Hello all. I’m new to the site, but I’ve read a lot of stories on here where people have a 7MM or 11MM situation. I saw my neurosurgeon for the first time today and he said mine was 24 MM, and that he will need to remove my C1 as well. In my current state of mind, it’s just a big number that scares me a bit. Being at 24 MM, is this more severe than say a lesser herniation? I will ask the surgeon more questions when I see him again, but for now I’m just seeking additional info. I guess I was in shock a bit at today’s appt and just didn’t have the frame of mind to think of all the questions I now have. Any info you can provide me is greatly appreciated, and God bless you all.
I am recently diagnosed too but from the research I have done the size doesn’t matter so much as if the cerebrospinal fluid is being blocked If i am correct. I am sure some others who have been aware of our condition longer can chime in and give you more information.
Do you have many symptoms? its all about symptoms. Mine was at 8 and I had all symptoms I think ever associated just about. Had decompression and now three years out I’m back in same boat. I personally have never heard of that large I would be sure who is doing the surgery how many surgeries does he do a week? How much experience does he have? My biggest thing I like for people to know…not to be negative but to be aware because I was not told., surgery is not a cure. There is no cure. It can help with symptoms. Good luck pray all goes well
Trever, my herniation is 22 MM. I do not have severe symptoms. I went to a neuro-surgeon last september and he put through a bunch of tests. We discussed that Surgery was not necessary at this time, due to the following findings:
1. Normal spinal fluid
2. Minimal to no headaches
3. Normal peripheral vision
4. No tethered chord
I do have some tingling and back issues but he mentioned that it was not caused by CM.
What are your symptoms like?
That’s great news for you!!! I have severe headaches, ear and eye pressure, memory loss, visual problems with blurring, problems getting things from brain to speech, numbness and tingling in face and the list continues!!! I had blockage at 8 mm and decompression my symptoms improved for several years and are worse than ever now! I’ve had chronic head pressure for several months! If you have no symptoms I would put off surgery as long as possible! My doctor told me I would know when it was time the first round and I waited as long as I could (actually I was forced) eyes not working together long story! But if you have no major damage or symptoms surgery is not a cure and I do not recommend it! I’m worse now years later and recovery is ROUGH!!! I hate to be negative those are just the facts its not fun especially if you like to scuba dive, snow ski, play with grand kids ect!
Deena / James,
Thanks so much for responding. I have pretty severe symptoms. Severe headaches, to the point of even blacking out on two occasions. Pain through my entire body really. My legs and arms probably hurt the worse (after the headaches of course). I have both numbing feelings and pins and needle feelings in my feet. My balance is off quite a bit and the weakness (and lack of energy) is overwhelming. I’m 44 years old and my whole life I’ve been told I have congenital nystagmus (involuntary rapid eye movement). The neurosurgeon said there is a 50/50 chance that the surgery could fix this problem, as it may be due to CM and not nystagmus at all. My neurosurgeon told me that he runs from surgery with CM patients because it’s a pain in the butt with lots of risks involved. However, he stated in my case that although it is ultimately my choice, he strongly recommends surgery. My father is a retired physician as well. He spoke with the surgeon, and then told me that although the surgery is very invasive in my case, he believes the surgeon is correct. As well, my surgeon stated that he will bring a second neurosurgeon in for the surgery who specializes in Pediatric CM surgeries. Not to be mislead by the “pediatric” part, he believes that there is a much higher percentage of success with both of them performing the surgery. Wow…just writing all of this out is making me nervous. It still hasn’t sunk in all the way, but every day it becomes a little more real. I’m not so much scared of something going wrong and I don’t pull through the surgery. I’m more scared for my daughter if anything at all. She’s only 7, and I don’t want her to have to grow up without a father. Also, what really scares me is not death, but rather being incapacitated or having severe loss of motor skills and/or speech. That’s a terrifying thought for me. I know I shouldn’t think negatively, but I also have to be real and accept that there are real risks involved. On a positive note though, if this surgery would only correct half of my symptoms, I would look at it as nothing short of a miracle. My life has been miserable for many years due to the pain I go through each day. I’ve actually been treated as having fibromyalgia for the past year or so before being diagnosed with CM. very few people look at fibromyalgia as something that is real. Most view it as a made up disease for people who are lazy and don’t want to work and such. So many people have doubted me over the years, including many family members, my colleagues and close friends. I’m about to lose my job if I’m not back to work within 5 months. That’s a scarey thought. I’ve been on sick leave for 7 months with very little to no income. I will lose my medical insurance if I’m not back within 5 months. I don’t even know how I’m going to pay my mortgage and the rest of my bills this month. Yet, people still think I’m just making this crap up. It’s just all too real, and I’m having a very difficult time coping right now. Well, Im sorry. I didn’t mean to go on a rant. I do greatly appreciate the opportunity to vent, and I thank you so much for the prayers. Yall are in my prayers as well, and I hope the second surgery will greatly improve your life Deena. God bless the both of you.
Trever… Your symptoms are much like mine! If the doctor says surgery even though it is rough recovery you better do it! I waited too long and have some perminate vision and memory loss! You must use a doctor you trust and I would only use one that does these types a lot!!! My neuro doctor here in Texas was wonderful he just doesn’t do follow up chiari care. People don’t know about chiari nor understand it! I understand about your daughter that is why I waited as long as I did to have mine because of my kids and almost died by waiting!!! Prepare though I could lay on the side of my head without pain for a long time after surgery and I know everyone is different I’m dreading what they might want to do next but I can’t keep going like this! Lots of people with this condition are on disability! I just don’t know how to go about getting it! Good luck to you
Thank you for the advise Deena. I appreciate it more than I can express in words. You will be in my prayers. God bless you.
Trever
Your symptoms are worse than mine. I’d have the surgery. I sometimes get headaches, vision abnormalities, and pins and needles but I’m not at the point where it is effecting my quality of life. Looks like yours is! Keep us posted
Thank you for the advise James. I really appreciate your kindness and support. God bless you.
Trver
the difference between 24mm an 7mm is about a 1/4" a 4mm slice on an MRI is almost undiscernible. so the difference could even be less..... The point is this truly is one of the instances where size isn't the worry.............
Ti, thanks for responding. I greatly appreciate it. I’ve had a few others tell me the same thing. However, I’ve had a few that have told me that it does matter. In the end, I guess what truly matters is that my neurosurgeon has said that he only recommends surgery if it is absolutely 100% necessary. In my case he states that it is very necessary. I’m a bit nervous about it. Everyone has stated how difficult the recovery is in the first month, and I’m just not looking forward to it. On the other hand, I just want to get to it and get on with it. I just can’t live like I do now. It’s a miserable existence. If the surgery would only relieve half of my symptoms, I would consider it a miracle. Again, thank you so much for responding. It truly means a lot to me.
Hey Trevor, Just reading posts and ran across yours today. I know it is an old post but wondered if you had the surgery yet? Just wanted to tell you a little bit about my experience in hopes that it might ease your mind a little.
I was diagnosed at 14 years old and I am 54 now and working full time. It hasn’t been what i would call easy at all, because mine Chiari was Type 2 and accompanied by Hydrocephalus. Actually had 2 surgeries for the Hydrocephalus. And when it was discovered at 18 that the shunt was not enough, I had the Craniotomy I had very bad Balance all my life and was told by my doctor that I would have to have therapy after the Craniotomy in order to retrain my brain on how to walk a straight line. I managed to get through that and pretty much keep the whole thing secret from anyone that didn’t know me back then. So it has been a secret for 40 years. I swept it under the rug with my Family and Friends as soon as I was able to take the bandage off. So I went on with my life and muscled through any challenge I was faced with and no one knew… catching my theme here lol? Although it worked well for me, I wouldn’t recommend it for anyone else to keep it isolated like I did. You see I have spent most of my life not letting anyone in or even know about that time of my life. That meant that I spent a lot of my life alone. You can’t keep big secret like this if you go out around people on the bad days.I have recently started going to Church and have made a lot of wonderful friends, but I have my walls up with them as well. I feel so guilty for that, I feel that to have a real friendship you have to take the walls down. But it has been too long for me and the walls are too high. But they accept that I have bad days and don’t ask questions except “Are doing ok?” or something similar.
I guess what I am trying to tell you is you can live a good productive life after the surgery, you can be part of your family and part of your Church (if you have one) but don’t do things the way I did. The walls are way harder to tear down than they were to construct.
When I was younger and stronger I muscled through but the older I get the harder it is to hide my balance issues and such, the more I want to tear the walls down, but that is something I fear I will never be able to muscle through.
And for 40 years I had no one to talk to about it, by now I am sure that family and friends have long since forgotten what my diagnosis’s even were. That just adds to the isolation that I created a long time ago.
To sum it all up, It is not a death sentence at all, but after the surgery you need to stay honest about everything.
Hello dekabe! Thanks for taking time to respond to my post. It truly means a lot to me. One’s time is one of the most precious gifts you can give to someone. Thank you again!
I’m about 4-5 weeks post op on my second decompression surgery in the past year. The first one didn’t work well. This go around the surgeon opened up the dura and sowed a patch in. I fear that this one isn’t working tho. I’m certainly going to remain confident, but I sort of know. I have the same pain and feelings that I’ve had for years. It’s very debilitating.
I’m sorry you went through this alone. I sort of understand how you must have felt because it took over 2 years for me to be diagnosed. Simply put, no one believed that there was anything wrong with me. Even my father (who is a doctor) didn’t really believe me. I mean no one did though. But I kept going until I finally got a neurologist to send me for an MRI. I think a lot of people still feel guilty, but that’s a whole other story!
I’m not sure what happens next if this one doesn’t work, but keeping my faith in Christ is very important. It’s amazing that you found God throughout your experience. I do have a church that I go to, although I’m looking to change to a different church after nine years at my current church. Again, that’s a whole other story! Right now, it’s just very comforting talking to people who know and understand what I’m going through. I’m very grateful to all of you that have responded to my post.
Anyway, I’m off to get my child to bed, but I will certainly write again and share a bit more of my story. In the meantime, you need no walls to speak to me! So please feel free to write anytime. Keep your faith and work on finding someone at church that you may trust enough to tell your experiences to. In the end, I think you will find that amazing things happen when you keep your faith in Christ. As I’m writing this, I realize that I haven’t exactly been open with my church family, and haven’t attended church in a few months now. I too don’t like people seeing me hobbling around. However, all the support we need is right in front of us. We just have to open our hearts and walk through the door!!
Goodnight for now,
Trevor
Hey Trevor, Really good to hear that you got my reply.
I am so sorry to hear that you have had to go through that twice and it is still not taking care of the pain. I know what you mean, it can be debilitating. I have become very good at faking it but I have a couple friends who have figured things out on their own sorta and can tell when I am not having a good day. But I do my best to hide it still.
I think being 14 when I had my first surgery, I was just a kid that wanted desperately to be like my brothers and sisters… Normal. So it was imperative to me that I swept it all under the rug and truth be told, my family was more than happy to let me do that. When you said that you hope I can find someone at Church that I can open up and be honest with, it kind of struck a cord with me. There are several people that I want to be completely honest with, but every time I say I am going to talk to one of them, I choke and smile and say “doing Great”
The main thing that brought my parents to take me to my family doctor was that I had balance problems my whole life but they thought I was just clumsy. hahaha Then I told them that I was having double vision they said ok your going to the Doctor. Well for some reason our General practitioner did a couple physical tests and sent me to a Neurologist and within the Month I was having my shunt installed. So it makes me angry when I hear that people have so much trouble even getting someone to believe them. I didn’t really start building the walls that kept people away until I had the caraniotomy (decompression surgery). If I were to start being honest I feel like it would be a kick in the teeth to my family and best friends because I kept huge secrets from them all my life.
In some ways going to Church, being baptized and being very involved in the Church… behind the scenes involved is the most uncomfortable thing I have ever done. Please let em explain, I wouldn’t change a thing, but all my life I have done life alone and never felt the pull to be honest with anyone. But I am in a great Church family now and I am not doing life completely alone anymore, so I feel like I am lying when they give me hug and say how are you, great to see you and I smile and give them the standard “doing Great and smile” when all the while I am wanting to just tell them the truth.
I wish that I would have found a site like this way back then, but there was no internet. hahahaha I wish I would have been involved with the Church and had a personal relationship with Christ way back then too. Maybe I would not have so many secrets.
I really don’t have any natural balance, so for me it is either keep moving or sit down or lean. I can’t just stand in one spot for very long it is exhausting because my muscles are what keep me standing, not balance. If the lights go out, I have to be holding on to something or I start weaving like I am drunk or as you said “hobbling around”. My biggest worry is that one day they will think I came to Church wasted. You are right, all the support we need is right in front of us. i just don’t know how to start. haha
Well Trever, please feel free to keep telling me more of your story anytime you want to. I hope I didn’t bore you with the last two messages. I always fear that too. Being honest and then having someone start thinking ok, that is way more than I ever wanted to know. hahahah
I will pray for you and I hope you have a good day tomorrow.
I’m happy I’m not the only clumsy one! Everyone thought that because I did everything fast this is why I was so clumsy.
Hey Trever, Just wanted to drop a note and see how things are going for you.
Hope you’re doing well. Dennis
(dekabe)
Hey Dennis! Good to hear from you again! I’m hanging in there. I thought I was making some progress, but I’ve had a pretty rough week. As weird as it may be, I have developed new symptoms since the last surgery. My ears are partially clogged on a continual basis. Feels like when you get water in yours ears and you’ve got almost all of it out but the last little bit. It’s driving me crazy!! Also, each morning when I wake up, I feel like I have the flu really bad. I can usually correct that by taking my meds, but it usually takes a few hours to clear up. Needless to say, it’s a tough way to wake up every morning! I have another symptom that I didn’t have prior to the second surgery as well. I can’t describe it very well though. It’s a weird kind of pain in between my shoulders on the back side. It usually comes about with even the slightest couch or sneeze, or some other kind of minor strain.
I know all of what I just described are documented symptoms of Chiari. However, I didn’t have these particular symptoms prior to the second surgery. Pretty weird!! I’m still having balance issues as well, but I think I’m making some progress there! For now, as long as I have something to hold on to, I’m good!! On a positive note, those short and extremely powerful headaches that I get seem to be gone!! I haven’t had one in two weeks now, which is a massive improvement over the 10-15 that I use to get each day.
Brother, I appreciate you checking in on me! I truly do. Many of my family members, friends and co-workers are back to not believing that there isnt anything wrong with me. It’s like they think I let doctors cut open my brain twice just for the hell of it. That hurts even more than the physical symptoms I have. So again, it’s just awesome for me to have someone to talk to. It means a lot brother.
Well, enough of my crap. How are you doing man? I hope all is well for you and your family! The holidays are here and as much as I enjoy them, they can be a bit stressful as well! However, I love the Fall and winter. The college football season and Christmas are just absolutely my favorite times of the year! Are you a gator fan? I’m a big time LSU fan here!!
Btw, my real name is Cole. Trevor is my middle name and I use it for security purposes at times. Looking forward to hearing back from you brother.
Cole
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Tazz, you are definitely not alone in the “clumsy” department!! I’m still working on getting my balance back. I had a second decompression surgery on September 16th, and I still have to hold on to someone or something most of the time I’m standing!! It’s all good though!! I’m making progress, and hopefully you are / will too!!
Hey there Cole, Really great to hear from you!! I kind of thought maybe I was too honest about my health… haha. That is why I don’t talk to anyone about my Chiari / Hydrocepahalus. I never have so I am not even sure what I should and shouldn’t say. So I was a little surprised to hear from you. I understand the security thing. My dekabe is actually my initials spelled out DKB. I feel like I know you a little now so please continue to use my name Dennis. I am so sorry to hear of the symptoms you are experiencing. I have had all of those at different scales throughout my life, but the ear pain and neck pain were something that subsided for me after I regained more mobility in my neck a few months after surgery. I am hoping and praying for that it is the same for you.
But you can’t imagine how happy I was to read that you have not had a headache in 2 weeks!! That is amazing!! I still get them a few times a week but have been dealing with them for a long time, so what for me is a bad headache, some people would call a migraine. To not have one for 2 weeks is so awesome. You have enough to deal with on a daily basis. Your balance does sound like mine when I had the surgery in 1980. I was in therapy for a long time and my Doctor really didn’t want me to leave the hospital when I did until he found out that I would not be home alone and that our house was arranged that I would have something to grab on to (furniture) the entire way through the house. I still basically have no natural balance, it was all learned in therapy. But that was over 40 years ago so I am a good actor. But when I am alone, I relax and it is not good. I bump into things … Archways, Furniture, walls. I would be so embarrassed if anyone were to see that. It isn’t horrible, but enough that people would think I had been drinking all day. Lol
Do you mind if I ask if you can explain the flu thing a little more? I have to be at work at 8am but get up around 4:30am just to try and get things straightened out before I risk getting in the shower. I start out kind of dizzy and a little disoriented. So I was wondering if it was something like that or worse yet. And yes, I did say a prayer for you today. I think we all need someone to do that for us. I for one have difficulty asking for prayer from anyone, because that would raise questions and I still can’t talk about it. It is so great to have someone to chat with that is living the same thing that I am and understands. Don’t get me wrong, I would much rather not have you or anyone deal with this. But I am glad that I ran across your post. It pains me to think that your family, friends and co workers have that type of view of your Chiari. For me, I guess that is one of the things I am worried about, if I would sit and have an honest talk with my family. And tell them I have kept my whole life difficulties a secret for so long, are they just gonna roll their eyes and think I am looking for pitty. They know about my surgeries obviously, and they were harder on them than they were me at the time. But, They think they miraculously fixed everything. Or will they be angry that I deceived them all these years? Tough thing to decide what to do. It isn’t their fault, I let them and actually made sure that they thought that everything was permanently reversed after my surgery. I really don’t follow football or any other sport for that matter, My dad and brothers were not big into sports and I was not even allowed to take Gym in school because of Asthma, then because of the Chiari and Hydrocephalus. So sports were never a real part of my life. I like all the seasons but winter. lol I like winter but a slip and fall can really play havoc on my head and has for months at a time in the past. So the older I get the more freaked out I get about ice. If it is just cold, bring it on!! hahaha I really enjoy the Holidays, but they are different since both of my parents have passed away. I am single and always have been besides dating now and then, but how can it be anything more when you don’t let anyone “in” right? I still see my siblings, but it is more like just popping in for visits here and there and visiting on Holidays and on Christmas eve and Christmas day. We get together on Christmas eve for Services at my (our) Church and have created a new tradition of Denny’s for dinner afterward. Hahaha We get a kick out of it so it is a funny tradition. Then we go about our own things. I like that because I have the week off at Christmas. I have managed to get 3 of my 5 siblings to start attending My Church and 2 of them have gotten Baptized.
I really hope to hear from you again!! Please don’t get too down about things, it won’t do any good for you and this is something that people can’t see so they will never truly understand it.
And don’t worry you can talk to me about anything, I have been through it all so nothing surprises me or frightens me. Dennis