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Hi not new but not been here in a long time...


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Old 06-02-2009, 08:54 AM   #1
greyzak
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Hi not new but not been here in a long time...

Hi everyone,
First let me say I don't know if I should be posting here or on the chronic pain board, they both seem to be for chronic pain sufferers, so I am putting it here, if I am not in the right place, please feel free to move me or tell me.

I have a history that is quite long so I will just say that I have central pain syndrome from a condition called chiari I malformation and associated syringomyelia that I had brain surgery for in Dec -03 and then a shunt put in in Jan -04 when I deveoped hydrocephalus and almost died. In addition, I have chronic pain from fibromyalgia, chronic fatigue syndrome, and hashimoto's thyroiditis, and degenerative disc disease in my cervical and lumbar spine. I have several other things going on but these are the pain associated conditions.

I live in the metro Detroit area and was dx by Henry Ford Pain Mgmt Clinic who only does nerve root stim and other implantable pain pumps. They referred me to the ONLY REAL pain mgmt clinic in Mich, according to them. I have been seen at several other pain mgmt clinics and no one will take me as a patient due to the complexity of my case. So, I am stuck at the one that HF Pain Mgmt referred me to. The problem is that I have been there for 3 years and about 2 yrs ago, the director who is the main doctor there, hired a 30is yr old anesthesiology doc from an Ivy League school to work there. He is a snotty, arrogant young man who alienated a number of patients immediately. I TRIED to be as nice to him as I could, but he took a dislike to me and even went so far as to put a letter in my chart questioning whether or not I was telling the truth! He suggested I be seen by a psych! I already had a neuropsych report in my file stating that I was a "TROOPER" when it came to handling pain, and that I was for real and not malingering, as they like to call a person who fakes it to get drugs. It's so hard for me to deal with this because I have always taken the natural approach to health care until I developed these conditions and HAD to get medical help.

When I saw my chart, which by the way, I found out that the girl who let me look at it, risked her job! (The doctor/director does not allow patients to view their charts. ) I spoke to him about what the other doc put in it and he just passed it off saying that he knew I was sincere and telling the truth and not to worry about what the other doctor put in my chart. But what about other doctors who get that record? That was almost 2 years ago.

So fast forward to now: This doctor who has had a few problems there, like losing the DEA # and alienating more patients, is STILL there. He's there because my pain doc has 3 clinics he rotates between and needs someone with his philosophy to see his patients. My doc is from the NEW school of pain medicine mgmnt and treats you like he believes you and not like you are an addict. He also does physical therapy, and regularly is sought out to testify in court cases for patients. But this other doctor who is a jerk, has to see some of his patients sometimes, and I'm one of them.

Oh, this young doc also does the spine injections for pain at the clinic and one day they convinced me to let them inject my neck. I have to be VERY careful due to my condition being somewhat rare and the only doctors I can see are in NY City and they don't like anyone messing in that area unless they know what they are doing because it literally can undo the surgery. Anyway, this doc tried 3 times with x-ray guidance and could not get the needle into the space in my spinal cord. He quit trying and I went home with a huge hematoma. I NEVER complained. I only told my doc that I didn't want anymore injections in my neck. I was VERY nice and said that it wasn't the other docs fault, it was that my neck is very jacked up.

Well, ever since then, this young doc cannot be nasty enough to me. The only time he isn't is if I bring my husband, but he can't take off work all the time. This office is almost an hour away and I have to drive myself and it is difficult because I also have a sleep disorder and don't sleep well. I am usually in a lot of pain by time I get there and there have been several times I have almost fallen asleep driving.

I have a lot of problems taking meds as well. My doc has tried me on virtually everything and I have side effects. He is losing his patience with me and I think I am probably not going to be able to go to his office much longer because he isn't going to continue to treat me since he is so limited to what he can do.

So, in Jan he had to switch me to yet another drug because he found out the methadone is bad for the heart and I have heart valve issues and a viral heart infection that no one can clear up. He saw an ekg that showed the t wave abnormalities and took me off meth immediately. I told him that was the virus but he said if I have a virus in my heart, I should not be on it. He knew about the virus when he put me on it two years ago! But a new study was recently released saying that meth could injure a person's heart, so he wouldn't let me stay on it even though it worked the best of anything yet with no side effects.

So he put me on oxycontin ER and oxy IR for breakthrough. Well, oxy IR I was on already and having trouble with the sedation side effects. In Jan the arrogant doc gave me adipex with it to keep me awake. I had tried provigil and ritalin but I couldn't afford the copay on the provigil and the ritalin made my blood sugar drop very low. So, I asked about adipex because a pharmacist told me about it. The young doc didn't want to prescribe it because its a weight loss drug and he heard me say I wanted to lose weight because I AM overweight. He told me to knock it off, I'm fine, in a very disgusted manner. I wasn't even seeing him that day! And what business is it of his if I make a joke when I have to get weighed? Who doesn't when they are a bit overweight? Anyway, he's decided, I guess that I want the adipex for weight loss. So, in Jan because my husband was with me, he gave it to me. But this month, I had to see him and he refused. He gave me a refill of the oxycontin and oxycodone though, even though I told him that they make me so sleepy that I literally fell off the toilet one night and I've fallen asleep TALKING to people, STANDING at the microwave AND DRIVING. Doesn't matter, he refused to prescribe it saying I could ask my regular pain doc, his partner. Well, I already know that he will say no because he doesn't want to alienate the only doc he can find to work with him. (Other docs are very afraid of the DEA).

I'm sorry this is a long story, but I needed to give you all a history so you could get a feeling for the atmosphere I'm dealing with.

I'm afraid to stand up for myself to this doc and believe me, I would normally do so. But if they refuse to see me any longer, which I fear they are going to do, I have NO ONE to see and would have to go back to living in all this pain. As it is, WITH pain meds, my sleep is interrupted constantly. I've had a number of sleep studies due to the sleep disorder, and it comes down to pain keeps waking me up and because of the chronic pain my cortisol is elevated so the cortisol doesnt allow me to sleep. My cortisol is elevated ALL day and night. It is supposed to fall in the evening. Cortisol when elevated puts weight on your midsection, and has a determental effect on your health. I am so afraid of becoming diabetic from weight gain as it runs in my family and my sister just did. So, anyway, I have tried unsuccessfully several times to find another pain doctor but they all refuse to even see me because of the complexity of my case and the fact that my neurological problems are pretty much rare and they know nothing about them. There are only a handful of doctors in the US who know about them, a few others kind of know,but aren't experts on it and with all the other conditions I have, and ones that are just being discovered that go hand in glove with my condition, I must be seen by those in the know.

Again , so sorry for the length of this post. I am wondering if ANYONE knows of a GOOD, COMPASSIONATE, Pain Management doc in the metro Detroit area, and if so, will you please PM me and give me their name and phone number? Also, if you have any ideas for how to deal with my situation, I'm all ears. I don't like them being so far away, but they ARE good about medication managment. Its so weird. Everyone I talk to always has doctors who, in my opinion, way overprescribe narcotic meds to them, but if I go to the same doc, they tell me flat out they are afraid of me and won't treat me. They apologise profusely, but that's just the way it is.

THANK YOU ALL! especially anyone tenacious enough to read this entire book I wrote!

Greyzak

 
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Old 06-02-2009, 02:41 PM   #2
brianpain33
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Re: Hi not new but not been here in a long time...

Welcome to the pain management board. I can not imagine dealing with all of your health issues and then having to deal with the arrogant doctor on top of it. I was wondering if the doctor there ever suggested you get a pain pump since they do implants. That would probably be the best way to go since the pain pump injects the medication in the intrathecal space of your spine and you tend to have alot less side effects including less sedation. You should ask about this or possibly do a search for Medtronic pain pump.

brian

 
Old 06-03-2009, 06:49 AM   #3
greyzak
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Join Date: Nov 2004
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Re: Hi not new but not been here in a long time...

Hi Brian!
Thanks so much for your response and for taking the time to read that long story. Anyway, I was told by the hospital pain clinic that does pain pumps that I was not a good candidate for it because I have pain in a number of different places, i.e. spinal, legs, joints, feet, toes, hands, fingers, head, back, etc. I was told that pain pumps are only good when the pain is localized.

Again, thanks for your response. It's good to have others to talk to who understand what its like to live with this.

And as for that arrogant doctor! I have decided to try again to speak to his boss, my doc. I don't think it will do any good,but I am going to try.

Take care,
Greyzak

 
Old 06-03-2009, 09:22 AM   #4
feelbad
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Re: Hi not new but not been here in a long time...

i too am so sorry for what you have on your plate to have to try and deal with. i am wondering just exactly where your central pain is at? just how large of an area are we talkin here that this affects? i unfortuently have this too due to spinal cord surgery that damaged that same spinothalamic tract that just triggers central pain syndrome(do you have any problems anywhere as far as feeling the difference between hot and cold? this too can come along with the spinothalamic damage as well). the only things that have worked for this particular pain are lidocaine patches and the lido ointment for of course the numbing qualities. but i did also give lyrica a good try and it did actually hit my central and my RSD pain too. the side effects tho were a bit too much for me to deal with and i had to go off of it. i was really bummed since nothing else in pill form that i had ever tried really even touched the central like lyrica did.

have you tried just doing a search on pain clinics in your area to see what may pop up? sorry i don't live in your area so i cannot give you that info. but we are here for ya for support at least, and that IS something too. we DO understand pain and suffering here,so there you are not alone. you DO deserve appropriate and humane treatment tho, that just IS the law. Marcia
__________________
3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
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