I had my 1 year post decompression check yesterday. So frustrated right now and need to vent and get some input. First of all, after driving almost 5 hours one way and waiting for 2.5 hours to finally see the doctor, I was told that he couldn't see me because his office forgot to have me get a CINE MRI before my appointment. WTH? Next, he asks me about recurring symptoms and new symptoms. I went through the run down and at the end of it all he told me that my symptoms had nothing to do with Chiari. Really????? They are the same symptoms that a year ago warrented surgery but now they have nothing to do with Chiari? Wow. So darn frustrated. Some of you may remember that my surgery was riddled with complications. CSF leak due to punctured dura while suturing me up, bacterial meningitis, second operation due to damage caused by meningitis and a slew of other infections, as well as the total loss of eyesight in my right eye due to a viral infection received from my hospitalization..... I don't know what to think....... Is it possible that they won't admit that these symptoms are Chiari related due to the list of "mistakes" that were made during my first surgery? I have never even held them responsible for what other doctors have called blatant malpractice. I never initiated any lawsuits even when urged by other doctors......I didn't want to make waves because I am limited to doctors that are actuallhy knowledgeable in this field and the fact that I realize that there are risks with every surgery or procedure that you undergo. Ok, deep breath...... Any input or suggestions would be greatly appreciated. I so don't want to have to start all over again!
Symptoms disregarded as being linked to Chiari were: Headache in back of head, neck and back and shoulder pain, hearing CSF fluid, fatigue, weakness, loss of memory, difficuly speaking and swallowing, tingling in extremeties overall pain and tenderness in entire body..........there were many more but he cut me off at this point.
Who is this guy? (Don’t answer that! Lol) but seriously this is awful! I HOPE you and your insurance aren’t being billed for that appt. I’m so so sorry you still have all of these symptoms, especially after such a horrible surgery and recovery. I’ll bet you are sooo disappointed after this visit. Well, I hate to say it, and I know this is hard, but I think you need a fresh pair of eyes to look at your brain’s current status. Forget about the trust issues for a minute, you are still severely symptomatic- maybe a second opinion by another Chiari specialist can turn up a new opportunity that your NS isn’t aware if. I would take advantage of the cine MRI and have another Chiari NS lined up and waiting. Hang in there Christy. Just keep taking steps.
Hugs,
Jenn
Christie,
You aren't alone sweetie !!! We need to get you a second opinion. Will you please message me who your NS is? Those weren't responsible or productive answers to your questions. Post op symptoms are very discouraging & serious. It is possible you have additional related disorders causing them. They should have done the CINE MRI while you were there. I am sorry you were treated this way. Having Chiari takes more inner strength than we think we have at times. I know you are a strong woman from what you have already been through. I have a few ideas about what may be going on but I think a dr. needs to check you out. Have you ever seen a pain mgmt. specialist? We had a lot of the same post surgical issues and they have helped me the most. When a NS doesn't know what to do they don't react rationally to our questions and concerns. They dismiss our issues. I have seen this too many times personally & with other Members. I know we can find you another CM experienced NS in your area. You need to stay strong and look at how far you have come and know people love and need you....even with Chiari. I will help you. I am messaging you my number please call me anytime you want to talk. Definitely have the CINE MRI as JC recommended and hold onto hope. Is there a comprehensive pain management clinic in your area? I would ask for a referral from your PCP or the bad NS while he is taking his time not knowing what to do. I promise you will be amazed. Do Not Give Up or get Discouraged. Look at this as a battle you will win. You have all of us and can always vent because I and many others truly understand. I had a text from another Moderator that couldn't get to her computer to answer your post, so know you aren't alone. Far from it.
If you do find you need to talk to someone professionally we have a crisis # 800-■■■■■■■■. At times we all need talk to someone.
I am from the South and this is part of my culture as well as my personal beliefs.....so please understand we pray for everyone. Some people find it odd or like I or others are pushing religion but it's just how I was raised and who I am....so please know when I say I will pray for you I will & it is just my way.No offense meant. I will keep you in my prayers. When you have Chiari you need all you can get.
Tracy Z.
I have not been seen by a pain management specialist. It was suggested that I find one after surgery but I was told that the pain would be gone in a year so I decided to tough it out. The year has come and gone and no relief from the pain yet. I do think I should consider thus as an option at this point. The pain has definitely taken its toll on me physically and mentally. Thank ypu for your input. It is greatly appreciated.
I don’t have a lot to add other than seconding what has already been said, I just want you to know that you are in my prayers! I hope you get relief soon!
I am thinking of you and that's a shame that the NS didn't believe you.
I agree about finding a pain management routine. This doesn’t mean you are settling or accepting your situation. Our bodies and minds are not designed to be in this much pain. You deserve some relief while you search for your answer.
I would reach out to a doctor with DO they help with musclar issues. No one wants to believe its not the chairi because they are not knowledgeable. And since these issues are ongoing and i myself would contact a lawyer and maybe get a settlement and a nice vacation. Moderation is what i find helps my daughter moderation is everything she does. God bless
Hi There...
So sorry that you are going through all of this. I can understand your frustration completely!
I had seen a Rehab Doctor in the past..see if I can spell it correctly here: Physiatrist ..think that is correct..he did help..I have a TENS Unit..that he ordered and honestly, I need to use it more! He also did deep (and I mean DEEEEEP muscle massage..)..This type of specialist may be worth looking into...they can also prescribe pain meds as well...if that is what would be most helpful to the patient.
Just know that you are not alone in this thing...I get it...We all get it! Sometimes when I am alone I feel that my family doesn't truly grasp this entire Chiari thing...they think (I believe) that the surgery was a cure all...as we know, as patients..it is a treatment...I will be forever grateful that I am better than I had been b4 the operation...but..still have issues..
Please let us know how you are..and whats going on with you P.O.A...Plan of action! LOL
xoxox
I agree with the others above -- you should get a second opinion & be in pain management until you feel better.
Please see Dr. Fraser Henderson. If something is still wrong, he is the one to fix it.
I didn’t have surgical complications (in fact, mine was easy) but like you all of my symptoms came back plus new ones showed up. My doc said the surgery was successful so it’s not from Chiari. I see him again today (one year post-op) but I don’t expect much. You are definitely not alone. Good luck to you. If you need to talk, please don’t hesitate to PM me.
Did we go to the same chiari center? I thought I had read in one of your posts that we did but maybe different surgeons. needless to say I have had the same issues, and starting over. I hope you get some answers and help.. I hope we all do.
I am actually filing a complaint with the center and hospital, and possibly talking with a lawyer after everything I have been through with them. The sad part is, it is a highly suggested place and surgeons.. people hear the good, not the bad. Then afterwards people come forward, at least that is what i have experienced. It sad.
Karla, ask the surgeon if there is any possibility that your neck be causing your symptoms - look into it!
Karla said:
I didn't have surgical complications (in fact, mine was easy) but like you all of my symptoms came back plus new ones showed up. My doc said the surgery was successful so it's not from Chiari. I see him again today (one year post-op) but I don't expect much. You are definitely not alone. Good luck to you. If you need to talk, please don't hesitate to PM me.
JC - I asked him about the neck. He did a laminectomy at C1. My neck pops a lot now. Doctor’s answer - It’s just a small little bone.
Something Witty - You and I went to the same center, different focus, and they are the first thing I thought of when I read Christy1975’s post.Sounds familiar.
I just "celebrated" my one year post-op as well (September 17th) and feel your pain, literally. I woke up from my surgery with the worse headache of my life (I'm sure we all did), and it never went away. I've been working with my neurologist and medications to figure out how to deal with the pain (I've managed to get the pain level down to a "7") and have since been sent back to work. I'm due to try Botox next week, so we'll see how that goes (fingers crossed).
Anyhoo, I digress. What I was trying to say, was that 1 year is not always a major milestone in the healing process. Sometimes it can take longer than that, and it seems like we need to really be patient and realize that our struggles are long-term. My neurologist told me that decompression doesn't "cure" Chiari, but actually what is does is stops the progression of it. Something I hadn't thought of before.
Chin up, :)
I’m not talking about the laminectomy, I’m concerned that your neck could have its own set of pathology separate from the Chiari, like bulging disks, instability from EDS, or stenosis/ narrowing of cervical canal for example. I bring it up because that’s what happened to me post decompression. 
Karla said:
JC - I asked him about the neck. He did a laminectomy at C1. My neck pops a lot now. Doctor's answer - It's just a small little bone.
Something Witty - You and I went to the same center, different focus, and they are the first thing I thought of when I read Christy1975's post.Sounds familiar.
Good to know. I’ll check it out. Thanks.
My Doctor told me that the symptoms may or may not go away after surgery. I will be 2 years post op In Dec. 16th. I remember being in lot of pain after surgery, then I can remember my symptoms going away. Now they are slowly coming back. They are not near as bad as they were when I first was sick, but they are coming back. I will say that your doctor doesn't want to get law suit for all of your trouble with your surgery. They don't want to go on the recorded saying anything. Well that is up to you if you want to take them to court but I think you should just find another doctor to help you with your symptoms. They have lots of meds to relive them you just have to think do you want to take meds for the rest of your life. I am fighting that battle now trying to decide what to do about my symptoms.
Christie,
I’m going to start off my reply to your post as my spirit tells me too…Dear Heavenly Father I come to you this morning with my brothers and sisters and ask you for forgiveness for any of my sins! Lord I ask you to intervene on Christies’ behalf. Father you have said in your words, "Where two or more are gathered in my name, there I am in the midst! I believe your words are 100% true! We ask you Father that you come into Christies’ heart. That you send the Holy Spirit to her for comfort and guidance. She is your child and we know you’re in control! Put in the hearts and minds of her doctors to do what is right, and use Christie to further your kingdom and give you all the praise and honor, Father, by your stripes she is healed, in your mighty name we pray…AMEN!!!
Now, as far as your symptoms, I did not go through the complications that you did, that breaks my heart, however; the post op symptoms that you are having are identical to mine! As a matter of fact, my speech therapist has repeatedly asked for me to receive therapy for swallowing, as I am have difficulty, I have been suffering will all the symptoms that you have for 18 months post-Op! It is very frustrating. I finally got an expert at UC Davis in CA, I went to see him this past July, my next appointment was scheduled for August, it was cancelled and moved to September, was cancelled again and set for October! Not surprised but extremely disappointed because it has once again been cancelled…indefinitely! The doctor is out of the country on a family emergency and won’t be back for a couple of months, I’m told whenever he comes back he will reschedule all of past appointments, so I’m looking at possibly next year! I know you may be concerned about doing this, but you need to contact an attorney, not just any attorney, but one who specializes in medical malpractice. My Mother has been a Registered Nurse for so long, the family has a running joke that she actually delivered baby Jesus, she said she didn’t want to be in the bible because it was the Lords day…God bless her. My wife is also a nurse, and although we do accept some risk in surgery, but there’s a difference between risks and Malpractice, I need you to understand this. The longer you wait the harder is will be. If you would like, I would be more than happy to speak with you more in depth about your situation. You are on my heart and mind, I’m a warrior, professionally and spiritually. I can not stand by and watch my brothers and sisters suffer. In combat, I never though about the defense of the United States, as strange as that may sound, when you’re in a firefight, the only thing you’re thinking about is your teammates on the front lines with you. When one of my brothers was killed right in front of me, and I had to watch him suffer and die, it enraged me, it made me do things I never though I could or would do, but they were my brothers in arms…just like you are! I will fight for you, you’re wounded and on the front lines with the rest of us…I WILL NOT LEAVE YOU BEHIND! You’re coming home! My military jobs motto is, “That Others May Live” if you google it, you’ll know what I did in the Air Force! Hang in there and Never Quit!! God bless…Always!!
Shay