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Chiari Surgery
Hello. I am getting my chiari surgery on May 2nd, however after looking on here I am very worried. I only see negative comments, nothing positive. Can I return to work after 2-3 weeks? Am I still going to be in such tremendous pain? I will be going to a surgeon who has been in the practice for 40 years. I do not have a syrinx but I do have terrible headaches everyday. I also have neurofibromatosis and have a tumor in my spinal canal that is compressing my spinal cord. My csf flow is very minimal. I want this surgery to help me but now I'm freaking out due to all the negative comments.....
COMMUNITY LEADER
It is always good to know all these things even tho along the way they may not seem like a big part of our issue....
Good luck with the Neuro....
So I had an appointment with the ent and got referred to neurology lol! Anyways he did find that I do have a deviated septum though.
Yes I had an mri of my entire spine and my brain with as well as without contrast. I have poor csf flow. I want to check out an ent for my sinus headaches see if I need them drained and so forth.
COMMUNITY LEADER
Oh so u did have a MRI of the thoracic and lumbar spine as well as the cervical and brain MRI's?.....
I didn't have a syrinx, but I did have a CSF obstruction which would lead to the formation of a syrinx....we had one member on here at the time that had just the start of a syrinx....and most Drs were like just monitor it as a syrinx grows slowly over a long period of time....well not hers...in 6 months it grew so large and she had so many sudden new symptoms....so I decided to have surgery to prevent one from forming....as I was having drop attacks and was dealing with the symptoms as long as I could remember....
U have to be comfortable and confident in ur decision and ur Dr....so it is best to think on it and have more testing and research Drs a little more....u will know if and when the time is right for u.
Thank you. I have an appointment with an ENT in about 2 weeks. So that is when I will make my actual decision. I just don't want to take this softly. I want to be very certain and really really be sure that this is going to help! I do not have a syrinx so I am not sure that symptoms will actually get worse. I do have symptoms like most people on here complained about. So I am just trying to be certain!
COMMUNITY LEADER
Many with Chiari do have sinus issues as they are in close proximity of where much of the compression is from Chiari....since u have postponed for now, u may want to have the other testing done and it may help u feel better about the surgery.....
When u reschedule please post ur surgery date in the surgery date thread to have a prayer thread posted for u....
Keep us posted on ur progress <3
Thank you to all who have been giving me advice. I actually postponed it as of right now. I have been having terrible sinus headaches that will not go away and I need to figure out what is going on with them first.
My Dr actually told me that the surgery is up to me. He said he didn't believe it was an emergency or definitely needed. But he said I could be a candidate for it and thinks it could help me! So I'm still confused.
Thank you so much for your kind words! I just really pray that my recovery is fast and I can go back to work. I need money!!! I have bills, etc! Plus I love to work, I know its crazy but I do love to work lol
COMMUNITY LEADER
I agree with Lisa and I also feel u need to go in with a positive outlook....trust urself and ur Drs as this is what u need....I was scared too and wanted to jump off the gurney and leave the OR....but I also knew I was doing what I needed to do....it took a long time to get a DX and a longer time to find the right Dr...so I knew if I didn't have it I would be as square one, wondering what to do, when I knew.....
Hang in there and know u r not alone <3
Faith...
I thought the same thing too... "I don't know what to do", "what if this isn't it", "what if I don't make it" and on and on.... to the point of deep depression. So I do understand you. BUT the truth is this;
We DO know what to do, and we are doing it! The Chiari IS the problem. Most importantly, we are only defeated if we THINK we are!
Let me share something with you.... I have a friend I met on here actually. I won't mention her name but she was so sick, and suffering SO bad with the horrible headaches, body pain, numbness....etc. she ALSO had problems with csf filled cysts on her spine for which they operated!
Guess what? Even though her MRI clearly showed Arnold Chiari, the doctors told her she had ALS!!! (Lou Garrick's disease which is FATAL). So for the next month she got to believe she was dying a slow horrible death! I never believed the diagnosis only because I know Chiari causes ALL this! So she finally gets to see the ALS specialist, he does the tests the same day and CONFIRMS she does not have ALS. In fact, her symptoms are from her Chiari!
Although this is "rare", it's not as rare as once thought. We have a treatable condition! The surgery sounds scary as hell. But the truth is, in our case, it is much more of a neck surgery than anything else! They don't touch our actual brain! In some cases they may shrink the tonsils a little but not always! The biggest part of this is working on the bone to make a larger space. It is that simple. As far as "brain" surgeries go, this is NOT considered a major one!
Remember, you DO know what to do and you are doing it! Try to put this in some perspective if you can, I know it's hard. We need to be confident that we have made the best choices possible and that are risks are less than driving on the freeway. You will be fine and so will I. BELIEVE it. Lisa
I thought the same thing too... "I don't know what to do", "what if this isn't it", "what if I don't make it" and on and on.... to the point of deep depression. So I do understand you. BUT the truth is this;
We DO know what to do, and we are doing it! The Chiari IS the problem. Most importantly, we are only defeated if we THINK we are!
Let me share something with you.... I have a friend I met on here actually. I won't mention her name but she was so sick, and suffering SO bad with the horrible headaches, body pain, numbness....etc. she ALSO had problems with csf filled cysts on her spine for which they operated!
Guess what? Even though her MRI clearly showed Arnold Chiari, the doctors told her she had ALS!!! (Lou Garrick's disease which is FATAL). So for the next month she got to believe she was dying a slow horrible death! I never believed the diagnosis only because I know Chiari causes ALL this! So she finally gets to see the ALS specialist, he does the tests the same day and CONFIRMS she does not have ALS. In fact, her symptoms are from her Chiari!
Although this is "rare", it's not as rare as once thought. We have a treatable condition! The surgery sounds scary as hell. But the truth is, in our case, it is much more of a neck surgery than anything else! They don't touch our actual brain! In some cases they may shrink the tonsils a little but not always! The biggest part of this is working on the bone to make a larger space. It is that simple. As far as "brain" surgeries go, this is NOT considered a major one!
Remember, you DO know what to do and you are doing it! Try to put this in some perspective if you can, I know it's hard. We need to be confident that we have made the best choices possible and that are risks are less than driving on the freeway. You will be fine and so will I. BELIEVE it. Lisa
Thank you so much for all your kind words and advice. I'm just so scared and do not know what to do right now. I have bad headaches, get dizzy, and have body aches. I do have vision problems but I always thought that was due to poor eye sight.
I recovered pretty well after my daughter. I was able to fully move around like 2 weeks after and was sore for about 8 weeks but did fine. Thank you so much for your advice. I do also have neurofibromatosis where I have a tumor between c6 and c7 that is compressing my spinal cord and blocking csf flow. For right now they are going to leave it alone but monitor it every so often.
Faith...
I understand your concern. My surgery is May 12. I googled Chiari type 1 surgery positive outcomes and found pages of positive stories which has helped a lot. I have also reached out to many kind people and I find that most are more than willing to be supportive.
I can tell you that my daughter was a little younger than you with one set of twins at the time when she had to have the surgery. She had suffered for years with immense headaches, balance and vision issues and more. Her suffering was so great she became bed bound for the most part. She said she hated the world and wanted to die. She had type 1, 12mm herniation as well with no syrinx. She found Dr Oro who did her surgery. She woke up in the ICU and walked to the bathroom much to the nurses surprise. Her neck was sore, and she was nauseous. BUT, the pressure in her head was GONE, the pain, the balance and vision problems etc... GONE! She was discharged home in three days. She took it easy for a week. Week two she was taking care of the twins. Her husband was in the military and couldn't get any more time off. She also was back in her online college week two.
Now, ten years later.... She is still well. She is a cath lab nurse with two degrees and a genius IQ (ironically, failed the college entrance exam prior to surgery). She was nominated to be the lauriette educational ambassador for the US. She also has her SECOND set of twins! (C section).
She tells me she has accomplished every great thing in life AFTER her surgery. She truly loves and appreciates life and is so grateful.
She is a great inspiration to me. I can only hope to do so well, and I hope the same for you as well my friend! We have to stay strong and keep a positive attitude. We will be just fine. Especially once we are able to be off the narcotics, and there is NO reason to believe otherwise!!! Lisa
I understand your concern. My surgery is May 12. I googled Chiari type 1 surgery positive outcomes and found pages of positive stories which has helped a lot. I have also reached out to many kind people and I find that most are more than willing to be supportive.
I can tell you that my daughter was a little younger than you with one set of twins at the time when she had to have the surgery. She had suffered for years with immense headaches, balance and vision issues and more. Her suffering was so great she became bed bound for the most part. She said she hated the world and wanted to die. She had type 1, 12mm herniation as well with no syrinx. She found Dr Oro who did her surgery. She woke up in the ICU and walked to the bathroom much to the nurses surprise. Her neck was sore, and she was nauseous. BUT, the pressure in her head was GONE, the pain, the balance and vision problems etc... GONE! She was discharged home in three days. She took it easy for a week. Week two she was taking care of the twins. Her husband was in the military and couldn't get any more time off. She also was back in her online college week two.
Now, ten years later.... She is still well. She is a cath lab nurse with two degrees and a genius IQ (ironically, failed the college entrance exam prior to surgery). She was nominated to be the lauriette educational ambassador for the US. She also has her SECOND set of twins! (C section).
She tells me she has accomplished every great thing in life AFTER her surgery. She truly loves and appreciates life and is so grateful.
She is a great inspiration to me. I can only hope to do so well, and I hope the same for you as well my friend! We have to stay strong and keep a positive attitude. We will be just fine. Especially once we are able to be off the narcotics, and there is NO reason to believe otherwise!!! Lisa
I was back at work (light office, computer type stuff) after about 1.5-2 months. I was able to do stuff, but far from full healed. I'm 8 months post decompression and still fighting surgery/chiari related issues, but this is the beast. The biggest thing that helped me be able to get back to the office is one of the sit/stand desks so I can alter how I am working during the day thus relieving some pain. It's a very long road, but the best thing is to listen to your boady and what it is telling you to do. Keep up the hope!
I am very glad that I had the surgery. You can read my journal and my threads. Yes I had something's happen that was not normal but still would do it again. Far as being scared yes I was cause it is normal cause they are cutting on your head and spine. A lot of my symptom's are gone and some stayed around so to me it is worth it. If you ever need to talk hit me up, I will be glad. Good luck and keep us updated..
COMMUNITY LEADER
The thing is u can not compare ur self to others....I did not go back to work, but I am older then u,old enuff to be ur mom....and I did work up until I had surgery and I had symptoms my whole life...that said the longer u have symptoms the higher the chance for lasting effects or damage.
Plus, I have other conditions I still require surgery for....so that is y I did not go back to work....knowing ALL that is going on will better help u decide....plus, not having surgery if u have a CSF flow is really only playing Russian roulette....as u r gambling with the hopes u will not develop more severe issues or perm damage....my surgery was done as I not only had the HA's but I was having drop attacks....my CSF flow was obstructed and I did not yet develop a syrinx....so I had surgery to prevent one from forming....and I knew I could not continue to work the way I was....
U can always postpone it if u feel that reluctant.....
The receptionist job may be something u can go back to part time after a few months to recover...not sure when u could go back to the massage work.....
The thing is not having surgery may leave u not being able to work....just as having it could....as I said it all depends on u, ur Drs and how u recover....I have EDS which make healing a slower process for me.Knowing that b4 surgery is helpful....
U r young and should be able to bounce back better then someone my age or older....look at how u recovered from ur maternity leave....how was it for u, did u have problems?....Granted this is not the same, but it will show u how u handle pain and how long it takes u to recover.
Hang in there and follow ur gut...and have faith <3
My symptoms are really bad headaches that never go away, fatigue, and body aches, dizziness. The comments that are worrying me are the ones that say that they have never been able to go back to work. Or ones that say that they have been out of work for months, not being able to do what they did before and so forth. I need my job. I have to pay bills and so forth. I have a 3yr old daughter at home that I have to take care of. I am only 28 years old. I work as a medical receptionist right now and also do massage therapy on the side. If I will never be able to work again then I do not want to do this. I wish I looked into it more because surgery is on Friday!!!
Your name says it all! Just have faith! Everyone is different with this surgery. I had my decompression in July 2013. I do not regret my surgery because it relieved ALOT of my symptoms. But it is not a surgery that you will bounce back from in a couple of weeks. I am not able to do the things I use to do. My job consisted of sitting at a desk on a computer all day long, which I'm not able to do anymore. I have a lot of nerve issues in the back of my head and neck for which I am a member of pain management now. I drive sometimes but the mobility in my neck still does not allow sudden turns. You will do great! The good Lord is who has gotten me this far! Their is several support groups on Facebook that I have joined and I am blessed that my experience has been much better than some. I am disabled, others worse than me with multiple surgeries, some bounce back to work faster some never will. Prayers for you and your surgery for great healing my friend!
COMMUNITY LEADER
Here are a few threads I thought u might like to read....
http://www.medhelp.org/posts/Chiari-Malformation/POSITIVE-OUTCOME-AND-HOPE-OUT-THERE-FOR-ALL-OF-US/show/1450591
http://www.medhelp.org/posts/Chiari-Malformation/Positive-Update-/show/1868945
http://www.medhelp.org/posts/Chiari-Malformation/Sharing-a-positive/show/1566148
http://www.medhelp.org/posts/Chiari-Malformation/Decompression-surgery--need-some-positive-feedback/show/1437774
http://www.medhelp.org/posts/Chiari-Malformation/Just-diagnosed-yesterday---i-need-to-hear-some-positive-outcomes-of-the-surgery/show/1337780
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
Not sure where u see only negative comments but we do have plenty of positive ones here too.....
Back to work in 2 to 3 weeks....no
May I ask what negative comments are worrying u?
If u have a well informed and experienced Dr, one that ruled out ALL related and non related conditions ....u should be fine...surgery is not a cure and u may continue with some symptoms post op....
Not knowing what testing u had done....or symptoms u have had...but for the majority it can take several months to heal post op....and that is from the surgery....on the outside...the nerves can take up to 2 yrs to fully heal....and since we are all different healing times will vary.
But I never heard of neone going back to work...but I don't know what u do, but I was not to bend over to pick a piece of fuzz off the carpet...so hard to work when u have restrictions...
I had surgery this May will be 5 yrs and I have no regrets....I loved my Drs and the care I got....I am doing better since having it, and would do it again.
Being afraid is normal, I was very afraid....
Know u r not alone <3
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