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Avatar universal

Saw some new doctors, need advice

Hello,

I have been posting off and on since I found this site about how my symptoms have returned. Well I talked to my neurosurgeon who has told me as of right now a 2nd surgery isn't necessary and sent me to a spine specialist because I have bad scoliosis and it could be causing some of my issues. So I saw the spine specialist who is a great guy. I saw him twice, he checked for syrinx up and down my spine/neck also checked me for tethered cord syndrome and evaluated my scoliosis. He also did several reflex test and on the days I saw him I was having bad days so my feet,ankles,arms, and jaw didn't respond to the reflex testing. This bothered him as well as my speech difficulties. He determined that it isn't my scoliosis and wanted me to get a 2nd opinion from a new neurologist. Because he was thinking maybe since they made a little more room in my skull due to my over sized cerebellum my brain may of jiggled a little or something when I fell thus the trauma of falling has triggered new Chiari symptoms. So he wanted me to see the neurologist for a migraine medication, and maybe talk about speech therapy if they thought it would help etc because my spine doctor was quite concerned.

Between my last appointment with the spine specialist and the new neurologist I got to attend a Missouri Chiari support group who had Diane Muller as a specialist guest. It was a great time we all shared stories, talked about our condition etc. Also met someone who symptoms had returned post surgery with no signs. From my understanding of what all was said, sometimes people can have a syrinx and it not show up on a MRI right away because it isn't quite big enough to do so thus I could have one somewhere and it isn't big enough yet to show up. Or it could just be my over sized cerebellum not working right because it is over sized because the medical community doesn't know a lot about the cerebellum and even Dr. Oro (who Diane wrote a book with) has reported cases of returned symptoms with no visible reason why.

So after the support group I was excited about seeing a new brain doctor because I learned that some migraine medication does help with the chronic pain and migraines. So I get in to see the new doctor, her and her helper do all the reflex tests, I was having a good day yesterday when  they did them so I responded better/different than I did for the spine doctor. They made me talk a lot, which is really hard for me to do. The talking was frustrating because they wanted to know my symptoms but kept interrupting me while I was telling them what all had been going on.

Then they tried to make me stand, even though I told them my muscles from the knee down in my legs aren't working quite right. They also had to double check and listen to my heart to make sure I really had a prolapse valve/irregular heart beat. So after they do all that they ask me how long I have been depressed.  I said I wasn't and then they said so how long have you been stressed out. I told them I wasn't.

The doctors left and came back and made me say the word pen 3 times and made me say the word watch 3 times. After all of that they told me well, you are physically fine, since you have had the Chiari surgery isn't bothering you anymore and it won't. You are too young to not be healthy so this isn't a physical problem it is all in your mind. Some reason your mind isn't letting your body do things. So you need to go see a neuro-psychiatrist. It takes me a minute to comprehend things sometimes. So when they left I asked my wife if I heard them right (the thick accents didn't help things) She said yes. So the doctors came back in with a prescription to what they told me was a migraine medication. They said they were done and walked out, my wife took my daughter (19mo) to the bathroom because we are potty training her. I waited next to the desk and heard the doctor I saw talking to a nurse about me how the neuro-psychiatrist I am seeing specializes in depression and dementia. Then they noticed I was sitting next to desk in my wheel chair and told me to go back into the room, I wasn't authorized to hear what they were saying.

So my wife and I finally got out of the office and talked all the way home about how the doctors were rude and how we are pretty sure this isn't all in my head. I am a Southern Baptist Minister trained in counseling and would know if I was depressed or not. When we finally got home ( we live 2 hours away from doctors) we looked up the migraine medicine they gave me and it turned out to be an anti-depressant used for people that have suicidal thoughts and such. We did read how in Europe it is approved to treat chronic migraines and that some doctors use it in the states for migraines but there other medications that can be used instead. We also found out it interacts with my heart medication and other medications like my heart medication and also interacts with my muscle relaxer my primary care provider prescribed me for my full body muscle spasms I started having again (had them pre-surgery went away post surgery till recently) The medicine is Amitryptiline, which I have read on here that people do use it for migraines, but I don't want to risk it if it has a reaction to heart rhythm regulators etc.

I really don't know what to do from this point on. We called the patient rights division of the place I saw the neurologist at. They are sending me forms to fill out and send back about how I was treated and to rebuke anything they put in my medical record. I met a woman at the conference who was told things were in her head and then other doctors didn't take her seriously because it was in her medical record that she was physically fine and everything is in her head. Hope you guys have some good advice.

God Bless,

Dustin


6 Responses
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Avatar universal
Nice to hear from you again cmoeller, I couldn't believe how they treated me either because the spinal specialist that saw me who checked for tethered cord and for any syrinx knew something was wrong and was quite freaked out about it. He was freaked out because I was having what I call a low sensation day each time I saw him and my feet, ankles, arms, and jaw had no reflex reaction. So he wanted me to see the neurologist for a migraine medication and see if speech therapy would help my speech some. He also wanted them to review all previous material that maybe the other doctors missed something. They really didn't do anything my spinal doctor wanted them too.

The whole medication problem is what really frustrated me I am still waiting on the forms in the mail to send back. They acted like I was faking everything almost. Like when I told them I had the mito-valve prolapse (spelling?) they had to listen to my heart just to make sure I knew what I was talking about. I guess since my speech is screwed up they thought I was mentally handicapped because they asked me what my highest grade level in school was. They said it in such a way they didn't think I graduated high school. (I have a BA degree in Christian Education)

Anyways back to the meds they had a medicine list because they told me to stop taking my muscle relaxer that prevents me from having full body muscle spasms. Which after talking to others with Chiari the muscle spasms are pretty much because the brain is telling all the muscles to go off at once. So with the relaxer I just have full body twitches not full blown seizure look a like spasms. I would rather try something besides amitryptiline first, and then if nothing else worked then try that.

Well I  gotta go,
God Bless,

Dustin

Helpful - 0
1179332 tn?1297478990
TOTALLY UNBELIEVABLE!! I can't believe that you were put through something like that...especially after already being dx'd with a neurological condition!! That is completely unacceptable and I urge you to fill out those forms.

I don't know what planet these dr's are on if they think that we want to be like this!!! Don't let this stop you from figuring out what is going wrong, you need to tune those dr's and find someone different.

I too, have been suggested to start amitryptiline...the suggestion was made by a Dr who is extremely supportive of my issues..so it is a fairly common med prescribed to help you sleep and sometimes it helps nerve pain. What is not acceptable though is that it could contradict with your heart meds!! I can't believe they would give you something w/o checking it out first.

I would write these drs completely off and DON'T let it get to you!!

I'm so sorry you had to experience that..
Carolyn
Helpful - 0
1388357 tn?1280189493
Dustin,
Ah, right.  Yes, that would be not just unprofessional, but I would say quite reckless, too.  I wish you luck.
Lisa
Helpful - 0
Avatar universal
I know that they do sometimes use it for migraines in lower doses than they use it for depression but, the fact still remains that it does not work well with my heart medicine and other medication I am on...I just found it so unprofessional of them doing that.

Dustin
Helpful - 0
1388357 tn?1280189493
It's sad to hear when people are treated so unprofessionally by the people who are supposed to help us!  I have to tell you, when I started having migraines at about 40 yrs old, the neurologist put me on Amitryptiline as a prophylactic measure for the headaches.  They do use it in higher doses for depression.  My old neurologist never tried to suggest I was depressed.  He just gave me the prescription starting at 10mg and, eventually upped it to 30.  In case it helps to take the sting out of your visit a little bit - I thought you might want to know that they really do prescribe it at lower doses for headaches.  (I have other friends who have had the same prescription over the years also).
Good luck!
Helpful - 0
999891 tn?1407276076
I spent from 2005 until 2008 being told it was all in my head. 3 years being messed about while my life fell apart around me. I had to stop working, driving & at times I could not leave the house, I was hospitalized twice after suffering drop attacks, it was all put down to Anxiety first, then Menears Disease, then Benign positional vertigo . Eventually it was decided to do an MRI witch showed up my problems.
We need to fight our corner if we feel we are not getting the care we need. Something is causing your problems, you may need to get another opinion.

Ray
Helpful - 0
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