Hope this is the right section for posting this. My child is soon to have the Chiari Decompression at Childrens Hospital Boston. Type 1 although initally graded a 4 on scale of 10 her symptoms have been worsening not controlled well with medication.
Would really appreciate hearing from anyone that has had a procedure most especially if it was performed at the Childrens in Boston.
Thanks All
I’m scheduled for surgery on feb 19 and am getting very nervous and wonder if I’m doing the right thing. I don’t see very many positive experiences. Where can I find stories about surgery and post op life?
Rach
Emmaline said:
Hi! Many of us have had surgery and we can let you know if that’s what you want. Have you joined the Parent Group here? There may be more information to share from other parents.
http://www.chiarisupport.org/group/chiariandparenthood
If you want to hear surgery stories in all, let us know!
Hi Rachel,
Thanks for writing. It is nerve wracking I agree. Facing surgery is always nerve wracking. Where are you having it done? What I just did is in the top right search bar of this page was enter the phrase post op and read thru the articles that came up. I had also googled chiari decompression positive outcomes. It is scary to pull up only the negative aspects. One article I read gave me many good pointers- The woman was looking for a neurosurgeon that specialized in chiari and narrowed her search down to 2. With each she called the doctors office and asked how often the doctor performed the surgery. And then she met with each. The first surgeon she met had no bedside manner and she felt uneasy with him. The second surgeon she chose she had to wait a month to see however he was a high rated surgeon in the field. When she met him he put her mind at ease answered all of her questions and even post op would personally take her call regarding any symptoms she had. Maybe it would help you to write down the thoughts that are making you feel hesitant and then use them as your guide...Whatever you decide please feel free to write to me anytime...
I am having my surgery in houston, tx. I am blessed in the sense that I am an RN and work for a neurologist and she sent me to who she thinks is best. I had an evaluation with him and I love him, he had wonderful bedside manner and was so knowledgeable and made me feel comfortable in his skills in this area. He does specialize in Chiari. I also had a 2nd opinion with Dr Yeh who was recommended by the chiari foundation, he is also in Houston. I told him why I was there and he said absolutely go with Dr. Parrish. He said Dr Parrish is actually his mentor and if he has any problem cases, he is the one that he consults with. If he had to have the surgery he would have Dr. Parrish do it. Dr Yeh also said that he doesn’t suggest surgery lightly. At this point, I am struggling with feeling too well for the surgery if that makes sense. My symptoms include daily headaches, which can get pretty bad, dizziness, and numbness and tingling in my arms and legs. On my C-spine MRI it actually shows that my spine has curved to compensate for not having any space, but I function. I work full-time, I am a mom, and I’m a type a very active person. I kind of feel like I can deal with everything, although my symptoms are getting worse. I don’t want to get to the point of severe issues that can’t be fixed. But on the upside, I think that is my positive going into the surgery. I am not that bad, in my eyes. This is something I’ve been dealing with for nine years and just compensated for it. I can’t afford not to work and have 3 small children, but I’m also tired of telling my children we can’t go to the park bc I have a headache and don’t feel well. I just hope I’m doing the right thing. Thank you so much for your response. I’ve been holding this in…
Hi Rachel,
Thanks for writing. It is nerve wracking I agree. Facing surgery is always nerve wracking. Where are you having it done? What I just did is in the top right search bar of this page was enter the phrase post op and read thru the articles that came up. I had also googled chiari decompression positive outcomes. It is scary to pull up only the negative aspects. One article I read gave me many good pointers- The woman was looking for a neurosurgeon that specialized in chiari and narrowed her search down to 2. With each she called the doctors office and asked how often the doctor performed the surgery. And then she met with each. The first surgeon she met had no bedside manner and she felt uneasy with him. The second surgeon she chose she had to wait a month to see however he was a high rated surgeon in the field. When she met him he put her mind at ease answered all of her questions and even post op would personally take her call regarding any symptoms she had. Maybe it would help you to write down the thoughts that are making you feel hesitant and then use them as your guide...Whatever you decide please feel free to write to me anytime...
As moms I think we do put ourselves last and see surgey as a last resort. We have daily demands to meet and if its not broke why fix it? One thought maybe a consult with your surgeon before your surgery? Some questions that come to mind when I read your comment- 1- Are there any other medications that might manage your headaches more effectively?
2- Do you have time to try and manage your symptoms better before performing surgery?
If he is top notch in his field he would be the best person to ask these questions of as he has probably seen the outcomes of both patients that waited and those that scheduled surgery before exploring all options. No harm in explaining you are a mom that needs to be functioning for your children and if better medication can help you avoid surgery for a bit what does he foresee as issues in this case?
In addition to the Chiari Decompression nuerosurgeon you may want to think about consulting with a spine injury specialist. The numbness and tingling sounds like a sure sign of nerve compression, which could worsen and become irreversible. My thinking is that a spine injury specialist could also provide you with more practical information to consider.
Dont worry yourself too much that you will insult your chiari ns, no doubt he will respect that you are taking the time to be 100% certain as far as the demands you will face as a mom recuperating.
Thank you for sharing these positive here Emmaline!
Emmaline said:
Rachael there are so many success stories! Granted, a lot aren't on support forums, but they are out there. My NS stated that his success rate is 80%. And you have to factor in how long was the herniation there? Herniation for extended periods of time may result in some damage that cannot be reversed. But it stops any progression. I was basically bedridden prior to surgery, and at 7 mos post op I'm still improving, up and about living life. I know a couple of woman that I connected with on another board and they are doing so well! They pass me info all the time to assure me that I'm still healing and changing.
I had some extenuating circumstances with my family that probably delayed my recovery some, but I'm working through that.
Thank you everyone for such wonderful responses! I have an amazing husband and support system. My mom will be staying with me for at least a month, or until I get back on my feet.
These kind words are very reassuring!
I have had the surgery, back in Aug '09 (different hospital and I'm an adult, but I'll share my story)
I went in on a Wed, Aug 19. Had to be there at about 6 am, was called back to a pre-op area where they weigh you, check your temp, get you into your gown, etc. This is where the surgeon comes in and talks about the procedure, you go over what to expect immediately after and how the family will be updated, etc. Then I saw the anesthesiologist, who went over what I should expect as far as anesthesia. I was also given a Picc line, at this point, which is a more extensive IV and was sort of uncomfortable. More so than any regular IV I have had, but I handled it fine. I did a bit of waiting with my husband before they called me in for my surgery, probably about 15-20 minutes. Honestly, I think this time made him more nervous lol. But I really felt ready and ok about it, I wasn't having any anxiety about it. They did offer me something to calm me but I didn't feel I needed it.
They eventually called me back and my husband had to leave, man...that was hard, I felt so bad for him because I knew being in his position was much worse than mine. I was going to be asleep for the next few hours, he was going to wait and wait and wait.
In the OR, which was pretty cool actually, they attached a bunch of electrode things to my scalp for reading my brain waves during the surgery, put long compression socks on each of my legs and did a bunch of other stuff around me but I can't recall exactly what. There are a lot of people in the room during the surgery, at least for mine there was. I was at a teaching hospital, so my operating room was a theater type where people could watch through a glass window, from a balcony area (my description is obviously layman terms, sorry if I am not using the correct terms I am going by memory). It's very busy at that point. Last I remember, they were asking me if I was nervous and I said something like "no, are you?" And they laughed and I was out.
My surgery lasted about 4 hours and then I was taken into recovery. During the surgery, the way our hospital is set up there is a wall in the family waiting area with last names of patients on a digital screen and right next to your name they have the status of your surgery. Like 'prep' or 'in OR' or 'finishing up" or 'in recovery room'.
My doctor sort of scared the crap out of my husband because he noticed that most of the time a nurse would come out and tell the family how the surgery went and when they could come back to see their family member. Well, a nurse came out and asked for my husband and told him to 'come back, the doctor wanted to speak to him" OMG, he about had a heart attack. There wasn't anything wrong, my surgeon told him he liked to be the one to talk to the family immediately afterward to let them know how it went and give them an opportunity to ask questions. LOL, I can only imagine how much that would have sucked.
I woke up in recovery and I won't lie, I was in a significant amount of pain at this point. I don't know how they do it elsewhere or with children, but in my case they told me beforehand that I would not be receiving pain medication immediately after waking up until they could assess my neurological function. Ok, that was not fun. But it didn't take long before I was blissfully pain free. I felt sort of shaky and they covered me with lots of warm blankets.
I was taken to an ICU step down unit room and they let my husband and kids come in and see me for a few minutes and then shooed them out to get me settled. My family came back in and visited for a while. My husband was concerned because every now and again I would have like a muscle spasm or something and jerk really hard, while he was holding my hand. It was perfectly normal. Expect some weird stuff at first, it takes a while for the brain to bounce back. I was definitely sore that first night and kept falling asleep and waking up to be in pain and then would push the pain medication button and have to wait for it to start working.
I remember at one point, there was another woman in the bed next to me and I heard her call the nurses station and say "I think the girl in the room with me is in pain because she is moaning" LOL, she was talking about ME! LOL, I didn't even know I was making any noise. That was kind of embarrassing.
The next day was significantly better!!! I was pretty drugged up but that was exactly what I needed to be. I felt like that day was pretty much pain free. Of course my neck was stiff, but I was definitely on the road to recovery. I found myself falling asleep on my visitors and really wasn't much company, lol. I didn't have ANY appetite in the hospital. None. As a matter of fact, I had to force myself to eat breakfast the second day because they told me I was going to be discharged until I ate something. They took the foley catheter out the second day so I could get up and walk to the bathroom to urinate. That was weird, I was totally dizzy. On Friday morning Aug 21, two days after coming into the hospital and also my 43rd birthday, my surgeon came in and asked me if I wanted to go home and I said YES!! I was so happy to go home. I had only one more test to pass and that was with the physical therapist. If I could walk down the hallway and back, up a few stairs and down and turn my head a little from side to side. I passed and went home.
I hardly remember the first two weeks, they are a blur because my husband was very good about making sure I took my pain medicine and muscle relaxers on time. I had a textbook surgery and a perfect recovery, not infection or anything. I didn't even go back at the one year mark for a follow up because I felt better than I had in YEARS. I remember the first headache I had post op and it was not a Chiari one, it was just a garden variety normal headache and was relieved easily with tylenol.
I did have a lot of brain fog for a while and it took 1.5 years for my hair to grow back completely. I didn't drive for about 3 months because my neck was pretty stiff. One thing I would have done differently is ask for physical therapy for my neck muscles. I think it would have helped me heal more quickly. I felt like myself about 6 months post op. I know that seems like a long time and every day I felt better but this is a really major surgery.
Now, three and a half years later, I am having some Chiari type headaches again and some tingling in my hand and swallowing issues. I am seeing my surgeon on Tuesday, hoping this isn't a Chiari thing, hoping it's the herniated disc issue I was aware of before my surgery that he told me I may end up having to do something about down the road. I am not as bad off as I was before my surgery, So I am hopeful that this is just a minor bump in the road.
I would definitely do the surgery again, if need be. It was worth every second. I could not remember a day where I didn't have a headache for YEARS before my surgery. I had three solid years headache free, so it was definitely worth it to me.
Not sure if this was what you were looking for, but I know I combed the net for as much surgery info as I could get before I went in, so I wanted to give you my experience. Sorry so long winded lol.
I wish your daughter the best of luck and {{{HUGS}}} to you. I can only imagine how hard it would be to watch a child go through this. You will be in my thoughts and prayers.
Wendy
Wow, I am so sorry my post was so long. I took up like a whole page. I should learn to get my point across with less words lol
(correction, mine wasn't a picc line, it was an arterial line)
Please don’t apologize! I can’t tell you how helpful and reassuring your post was! I even passed it along to my husband and mom. Thank you for being so wonderful!
Thanks so much for taking the time to share your story Wendy. I feel like I was with you postop! Excellent writing. And for the kind words for my daughter. I hope that you get relief of your headaches soon and come back to share how things went.
Wendy said:
I have had the surgery, back in Aug '09 (different hospital and I'm an adult, but I'll share my story)
I went in on a Wed, Aug 19. Had to be there at about 6 am, was called back to a pre-op area where they weigh you, check your temp, get you into your gown, etc. This is where the surgeon comes in and talks about the procedure, you go over what to expect immediately after and how the family will be updated, etc. Then I saw the anesthesiologist, who went over what I should expect as far as anesthesia. I was also given a Picc line, at this point, which is a more extensive IV and was sort of uncomfortable. More so than any regular IV I have had, but I handled it fine. I did a bit of waiting with my husband before they called me in for my surgery, probably about 15-20 minutes. Honestly, I think this time made him more nervous lol. But I really felt ready and ok about it, I wasn't having any anxiety about it. They did offer me something to calm me but I didn't feel I needed it.
They eventually called me back and my husband had to leave, man...that was hard, I felt so bad for him because I knew being in his position was much worse than mine. I was going to be asleep for the next few hours, he was going to wait and wait and wait.
In the OR, which was pretty cool actually, they attached a bunch of electrode things to my scalp for reading my brain waves during the surgery, put long compression socks on each of my legs and did a bunch of other stuff around me but I can't recall exactly what. There are a lot of people in the room during the surgery, at least for mine there was. I was at a teaching hospital, so my operating room was a theater type where people could watch through a glass window, from a balcony area (my description is obviously layman terms, sorry if I am not using the correct terms I am going by memory). It's very busy at that point. Last I remember, they were asking me if I was nervous and I said something like "no, are you?" And they laughed and I was out.
My surgery lasted about 4 hours and then I was taken into recovery. During the surgery, the way our hospital is set up there is a wall in the family waiting area with last names of patients on a digital screen and right next to your name they have the status of your surgery. Like 'prep' or 'in OR' or 'finishing up" or 'in recovery room'.
My doctor sort of scared the crap out of my husband because he noticed that most of the time a nurse would come out and tell the family how the surgery went and when they could come back to see their family member. Well, a nurse came out and asked for my husband and told him to 'come back, the doctor wanted to speak to him" OMG, he about had a heart attack. There wasn't anything wrong, my surgeon told him he liked to be the one to talk to the family immediately afterward to let them know how it went and give them an opportunity to ask questions. LOL, I can only imagine how much that would have sucked.
I woke up in recovery and I won't lie, I was in a significant amount of pain at this point. I don't know how they do it elsewhere or with children, but in my case they told me beforehand that I would not be receiving pain medication immediately after waking up until they could assess my neurological function. Ok, that was not fun. But it didn't take long before I was blissfully pain free. I felt sort of shaky and they covered me with lots of warm blankets.
I was taken to an ICU step down unit room and they let my husband and kids come in and see me for a few minutes and then shooed them out to get me settled. My family came back in and visited for a while. My husband was concerned because every now and again I would have like a muscle spasm or something and jerk really hard, while he was holding my hand. It was perfectly normal. Expect some weird stuff at first, it takes a while for the brain to bounce back. I was definitely sore that first night and kept falling asleep and waking up to be in pain and then would push the pain medication button and have to wait for it to start working.
I remember at one point, there was another woman in the bed next to me and I heard her call the nurses station and say "I think the girl in the room with me is in pain because she is moaning" LOL, she was talking about ME! LOL, I didn't even know I was making any noise. That was kind of embarrassing.
The next day was significantly better!!! I was pretty drugged up but that was exactly what I needed to be. I felt like that day was pretty much pain free. Of course my neck was stiff, but I was definitely on the road to recovery. I found myself falling asleep on my visitors and really wasn't much company, lol. I didn't have ANY appetite in the hospital. None. As a matter of fact, I had to force myself to eat breakfast the second day because they told me I was going to be discharged until I ate something. They took the foley catheter out the second day so I could get up and walk to the bathroom to urinate. That was weird, I was totally dizzy. On Friday morning Aug 21, two days after coming into the hospital and also my 43rd birthday, my surgeon came in and asked me if I wanted to go home and I said YES!! I was so happy to go home. I had only one more test to pass and that was with the physical therapist. If I could walk down the hallway and back, up a few stairs and down and turn my head a little from side to side. I passed and went home.
I hardly remember the first two weeks, they are a blur because my husband was very good about making sure I took my pain medicine and muscle relaxers on time. I had a textbook surgery and a perfect recovery, not infection or anything. I didn't even go back at the one year mark for a follow up because I felt better than I had in YEARS. I remember the first headache I had post op and it was not a Chiari one, it was just a garden variety normal headache and was relieved easily with tylenol.
I did have a lot of brain fog for a while and it took 1.5 years for my hair to grow back completely. I didn't drive for about 3 months because my neck was pretty stiff. One thing I would have done differently is ask for physical therapy for my neck muscles. I think it would have helped me heal more quickly. I felt like myself about 6 months post op. I know that seems like a long time and every day I felt better but this is a really major surgery.
Now, three and a half years later, I am having some Chiari type headaches again and some tingling in my hand and swallowing issues. I am seeing my surgeon on Tuesday, hoping this isn't a Chiari thing, hoping it's the herniated disc issue I was aware of before my surgery that he told me I may end up having to do something about down the road. I am not as bad off as I was before my surgery, So I am hopeful that this is just a minor bump in the road.
I would definitely do the surgery again, if need be. It was worth every second. I could not remember a day where I didn't have a headache for YEARS before my surgery. I had three solid years headache free, so it was definitely worth it to me.
Not sure if this was what you were looking for, but I know I combed the net for as much surgery info as I could get before I went in, so I wanted to give you my experience. Sorry so long winded lol.
I wish your daughter the best of luck and {{{HUGS}}} to you. I can only imagine how hard it would be to watch a child go through this. You will be in my thoughts and prayers.
Wendy
Wendy I just found out I am having surgery as soon as my insurance approves it also. I have already had a craniotomy or a traumatic brain injury almost 2 years ago and I thought that is what my headaches and all my other symptoms were from. Well to my shock I have Chiari malformation and they want to do surgery sooner than later. I am scared to go through another brain surgery. The first surgery was an emergency so I didn't have to prepare myself for it, however, this one I am stressing myself out knowing I have to do have this done. It doesn't help I asked my surgeon if it is more painful than my 1st surgery and he said yes. I am so worried about how long I will be off work and the financial burden this is going to cause. I know this should be the least of my worries but I am a single mom and I am just getting on my feet again. Wendy you sure gave me some reassurance though! Thank you everyone for giving me some clarity on this!!!
Hi...
I hope you are doing well , under the circumstances you are under. I just wanted to share with you my experience with Boston Childrens Hospital.
My best friend has cystic fibrosis and had been treated there up until she rec'd a double lung transplant 9 yrs ago. BCH is THE BEST!!!! People come from all over the country for their services. Every time my friend was in the hospital(which was often and for extended periods of time) I was there to see her..all I can tell you is that the place is like a well oiled machine!
As far as my own surgical recovery..4yrs ago...overall it went without a hitch..no infections, no CSF leaks..do not get me wrong...it was painful..but the pain lessened with time. I did develop new symptoms after surgery but they only lasted a short while and NEVER returned.
My NS explained it to me like this.."You CSF has been not flowing right for your entire adult life, possibly, your entire life..so, it will take time for your body/brain to adjust to the new flow ..You may get new symptoms after decompression, but they will go away." That was basically what he said..
I am happy that he told me that..He was 100% right..I ended up being so dizzy after surgery that I had to use a cane. But that left me and has never returned.
From all I have read and from what others have shared with me...the younger folks bounce back much better than the people who have gone undiagnosed and treated for years..which makes sense when you think about it.
Pls keep us posted. When is the surgery??
Peace,
Lori
Thank you so much for your reassuring words! I’m 28 and was diagnosed 9 years ago. I’m scheduled for surgery on the 19th of this month. I was starting to get very scared bc it seemed i was only seeing horrible surgical results. I will take all the advice I can get on what to expect. Good luck to all! My prayers are with you!
Hi...
I hope you are doing well , under the circumstances you are under. I just wanted to share with you my experience with Boston Childrens Hospital.
My best friend has cystic fibrosis and had been treated there up until she rec'd a double lung transplant 9 yrs ago. BCH is THE BEST!!!! People come from all over the country for their services. Every time my friend was in the hospital(which was often and for extended periods of time) I was there to see her..all I can tell you is that the place is like a well oiled machine!
As far as my own surgical recovery..4yrs ago...overall it went without a hitch..no infections, no CSF leaks..do not get me wrong...it was painful..but the pain lessened with time. I did develop new symptoms after surgery but they only lasted a short while and NEVER returned.
My NS explained it to me like this.."You CSF has been not flowing right for your entire adult life, possibly, your entire life..so, it will take time for your body/brain to adjust to the new flow ..You may get new symptoms after decompression, but they will go away." That was basically what he said..
I am happy that he told me that..He was 100% right..I ended up being so dizzy after surgery that I had to use a cane. But that left me and has never returned.
From all I have read and from what others have shared with me...the younger folks bounce back much better than the people who have gone undiagnosed and treated for years..which makes sense when you think about it.
Pls keep us posted. When is the surgery??
Peace,
Lori
I just came home from surgery on Wednesday. There is pressure in my head/ neck is sore but already feel better. I can swallow now without feeling like I have razor blades in there. Doc said 85% improvement in my quality of life. That was a no brainer… Weigh all your options, listen to others but know even though we have chiari, we are still different in our bodies, support folks, and how we chooseto deal with life. Good luck…
Thanks for sharing Lori. So glad you are feeling better and for the good thoughts about BCH. How is your friend now she has been through alot. On surgery so confused at this point. Hers is 10-11 cm. First doc said she is 4 of 10 for surgery however another doc says surgery only option at this size. Right now managing with increase in meds second mri soon to see if it has grown stayed same. Not sure if the possible side affects chance that symptoms could worsen makes surgery the right way to proceed.
lori said:
Hi...
I hope you are doing well , under the circumstances you are under. I just wanted to share with you my experience with Boston Childrens Hospital.
My best friend has cystic fibrosis and had been treated there up until she rec'd a double lung transplant 9 yrs ago. BCH is THE BEST!!!! People come from all over the country for their services. Every time my friend was in the hospital(which was often and for extended periods of time) I was there to see her..all I can tell you is that the place is like a well oiled machine!
As far as my own surgical recovery..4yrs ago...overall it went without a hitch..no infections, no CSF leaks..do not get me wrong...it was painful..but the pain lessened with time. I did develop new symptoms after surgery but they only lasted a short while and NEVER returned.
My NS explained it to me like this.."You CSF has been not flowing right for your entire adult life, possibly, your entire life..so, it will take time for your body/brain to adjust to the new flow ..You may get new symptoms after decompression, but they will go away." That was basically what he said..
I am happy that he told me that..He was 100% right..I ended up being so dizzy after surgery that I had to use a cane. But that left me and has never returned.
From all I have read and from what others have shared with me...the younger folks bounce back much better than the people who have gone undiagnosed and treated for years..which makes sense when you think about it.
Pls keep us posted. When is the surgery??
Peace,
Lori