Just had a CSF flow study done at a top hospital in St Louis. Saw my neurosurgeon for a follow up (second time seeing him, he’s a top doc at a top hospital in St Louis working on a Chiari study, he is the third NS I’ve been to). But he said again what he said the first time even before getting the final radiologist report from the CSF flow study that he doesn’t think I would benefit from surgery. I’m fat, I don’t have a huge herniation (5mm), and he’s not convinced some of my symptoms are Chiari related! I’m so frustrated. I suppose I can appreciate a doc not wanting to cut my head open without being sure that it will give me positive results. But how can any surgeon guarantee that fr anyone? All he sees is the medicine. He doesn’t see me. He doesn’t see the pain I’m in every day. The pressure in my head that is so intense that I just want…I just want it all to end. Why can’t someone just fix me? I know there are people out there who are so much worse than me, but that doesn’t lessen my pain. And of course now because he doesn’t want to cut I have to find yet another doc to try to manage my care. Another doc to have to establish myself with. Another doc to try get to understand I’m NOT drug seeking. Another doc to have to fill in on all the tests and procedures and results and…and I’m tired. I’m sick and I’m tired of being sick and tired. I try to imagine having to deal with all of this for another 20 years…I’m done.
Hang in there! I honestly can't say that having the surgery is a cure all. If I had to do it all over again, I really think I would have waited to have surgery. I hope that you can find relief from the pain soon. It has been suggested to me to check out a pain management doctor. Have you considered this?
AuntBee,
This is so heartbreaking. This struggle pushes our limits. Im going to tell you a little bit about my experience, not because I think we need to talk about me, but because it might change how you are seeing things right now. When I first got the report that I had “mild Chiari” I was on the move to find a surgeon. I did a lot of research on which surgeons treat “mild” Chiari and even Chiari zero. So I had a lot of confidence in sending my MRI out to Dr. Oro in Colorado. He is highly recommended. I got a call from his coordinator a couple of weeks later and I was thinking, “omg, this is it, it’s gonna happen.” But, the news i got on the phone was that my MRI didn’t show enough to warrant surgery, my herniation of 3-5 mm was too small. I broke down like I never have before, I cried and sobbed all night. I thought that if this highly recommended Chiari specialist won’t help me no one will. I was devastated, and I imagine that is how you are feeling. I was thinking that all the good and happiness I was and had was gone, my best was done. But the truth is that your story has yet to unfold. If you feel that you need surgery (and that’s ok, I felt that way) then you need to regroup and keep going till you find the right one. Dr Heffez in WI listened to my symptoms, looked at the neurological story, and helped me despite my tiny herniation and a CFS flow that was not significantly blocked. I think he looks at the MRI as only part of the situation. From what I have gathered from reading other members posts, The Chiari Institute in NY, dr Rosner in NC, and dr Henderson in MD also like to see the whole picture.
The other side of this is the pain management. A surgeon won’t help you with a pain management plan, that has to be done with a PCP, a pain management clinic, a neurologist, or another trusted doctor. Getting a pain management plan does not mean you have given up, or defeat. We’re not meant to be in severe pain for so long- our minds and bodies can’t take it.
I’m so sorry this happening. I get the feeling that you want give up, but that’s not your answer. If you are in a place of crisis there is a hotline available for you to talk with someone who can help in this area. If you need it, it’s under the Discussions tab at the top of this site.
I hope you know that you are not alone. There are so many people here who are pulling for you. We want to see you get the help you deserve. You are doing the right things, just have to keep going.
Love and hugs and prayers,
Jenn
Ps. Please keep checking in cause I’m worried about you.
Just having a major meltdown kind of week. I really thought I had found a great NS who was going to help me. And he still hasn’t called me with the final radiologist report from the CSF flow study like he said he would (I do have a call into his office) but he’s already dismissed me as a patient. I feel like I’m in limbo. I feel like no one wants to deal with the fat girl. And then I get home. I have a very supportive family. But my brothers all have their own families and their own issues to deal with and don’t always seem to care too much about what is going on here (I live with my parents). My mom is my biggest support, but I don’t always feel I can unload on her as she is the primary caregiver for my dad who is in the late stages of a rare form of dementia (I also help care for him when I can and help with stuff around the house, I also work a full time day job). But in the last few weeks people I thought were friends have shown me a different side of themselves. I get the disbelieving looks…people don’t believe I’m in pain or don’t feel well. They don’t understand. Employers. Friends. Doctors. I hate chiari. I hate that the medical community doesn’t know more about it. Doesn’t care more about it. That there isn’t more research. I read people’s stories on here who have been struggling with this for 10-20+ years…and I don’t know if I have the strength.
Sweet Bee, we are here for you. We all understand the daily struggles, and unfortunately the injustice of having an affliction that ravages our bodies without any outward physical signs of the suffering. The medical community has virtually no where to go but up concerning Chiari, BUT there are a few doctors here in the US who have the knowledge and heart to help us.
Lean on this group as much as you need, this is your community too.
Jenn
I was recently diagnosed with Chiari 1 and just a few days ago I met with an amazing spinal neurosurgeon who specializes in Chiari's. His name is Dr. Wesley King from Cedars Sinai in Los Angeles (this is a wold renowned hospital). He told me that the size of your Chiari does not dictate your symptoms. He has seen someone who had a Chiari that was less than 1mm that was in a wheel chair because she couldn't walk and he had another patient that had a Chiari 2 cm and they didnt have any symptoms. As I said, I am still new to this Chiari world but I do believe what he told me, especially after doing research. I do believe your symptoms are real and I really hope you can find a great doctor who can help you!
I hear so many bad things about the surgery - that it doesn't really cure everything. What made you decide to do the surgery?
Christy1975 said:
Hang in there! I honestly can't say that having the surgery is a cure all. If I had to do it all over again, I really think I would have waited to have surgery. I hope that you can find relief from the pain soon. It has been suggested to me to check out a . Have you considered this?
How ya doing today?
Thank you all for your kind words, support and encouragement. It’s been a long hard week, one I honestly wasn’t sure I was going to make it through, but I did. I’ve cried more this week and had more meltdowns than I remember having in a long time. Just taking it one day at a time right now, one second at a time when need be, and I’m just trying to remind myself to just breath.
Finally got the written report from the NS office on my CSF flow study (final radiologist report)…
- Cerebellar tonsils lie 2 mm below foramen magnum with peg shaped cerebellar tonsils and crowding of the foramen magnum.
Ok, so my first MRI in May showed 5 mm herniation. I know the difference may just be that the MRIs were done at different hospitals and read by different radiologists but I was kinda surprised at the difference.
- “Phase contrast CSF flow sequences demonstrate appropriate CSF flow at the level of the cerebral aqueduct. Additionally, there is appropriate CSF flow seen at the anterior and to a lesser degree posterior foramen magnum below the level of the cerebellar tonsils. There is CSF flow pulsation seen just inferior to the cerebellar tonsils. No definite flow is seen immediately adjacent to the cerebellar tonsils between the cerebellum and the opisthion.”
So if I’m reading this right, on the back side of the cerebellar tonsils there is no flow at all. To me, that doesn’t sound like a good thing. Am I wrong? How much can your CSF flow be compromised and you still be ok, even being in excruciating pain? And he thinks my symptoms aren’t chiari related? He thinks I wouldn’t benefit from surgery? Or is it just because he doesn’t want to deal with the risks of operating on a fat girl? I’m just frustrated. Don’t know whether to follow his suggestion of seeing a NL first and ruling out everything else, or trying to find another NS and try the process all over with them. Ideas/suggestions/thoughts? Thanks!
I know all doctors are different but mine doesn’t believe in the CS flow testing. He says that all Chiari’s are different and operation depends on your symptoms. He’s seen patients with 2cm Chiari’s that are symptom free yet he had a woman who couldn’t walk that had a 1mm chiari.
I hope you can find a local dr that specializes in this. Otherwise, why don’t you nail your reports to an out of state dr for a second opinion?
Good Luck!
Also, what r your symptoms?
My daily symptoms that I’m having the hardest time with right now are headaches(primarily in the back of my head and made worse with any kind of straining), intense pressure in my head (also primarily focused in the lower back part of my head), ringing in my ears 24/7, balance issues, fatigue, muscle weakness, dizziness and vertigo, and numbness/tingling in my hands and feet. Other sporadic symptoms include palpitations, urinary incontinence issues, swallowing issues, blurry/double vision, tremors in left hand, hoarseness/voice changes, and a few others.
as soon as i started the trimmers that was it. My surgen did the surgery. My chiari progressed veary fast. For no to like a 6mm in 3 months. I just know ice packs where my best friends. I sleeped with them on my neck. I had the surgery and i will say i dont regret it but i am still sick but a lot better then i was.
They’ve done everything but the lumbar spine which I pointed out and asked about at my last visit with NS. They said they could see enough on the thoracic MRI (it extended low enough) they didn’t feel they needed to order lumbar. Thanks for the support and understanding!
Beeba said:
Have you had a full spinal MRI? Some of the symptoms you are describing in your last response can be tethered cord. That can also cause chiari to get worse. I am sorry you are having so many issues. Please also look into dysautonomia - it is very common with chiari and if you can get it treated you can feel way better. Please know we understand and certainly hope for the best.
Hi AuntBee,
So sorry to hear and feel the pain that your going through! It’s so very frustrating when you feel your not being heard! If I can, may I suggest you rule out all possibilities before you decide to enforce surgery? Although everyone is so very different when it comes to Chiari, I would like to share something. My daughter is a very rare case, but in about three years, she has gone through two decompression surgeries and four shunt surgeries. To this day, she is worse off then the previous surgery. But now there is no looking back. We can only continue to try and fix her. Her headaches are so extreme that she can’t sit up in a day more than a half hour at a time. If I could just suggest, try everything you possibly can before you decide surgery. Obviousely if you become where you are feeling neurological issues, like legs not functioning, limbs tingling, off balance issues, you may need to act faster. But if I could go back and try everything possible before they cut on my daughter, I would. You can’t go backwards so try everything while you can. The surgery is not a cure. and sometimes along with it comes other issues such as scarred tissue and other stuff. I’m sorry your going through people not believing you! That is so frustrating. But sadly this happens so many times with chiarians. It’s just not fare. Why do they have to see it to believe it? God Bless you, stay strong.
AuntBee said:
Finally got the written report from the NS office on my CSF flow study (final radiologist report)…
- Cerebellar tonsils lie 2 mm below foramen magnum with peg shaped cerebellar tonsils and crowding of the foramen magnum.
Ok, so my first MRI in May showed 5 mm herniation. I know the difference may just be that the MRIs were done at different hospitals and read by different radiologists but I was kinda surprised at the difference.
- “Phase contrast CSF flow sequences demonstrate appropriate CSF flow at the level of the cerebral aqueduct. Additionally, there is appropriate CSF flow seen at the anterior and to a lesser degree posterior foramen magnum below the level of the cerebellar tonsils. There is CSF flow pulsation seen just inferior to the cerebellar tonsils. No definite flow is seen immediately adjacent to the cerebellar tonsils between the cerebellum and the opisthion.”
So if I’m reading this right, on the back side of the cerebellar tonsils there is no flow at all. To me, that doesn’t sound like a good thing. Am I wrong? How much can your CSF flow be compromised and you still be ok, even being in excruciating pain? And he thinks my symptoms aren’t chiari related? He thinks I wouldn’t benefit from surgery? Or is it just because he doesn’t want to deal with the risks of operating on a fat girl? I’m just frustrated. Don’t know whether to follow his suggestion of seeing a NL first and ruling out everything else, or trying to find another NS and try the process all over with them. Ideas/suggestions/thoughts? Thanks!
What are your symptoms? I had the same problems as you untill I found a way around the UK system.x