Chiari Online Support Group

Terrible doctors appointment


#1

Hello!

Today was my first neurologists appointment after 7 years. I was afraid of the doctor not believing in my symptoms, saying it's depression, but what actually happened shocked me so bad, I was left speachless and couldn't stop crying for 2 hours.

So I went in the consulting room, gave her my 8 years old MRI that clearly shows Chiari Malformation, some papers, and while she viewed them, I started teling about my symptoms, trying to explain what are they like(how sevire, how long they last in different situations, if they ever stop), but she interrupted me after a minute or two. I managed to tell that I don't have the headache type I used to have, and that I'm feeling so bad, I haven't worked for 2 months. I remember ~30% of what happened in the visit, because I was so shocked and upset. So she aksed some questions(symptom unrelated). She asked what do I do for living, to what I replied- I play(or used to) online poker. That was it. She had all the answers she needed. Started asking about my finances, and to my answers she had some sarcastical comments, like" I didn't know you could make money by sitting at computer" or something, half of that saying in russian. We live in Latvia and our national language is latvian. Then she said: "You probably have depression because you are looseing money". How the f*** do you know that?! Have you sat beside me and witnessed that? Never mind the fact I have lived with this for 8 years.

How can a person be a doctor by having absolutely no interest in their patients symptoms, and then jumping to such conclusions?

I was crying so bad, I couldn't speak. Then she said she can put me in the hospital for 3 days for obserations. After 2 weeks! "I will call the director and ask for immidiate mri" she said. 2 weeks. and not a word about what can I do until then. Then she gave me my papers back, got up from her chair and wnent to call in the next patient, while showing me out. WTF? I genuinely ask WTF?

I'm going back to the hospital tomorrow to see my family doctor(I don't know what they are called in the US), I'll tell about this, and I'll also write a complaint about my todays most unpleasant experience.

Oh, and I forgot to mention- the neurologist I saw, she is the chief neurologist in the department.

I could never trust that kind of person to be my doctor. So I'll find someone else. I don't think anyone could top this in terms of bad.

Sorry for the cursing. I just ... I can't.

I know I'll find someone better, who will help me. Thanks for reading. Have a nice day!

P.S. One suggestion- if you're seeing a doctor for the first time, take someone with you!


#2

Fugu, I'm sorry that your appointment didn't go as well as you had hoped. That is good advice you give about taking someone with you to appointments ... at the very least it's a second pair of ears and eyes to help take in all the detail of a consultation. I hope your family doctor can help iron this out for you.


#3

Thanks!


#4

Hi Fugu, I’m Kelly and new to this support group. I know this is an older post, but just wanted to say that I love poker. I use to play it a lot. I’m not able to focus very well, so I don’t play anymore either. I hope you are having a good day!


#5

Hi, Kelly! :) I really didn't expect to hear from another poker player! I haven't played for ~6 months, and at this point don't think I'll get back to it because of how much work you have to put in it.

Thanks for reaching out! Hope you too are having a nice day.


#6

I haven’t posted an introduction yet, but I have been reading a lot of posts. I have been living with chiari for a long time . It took a long time to get a diagnosis, but in 2011 I had decompression surgery. I have never really gotten better even after surgery. I was sent from doctor to doctor with no answers. I kept getting told chiari was not the cause of all of my symptoms. I just kinda gave up trying to find answers. I didn’t even bother looking online. So about three weeks ago a new friend I met asked me about it, it got me thinking so I decided to Google it. That’s when I found out there were support groups. Reading all these stories was amazing to me. I finally found people that are going through the same thing. I have read a lot of your posts this one caught my eye because of the poker. We used to have a group of friends that would get together and play Texas holdem, of course we played for money. I would play online but not for money just for fun. Thanks for replying back I’m so excited to have chiari friends to talk to.


#7

First of all, crying for 2 hours is a major no-no. We can't afford yelling, and crying a lot... because price of triggering symptoms is oh, so high. Chiari is not well medically understood YET. It seems like they understood it better 10 years ago when Surgery was advised to about everyone with Chiari and than they realized that what they know doesn't explain all what happens after surgery... If you google this condition many websites will tell you NOT WELL MEDICALLY UNDERSTOOD. So, Drs can't get understanding of Chiari from Neurology course of medical school, it only comes with experience of working with a lot of Chiari patients. Thus said, you have to keep your expectations low when you go to neurologist that probably has never seen another Chiari patient. Our best bet is Drs who worked with Chiari patients before. If 10 plus people tell them same thing...they won't treat you as a joke. I never had a chance to go to Chiari centers that have neurologists trained in our condition but I did speak to neurosurgeon that consults Chiari patients daily. And that neurosurgeon was ONLY who could understand me and believe in my symptoms. Neurologist I am seeing regularly is doing what he is good at, treating my migraines (topomax + sumatriptan). If I do have scary new symptoms I know he will send me to get more MRIs.

I am not mad when people with no experience with Chiari don't understand what I am going through, it is really hard to believe the pain and all that is happening myself, how can I expect somebody to believe.

Just walk away from those Drs and people who are harsh on you. And no crying, slam the door if it makes you feel better, cursing helps too:). Even if you can't find Dr with Chiari experience you can find one who listen and has valid interest to explore and research your condition.


#8

Thanks, Ada! :)

A lot of time has passed since that appointment. I've seen psychiatrist, who couldn't understand what's going on with me, because antidepressants didn't help. At the end she thought the cause isn't psychological. Then I've seen another neuro, who did a bunch of tests, didn't explain anything and told me to go wherever the radiologist suggests in the MRI report. That sounded werid, because I hadn't heard of radiologists giving suggestions. As far as I knew, they only gave the reports. Now I'm going to see a NS. I live in Latvia where there are less than 2 million inhabitants, so I don't think I'll ever find a Chiari specialist. But I knoe of 3 doctors who are fimiliar with Chiari and I'll be seeing the best one. My hopes are that, if he doesn't think I should have surgery, he would say that at least part of the symptoms are Chiari related and he would be able to refer me to a neuro who knows something about it.


#9

Believe me I understand your situation more than you can imagine because I was not born and did not live all my life in US. I know Institute of Human Brain in Saint Petersburg in Russia has neurosurgeons that specialize in Chiari.http://www.encspb.ru/object/2804010862?lc=en

They did have this experience even 11 years ago, seeing Chiari patients and successfully performing decompression surgeries. I know going to Russia could be a hard thing to imagine and accomplish for you but if one day you absolutely have to have surgery you want it done somewhere where surgeons are experienced with that type of surgeries. There are quite a few of sad stories of death or becoming permanently disabled if surgery is performed by surgeon who is new to it. So, think of it like a back up plan. One thing you can try is to mail your MRIs to them and ask for a review. Try to contact them somehow OR have that heartless Russian speaking Dr do that and ask what can you do in your situation. Believe me with condition like that, that somewhat rare, they will understand. Ruble collapsed, Russia is not very expensive country to go too...comparing, say to Erope.

You do not need physchitsrist, but apparently you got good one because she figured that your issue is not psychiatry related. If you have headaches some of them could be migraines triggered by Chiari, and depressions are sort of given with that. Every time I have low mood I know migraine is rolling in. It is crazily complex cycle. It took me years and years to figure all that. And back in the days when migraines were weaker I had low moods too but I did not associate it with headaches. Now, when migraines hit me like locomotive train things make sense, as well as there is no cure. Migraine treatment somewhat helps and if I develop syringomelia I will get surgery. I found NS I like...I am set. When you think you are depressed, just breathe through it, read a book, get into some activity that keeps you occupied. Before you know it will go away. What other symptoms do you have?

All the best, also feel free to message me personally

Fugu said:

Thanks, Ada! :)

A lot of time has passed since that appointment. I've seen psychiatrist, who couldn't understand what's going on with me, because antidepressants didn't help. At the end she thought the cause isn't psychological. Then I've seen another neuro, who did a bunch of tests, didn't explain anything and told me to go wherever the radiologist suggests in the MRI report. That sounded werid, because I hadn't heard of radiologists giving suggestions. As far as I knew, they only gave the reports. Now I'm going to see a NS. I live in Latvia where there are less than 2 million inhabitants, so I don't think I'll ever find a Chiari specialist. But I knoe of 3 doctors who are fimiliar with Chiari and I'll be seeing the best one. My hopes are that, if he doesn't think I should have surgery, he would say that at least part of the symptoms are Chiari related and he would be able to refer me to a neuro who knows something about it.


#10

Thanks for your suggestions! :) I appretiate your help.

I don't see myself going to Russia.

The doctor I'm going to see, Dr.med.habil. Igors Aksiks, is a very experienced neurosurgeon, one of the best in Latvia, and along with other things, he has a short video of himself preforming Chiari decompression on his website.

I'm thinking of seeing another doctor, dr. med. Henrijs Ozoliņš, who works from a hospital where there are 3 doctors, including him, in the neurosurgery department, who work with Chiari cases. This doctor has published an article "Chiari I Malformation: the Development of Operative Criteria and Optimal Surgical Treatment " with 3 other doctors in Latvian Journal of Surgery in 2008.


#11

I forgot to tell you about my symptoms. Here's what they are now.

Extreme fatigue- it's like when I had the flu, with temperature above 38° celsius. It's been like that at least since July 31 2015. I haven't worked or cleaned my home since. It was really warm on Tuesday, so I went out for a walk. I walked for around 40 min total with sitting in between. Yesterday I washed some dishes, cleaned the toilet bowl and a few cabinet doors, then took a shower and that was it. The amount of energy I spent in those 2 days was so much for me, I couldn't even boil pasta later. Today I'm still feeling like moving only when it's absolutely necesary.

Muscle stiffnes and weakness- some days my muscles are so weak, I can barely wash my hair in the shower. I get the kind of pain that you get when working out.

Balance problems and dizziness- I can't move around much. Walking outside is much easier than doing something indoors, because, turning impacts my balance. I usually holo on walls when making turns at home.

Pressure inside head, pulsating sensation. Gets worse in evenings. I feel very part of my body, that is pressed to something, pulsating, like legs when crossed, butt cheeks when sitting. This makes sleeping difficult, because I can't place leg over leg or arm over arm. If they touch, the pulsating is too distracting and I often wake up with completely numb hand. I can't sleep on my back, because it's too difficult to breathe and it causes the back of my head to pusate and then I get headache. I used to sleep on my side in a position that I was tought to place uncocious person so that they don't choke, but I can't no more, because that also makes breathing too difficult.

My head is very sensitive. It's hard to take a 30-40 min buss ride to the hospital. All the bouncing even on good roads hurt my head so much, my senses get weak. The best I can describe it, is like being on a sedative, when mind is barely there and body isn't supposed to be moving. I used to wear heels, but it was too much for the head, so I swiched to comfortable shoes with thick soles.

Needless to say, I can't focus. haha

Idon't have migranes, my pain levels aren't high. I mostly have short bursts of sharp stabbing pain in muscles or bones(maybe those are nerve pain, I don't know) and cramp like feeling muscle pain. But it's not that bad.


#12


I am happy you found some Drs that have experience with Chiari, that's the way to go. Of course, if you have experienced neurosurgeons with Chiari surgeries close to you, there is no need to travel anywhere. And neurologists are not much help with Chiari, I never yet one neurologist in So California, not even in medical centers like UC Irvine Neurosciences that would care to sort my Chiari symptoms out.

Many of your symptoms sound like mine and some of them could be brought by migraine. Migraine is not only one sided headache. It can come from the back of the head, all over etc, Pressure in the head, getting sick while on the ride, brain fog....it can be totally migraine. And after surgeries, headaches as migraines still persist...you can read it even on this forum. And in US our neurosurgeons tell us already "SURGERY would not help with all your headaches". I was very naive about what migraine is, I thought all my symptoms are Chiari and only surgery can help. In 11 years of fighting pain without any medication thought I have migraines never crossed my mind. Then it progressed from occasional (2-3 days a week) to 29 days a month thing, vertigo, nausea worth than pregnancy morning sickness and one day side of my head was burning like it was on fire and only then I thought MAY BE I have migraines. Soon I had problem with my eye and ended up in hospital, neurologist successfully treated enormous headache attach as migraine and I was on migraine medication ever since. I know different countries and Drs might have different protocol for migraine prevention treatment in US it is topomax. My nausea is gone and headaches are under control at least most of them. I wish I could know years ago most of my headaches are TREATABLE. Many, many patients with Chiari have migraines. You can see it even on this forum, there have to be connection and one research showed that migraines are more stubborn and tougher in Chiari people than in people without it. But while we blame all our symptoms on Chiari, different issues can go untreated. God, not even my mom suggested I could be having migraines....So, please, be open to possibility and discuss it with neurologist. She can prescribe you Sumatriptan (medication designed to abort migraine attacks) and if helps you with pressure in the head, you can be sure it is migraine. If you are sensitive to rain and get sicker on the seaside, it is likely a migraine....Also, it can be mild pain or pressure and brain fog you describe or feeling tired... it is not what they show in the movies...climb the wall, one side of the head kind, even though that happens too. There are different kinds of migraine. When I asked my Dr about memory and concentration, he said migraine can do that too.

You probably thinking now, "no, it is not me". I was same way when Dr, after Dr told me about migraine being part of my issues. But almost 2 years into migraine treatment (topomax daily), I finally start getting quality of life, I feel MUCH better, more energy, no nausea and if I get attacks (1-2 times a week) I take sumatriptan and I can get back to normal life within an hour. I only wish I started treating migraines early before permanent damage was done...If I stop taking daily meds, hell is back. I was travelling and forgot my pills, and there it was all back, fog, nausea and never ending headache. Just look into it...migraine is not any nicer condition than Chiari, horrible, horrible symptoms and it is also poorly understood BUT at least there is some sort of treatment. Everyone is different and for some surgery is a relief, sometimes it is a surgery and migraines treatment. Sometimes with just migraine treatment it gets better. Hope you will find best way for you.

Feel better soon,


Fugu said:

I forgot to tell you about my symptoms. Here's what they are now.

Extreme fatigue- it's like when I had the flu, with temperature above 38° celsius. It's been like that at least since July 31 2015. I haven't worked or cleaned my home since. It was really warm on Tuesday, so I went out for a walk. I walked for around 40 min total with sitting in between. Yesterday I washed some dishes, cleaned the toilet bowl and a few cabinet doors, then took a shower and that was it. The amount of energy I spent in those 2 days was so much for me, I couldn't even boil pasta later. Today I'm still feeling like moving only when it's absolutely necesary.

Muscle stiffnes and weakness- some days my muscles are so weak, I can barely wash my hair in the shower. I get the kind of pain that you get when working out.

Balance problems and dizziness- I can't move around much. Walking outside is much easier than doing something indoors, because, turning impacts my balance. I usually holo on walls when making turns at home.

Pressure inside head, pulsating sensation. Gets worse in evenings. I feel very part of my body, that is pressed to something, pulsating, like legs when crossed, butt cheeks when sitting. This makes sleeping difficult, because I can't place leg over leg or arm over arm. If they touch, the pulsating is too distracting and I often wake up with completely numb hand. I can't sleep on my back, because it's too difficult to breathe and it causes the back of my head to pusate and then I get headache. I used to sleep on my side in a position that I was tought to place uncocious person so that they don't choke, but I can't no more, because that also makes breathing too difficult.

My head is very sensitive. It's hard to take a 30-40 min buss ride to the hospital. All the bouncing even on good roads hurt my head so much, my senses get weak. The best I can describe it, is like being on a sedative, when mind is barely there and body isn't supposed to be moving. I used to wear heels, but it was too much for the head, so I swiched to comfortable shoes with thick soles.

Needless to say, I can't focus. haha

Idon't have migranes, my pain levels aren't high. I mostly have short bursts of sharp stabbing pain in muscles or bones(maybe those are nerve pain, I don't know) and cramp like feeling muscle pain. But it's not that bad.


#13

Thanks for sharing your experience! As you already guessed, I don't think I have migranes. haha I used to have terrible headache and meds didn't help, when I was in highschool. I had those headache every day non stop. I thought I had it for around half a year, but my mom said, I had them for years. Maybe the half year period I remember, was the worst and most intense. I don't have those headaches anymore. A year ago, when I was working, I used to get headaches, they would stay for a week, the usual headache medication helped. I haven't had those headaches either for more than 8 months. Sometimes an ocasional headache, but nothing bad. I've been living with many symptoms for many years, and I don't know anymore what is normal. I know I don't even view some pain forms as pain, I view them as "a normal state". When the neuro sent me to MRI, she wrote a bunch of headaches in the form, I was confused about that, because headace wasn't my concern when I told her my symptoms.


#14

After reading this post it made me realize I'm not the only one frustrated with incompetent Doctors whom know so little about Chiari. Let me share my experience.

This morning I woke up kind of nervous only because I have been from one Orthopedic to another and after today's visit I want nothing to do with orthopedic Drs. anymore. I have been suffering from major pain on both arms. I have been to the ER an number of times and each time it was diagnosed as Epicondilitis better known as Tennis Elbow. I have seen my PCP and she referred me to therapy. The physical therapist after a month of therapy decided that I should be almost done with therapy as I should be almost fully recovered. When evaluation day came and made him aware that the therapy was only making my pain worse he basically called me a liar. He said that it was impossible that I have had no progress whatsoever. I left crying from that physical therapy center straight to my PCP demanded to speak to the Dr. As I was waiting the PT called the Drs. office yet had no idea I was present. The front office medical assistant placed the call on speaker phone so the Dr. could speak to him. Well he basically explained to my primary that I was lying about my pain in my arms. That I needed to be seen for a psychiatric evaluation cause I was making up my pain. I left crying that day. I stopped all medical treatment for two months and just locked myself in my room wanting nothing to do with the world. I seriously was starting to think I was crazy. Well after two months I had to go back and get medical care cause the pain was intolerable. My primary referred me out to an Orthopedic. Well I had hope because I explained what happened at the Physical Therapy and he basically verified that the only thing the PT was doing was making the pain worse and not helping at all. He explained he was going to create a care plan for treatment. Well they ordered me braces, after two weeks they arrived. I got a cortisone shot on my left elbow and let me just say that it was one of the most painful injections I've had. For five days straight my armed burned. The week after I had to go for evaluation and I explained what i had experienced the Dr. said well I'm just going to send you to pain management as that is the only option left as you are not a candidate for surgery. So in other words he gave up on me. I go to pain management and let me just say that this is one of the most caring Drs. I've had. This Dr. has been spot on in everything, he has little knowledge of Chiari but has been researching it as he wants to be able to help me. He is the one that sent me to get the MRI in which the Chiari showed up in. I explained my experience with ortho and pt and he said he was going to send me to a different orthopedic for a second evaluation. Well today I went to that second Ortho evaluation. While this entire time several Physicians and another Orthopedic had diagnosed me with epicondilitis this today told me that he didn't know what to treat as I have tried everything and nothing has worked. That he wasn't even sure if it was epicondilitis since I had pain everywhere and he wasn't even sure I was telling the truth. That I should just give it time to go away on it's own. So in other words I was back to square one. However, I didn't stay quiet I did tell him how I felt. I said to him you are aware that I have Chiari Malformation right? He said yes it's noted on your file. I asked do you know what that is? He said I've heard of it but not familiar with it. So then I said, you do know that Chiari affects you in so many areas of your body and that includes your arms. I makes your entire body ache, burn, weakness, tingling, and every sensation possible. He said no I didn't. Then I proceeded to say, we are living in a world full of technology that is filled with information. Thank you for making me realize that many Drs. are incapable of researching a patients illness prior to care and instead proceed by taking the easy way out and telling them that they are crazy because they are in pain. Yet, don't worry you will receive payment from my insurance company because unlike you I care even when this was a waste of my time. He got up mad and walked out.

I may have said the wrong thing but I'm tired of Drs. walking out on me or calling me crazy when I know I'm in pain. I'm tired already. I'm tired of rejection. I'm tired of people being so dismissive when it comes to other peoples pain. I will not leave this alone I will stand up for what is right. In my opinion this is medical mal-practice as he refused to go more in depth as to what the problem really is. I hope I'm not the only one feeling this way anymore. Sorry but I seriously needed to vent.


#15

Unfortunatley, most of the time we need to fight through all this crap until we eventually find someone who genuenly tries to help.

I have two suggestions for you and anyone else in similar situation:

1) Stick to those dr's who listen, and even research your illnesses even when it is out of their field of speciality. Share their names in doctors recommendations.

2) If many dr's tend to take the easy way out and tell you: "You are lying, you are not in pain," the best way to fight this, is go to a psychiatrist and get their evaluation. When you have a psychiatrists statement that you are not making it up, they will have no other choice than to believe you. If they don't know how to help, move on and you will eventually find someone. This will save you some time in the long run.

I did that after the visit in this post. Now they just have to look deeper.