Instead, move on! Go to different doctors. Find ones who listen and take into consideration your health problems, including Chiari. If you are going to see a new psychiatrist, print out a Chiari fact sheet. Tell them your brain has been pushing on your brainstem, creating unnatural pressures. Because of that you've had Chiari surgery. Keep in mind there is a lot we don't yet understand about brain. Look for openmindednes in your doctor!

I'm sure you will find someone who will listen and help!

Kristine

Belle, It makes me so sad that the medical profession doubted you. I just can't believe that after all these years, there are actually Doctors that don't pick up on this right away. For me, my parents took me to our General practitioner when I was a kid (40 years ago). And he ran a couple reflex and strength tests as well as eye tests. He immediately set me up for an appt with a Neurologist in neighboring town. He ordered a cat scan (MRI wasn't around then) and probably within a couple weeks I was being admitted for a shunt placement. He didn't diagnose the Arnold Chiari right away, but did diagnose the Hydrocephalus. The Arnold Chiari was diagnosed 4 years later when the shunt turned out to slowly not be enough to relieve all the symptoms anymore. But he did mention there was a more invasive procedure he would perform if the shunt didn't work. So, he may have known about the Chiari. I just let my parents handle all that stuff and didn't pay any attention. I just let them do what my parents told me they needed to do. lol

having said all that, I do understand that you spent a lot of time suffering alone in silence. I have been there. and still am. Joining this group last night and chatting with you and Jules is the first I have ever spoken about in years. We are not alone, and I just found that out today! I hope you are having a good day today and I will be praying for you.

As for the Diagnosis of Bipolar, I have never been told that, besides the pain and depression, I think everything is ok that way.

For the pain in your neck, One thing I have been doing lately is putting Bio Freeze on my neck in the area that is bothering me. Sometimes it can help for hours.

Hey dekabe,

thanks for your sharing your situation and your kind words. It sure does help to know you are not alone. My thoughts and prayers are with you too. I am actually going to my pain doctor today, so am hoping for a decent outcome. Can you tell me what Bio Freeze is..I haven't heard of it. Sounds like something I use to get my car started on a cold day! Lol. Hmmm..maybe that's what I need to get my engine running! Lol. Best Wishes, Belle

dekabe said:

Belle, It makes me so sad that the medical profession doubted you. I just can't believe that after all these years, there are actually Doctors that don't pick up on this right away. For me, my parents took me to our General practitioner when I was a kid (40 years ago). And he ran a couple reflex and strength tests as well as eye tests. He immediately set me up for an appt with a Neurologist in neighboring town. He ordered a cat scan (MRI wasn't around then) and probably within a couple weeks I was being admitted for a shunt placement. He didn't diagnose the Arnold Chiari right away, but did diagnose the Hydrocephalus. The Arnold Chiari was diagnosed 4 years later when the shunt turned out to slowly not be enough to relieve all the symptoms anymore. But he did mention there was a more invasive procedure he would perform if the shunt didn't work. So, he may have known about the Chiari. I just let my parents handle all that stuff and didn't pay any attention. I just let them do what my parents told me they needed to do. lol

having said all that, I do understand that you spent a lot of time suffering alone in silence. I have been there. and still am. Joining this group last night and chatting with you and Jules is the first I have ever spoken about in years. We are not alone, and I just found that out today! I hope you are having a good day today and I will be praying for you.

As for the Diagnosis of Bipolar, I have never been told that, besides the pain and depression, I think everything is ok that way.

For the pain in your neck, One thing I have been doing lately is putting Bio Freeze on my neck in the area that is bothering me. Sometimes it can help for hours.

Belle, Wanted to get back with you before I leave for the day. First of all I hope you have a great outcome with the pain doctor!! And wanted to let you know what Bio Freeze is. It comes in several forms but I prefer the roll on .. it is a cold therapy pain relief kind of like icy hot only better.. vanishing scent too. Thats a plus. lol Won't do much for your car, but it may help your engine!! hahaha Have a great day!!

And this is the first day in 40yrs that I have not felt like I am alone in this, so that helps me already.

Belle said:

Hey dekabe,

thanks for your sharing your situation and your kind words. It sure does help to know you are not alone. My thoughts and prayers are with you too. I am actually going to my pain doctor today, so am hoping for a decent outcome. Can you tell me what Bio Freeze is..I haven't heard of it. Sounds like something I use to get my car started on a cold day! Lol. Hmmm..maybe that's what I need to get my engine running! Lol. Best Wishes, Belle

dekabe said:

Belle, It makes me so sad that the medical profession doubted you. I just can't believe that after all these years, there are actually Doctors that don't pick up on this right away. For me, my parents took me to our General practitioner when I was a kid (40 years ago). And he ran a couple reflex and strength tests as well as eye tests. He immediately set me up for an appt with a Neurologist in neighboring town. He ordered a cat scan (MRI wasn't around then) and probably within a couple weeks I was being admitted for a shunt placement. He didn't diagnose the Arnold Chiari right away, but did diagnose the Hydrocephalus. The Arnold Chiari was diagnosed 4 years later when the shunt turned out to slowly not be enough to relieve all the symptoms anymore. But he did mention there was a more invasive procedure he would perform if the shunt didn't work. So, he may have known about the Chiari. I just let my parents handle all that stuff and didn't pay any attention. I just let them do what my parents told me they needed to do. lol

having said all that, I do understand that you spent a lot of time suffering alone in silence. I have been there. and still am. Joining this group last night and chatting with you and Jules is the first I have ever spoken about in years. We are not alone, and I just found that out today! I hope you are having a good day today and I will be praying for you.

As for the Diagnosis of Bipolar, I have never been told that, besides the pain and depression, I think everything is ok that way.

For the pain in your neck, One thing I have been doing lately is putting Bio Freeze on my neck in the area that is bothering me. Sometimes it can help for hours.