Problem with my nuerosurgeon

Hello everyone. I was diagnosed with CM 1 back in 2015 after years of having chronic pain. Like many of you, it took several years to find a doctor who would even believe me when I told them about my problems. I was finally diagnosed and had my first surgery in September of 2015. The surgery was not successful as my symptoms never went away. A MRI confirmed that there was still blockage of the CSF and I had a second surgery in September of 2016. I just got the results of my six month follow up CINE MRI which indicated that the CSF flow is normal and everything looks great. However, I still have many of the same symptoms that I’ve had for years. I have chronic pain throughout many areas of my body, a horrible sense of weakness and I have not been able to resume any resemblance of normal activities. In many ways, I am the same as I was prior to being diagnosed. My question then is, has anyone else still experienced several symptoms even after a successful surgery and normal CSF flow? On a side note, my neurosurgeon has reported to my work sponsored short term disability company that I am a drug addict due to the pain medications that I still take, and are prescribed by my primary care physician. I’m beside myself at the moment. Not only am I still sick, but I’m now going to lose my job due to the surgeons notes on my case. Thanks in advance for your responses.

I am so sorry you are still having trouble. I know many people still do. I had my surgery end of October and am pretty much symptom free. I do have residual nerve damage from my syrinx. My Dr. did tell me that any nerve damage likely would not resolve. Could it be lingering nerve damage causing some of the symptoms? My CSF was completely blocked by the time I had surgery and the most recent MRI shows normal flow.

I’m so sorry to hear about the pain you are going through and can definitely relate. I had my first decompression surgery in 2002 and was good for a few years. Throughout the past decade, symptoms slowly started to return and worsened as time passed. I have the same things going on that you report and just had my second decompression the end of 2016, with no improvement even though my CSF flow is fine. I have been told it is likely permanent damage that has occurred throughout the years.

What is most concerning for you is what the NS reported. He obviously doesn’t know enough about the long term effects of Chiari. I would find a doctor (maybe your primary care doc) that does know more about Chiari and have that person write to your work sponsored short term disability company to counteract the other report. I would also provide your employer with information you can find online about Chiari and chronic pain, etc. I’m so sorry you are being treated in this manner. It definitely does not help! Best wishes for better days.

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Thank you both for responding. It truly means a lot to me. My current neurosurgeon is actually the third one I have had, and he performed the second surgery. I was referred to him by my previous two NS’s. The place he works at is called The Mayfield Clinic and they are highly specialized in brain and spine conditions. People come from all over the Midwest for treatment by their doctors. I’m not going to say anything bad about their clinic because I’ve only delt with the one surgeon. With that being said, I am just devastated that he would write something to that effect. CM has destroyed my life in so many ways. I try to keep up the good fight, but then stuff like this happens. I should be concentrating on getting better, or finding out if maybe something else besides CM is going on. As I’m sure all of you know, it takes about everything we have inside us to battle this CM beast. Now I’m fighting a doctor who seems to be against me and trying to push for me to lose my job at the same time. I have only been able to work roughly 8 months out of the last 24 months. Most of that time, I have lived off of 59-60% of my salary! which isn’t enough. I’ve had to live off credit cards to help make ends. During that 8 months working, I don’t know how I ever made it through a day. I went and saw my family doctor (and he’s the one that prescribes my pain meds, not the neuro) and I told him what happened. He was pissed off to say the least. He did a write up of my visit with him and made a very clear point that in no way, shape or form was I a drug addict, nor do I misuse or abuse my medications either. So, I called and spoke with the office manager at the Mayfield Clinic and told a very nice lady how angry and disappointed I am with my surgeon writing what he did. Which was nowhere near the truth. I told her the consequences of what would happen to me if his statements were not retracted, which would include losing my job, and much more importantly I would lose custody of my 8 year old daughter, who is the one absolute best thing in my life right now. As any good parent would say, I Cant imagine living without her. She is the love of my life!!! The stress of this situation is indescribable for me right now. The office manager did call my short term disability rep and asked her to postpone any decisions until Monday (tomorrow) bc the neuro will be back in town and I requested a meeting between all of us. They need to make this situation right. If they don’t, I’d be forced to sue, which I honestly and truly do not want to do. I’ve never sued anyone. However, this situation goes far beyond just myself, as it would devastate my daughter if I lost her too. Oh wow. My apologies. I just now realized how much I have been writing. Thanks for letting me vent, and I hope you all are finding positive results in your daily life situations. I’ll keep you all in my prayers. Thank you again.

YES! I definitely still have Chiari symptoms 5 years after surgery. However,
my symptoms re-occurr on a very regular basis. I have three days in a row where I am totally normal-on-top-of-the-world great. Then, every fourth day, ALL my Chiari symptoms return. I become brain-dead, nearly paralyzed, blood pressure plummets, excruciating pain all over, etc… just like before the surgery! Then… 24 hours later, I return to the totally normal top-of-the world me, again. This cycle has been going on for 4 years now. Without wavering - I ALWAYS have the recurring symptoms EVERY FOURTH DAY!!! I’ve asked my top-notch neurosurgeon about it, and he’s freaked out about it, too. He doesn’t know why the ‘Crash Days’ are so regular. I also lose every 12th week. For a whole week, I am a functionless zombie. These ‘relapses’ are so unwaveringly regular, I’ve been able to mark them out on my calendar for the past 2+ years. Nothing I’ve been able to do; diet, exercise, rest… has been able to make the every-4th-day relapse go away. However, I can bring on MORE relapses. Anything stressful - even fun stress - like a party or social event - will bring on an extra relapse. That’s why I can’t get off disability. Although the scheduled relapses are very consistent, I can’t predict the whenever a stress-induced relapse might occur. Yeah. At least my neurosurgeon told me the facts in advance. He told me that some have decompression - and heal 100%. Others have the surgery, and don’t heal at all… and there are all varieties in between. I guess I healed 75% - since I lose every 4th day and every 12th week. Neuro-Doc also told me that CNS healing can take a VERY long time. Some folks are still are healing ten years after surgery. I hope you will start to feel improvement, soon. Maybe pop some popcorn with eat coconut oil - the CNS is restored with medium-chain and high-chain fatty acids.

Thank you so much for your reply Beth! I can relate to the pattern you are experiencing. Somewhere around the end of November of 2014, I had constant symptoms, even if they weren’t the same ones each day. But also at that time, I began having horrible episodes of pain, weakness, severe muscle twitching, etc… It was absolutely horrible. Medications didn’t help and even my pain meds didn’t help at all. It was like clock work too. When an episode came on, it would last for three days. No more and no less. Then, just out of nowhere, it would go away. For the next two weeks, I would just deal with my normal every day symptoms, which were bad enough to deal with! Then just like clockwork, it would come on for another 3 days. So two weeks off and then three days on. Then repeat! This went on all the way until I had my first surgery in Sept of 15. I’ve read about so many success stories on here, and between those and my 8 year old baby girl, I have kept hope that this will be resolved one day!! Now though, I’m not so sure. I just can’t understand for a second how a neurosurgeon can listen to me complain and describe the medical issues I have, and the amount of pain I have each day, then basically call me a drug addict. Even with my meds, I am never pain free. The meds just let me function somewhat like a normal person. He took about 5-6 of the symptoms I reported to him and said “these are easily associated with his narcotic dependency”. I’m now having to fight that battle because if he doesn’t correct that dictation, I will lose my job. And of course that will lead to my ex wife filing for custody of my baby, to which she would more than likely win. I don’t know how much longer I can do this. Don’t get me wrong, I’d never take the easy way out. I just mean that I’m tired, and I’m beat. Almost six years into this CM beast and I just don’t know if I have the strength to keep fighting, especially when I have a neuro who wants to label me as a drug addict rather than trying to determine what’s wrong with me. I mean, I have many of the same symptoms that I had six years ago, which was three years before I ever took any pain medication. Ok wow, I’ve vented for far too long again. My apologies. I hope all of you continue to get better and conquer this CM monster!! I am truly thankful for all of you that have taken the time to read this. My prayers are with each and everyone of you!

Wow. Four years before my decompression surgery, the doctors at a Pain Management clinic had me on narcotics for 9 months. Thing is, the narcs really worked for me. Almost too good! The oxy, percocet, norco, ritilin, adderil, morphine etc… all combined were able to mask ALL Chiari symptoms. Like you said, the drugs brought me to the level of being functional. I never got euphoric off narcotics. I just got functional. Thing of it was… narcs are infamous for their diminishing return. I started out needing only 5 mg. for a day. At the end of the 9 month school year, I was needing 300 mg to get the same effect! I knew I was heading for toxic quantities. So, I came off all narcotic meds practically cold turkey. Yeah. I ended up in a psych unit in the local hospital because I went SO berserk from the pain!!! From 2008 - until surgery in 2012, I succumbed to the Chiari symptoms. I became nearly a total vegetable physically, and brain dead mentally. Had the Lord not led me to THE BEST NEURO-doc EVER, I’m sure I’d be dead by now.

Which leads me to the next topic… seems to me like the majority of neurosurgeons are not educated about Chiari’s. My neurosurgeon does/did nothing BUT Chiari surgery - and he’s trained neurosurgeons around the world how to do it. But, before I could have surgery from him, I was required to get a 2nd opinion from any other Neuro-doc in the Charlotte, NC. area where I lived. My neurosurgeon warned me; “Don’t be surprised if all the other neurosurgeons tell you that you don’t have Chiari’s, and that you don’t need surgery.” Because the MRI showed that my brains were oozing out the SIDE of my head - and most neurosurgeons will only look at the medial (middle) section. Sure enough. The doc I saw in Charlotte said exactly that. Said I didn’t need any surgery. He disregarded the ‘sideways ooze’ altogether.

So, a good Chiari neurosurgeon is what can turn the tide for you! As far as meds go, all I need now is a pinch of amitriptyline every day just to keep the remnant nerve pain calm. Amitriptyline is totally non-narcotic - although a number of TV shows have tried to show it as otherwise (any drug that take 6-8 weeks to become effective hardly qualify as addictive!). On my every-4th-day bad days, the pain can get ‘over the top,’ still. In that case, I have some emergency Lorazapam to smother that sharp pain. Lorazapam is a benzo - and addictive - so I am extremely careful about using it. I’m so freaked out about addictive meds - never want to go through that again!!!

I believe the cycle of bad days (like, I lose every 4th day and every 12th week), is caused by brain stem damage. Mine is permanent. Still, there is a good chance that after surgery, at least you will get some GOOD days that could outnumber the bad days! Prays with you!