Aa
concerned about surgery
I am having surgery next week with a very well-known surgeon in the Chiari circles and I am concerned about the surgery. I have EDS and in my last surgery I had a lot of pain. (It wasn't Chiari-related, but it was a major surgery.) I also went into respiratory distress about 5 hours after the surgery and if my husband hadn't been in the room with me and alerted the nurse I would have died since I wasn't hooked up to any monitors. In addition, anesthesia makes me very, very sick. For most of my surgeries, they have given me phenergan or zofran through the IV right after surgery to try to keep me from throwing up post-op.
This surgeon, however, doesn't do any of that. He said that he would not give me any pain medication unless I specically asked for it and that the nurses did not keep up with the pain medicine. He says they give the patients tylenol post-op. Why do some people get morphine pumps then? Also, he does not give anti-nausea medication unless the patient starts throwing up.
Plus, the surgeon has said that even though my surgery is on a Monday I will be able to go home Wednesday morning and that he doesn't send any of his patients to the ICU post-op. Since I have a history of anesthesia causing respiratory distress hours after surgery, this worries me.
My last concern is that I have EDS but he doesn't believe in using your own tissue for the dura patch. I know that there is a bigger risk for rejection when a bovine patch is used.
This surgeon is a Chiari specialist and someone that is very well respected but I swear he acts causal about this-like I am getting a toenail removed. Can anyone here add their input and maybe help alleviate some of my worries?
This surgeon, however, doesn't do any of that. He said that he would not give me any pain medication unless I specically asked for it and that the nurses did not keep up with the pain medicine. He says they give the patients tylenol post-op. Why do some people get morphine pumps then? Also, he does not give anti-nausea medication unless the patient starts throwing up.
Plus, the surgeon has said that even though my surgery is on a Monday I will be able to go home Wednesday morning and that he doesn't send any of his patients to the ICU post-op. Since I have a history of anesthesia causing respiratory distress hours after surgery, this worries me.
My last concern is that I have EDS but he doesn't believe in using your own tissue for the dura patch. I know that there is a bigger risk for rejection when a bovine patch is used.
This surgeon is a Chiari specialist and someone that is very well respected but I swear he acts causal about this-like I am getting a toenail removed. Can anyone here add their input and maybe help alleviate some of my worries?
I know my response will be after your surgery - I'm sorry you've had to go through this....it's difficult enough but when you have concerns like this it doesn't help matters.
My son had the surgery with another chiari specialist. While I believe he did a competent surgery, there were some issues with aftercare. My son was in ICU for three days, then into a regular room for another two days. He was given a morphine pump immediately and I think it was the first 24 to 48 hours, then they switched him to vicodan, which made him throw up, extremely painful after this surgery. They then switched him to Torodal, which is a non narcotic but was very effective for him. I think it was the pharmacy that said he couldn't have it then because he wasn't 18, but he was 16 and the size of an adult. I had to throw a fit, the nurse called the on call, who said to call the NS, who then had to come in after hours. He was obviously on his way somewhere and dressed to the nines.
when he came in, he told me that it is expected that there will be pain following this surgery. I told him I understand that, but WHY should his pain be at a 7 level or above, when it could be at a level 4 or 5 with a NON narcotic medication? He did get the torodal then and it helped a lot.
I am so glad to hear that you have your husband and another chiari patient to advocate for you!! I hope all has gone well and that you are now getting the medications you need to lessen your pain. Good luck.....
My son had the surgery with another chiari specialist. While I believe he did a competent surgery, there were some issues with aftercare. My son was in ICU for three days, then into a regular room for another two days. He was given a morphine pump immediately and I think it was the first 24 to 48 hours, then they switched him to vicodan, which made him throw up, extremely painful after this surgery. They then switched him to Torodal, which is a non narcotic but was very effective for him. I think it was the pharmacy that said he couldn't have it then because he wasn't 18, but he was 16 and the size of an adult. I had to throw a fit, the nurse called the on call, who said to call the NS, who then had to come in after hours. He was obviously on his way somewhere and dressed to the nines.
when he came in, he told me that it is expected that there will be pain following this surgery. I told him I understand that, but WHY should his pain be at a 7 level or above, when it could be at a level 4 or 5 with a NON narcotic medication? He did get the torodal then and it helped a lot.
I am so glad to hear that you have your husband and another chiari patient to advocate for you!! I hope all has gone well and that you are now getting the medications you need to lessen your pain. Good luck.....
COMMUNITY LEADER
I posted a prayer thread for u, so know u will be in all of our thoughts and prayers....
And I am happy to hear u have a fellow chiarian to help advocate for u....I know this is a stressful time, the ICU timeframe is as needed really, I was in 2 days, but I was having issues with the morphine.
And that is the thing, they may have guidelines for what they do, but what u experience may be totally different.
Hi ! Just wanted to wish you the best. I will be thinking of you. I have my surgery on thursday and it will be great to have someone so close post op to talk to about different situations and things. You will be in my prayers. When it comes to the pain management...just be persistent !!!! Don't allow them to let you be in pain and miserable.
Best wishes and thoughts to you <3
Best wishes and thoughts to you <3
I did talk to my NS's office today and tried to get some answers.
Here they are: Chiari patients do not spend time in the ICU post-surgery because "there's no reason to." They do, however, go to a neurological floor post-op where the patients/nurse ratio are 2:1. (This only made me feel slightly better.) Since I have a history of respiratory distress post-op she said I needed to talk to the anesthesiologist about it.
Next, I asked about why Chiari patients only spend 48 hours in the hospital. She said that some go home the next day! Her reason? "We have found that if patients spend longer in the hospital they tend to think they can't do as much and we want our patients to go back to their normal activities as soon as possible so we try to go ahead and release them.
The fact that they don't prescribe pain medicine and anti-nausea medicine post-op unless I ask for it is something we might just have to deal with as it happens. My husband can throw a fit. I don't know if that's a battle that I can fight beforehand.
All in all, the nonchalant way they are handling this seems to bother me the most. Oh, and nothing we can do about the dura patch. He uses bovine and that's it. So I hope my body doesn't reject it.
I appreciate the answers. I have a good friend who has been decompressed twice and she is going to go with us and act as my advocate. Hopefully, that will help some.
Here they are: Chiari patients do not spend time in the ICU post-surgery because "there's no reason to." They do, however, go to a neurological floor post-op where the patients/nurse ratio are 2:1. (This only made me feel slightly better.) Since I have a history of respiratory distress post-op she said I needed to talk to the anesthesiologist about it.
Next, I asked about why Chiari patients only spend 48 hours in the hospital. She said that some go home the next day! Her reason? "We have found that if patients spend longer in the hospital they tend to think they can't do as much and we want our patients to go back to their normal activities as soon as possible so we try to go ahead and release them.
The fact that they don't prescribe pain medicine and anti-nausea medicine post-op unless I ask for it is something we might just have to deal with as it happens. My husband can throw a fit. I don't know if that's a battle that I can fight beforehand.
All in all, the nonchalant way they are handling this seems to bother me the most. Oh, and nothing we can do about the dura patch. He uses bovine and that's it. So I hope my body doesn't reject it.
I appreciate the answers. I have a good friend who has been decompressed twice and she is going to go with us and act as my advocate. Hopefully, that will help some.
COMMUNITY LEADER
I agree u do not have time to seek another opinion at this time, and yes talk to the anesthesiologist as it is more his area of expertise.
Thanks for all the replies!
@zygy-This is Dr. Tew at the Mayfield Clinic (the Chiari Center). That's why I am so surprised. He's supposed to be one of the best in the world!
@Selma, do you think some of these issues might be better brought up with the anesthesiologist? That they might be his department?
This is my second opinion. My insurance won't pay for another one or cover any procedures that I might have with another one. My surgery is tomorrow so I feel like I am pretty pressed for time. I have a large syrinx in my thoracic spine and complete blockage that has made me blind in one eye and given me almost complete hearing loss. Well, those and along with about 35 other symptoms! :-)
@zygy-This is Dr. Tew at the Mayfield Clinic (the Chiari Center). That's why I am so surprised. He's supposed to be one of the best in the world!
@Selma, do you think some of these issues might be better brought up with the anesthesiologist? That they might be his department?
This is my second opinion. My insurance won't pay for another one or cover any procedures that I might have with another one. My surgery is tomorrow so I feel like I am pretty pressed for time. I have a large syrinx in my thoracic spine and complete blockage that has made me blind in one eye and given me almost complete hearing loss. Well, those and along with about 35 other symptoms! :-)
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
U r right to have concerns and regardless of the Drs standing with Chiari, if he is not meeting ur needs, get another opinion. It is too important not to.
I was in ICU for 2 days...I was intubated during surgery and then on oxygen while in ICU....I was on all sorts of monitors and was there for 5 days.
I also have EDS and we can develop new issues to meds at ne time, and that was part of the problem and y I was in ICU as long as I was......
U should be able to talk to the anesthesiologist, I did and I told mine how I had thrush post op from surgery on my ankle and he said most likely the tube was too large and it scratched my throat....and he would use the smallest one possible to help avoid that, and he did and I did not have thrush post op....Ask who will be the anesthesiologist as these issues r more his department to handle....and again if u r not happy, cancel and get another opinion...unless ur chiari is life threatening u can wait a while longer for surgery.
I am familiar with Dr Tew, but not all NS's r going to be right for u, and u do need to find the right one as well as one that is well experienced.
I was in ICU for 2 days post-op and a total of 5 days hospitalized. The anesthesiologist give me Zofran and Reglan after surgery for nausea. I woke up connected to a Morphine pump and was sent home with lots of narcotic pain meds and a muscle relaxant. Its protocol after surgery for my NS. I think you should get a second opinion as well. I don't have EDS just Chiari.
I would also see additional opinions!!! They all seem to tell us "I have lots of experience" but we get to find out later that it was not the case. I am not sure I have heard of anyone on here that did not go to the ICU to be monitored!! You can be moved in 24-48 hours depending on how you are doing but it always seem to start in the ICU. As for nausea problems.... I too have big problems with nausea and this surgery is almost a guarantee to cause problems because of what they are touching! My NS was more than happy to work with me... I got a patch to stick on the day before, they gave me IV meds with surgery AND continued to give me meds by pill after surgery for my time in the hospital and I left with a prescription to help if things got bad at home! The right Doctor should be listening to your concern!
Pain meds are a must at first. Obviously some people don't need them long and because of side effects I try to quit as soon as I can but this surgery HURTS. The bone removal if they take the back of c1 my NS said causes much more pain. I did not have to ask for meds for probably the first 12 hours and then after that point they started to ask me and allow me to try tylenol if I could deal with that. Still though, they gave me pain meds when I went home to have. I did not have a pain pump.
As for time of recovery... it is so different for everyone. It seems odd he would assume 48 hours, that is not a common amount of time. Most people are in the hospital longer. I did get out in 48 hours and I was happy to go home but most stories seem to be longer in the hospital. I would worry greatly about your issues with surgeries and make sure you are ONLY in ICU after this! He should be much more interested in your history. EDS also makes it all so much more complicated. My first patch was synthetic and caused big problems... I found a new NS that would harvest my own tissue and I wish I had found him first! I have had three surgeries so far and my synthetic patch stuck to the cerebellum doing damage. That was why I had a third emergency surgery and it actually did damage to my brain! I wish I had found the NS to use my tissue the first time... this might have been avoided. You need to feel confident in the answers you are getting. I would either talk to him again about ALL your real concerns or I would be searching for a good second and third opinion. I know you were looking for someone to make your worries go away but you have too many real concerns! I have had to neurosurgeons and i can tell you without a doubt the second has been so much easier to deal with. He listens and he is smart and he SEES ME for who I am and what issues I have to deal with. We are not all the same and can't be treated that way. Any questions, just feel free to ask.... I am getting good at all of this after all my surgeries :) LOL -zygy
Pain meds are a must at first. Obviously some people don't need them long and because of side effects I try to quit as soon as I can but this surgery HURTS. The bone removal if they take the back of c1 my NS said causes much more pain. I did not have to ask for meds for probably the first 12 hours and then after that point they started to ask me and allow me to try tylenol if I could deal with that. Still though, they gave me pain meds when I went home to have. I did not have a pain pump.
As for time of recovery... it is so different for everyone. It seems odd he would assume 48 hours, that is not a common amount of time. Most people are in the hospital longer. I did get out in 48 hours and I was happy to go home but most stories seem to be longer in the hospital. I would worry greatly about your issues with surgeries and make sure you are ONLY in ICU after this! He should be much more interested in your history. EDS also makes it all so much more complicated. My first patch was synthetic and caused big problems... I found a new NS that would harvest my own tissue and I wish I had found him first! I have had three surgeries so far and my synthetic patch stuck to the cerebellum doing damage. That was why I had a third emergency surgery and it actually did damage to my brain! I wish I had found the NS to use my tissue the first time... this might have been avoided. You need to feel confident in the answers you are getting. I would either talk to him again about ALL your real concerns or I would be searching for a good second and third opinion. I know you were looking for someone to make your worries go away but you have too many real concerns! I have had to neurosurgeons and i can tell you without a doubt the second has been so much easier to deal with. He listens and he is smart and he SEES ME for who I am and what issues I have to deal with. We are not all the same and can't be treated that way. Any questions, just feel free to ask.... I am getting good at all of this after all my surgeries :) LOL -zygy
Just because they researched it thoroughly and are good surgeons doesn't make their bedside manner good. When patients of Kienbock's disease asked about seeing the guy who staged it they found out they were better off with the guy who knew a little bit less than him. Unfortunately for me, I got stuck with the guy who learned under the guy who staged it. Don't assume just because their expects they will do what's best for you.
Thank you. I am going to the Mayfield Clinic in Ohio and this doctor has published a lot of papers on Chiari and is supposed to be one of the top surgeons in the world with Chiari. That's why I am confused. I think a second opinion might be in order though!
From everything I hear and know about Chiari somethings fishy. Get a second oppinion and don't go back to him. He doesn't sound like a specialist to me if he doesn't even have you in icu the first night respiratory problems or not. All chiari patients are in ICU the first night. The rest I'm not sure about. I usually annoy the nurses into giving me tigan or pheragen or even compazine when they don't have the above. Pain management isn't tynenol in any of the surgeries I went through without me specifically asking for tynonol instead of what they gave me and I still haven't had my surgery for chiari.
Good luck with finding someone else. I hope you do. You are the reason we need to be in icu the first night and he shouldn't assume you don't
Good luck with finding someone else. I hope you do. You are the reason we need to be in icu the first night and he shouldn't assume you don't
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