Ready to give up hope

It took me forever to find a surgeon. I may have found one, & now my pain doc has been dropped from my insurance. I went to a neurologist, reluctantly, as this was the group who botched my diagnosis 10 years ago. After waiting 2 hours, all i got was this guy pushing valium on me & telling me how "very bad" my MRI pics are. When i tried to fill my pain meds Friday (before labor day) I found out there is a shortage & no pharmacies have it. Called the office & was told they would call back, but went there because it was getting late & knew they would be out till Tuesday. The woman at desk kept telling me the doctor was in other office & checks his messages at end of day. I told her how unbearable my pain is & I needed help before Tuesday. I was treated like garbage, like an addict, despite the fact that I wouldnt even take the extra drugs the doctor tried to push on me! When I picked up my phone to try to call the other office I was yelled at & told to leave, I went to my family doctor & she wasnt there, & no matter how many times I explained the situation, they also assumed I was a drug seeker, kept telling me they are not giving me more meds than I had on the script, even though I kept explaining I didnt want MORE, I wanted something in stock, or LESS dose, because was told it was available. I have never felt so low in my life. Chiari has already killed me. My life is gone. My husband left me, I can hardly work anymore, & when i'm home, I'm so tired & in pain, the mess in my house is piling up. My pain has gotten so bad, I wake up screaming & crying, & found myself crying at work. I can't deal with having yet again to fing a new pain doc or neuro who takes my insurance & can see me in any reasonable amount of time. I have been through this so many times. I will never go back to that office. It already bothers me that i depend on pills to survive a day without wanting to kill myself from the pain, but to be humiliated at the office of a doctor who told me how bad my situation is, is something I will not go through again. I have tried to be strong, but chiari wins. I can no longer find a reason to push myself forward anymore. I'm so tired of the pain. I'm so tired of being alone. I'm so tired of being treated like garbage bt the doctors I turned to for care. I'm so tired of watching the world go by while I'm left behind. The only thing I have to look forward to is noy being able to take care of myself after surgery & not being able to pay my bills or afford to live. This is the only place I have anymore for someone to "listen", & its a website. This is all I have

I called a crisis hotline last nite & they just kept saying wow, it sounds like you are in so much pain. that didnt help. I figure if a doctor who has seen me & told me how bad my condition is made me feel like a drug addict (well, his office did), the ER is probably worse since they dont know me, plus ive heard stories here that thier surgery was done as emergency, & you get whatever surgeon is on call, & I dont want that either. I want so bad to run away from my body. I have tried to be strong, but this has broke me. im so tired

Mandy said:

Jessica,

I am so, so sorry.

I wish things weren't so hard for you, and I wish you weren't in pain.

It's horrible, and unfair, and lonely having Chiari. It takes incredibly tough people to deal with this, and knowing what you've gone through to this point, I know you are an amazingly tough person, and that today was an unimaginably bad day. Please know we are here for you, and this is a safe place to vent. If this is more than that, please know there are people out there to talk to. The suicide prevention hotline is 1-800-273-TALK.

The ER should have the capability to prescribe you the available pain medication, so if it gets too bad, I hope you get help there.

Your doctor's office and the pharmacy both have failed you, and for that I am so sorry.

Please let us know how you are doing, keeping you in my thoughts and prayers.

Mandy

thanx. i dont have the money to see a professional, & my insurance is the worst. its also a big problem with finding doctors. thats why its taken so long to even find a surgeon. I am up again in horrible pain, waiting for meds to kick in. Need to keep working for as long as i can because I will not survive on disability alone. I am just worn out. Feel like I cant live like this anymore. It is taking everything I have to want to get out of bed & live like this



Abby said:

Jessica,

I am so sorry your dealing with this. Chiari does take it's toll on us. Your not alone with this, so please know we love and care for you. Chiari is not a easy thing to deal with and our doctors sometimes fail us in getting treatments that we need.

Ask for your records, cd's, tests, everything. We have folks who live in your area who will give you some really good recommendations on doctors. Tracy and Beeba live up your way. Ask either of them and ask any of us moderators anything. We are here for you and will help you in any way we can possible.

Your GP should be able to help you with some medication for feeling like your feeling now. Most of us chiarians suffer with anxiety and depression. We take medications that make us feel much better and makes chiari a little easier to cope with. Some of the anti seizure medicines they have us on makes us feel worse too.

Talking this out with a trusted pastor or professional will help you too. You should not be having those feelings. Jessica none of this is your fault. Chiari hurts more than physical it also hurts mental too. When your nervous system is compromised for so long, it causes us a lot of unpleasantness.

I will be praying for you and hope things turn around for you and you get the treatment you deserve. Your a wonderful friend and we care a lot for you.

Prayers and hugs,

Abby

thank you for talking to me. it really is all i have

Jessica,

As I read your post I started to cry because I, like so many here, can sympathize with what you are going through. It is so aggravating that we can't get help with such a debilitating disease.

I have also found that a doctor doesn't always know or condone what his office staff is doing, I would ask to see the doctor again and let him know what happened and who spoke to you like that and you don't appreciate being talked to or treated like a drug seeker and how humiliating it was!

I'm sorry that you are having to go through all of this and just know that we are here for you!! Let us know how things are going. I'm keeping you in my thoughts and prayers!

SparkyID7

JESSICA,

I have spoke your words and felt your pain many times. Everyone here understands. I am sure it doesn't make your pain better but we do. Please know we are all here for you & sorry you are going through such a horrible situation.

Please let us know how you are doing & know we are praying for you !!!

Tracy

Jessica,

This may be one of those times in life when you are required to have a little blind faith. You know what you want and need but your not sure how you’re going to get there…it will happen for you. Keep going girl.

Lots of love
Jenn

This is so bad I feel for you,Going through the ER might the best route to go,Beeba sounds like she is so right in what she is saying.I can’t tell you much about how to get through the system but I can sympathize with you,I do understand where you are at this point.My journey has been long and hard,you sound as if you’ve been treated like dirt and you’re worth so much to us here,if only there something we could do for you,wish I could hug you but the thing I can do is pray.This is not what we deserve as human beings if we could march on the hospital side walks or ban together when someone has to be treated like you and so many more of us have been treated the same.You keep pushing for treatment for this condition,just remember every time we get the attention of some of theses idiots maybe that will help someone else.I went to revisit my neurologist I had seen before who had refused to send me to a specialist that was so near my house.When I went back I told him that I wanted to follow up on my progress after I had found the specialist that correctly diagnosed and operated on my chiari,he was a little ticked he did not want me to come back and tell him he was wrong. I intend to send more of my records to his office after my next visit with the specialist next week and my reg. med. Dr. will also get all my records on what’s going on too,they don’t get it but I am trying to be unforgettable when I see my Dr.s I will talk about the diagnosis that has taken 27yrs. of my life,and try to be someone who tells them that most patients do not pretend to be sick,so many Dr.s want us to take the blame for what they don’t know and will not learn from those NSs who do know.You are in my thoughts and prayers.



Lynn

Jessica,

It is amazing that becuase less tahn 30% of the people that get prescribed pain meds abuse them we have to suffer. It makes me want to scream or get a voo doo doll of every doctor or therapist that tried to shame me and fill that sucked up with pins. Maybe run it over in my car too! No other condition do doctors routinely under medicate or deny medication. Can you imagine a diabetic being treated that way?

We have all unfortunately been in your shoes at one time or another and some of us are there now. I know what tremendous courage it takes to reach out to people and even more just to get through the day sometimes. Please dont give up. Please keep fighting. You have inspired me today I often suffer in silence and feel like my situation is hopeless and I want to give up every other day.

You deserve to be helped. You deserve to be listened to. You deserve to have your pain and symptoms managed. There are doctors out there that will help you. It may take going to a few to find another one. You are not a hypercondriac or a drug seeker. You are a very strong woman in pain. I would absolutely take everyones advice and go to the ER. Once you are in this much pain it takes alot to break the pain cycle. They cannot and will not operate without your consent and imput. There is a great wealth of information from other members in your area. They can help you find another doctor. Maybe your current doctor will work with you and help with your insurence if you talk to him?

We are all her for you. Sending you prayers and {{{{HUGS}}} Wendy

Wendy, THANK YOU!!! thank you. You understand! you have no idea how much that means to me that you took the time to tell me so.I can't believe how that experience has made me hit rock bottom. It has triggered such bad anxiety & I cant shake it. I'm sure I would go to the ER if the pain was that bad & had no medication or it wasn't working, but it merely was a problem with getting the script filled, & before a long weekend. I resisted pain meds with every ounce in my soul!! My doctors know this!! I wouldnt even take the lyrica for the 1st month. My pain has gotten so bad so fast, I still cant believe this is my reality. I know I have to be persistent with looking for doctors, I have given that exact advise to others many times. I just had such a hard time going through yet another doc change, it feels like I have gotten nowhere. I have had a very hard time accepting that i depend on narcotics to get through the day. & it started out with 1/2 a pill at night, to a steady amount through the day, or the pain is just horrific, yet still I don't come close to the maximum daily allowance, & the treatment I got from the staff at the offices just pushed me off the ledge. I wish I could put into words what this group means to me, because I'm not to sure I had the stregnth to survive the last 2 days without you guys. Please understand how grateful I am that you took the time for me

wendy said:

Jessica,

It is amazing that becuase less tahn 30% of the people that get prescribed pain meds abuse them we have to suffer. It makes me want to scream or get a voo doo doll of every doctor or therapist that tried to shame me and fill that sucked up with pins. Maybe run it over in my car too! No other condition do doctors routinely under medicate or deny medication. Can you imagine a diabetic being treated that way?

We have all unfortunately been in your shoes at one time or another and some of us are there now. I know what tremendous courage it takes to reach out to people and even more just to get through the day sometimes. Please dont give up. Please keep fighting. You have inspired me today I often suffer in silence and feel like my situation is hopeless and I want to give up every other day.

You deserve to be helped. You deserve to be listened to. You deserve to have your pain and symptoms managed. There are doctors out there that will help you. It may take going to a few to find another one. You are not a hypercondriac or a drug seeker. You are a very strong woman in pain. I would absolutely take everyones advice and go to the ER. Once you are in this much pain it takes alot to break the pain cycle. They cannot and will not operate without your consent and imput. There is a great wealth of information from other members in your area. They can help you find another doctor. Maybe your current doctor will work with you and help with your insurence if you talk to him?

We are all her for you. Sending you prayers and {{{{HUGS}}} Wendy

You are absolutely right, Lynn, & I am so very grateful for you & people like you, & I will never forget to help others like you have helped me by reaching out when I needed it so very much. Thank you with all my heart!

Lynn Messer said:

This is so bad I feel for you,Going through the ER might the best route to go,Beeba sounds like she is so right in what she is saying.I can't tell you much about how to get through the system but I can sympathize with you,I do understand where you are at this point.My journey has been long and hard,you sound as if you've been treated like dirt and you're worth so much to us here,if only there something we could do for you,wish I could hug you but the thing I can do is pray.This is not what we deserve as human beings if we could march on the hospital side walks or ban together when someone has to be treated like you and so many more of us have been treated the same.You keep pushing for treatment for this condition,just remember every time we get the attention of some of theses idiots maybe that will help someone else.I went to revisit my neurologist I had seen before who had refused to send me to a specialist that was so near my house.When I went back I told him that I wanted to follow up on my progress after I had found the specialist that correctly diagnosed and operated on my chiari,he was a little ticked he did not want me to come back and tell him he was wrong. I intend to send more of my records to his office after my next visit with the specialist next week and my reg. med. Dr. will also get all my records on what's going on too,they don't get it but I am trying to be unforgettable when I see my Dr.s I will talk about the diagnosis that has taken 27yrs. of my life,and try to be someone who tells them that most patients do not pretend to be sick,so many Dr.s want us to take the blame for what they don't know and will not learn from those NSs who do know.You are in my thoughts and prayers.

Lynn

Thank you for your encouragement, jcdemar. It's just what I need right now & I am very grateful for you & all here who take the time. I wasn't sure I was going to get up this time, but I am glad I turned to you guys. I feel a little better now that I read the kind words for me. Was beginning to think there just were none

jcdemar said:

Jessica,

This may be one of those times in life when you are required to have a little blind faith. You know what you want and need but your not sure how you're going to get there...it will happen for you. Keep going girl.

Lots of love
Jenn

Thank you Tracy, for just letting me know that you listened & that you are here. sometimes thats what you need, & I needed that like I need oxygen! thank you. makes me feel a little less alone.

TracyZ said:

JESSICA,

I have spoke your words and felt your pain many times. Everyone here understands. I am sure it doesn't make your pain better but we do. Please know we are all here for you & sorry you are going through such a horrible situation.

Please let us know how you are doing & know we are praying for you !!!

Tracy

Please don't judge me, but I am not religous. It's just the way I was brought up. Didnt really have much of a "family", & I wouldnt know how to handle that or who would even deal with me, but thank you so very much for the advise

Abby said:

Jessica,

Then my friend, you do as Beeba suggested. Go to ER, and get admitted for tests and treatment. You know better than anyone else what level of pain your in, the doctors really don't. I am so sorry your having to endure such treatment and pain from your present doctors, but that seems to be the normal way we are treated.

We are here to help and encourage, your a tough lady, who we care a lot about. Most clergy will not charge you and sometimes can make a few calls to help out. Let us know what you decide and please keep us posted. We are here for you and to listen and try to help, God Bless.

Love and Prayers,'

Abby

jessica said:

thanx. i dont have the money to see a professional, & my insurance is the worst. its also a big problem with finding doctors. thats why its taken so long to even find a surgeon. I am up again in horrible pain, waiting for meds to kick in. Need to keep working for as long as i can because I will not survive on disability alone. I am just worn out. Feel like I cant live like this anymore. It is taking everything I have to want to get out of bed & live like this



Abby said:

Jessica,

I am so sorry your dealing with this. Chiari does take it's toll on us. Your not alone with this, so please know we love and care for you. Chiari is not a easy thing to deal with and our doctors sometimes fail us in getting treatments that we need.

Ask for your records, cd's, tests, everything. We have folks who live in your area who will give you some really good recommendations on doctors. Tracy and Beeba live up your way. Ask either of them and ask any of us moderators anything. We are here for you and will help you in any way we can possible.

Your GP should be able to help you with some medication for feeling like your feeling now. Most of us chiarians suffer with anxiety and depression. We take medications that make us feel much better and makes chiari a little easier to cope with. Some of the anti seizure medicines they have us on makes us feel worse too.

Talking this out with a trusted pastor or professional will help you too. You should not be having those feelings. Jessica none of this is your fault. Chiari hurts more than physical it also hurts mental too. When your nervous system is compromised for so long, it causes us a lot of unpleasantness.

I will be praying for you and hope things turn around for you and you get the treatment you deserve. Your a wonderful friend and we care a lot for you.

Prayers and hugs,

Abby

Thank you for sharing with me, BEEBA. The hospital that the chiari institute works out of is long island jewish. its not close to me, but I met with the chief of neurosurgery there, & he declined to treat me. he said that although he has done decompression surgeries, my case was too difficult for him! Ironically, he didnt even see (nobody did except the surgeon I am currently working with) the "odd" thing on my MRI. Dr. Holtzman said that my syrinx is growing a sererate "growth out it's side & it's growing up & carving out a "canal". He said he has never seen anything like it & ordered even more tests. Just when I got done with them all, the radiologist called me to inform me that Dr. Holtzman ordered a nuclear bone scan. I thought maybe it was because of the removal of some skull during the decompression, but called to ask. They told me it was because of what he found in my spine. This put off my next appointment with him, & of course that was when my pain skyrocketed out of control. I guess I do feel like Dr. Holtzman is thorough, & definately taking me seriously. I plan to call him tuesday & ask for help with finding a neurologist or pain mngmt Dr. in the mean time & hope I can get some help through him. Thank you so very much for giving me your time & kindness!!! Something I need so very badly.

Beeba said:

Jessica very proud of you for reaching out both here and through the crisis line. There is hope and I want to encourage you to go get help. I do not know what hospital the drs from the chiari institute operate at (great neck hospital?) not saying go through their facility but through that er. They will be more familiar and you have a better chance of getting one of those drs. Almost every dr that works for a hospital takes a night on call. And just because some of us had surgery through an emergency room check in - you won't have surgery that night. But you get admitted and put in their system then you have more rights and options. Obviously this would not be the ideal way to work the system but sometimes you need to. Once checked in I saw the chief ns - I actually did like my first surgeon and was comfortable with the plan. He changed plans during surgery and honestly had I known as much then as I know now I would have taken a more active role in the planning. I just didn't. But to his credit (and I don't love giving him credit for much) he did admit me between my check in and my surgery to keep my pain managed and to confer with others about me. He didn't kill me and I did wake up with no "headache" that I had had for weeks. My head hurt terribly from surgery but my headache from the blocked fluid was better. Now I had other damage as a result of the condition (dysautonomia) and him not opening dura. And as much as I wish he had just done it completely the first time and was nicer post op - I have to appreciate that he did take my pre surgical pain seriously, he did admit me to control things, and I did have the option if I wanted to exercise it to use someone else. Once admitted you have far more options. You go into that hospital where they practice - demand to see rekate. You may think oh geez she is my worst fear - I am here I am functional I survived and I got a certain level of relief. You will not be rushed from the er to the or and you do not let some hack operate in you. But you need help and pain control - especially if you are at the point of calling a crisis line. If you can tough it out of course I have other suggestions on where you should be going but all involve a wait and travel. Dr heffez,dr Henderson,and dr rosner would be my choices. But I don't want you to avoid an er because of some "horror story" about them. Technically I am a horror story and I am doing ok - I promise. And once there if you are not comfortable with the dr,plan or anything else they do not tie you to the table - you can leave - at any time. I would not go to your local er I would go through the er at the hospital where the chiari group operates out of. I have had to become pretty resourceful on how to get care. Right down to seeing a med school student on the day I know she is being overseen by the top genetics dr (who had a year waiting list)there are always ways. I am very sorry about how you were treated. But please collect all reports and go get care. And hold tough. The night I was admitted - they didn't even want to run an MRI - they wanted to drug me and discharge me. I had some quack dr and I declined pain management and made really clear I planned on making such a scene if they didn't order the test. She did so out of frustration and just to shut me up. Next thing ya know I was admitted and finally getting care. I hate er's so I thoroughly understand - they are just a leper colony but you should not be suffering like this please let us know your next step.

Thanx Sparky, for your advise. It makes me wonder what the heck exactly you have to be diagnosed with to not be treated as a drug seeker!! & like i wrote to BEEBA, I have a particularly odd situation in my spine & the doctor from this very office took all but 5 minutes with me (after making me wait over 2 hours) to tell me "how very bad this is"! Not to mention, he was insisting I add valium to my medications, & I refused more pills! The lady at the desk wouldnt even look at me as she was telling me over & over that the doctor doesnt get his messages till the end of day & she wont do anything to help. I keep seeing that over & over. Not even being worth her effort to raise her head to look at me. truley humiliating, & it has triggered horrible anxiety that I just can not shake

SparkyID7 said:

Jessica,

As I read your post I started to cry because I, like so many here, can sympathize with what you are going through. It is so aggravating that we can't get help with such a debilitating disease.

I have also found that a doctor doesn't always know or condone what his office staff is doing, I would ask to see the doctor again and let him know what happened and who spoke to you like that and you don't appreciate being talked to or treated like a drug seeker and how humiliating it was!

I'm sorry that you are having to go through all of this and just know that we are here for you!! Let us know how things are going. I'm keeping you in my thoughts and prayers!

SparkyID7

Jessica- You brought tears to my eyes, I feel your pain. Just know that no matter how alone you feel, you always have us to turn to. Let it out, get it off your chest, or just rant if you need to. We all understand and care:) I'm so sorry your Dr's treated you like a seeker. I had to deal with something similar at the er not to long ago. Don't let them tear you down, they need to help you for your pain. I would call and speak to the office manager Tuesday, tell them what happened and that you do not appreciate being treated as a seeker. It's bad enough to have to live(if you can call it living) with this and when you're treated that way its just down right insulting! I can relate to the pain thing because my PCP is too afraid to treat and my NS does notprescribe anything...ever. There are days when mine is so bad i feel like I'm stuck in this broken body being tortured and wishing the end was near. occasionally i will even pray for God to free me from this misery. To have to take this on youself is something i could not imagine, but if you need someone to talk to you can come here. Take care of youself and remember we care:)

Wishing you hope and time to be pain free.

I think of your situation and it makes me annoyed that people assume anything about others!

Thank you Kristi, I absolutely relate. I can not put to words what the support here means to me. I'm not sure I had the will to make it through last week without you guys. It makes me sad that pain is what brought us here but I do need you guys sometimes. I really dont know how people got through before the internet, especially since its not easy to run into other chiarians, thank you so very much for reaching out

Kristi W. said:

Jessica- You brought tears to my eyes, I feel your pain. Just know that no matter how alone you feel, you always have us to turn to. Let it out, get it off your chest, or just rant if you need to. We all understand and care:) I'm so sorry your Dr's treated you like a seeker. I had to deal with something similar at the er not to long ago. Don't let them tear you down, they need to help you for your pain. I would call and speak to the office manager Tuesday, tell them what happened and that you do not appreciate being treated as a seeker. It's bad enough to have to live(if you can call it living) with this and when you're treated that way its just down right insulting! I can relate to the pain thing because my PCP is too afraid to treat and my NS does notprescribe anything...ever. There are days when mine is so bad i feel like I'm stuck in this broken body being tortured and wishing the end was near. occasionally i will even pray for God to free me from this misery. To have to take this on youself is something i could not imagine, but if you need someone to talk to you can come here. Take care of youself and remember we care:)

To say the least, chiari has taught me the valuable lesson that you never know what is going on in someone's life, & to never judge. Thats for sure! But my hopelessness is slowly turning to resentment that the judgement came from the "professionals" I turned to for help! I wish those people would just "get it"! get that they may see people every day that have pain & disease, but us people dont deal with being diagnosed with that everyday!! I think I am held to a higher standard as a bartender/server with treating people with respect!!!!

Sonj said:

Wishing you hope and time to be pain free.

I think of your situation and it makes me annoyed that people assume anything about others!