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What to expect with Chiari Surgery with Dr. Rosner
I have Chiari 0-1 and am considering surgery with Dr. Sonar, I am 30 and live in California and have flown out this week to North Carolina for my 1st appointment with him. I can not express how amazing it has been to list the things that have been going on and have him tell me that he hears these symptoms all the time.
Symptoms..
Daily Headaches (base of brain)
tremors in left arm
blurred vision in left eye
occasional lack of balance
memory issues
..these and more just to name a few
I was scheduled a tilt test which I "failed with flying colors" and was scheduled 2 MRI's, one for my brain and one for my back. I have an appt. tomorrow to go over the MRI's. I have already talked about surgery with Dr. Rosner but I'm really looking for some information on exactly what I am going to feel like right after surgery..what the next few days are like and what it was like back at home. How do you sleep? Are you hungry? Do you have to have physical therapy or once you heal you are back to normal? From what I understand my symptoms are mild when compared to other people who have chiari. I have been informed that the symptoms do not go away and only get worse, as I have already seen. I did not have any of the symptoms mentioned above until I was involved in a car accident that was not my fault. That was two years ago.
If anyone has any information on the surgery with Dr. Rosner, where you stayed, how it went, it would be much appreciated.
Thank you!
Symptoms..
Daily Headaches (base of brain)
tremors in left arm
blurred vision in left eye
occasional lack of balance
memory issues
..these and more just to name a few
I was scheduled a tilt test which I "failed with flying colors" and was scheduled 2 MRI's, one for my brain and one for my back. I have an appt. tomorrow to go over the MRI's. I have already talked about surgery with Dr. Rosner but I'm really looking for some information on exactly what I am going to feel like right after surgery..what the next few days are like and what it was like back at home. How do you sleep? Are you hungry? Do you have to have physical therapy or once you heal you are back to normal? From what I understand my symptoms are mild when compared to other people who have chiari. I have been informed that the symptoms do not go away and only get worse, as I have already seen. I did not have any of the symptoms mentioned above until I was involved in a car accident that was not my fault. That was two years ago.
If anyone has any information on the surgery with Dr. Rosner, where you stayed, how it went, it would be much appreciated.
Thank you!
I know I am the same way about wanting all the information I can get. I tend to over analyze everything. If you want to PM me I am happy to give you my phone number so we can talk and you can ask me whatever you need to. It is helpful to know exactly what to expect. I have had alot of people to help me through this journey and am happy to return that kindness. My dad has been my rock through this too. How awesome to have him join you.
Yes, I flew out with my dad last week and we did stay at the Moutain Inn and Suites. I will definately look into the suite for the surgery weeks, thank you for that information. I am the type of person who wants to know exactly what is going to happen (good and bad) so all of this information is very reassuring to me.
SelmaS, thank you so much for the links!
SelmaS, thank you so much for the links!
COMMUNITY LEADER
Hello, I am so happy that you have your date set. He is amazing. I just got home from up there. My friend Michelle who is also on the forum just had surgery yesterday with Dr R. She is doing amazing too. Probably better than I did. She was eating last night and has been up and has taken a shower. Her pain is well controlled and she is having a little bit of nausea which they are controlling as well. All her drains were out this morning.
I am not sure about pressurized cabins and how soon it is before that is ok. That is definitely a Dr R question. What maybe an option is small aircraft. Angel Flight is a network of privately owned planes that the time and plane are donated based on need. For medical treatment, appointments, etc. Is worth checking into. As far as assistance with a shower the day after surgery they did help me into the bathroom and got me settled on a chair and then left me to do the rest. Mainly concerned with falling I believe. I was able to put on a over my head gown the next day with no issues. So I dont think the button up is necessary. I would just make sure it is loose fitting. I am cold natured and I was really cold there. So if you are the same it may be a good idea to bring warm pajamas and light weight gowns just to be on the safe side. Michelle has been too warm so I guess it really depends on the person. I was able to shower alone as soon as I got home. Again, everyone is different. When you were there did you stay at Mountain Inn and Suites? That is the hotel 1/2 mile or so from the hospital on the opposite side of the road. They have a 1 bedroom suite that has living room with foldout sofa, bedroom with a king size bed and microwave and small fridge. It is a very nice room and cheap with Dr R's patient discount. They also have regular rooms depending on how many people will be there. Also free breakfast every morning. I would think you would be comfortable there. Michelle is from Missouri and I do believe she is staying for 2 weeks after surgery. Plus they are super nice and very helpful to his patients. I do believe they see alot of us. They also have very good food in the hospital cafeteria, lots of veggies and healthy stuff to eat. Is alot better than what is brought up on the trays. Hmmm, weird I know. Most of the nurses there are angels. You are right they are so very nice. He told me that most of the possible complications that can happen will show their face within a week. But California is a long way... I would probably stay 2 weeks if it were me. I am lucky to only be 2 1/2 hours away. I came home Saturday after surgery on Wednesday. I havent needed to see him. He and I have emailed several times. He is only a phone call away. I can imagine being that far away I would be a little nervous too... but I would more nervous about having someone less experienced do the surgery. He is an amazing and a gifted surgeon. Good luck and keep me posted.
Pam
I am not sure about pressurized cabins and how soon it is before that is ok. That is definitely a Dr R question. What maybe an option is small aircraft. Angel Flight is a network of privately owned planes that the time and plane are donated based on need. For medical treatment, appointments, etc. Is worth checking into. As far as assistance with a shower the day after surgery they did help me into the bathroom and got me settled on a chair and then left me to do the rest. Mainly concerned with falling I believe. I was able to put on a over my head gown the next day with no issues. So I dont think the button up is necessary. I would just make sure it is loose fitting. I am cold natured and I was really cold there. So if you are the same it may be a good idea to bring warm pajamas and light weight gowns just to be on the safe side. Michelle has been too warm so I guess it really depends on the person. I was able to shower alone as soon as I got home. Again, everyone is different. When you were there did you stay at Mountain Inn and Suites? That is the hotel 1/2 mile or so from the hospital on the opposite side of the road. They have a 1 bedroom suite that has living room with foldout sofa, bedroom with a king size bed and microwave and small fridge. It is a very nice room and cheap with Dr R's patient discount. They also have regular rooms depending on how many people will be there. Also free breakfast every morning. I would think you would be comfortable there. Michelle is from Missouri and I do believe she is staying for 2 weeks after surgery. Plus they are super nice and very helpful to his patients. I do believe they see alot of us. They also have very good food in the hospital cafeteria, lots of veggies and healthy stuff to eat. Is alot better than what is brought up on the trays. Hmmm, weird I know. Most of the nurses there are angels. You are right they are so very nice. He told me that most of the possible complications that can happen will show their face within a week. But California is a long way... I would probably stay 2 weeks if it were me. I am lucky to only be 2 1/2 hours away. I came home Saturday after surgery on Wednesday. I havent needed to see him. He and I have emailed several times. He is only a phone call away. I can imagine being that far away I would be a little nervous too... but I would more nervous about having someone less experienced do the surgery. He is an amazing and a gifted surgeon. Good luck and keep me posted.
Pam
Wow Pam, thank you so much for your responce. Since my last post I have scheduled my surgery date and it is 8/17/11. I was able to stay at the mountain in last week when I was there and I also was impressed with how kind everyone was. Unfortunately I live in California so I have to make some decisions on where I will be healing. I believe I will stay in north carolina for 2 weeks then spend 4 back at home then Dr. Roser said he would like to see me after 6 so I will have to go back for a day. Have you heard any pros/cons about flying after the surgery? I am thinking I will try to fly home after 2 weeks unless you think I would be able to go sooner? I'm very nervous about being SO FAR away from dr. rosner after the surgery but, like you, I feel he is the best. Do you have any suggestions for me or my family for the first couple of weeks? Should I look for some button up clothes? Will I be able to lift my arms up to my head?..you mentioned you were able to shower right after surgery, was this with assistance? Thank you so much for your responces!
Hello and welcome. I just had surgery with Dr R on 4/20/2011. I like you started having symptoms from a car accident that wasnt my fault. I also think some of my symptoms were milder than some experience. We have stayed at the Mountain Inn and Suites more than a few times and have been happy every time we have been there. Is clean and comfortable and pretty inexpensive when you get his patients discount. Plus it is very close.
As far as surgery goes... the first day I dont remember much. I remember pastoral care coming to pray with me, at my request. Hugging my family goodbye. Next thing I remember was it was night time and Dr R was still watching over me like a mother hen. The pain meds were working, nausea was controlled it wasnt a bad night. The next few days I saw Dr R often, the meds worked well. Got up and went walking the day after surgery with PT. Also had a shower which was awesome. The drains come out. 3rd day we started switching over to oral meds to go home and it wasnt nearly as easy. We got it figured out and I was discharged on Saturday. I live only 2 1/2 hours from Dr R so I went home. The first few days I mainly stayed in bed. I was pretty comfortable except I had developed Thrush in my mouth that was pretty horrible when trying to eat or drink but he had given me meds that took care of it in a few days. I had cooked some meals and frozen them before going that came in handy. By the end of the 1st week home I went to grocery store with help. By the end of the 2nd week I had driven some. I have been doing some light cooking. Picking up around the house a little. Able to take a shower without assistance. All in all I am amazed with my progress at this point. I think that learn to live with so many symptoms or take them for "our normal" we dont realize how bad we did feel. My neck being extremely stiff and sore was an issue but a round of steroids and hot and cold alternated seemed to help alot. He does send you home with exercises to do and doesnt recommend PT right away. I dont know if he will recommend later. He is really good about working with you on meds. If you need something for sleep, nausea, pain, whatever just let him know and he will make sure you are taken care of. I did have some issues sleeping when I was taking steriods but that seems to be better now. Appetite is also better since the Thrush is gone. All in all it was worth it. I already feel better than I have in years. Personally, I would not let anyone else do this surgery on me. I waited for months for him to be able to do it. The risk of possible complications with an inexperienced surgeon was just too great for me. So far the only issue I have had is Thrush and that can often be caused by steroids and antibiotics which I believe you get alot of. If you have anymore questions feel free to PM me.
I hope this helps.
Pam
As far as surgery goes... the first day I dont remember much. I remember pastoral care coming to pray with me, at my request. Hugging my family goodbye. Next thing I remember was it was night time and Dr R was still watching over me like a mother hen. The pain meds were working, nausea was controlled it wasnt a bad night. The next few days I saw Dr R often, the meds worked well. Got up and went walking the day after surgery with PT. Also had a shower which was awesome. The drains come out. 3rd day we started switching over to oral meds to go home and it wasnt nearly as easy. We got it figured out and I was discharged on Saturday. I live only 2 1/2 hours from Dr R so I went home. The first few days I mainly stayed in bed. I was pretty comfortable except I had developed Thrush in my mouth that was pretty horrible when trying to eat or drink but he had given me meds that took care of it in a few days. I had cooked some meals and frozen them before going that came in handy. By the end of the 1st week home I went to grocery store with help. By the end of the 2nd week I had driven some. I have been doing some light cooking. Picking up around the house a little. Able to take a shower without assistance. All in all I am amazed with my progress at this point. I think that learn to live with so many symptoms or take them for "our normal" we dont realize how bad we did feel. My neck being extremely stiff and sore was an issue but a round of steroids and hot and cold alternated seemed to help alot. He does send you home with exercises to do and doesnt recommend PT right away. I dont know if he will recommend later. He is really good about working with you on meds. If you need something for sleep, nausea, pain, whatever just let him know and he will make sure you are taken care of. I did have some issues sleeping when I was taking steriods but that seems to be better now. Appetite is also better since the Thrush is gone. All in all it was worth it. I already feel better than I have in years. Personally, I would not let anyone else do this surgery on me. I waited for months for him to be able to do it. The risk of possible complications with an inexperienced surgeon was just too great for me. So far the only issue I have had is Thrush and that can often be caused by steroids and antibiotics which I believe you get alot of. If you have anymore questions feel free to PM me.
I hope this helps.
Pam
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