Aa
Decompression Surgery Questions.
I am meeting with a neurosurgeon Thursday after being diagnosed last week with a Chiari Malformation. I want to have as many questions prepared as possible.
I completely understand that each person is different. The past few years I have had several surgeries but this is the most serious one. I know some have bad, average, and excellent experiences. I would like to hear any and all info you can give me. :-)
I *think* from what I have read that there are different ways doctors actually do the surgery. I have read that some open the dura and put some type of plate in?
1- In regards to cutting the "dura"...is this something that should be done? I know everone varies, but why do some surgeons do it and some do not?
2- The "plate"...what I mean is that they replace something, like the skull, that they have to remove. Do they always use a plate? Is it better to have one that not? Are there plates made from different materials? Any better than others?
My case management nurse from my health insurance company said that some doctors enter from the front (around your throat?) and some from behind.
3- What is the difference?
4- Would I have to shave my whole head?
5- Is there a big noticeable scar afterwards?
After surgery...
6- :-)
7- Will I be able to sleep on my back?
8- Will I be able to move my head? Will I have any special brace or bandaging?
9- How long will I be in the ICU?
10- How long until I'll be discharged from the hospital?
11- :-)
12- What kind of pain medications/pain control are used?
I know that it takes a while to completely heal. But...
13- How long before I should be able to resume normal activities?
14- I have young children (1, 1, 3, and 7), how long until I should be able to care for them without having help?
Anything else you'd like to let me know, I'd greatly appreciate it.
I apologize for so many questions. My husband works for the railroad and is away from home Monday-Friday of each week. We are trying to get some sort of idea what things will be like and how long he will have to take off of work. Our children weigh 30+ pounds so I know that it will probably be several weeks.
Thank you so much for any information you will share. You don't have to answer all questions :-) I am just hoping to get a good idea of what is to come.
Melissa
Chiari dx 09/09/08
Neurosurgery appt 09/18/08
I completely understand that each person is different. The past few years I have had several surgeries but this is the most serious one. I know some have bad, average, and excellent experiences. I would like to hear any and all info you can give me. :-)
I *think* from what I have read that there are different ways doctors actually do the surgery. I have read that some open the dura and put some type of plate in?
1- In regards to cutting the "dura"...is this something that should be done? I know everone varies, but why do some surgeons do it and some do not?
2- The "plate"...what I mean is that they replace something, like the skull, that they have to remove. Do they always use a plate? Is it better to have one that not? Are there plates made from different materials? Any better than others?
My case management nurse from my health insurance company said that some doctors enter from the front (around your throat?) and some from behind.
3- What is the difference?
4- Would I have to shave my whole head?
5- Is there a big noticeable scar afterwards?
After surgery...
6- :-)
7- Will I be able to sleep on my back?
8- Will I be able to move my head? Will I have any special brace or bandaging?
9- How long will I be in the ICU?
10- How long until I'll be discharged from the hospital?
11- :-)
12- What kind of pain medications/pain control are used?
I know that it takes a while to completely heal. But...
13- How long before I should be able to resume normal activities?
14- I have young children (1, 1, 3, and 7), how long until I should be able to care for them without having help?
Anything else you'd like to let me know, I'd greatly appreciate it.
I apologize for so many questions. My husband works for the railroad and is away from home Monday-Friday of each week. We are trying to get some sort of idea what things will be like and how long he will have to take off of work. Our children weigh 30+ pounds so I know that it will probably be several weeks.
Thank you so much for any information you will share. You don't have to answer all questions :-) I am just hoping to get a good idea of what is to come.
Melissa
Chiari dx 09/09/08
Neurosurgery appt 09/18/08
Haven't heard if you decided to do the surgery, if so how are you doing? Please let us know when you can.
Just thinking abot you!!
sissy114
Just thinking abot you!!
sissy114
Hello,
I'm not claiming to be an expert and, as others have mentioned, each situation is unique. So, I can only give you the answers as far as my surgery addresses them and my opinions and observations. With that little disclaimer out of the way:
1- In regards to cutting the "dura"...is this something that should be done? I know everone varies, but why do some surgeons do it and some do not?
*I can't really answer this one. Mine was cut, but I assumed everyone's was. I think the dural surrounds the brain. I would assume it prety much has to be cut to reach. But maybe I'm mistaken.
2- The "plate"...what I mean is that they replace something, like the skull, that they have to remove. Do they always use a plate? Is it better to have one that not? Are there plates made from different materials? Any better than others?
*They used a bonegrafting material (pericardial allograft) covered by a duroseal (a waterproof covering) and then a piece of gelfoam to cover the hole.
My case management nurse from my health insurance company said that some doctors enter from the front (around your throat?) and some from behind.
3- What is the difference?
*To this I have no answer. I'm not sure how they could work on the back of the neck and spine by going through the throat.
4- Would I have to shave my whole head?
5- Is there a big noticeable scar afterwards?
*4&5. They'll shave a section of your neck and posterior scalp, the size depends on how much room they need. I told them to go ahead and shave me bald if they wanted too (I'm a guy and we can get away with that a little better. You can see the size of my scar on my avatar). I've seen womens scars and they can mostly be hidden by hair. Mine can only be seen at the base of my short hair - maybe a couple of inches down my back, but that's covered by a shirt. The actual scar isn't very wide - just a few inches long. Are you having any syrinx work done? That could make for a longer scar.
After surgery...
6- :-)
* :D
7- Will I be able to sleep on my back?
8- Will I be able to move my head? Will I have any special brace or bandaging?
9- How long will I be in the ICU?
10- How long until I'll be discharged from the hospital?
*7 - 10 - The first few days in the hospital (you'll spend around 3 or 4 days - 2 or 3 in ICU then a day or 2 in a regular room) will be uncomfortable. You will be on your back and even the pain meds won't stop all the discomfort :(. But after a day or so, you'll start being able to move a little better and pretty much as soon as you are able to get out of bed (with assistance) they'll get ready to move you to another room. I had surgery on a Tuesday and went home Saturday. You shouldn't have any brace. They'll put a big bandage over the scar and you won't be able to get it wet for a few days - I used a shower cap for a little while. I don't remember exactly how long, but I remember being glad that I could finally wash my head :).
11- :-)
* :)
12- What kind of pain medications/pain control are used?
* You'll be given a nice supply of pain killers. I'm not going to lie about this - it's very painful and uncomfortable for a little while afterwards. Make sure you kep one in your syetem for a little while - it's much easier to control pain than stop it. The first day home, I was able to walk up a flight of stairs to my room (my brother followed me in case I fell or anything) I made it to bed and pretty much stayed there the next 2 days. I got up a little the second day, but not much. Then slowly over the next week I was able to spend more and more time up. My wife stayed home the first 2 days, then my sister (a nurse) came and stayed the next couple of days or so with me during the day. Unfortunantely, I caught a stomach virus, so my recovery was slowed - let me warn you that vomiting ater brain surgery *****!
I know that it takes a while to completely heal. But...
13- How long before I should be able to resume normal activities?
*Assuming no comlications, the timeframe I've heard is around 6 weeks until most peole can return to their jobs. I still haven't after 6 months, but it's looking like I have some permenant damage because mine was caught so late.
14- I have young children (1, 1, 3, and 7), how long until I should be able to care for them without having help?
* This one I can't really answer. Sorry. My son is 15. I've babysat my nieces and nephews and they were difficult to handle 3 months after surgery, but that's my case. Your's might be a lot easier. I doubt you'll be able to lift 30 lbs for quite a while. Anything that strains the musckles in your neck or but's pressure on your skull is BAD! You'll also have to go through some physical therapy to work on your neck muscles.
Hope this helps. As I said, these answers come from my experiance. Others (and yours) may, and probably will, vary.
Good luck and keep us in the loop.
I'm not claiming to be an expert and, as others have mentioned, each situation is unique. So, I can only give you the answers as far as my surgery addresses them and my opinions and observations. With that little disclaimer out of the way:
1- In regards to cutting the "dura"...is this something that should be done? I know everone varies, but why do some surgeons do it and some do not?
*I can't really answer this one. Mine was cut, but I assumed everyone's was. I think the dural surrounds the brain. I would assume it prety much has to be cut to reach. But maybe I'm mistaken.
2- The "plate"...what I mean is that they replace something, like the skull, that they have to remove. Do they always use a plate? Is it better to have one that not? Are there plates made from different materials? Any better than others?
*They used a bonegrafting material (pericardial allograft) covered by a duroseal (a waterproof covering) and then a piece of gelfoam to cover the hole.
My case management nurse from my health insurance company said that some doctors enter from the front (around your throat?) and some from behind.
3- What is the difference?
*To this I have no answer. I'm not sure how they could work on the back of the neck and spine by going through the throat.
4- Would I have to shave my whole head?
5- Is there a big noticeable scar afterwards?
*4&5. They'll shave a section of your neck and posterior scalp, the size depends on how much room they need. I told them to go ahead and shave me bald if they wanted too (I'm a guy and we can get away with that a little better. You can see the size of my scar on my avatar). I've seen womens scars and they can mostly be hidden by hair. Mine can only be seen at the base of my short hair - maybe a couple of inches down my back, but that's covered by a shirt. The actual scar isn't very wide - just a few inches long. Are you having any syrinx work done? That could make for a longer scar.
After surgery...
6- :-)
* :D
7- Will I be able to sleep on my back?
8- Will I be able to move my head? Will I have any special brace or bandaging?
9- How long will I be in the ICU?
10- How long until I'll be discharged from the hospital?
*7 - 10 - The first few days in the hospital (you'll spend around 3 or 4 days - 2 or 3 in ICU then a day or 2 in a regular room) will be uncomfortable. You will be on your back and even the pain meds won't stop all the discomfort :(. But after a day or so, you'll start being able to move a little better and pretty much as soon as you are able to get out of bed (with assistance) they'll get ready to move you to another room. I had surgery on a Tuesday and went home Saturday. You shouldn't have any brace. They'll put a big bandage over the scar and you won't be able to get it wet for a few days - I used a shower cap for a little while. I don't remember exactly how long, but I remember being glad that I could finally wash my head :).
11- :-)
* :)
12- What kind of pain medications/pain control are used?
* You'll be given a nice supply of pain killers. I'm not going to lie about this - it's very painful and uncomfortable for a little while afterwards. Make sure you kep one in your syetem for a little while - it's much easier to control pain than stop it. The first day home, I was able to walk up a flight of stairs to my room (my brother followed me in case I fell or anything) I made it to bed and pretty much stayed there the next 2 days. I got up a little the second day, but not much. Then slowly over the next week I was able to spend more and more time up. My wife stayed home the first 2 days, then my sister (a nurse) came and stayed the next couple of days or so with me during the day. Unfortunantely, I caught a stomach virus, so my recovery was slowed - let me warn you that vomiting ater brain surgery *****!
I know that it takes a while to completely heal. But...
13- How long before I should be able to resume normal activities?
*Assuming no comlications, the timeframe I've heard is around 6 weeks until most peole can return to their jobs. I still haven't after 6 months, but it's looking like I have some permenant damage because mine was caught so late.
14- I have young children (1, 1, 3, and 7), how long until I should be able to care for them without having help?
* This one I can't really answer. Sorry. My son is 15. I've babysat my nieces and nephews and they were difficult to handle 3 months after surgery, but that's my case. Your's might be a lot easier. I doubt you'll be able to lift 30 lbs for quite a while. Anything that strains the musckles in your neck or but's pressure on your skull is BAD! You'll also have to go through some physical therapy to work on your neck muscles.
Hope this helps. As I said, these answers come from my experiance. Others (and yours) may, and probably will, vary.
Good luck and keep us in the loop.
Thank you for your honesty Wildfire. I appreciate it. :-) I am not niave enough to think that everyone goes the "textbook" way. And given my history I am preparing not to be, lol, but of course hoping for the best. :-)
My other surgeries were not chiari, they were a hyterectomy, laps,major back surg. that failed, to name a few. I also have severe migraines all the time. The surgery didnt take them away. But it did take away the constant horrifying chiari headache. and the crossing of the eye,and the neuro. symptoms. I was bumping into everything. I could be standing in a store and my body would just fall. it was crazy. I praise God i got through that surgery, if was very scarey. I dont blame you for being scared. If i would have had small children, someone would of had to be there to help me for quite awhile. But maybe your husband can be. What a blessing for you!
Please dont think i am trying to scare you, i just want to give you all the info i can related to my experince.
You asked how i am now-well not well , i have many other illnesses and the back surg. failed and i suffer alot. i am waiting on a miracle. the md says i will get no better, i am 39 y/o and i refuse to have to use a cane and wheelchair the rest of my life. Enough about me..
Good luck to you. May the Lord lead you to the right doc. and facility.
Wildfire22
Please dont think i am trying to scare you, i just want to give you all the info i can related to my experince.
You asked how i am now-well not well , i have many other illnesses and the back surg. failed and i suffer alot. i am waiting on a miracle. the md says i will get no better, i am 39 y/o and i refuse to have to use a cane and wheelchair the rest of my life. Enough about me..
Good luck to you. May the Lord lead you to the right doc. and facility.
Wildfire22
Thank you so much for your reply. I am also on pain meds daily (lortab 10 q4-6hours) and it doesn't help much at all so I am nervous for afterwards, lol.
I appreciate you sharing your story and will keep it in mind Thursday and for the time to come. :-)
You said that you've had several surgeries...were they from Chiari or other issues? Hope that you are well now.
I appreciate you sharing your story and will keep it in mind Thursday and for the time to come. :-)
You said that you've had several surgeries...were they from Chiari or other issues? Hope that you are well now.
Hi aiMelissa,
I did have the fossa decomp. surgery. My symptoms prior where very severe. My NS put in mesh, this is a doctor that i felt the Lord sent me to. It turned out he was very familiar with this surgery and people around Mayos even chose him. (Kansas doc)
I'll be very honest, postop is horrible. I had been on pain meds for awhile and pain control was very hard. My surgery was 12 of 2000. Things may have improved alot since then.
They brought me out of surgery on my back. I remember wishing i wasnt, my head hurt so. They kept me that way in neuro. icu also.??? After you can move more on your own i changed positions.Can you lift your head, i know i couldnt.My family was with me and had to help me eat.
Shave your head? They only shaved around the surg. part of mine. It was a large portion, but not your whole head.I had longer hair and it covered pretty well. My scar is long.It goes down my neck a ways. and of course starts way up on my head. Laying back in the hair bowl when i go to the hair salon still is uncomfortable. I had no brace, hust a regular bandage.
You know, all docs use different pain conrol methods. I believe i had a pump for a while, then went po meds.they have to watch for decreased respirations very closley. Bare with me , it was a long time ago and i have had alot of surg. since.
Check out the hosp. good, visit the areas you will be in ahead of time. I had a very bad experience at the place i was. I wouldnt want that to happen to you. The surg. is bad enough by itself. Check the neuros. too. make sure he has done this surg.alot and has had very good outcomes. Ask alot of questions. Search the net. I found alot. Got alot of my questions there.
My recovery time was long. I got an infection and that didnt help. I couldnt lift for along time. I pray your recovery will be fast and much easier.
Everybody will have a different story, this is a little bit of mine, i hope it helps some.
God bless you and good luck.
Wilfire22
I did have the fossa decomp. surgery. My symptoms prior where very severe. My NS put in mesh, this is a doctor that i felt the Lord sent me to. It turned out he was very familiar with this surgery and people around Mayos even chose him. (Kansas doc)
I'll be very honest, postop is horrible. I had been on pain meds for awhile and pain control was very hard. My surgery was 12 of 2000. Things may have improved alot since then.
They brought me out of surgery on my back. I remember wishing i wasnt, my head hurt so. They kept me that way in neuro. icu also.??? After you can move more on your own i changed positions.Can you lift your head, i know i couldnt.My family was with me and had to help me eat.
Shave your head? They only shaved around the surg. part of mine. It was a large portion, but not your whole head.I had longer hair and it covered pretty well. My scar is long.It goes down my neck a ways. and of course starts way up on my head. Laying back in the hair bowl when i go to the hair salon still is uncomfortable. I had no brace, hust a regular bandage.
You know, all docs use different pain conrol methods. I believe i had a pump for a while, then went po meds.they have to watch for decreased respirations very closley. Bare with me , it was a long time ago and i have had alot of surg. since.
Check out the hosp. good, visit the areas you will be in ahead of time. I had a very bad experience at the place i was. I wouldnt want that to happen to you. The surg. is bad enough by itself. Check the neuros. too. make sure he has done this surg.alot and has had very good outcomes. Ask alot of questions. Search the net. I found alot. Got alot of my questions there.
My recovery time was long. I got an infection and that didnt help. I couldnt lift for along time. I pray your recovery will be fast and much easier.
Everybody will have a different story, this is a little bit of mine, i hope it helps some.
God bless you and good luck.
Wilfire22
I do not know how many chiari patients this doctor sees yet. It is on my list of ?s. :-) My primary care doctor called him and told him how severe my symptoms have become the past couple months so they got me an appointment within 10 days. I had a lumbar puncture done almost 2 months ago looking for MS and since then I have had increased weekness and trouble walking, talking, thinking, etc. Much worse than normal. I can't sit up for more that 30-40 minutes without needing to lay down and at least rest my head on something.
So, I will not be quick to schedule surgery with him. If I am not 110% comfortable with him I am going to Dr Oro in Denver. I have been in touch with his nurse via email and she is waiting to see what my dr says Thursday.
Good luck to you. NY is a possibility but I am lucky to live only 6 hours from a chiari specialist near denver.
So, I will not be quick to schedule surgery with him. If I am not 110% comfortable with him I am going to Dr Oro in Denver. I have been in touch with his nurse via email and she is waiting to see what my dr says Thursday.
Good luck to you. NY is a possibility but I am lucky to live only 6 hours from a chiari specialist near denver.
COMMUNITY LEADER
I am surprised that you are going to a NS so quickly after being DX.What area of the country are you in, and what number of chiari paitents does the NS deal with daily, weekly, yearly??This is very important.I've been to two NS and have not been to one that can help. I did attend ASAP's conference in Arlington, VA in July and met others who've had the surgery.I am looking into going to NY to the Chiari institute. I found most doctors move very slowly.Do not plan your surgery before you meet with your doctor.As I said I was dx this past Feb. 08 and waiting for appt. with knowledgeable dr of this field.
Good luck and God speed.
"selma"
Good luck and God speed.
"selma"
Hello,
I just want to start by saying, I am not an expert - as a matter of fact, I have never even had the surgery, but I wanted to let you know that you are doing great so far. You are really thinking ahead and you have some great questions. The people in this forum will be able to help you (maybe better than some health professionals) with your questions. But don't forget, each case IS unique, what helped some people may not help you, so the best - and I do mean the best - thing you can do is talk to a chiari specialist.
Many health professionals had decided that I needed surgery when I was first diagnosed. I thought my life was over, I was so scared and confused, but after speaking with a chiari specialist, I was able to see that my chiari was not as symptomatic as I thought. Many of my symptoms were explained in other ways... Low vitamin B, hypothyroidism, congenital nystagmus, and carpel tunnel were the culprits for many of my symptoms which I had originally thought to be chiari. As a matter of fact, so far the only real chiari symptom I have is the pressure head aches at the base of my head, and even those are very minor.
But the point is I was lucky, I documented my symptoms and there severity and I sought help from a specialist to sort out my ailments. Does this mean I will never need surgery, and that I can just forget about my chiari? Absolutely not. There is always a potential for danger, but I also did not have to go through an agonizing surgery that would not have helped a vitamin deficiency, carpel tunnel, and all the rest of my problems. I would have had the surgery, and been right back at square one after recovery. So please be careful what you choose. Call a specialist, if they say you do or do not need surgery - they are probably right. And don't be afraid to get more than one opinion!! :)
Write down all of your questions, and take them with you - do not leave your appointment until all questions have been answered. Many people unfortunatley experience the "Chiari Quickie" That's the appointment where the N.S. introduces himself, shakes your hand, and sends you home 2 mins later just as confused as when you arrived!!! If this happens, find a new doc!!! Many docs don't take chiari seriously. Maybe because they know nothing about it, or because they just don't care - either way, that's a red flag. If you don't feel better after your appointment, then it didn't go well. You should at least leave there feeling like you know more than when you went in!!!
Good luck to you, and let us know how it turns out!
I just want to start by saying, I am not an expert - as a matter of fact, I have never even had the surgery, but I wanted to let you know that you are doing great so far. You are really thinking ahead and you have some great questions. The people in this forum will be able to help you (maybe better than some health professionals) with your questions. But don't forget, each case IS unique, what helped some people may not help you, so the best - and I do mean the best - thing you can do is talk to a chiari specialist.
Many health professionals had decided that I needed surgery when I was first diagnosed. I thought my life was over, I was so scared and confused, but after speaking with a chiari specialist, I was able to see that my chiari was not as symptomatic as I thought. Many of my symptoms were explained in other ways... Low vitamin B, hypothyroidism, congenital nystagmus, and carpel tunnel were the culprits for many of my symptoms which I had originally thought to be chiari. As a matter of fact, so far the only real chiari symptom I have is the pressure head aches at the base of my head, and even those are very minor.
But the point is I was lucky, I documented my symptoms and there severity and I sought help from a specialist to sort out my ailments. Does this mean I will never need surgery, and that I can just forget about my chiari? Absolutely not. There is always a potential for danger, but I also did not have to go through an agonizing surgery that would not have helped a vitamin deficiency, carpel tunnel, and all the rest of my problems. I would have had the surgery, and been right back at square one after recovery. So please be careful what you choose. Call a specialist, if they say you do or do not need surgery - they are probably right. And don't be afraid to get more than one opinion!! :)
Write down all of your questions, and take them with you - do not leave your appointment until all questions have been answered. Many people unfortunatley experience the "Chiari Quickie" That's the appointment where the N.S. introduces himself, shakes your hand, and sends you home 2 mins later just as confused as when you arrived!!! If this happens, find a new doc!!! Many docs don't take chiari seriously. Maybe because they know nothing about it, or because they just don't care - either way, that's a red flag. If you don't feel better after your appointment, then it didn't go well. You should at least leave there feeling like you know more than when you went in!!!
Good luck to you, and let us know how it turns out!
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