ANA Discussion Forum
Post-Treatment => Post-Treatment => Topic started by: mindyandy on March 16, 2012, 07:54:43 am
-
Hi all. I hope I'm up to write all this. Please excuse my errors. I am 9 days post op and back at home. For all those who have upcoming surgeries I'm hoping my story helps. I had my AN discovered back in 2007 after I gave birth. I decided since it was small 1.4mm that I would op for Cyberknife. Jan 2008 I had 3 sessions of CK done and was hoping to put it all behind me and move forward. After radiation I did have some minor swelling and experienced some side effects such as pressure feeling and what I believe to be typical swelling sx. My MRI's showed some swelling then receeding which is wonderful. No real growth or change. My last scan November 2011 showed about 1mm to 2mm difference depending on who was reading it. Nothing really to talk about except I started to feel sharp shooting pains in my jaw on my AN side. Come to find out I developed Trigeminal Neuralgia. Something I would never wish apon anybody. Dr. Medberry who I had look at my scans for an opinion says he could not say for sure growth or no growth. It does show it pressing against the trigeminal nerve tho. He suggested I wait 6 months for another MRI since there was not real concern for growth or no growth at the time. I sent my scan to Dr. Haines at the MN university and also to Dr. Friedman at House. i wanted some opinions since I was in such pain and I am allergic to the anti sizure meds they prescribe for Trigeminal Neuralgia.
Dr. Haines and Dr. Friedman agreed that little if any growth, however it was pressing on the trigeminal nerve so I can go ahead & schedule surgery if this is what I wanted to do. Yes....I can not tollerate the pain so I scheduled surgery March 7th with Dr. Friedman since House has such a high reputation and I felt safe going to him.
After I scheduled surgery of course Anxiety hits hard. Thanks to all the wonderful fellow AN'ers and family and friends this sure helped me stay focused as to why I was having surgery and not to run and hide.
My husband & I arrived in LA March 4th. I have never been to LA so I was surprised that the neighborhood St Vincet Hospital was in was not so great. That is ok . I have read here that it was in a bad neighborhood. Seton Hall was pretty quite and cozy for the convience. There were others there to talk to such as JanetD, and Mr. Bill. They had their surgery 1 week before me and were doing wonderful. This gave me a good feeling. Hubby & I walked and rented a car for Monday. Tuesday was pre op day and it was ALL DAY LONG. This day was busy. Come Wednesday morning I was scheduled 1st thing at 5:30am. I was NERVOUS. I was handed the paiger and said when it goes off it was my turn. No more than 10 minutes later It went off. I went to the little are where you change into your gown and they pump the warm air into your gown. This felt good but it made me realize I was within an hour or so to surgery. I broke down and shed some tears. The nurse and my husband were both there and talked to me. I was then wheeled into the elevator. This is where everybody who had surgery at House know when the elevators open you are in a hall full of windows that have the sunshine streaming in. It was wonderful, however it was a cloudy morning. Still beautiful. I was then wheeled into preop. This is where I met the others that were involved during surgery. They helped keep me calm. The anastesiaologist was over 1 hour late due to traffice accident back up on the freeway so they switched and got another anastesiaologist to start. She was good. I did get wheeled into OR while I was awake. She did give me something to calm me so I was not scared. I watched as they set up and then she said ok Mindy. That is all I remember. Next thing you know I was in ICU with Dr. Schwartz and the nurses saying it was over. I felt no pain. I was very nauseous. I expected this since anastesia does this to me. I now know what the first 24 to 48 hours doesnt count means now. I was so in and out of it I don't remember much.
I will say that the ICU nurses were heaven sent. They were WONDERFUL.
Thursday March 8th that evening I was put into a regular room. My ICU nurses were gone. LOL The nurses here are just as wonderful and attentive. I have to say the only thing that I did not enjoy so much about my experience is that when I was put into a regular room the first 2 nights were very LOUD. I know they were busy so I just shut my door and didn't complain. I'm also from the country so I could just be spoiled. LOL
Ok I can give more details if people want it just ask. My eyes are all over the place here so I am going to leave my story short.
Mindy
-
Hi Mindy .....
So glad you are home and doing well at 9 days post-op!
Wonderful to read all about your experience. Your description at HEI/St. Vincent's brought back many memories. I had much the same experience except that I was surprisingly calm on the day of surgery.
So glad all of this is behind you now and so glad the trigeminal pain is all gone (we both know how horrible those electric shocks were !!).
Continuing thoughts and prayers.
Clarice
-
Congrats Mindy ,, glad to hear you had an "uneventful" surgery experience. That I am sure will help others yet to go through it.. take care of yourself and concentrate on recovery now... we are all still thinking of you... Jane
-
Hi, Mindy ~
I'm so glad to learn how well you're doing! Thanks so much for the comprehensive update on your AN surgery experience. Although I didn't have my AN surgery at HEI, your account seems very familiar to me in many ways, including the relative 'haze' of the first few days, post-op.
Now, rest as needed - and thanks again for your interesting post. :)
Jim
-
Wonderful to hear from you, Mindy! Well done! I'm wishing for a restful, peaceful and swift recover for you.
Liz
-
Thanks for all the well wishes everybody. You all are what strengthens me. How are you doing Lizzy? I know what you mean by dizzy...LOL
-
Heyy Mindy...Thank you for posting your experiences here. It will definitely help future AN'ers as it did you and I... plus I suspect it's kind of theraputic to write down your experiences as you remember them. It will also be good reading for you months and years down the road when all this is behind you and becomes just a distant memory. I re-read some of my first posts again from time to time and its just amazing how time changes your perspective. Anyways, I am glad you are home and on the road to recovery. Just try to get in as much walking as possible...it'll help you regain your balance that much better plus help in your overall recovery. Take care and keep us updated on how things go! :)
Jay
-
I appreciate your post Mindy. It was interesting and informative! It sounds like you did well with your surgery and were quite pleased with your choice of going to HEI. I am really glad things have gone so well for you. Also, I am glad you are back home. I wish the best for you post surgery!
Windy
-
Hey, Mindy! Know you're glad to be back home! So glad everything went successfully out there! It's a great feeling to have it behind you, isn't it!
Try to take it easy for awhile,
cindy
-
Thank you so much Mindy for telling us all about your experience! As I'm awaiting my surgery date it's really comforting to read about someone who as crossed to the other side and done so well.
I did have a question though. You said that your pre-op testing took all day. What exactly do they do for pre-op? What kind of tests? I had an MRI done in February which is how I found out about my AN and my surgery is scheduled at the beginning of May. Do you think they'll make me do another MRI? I'm claustrophobic and I'd rather not have to have another one if at all possible...
-
I am guessing that they may not. I think I told you that Dr Woodson did her fellowship at Univ of Iowa so I have met her but she was not one who did surgery on me. The male dr before her was my last surgery. She is so nice and very intelligent. What you have depend will depend on your age,health history and protocol for each type of surgery. Blood work with a complete blood count and profile. Chest x rays. Possible EKG.
Talk about your whole health history and probably do your admission form. Info on what to do before you come for surgery and drugs not to be taking. May or may not talk to anesthesiology. U of I does head x ray if having mid fossa for bone location. I never had any had any balance testing but someplaces do and would think that would before the pre op. Audiogram will be done. Probably info on what to expect post op. Sign papers for permission to do surgery and anesthestia. I might be forgetting some. Possible a lung functrion test if one is a smoker (which I am not) We will be thinking of you at surgery time. Cheryl R
-
Manders
My pre op did not include an MRI. I think pre op is different for each place you go. I had an auditory test, ABR test, vestibular test done. I met with Dr. Schwartz and then later with Dr. Friedman. I had a EKG done with Dr. Stefan who clears you for surgery. The very last thing I remember is giving blood work and a urine. Oh I did have a chest xray too. It just took all day going from one appointment to another. I would ask your surgeon what preop they are going to do with you. I never did have an MRI. I did get a CT scan day after surgery. Standard procedure.
Mindy
-
I do have to agree with Cheryl. No matter where you go and how good they're reputation is they will / nobody will guarentee anything really. The hearing nerve is so sensitive. Dr. Schwartz did not touch my hearing nerve since my hearing is soo good. He said touching it especially after radiation would make it really not servicable. He said sometimes just barley touching the hearing nerve and it tests ok before closing it still sometimes will not work. That is how sensitive it is. House never guarenteed any hearing preservation. They did say they will do the best they can. That is all you really can ask for.
-
Okay, thank you ladies. I kind of figured things would vary from physician to physician, I wasn't sure how much of the pre-op procedure was standard across the board. I guess not too much. I'll be meeting with both doctors on April 4th and I'm sure they'll go over all the details then. Fingers crossed that I won't have to have either another MRI or CT scan before surgery!
-
Hi Mindy,
I'm so glad you have shared your positive experience with us. I, too, have some questions. What exactly did they do during your surgery? Did they remove the AN that was left from the radiation? I know in an earlier post you said that they didn't feel it had grown but wanted to solve your trigeminal neuralgia pain. Where was it located exactly? How does the dizziness feel? Are you sitting still and the room spins non-stop or is it only when you move your head fast? Sorry for all the questions, but I want to ask while they are fresh in your mind.
Thanks and continue on your positive road to recovery.
Lisa
-
Thanks Lisa for asking. I don't mind answering questions. I know I was full of them. When I met with Dr. Schwartz and Friedman we agreed that since I had CK done 4 years ago that they can either go in aggressive and remove the tumor which he said would result in hearing loss since I have perfect hearing he didnt want to do this. Dr. Schwartz looked over my scans from 2007 to present and said it was not growing. He believe radiation triggered it to aggrevate the trigeminal nerve. He said he sees the tumor on the nerve and can relieve my pain. This was the ultimate goal. I agreed. He said revoval of the tumor after radiation would make my hearing nerve crumble. I opted to save my hearing. He does not belive that it will grow. He has removed 1000's of AN's and he said hearing is a very touchy nerve. His bedside manner is not the best but he is very knowledgeable and very good. I trust him. I did wake up dizzy. Not as bad as I had thought but anastesia makes me very sick so I expected it. I am dizzy still since my left side did not compensate yet. Its not nausea dizzy or anything but just off balance. When my head turns or when I go too fast. My AN was located close to my trigeminal nerve and on my hearing nerve. My hearing is good which is weird. He said my facial nerve and my trigeminal nerve were close but my facial nerve is fine.
Let me know if you have more questions. I will try to answer them.
I know you did not have a good impression with House but I do not regret my decision. I was very pleased. I know the hospital is not in a good neighborhood but my care was great.
Mindy
-
Thanks Lisa for asking. I don't mind answering questions. I know I was full of them. When I met with Dr. Schwartz and Friedman we agreed that since I had CK done 4 years ago that they can either go in aggressive and remove the tumor which he said would result in hearing loss since I have perfect hearing he didnt want to do this. Dr. Schwartz looked over my scans from 2007 to present and said it was not growing. He believe radiation triggered it to aggrevate the trigeminal nerve. He said he sees the tumor on the nerve and can relieve my pain. This was the ultimate goal. I agreed. He said revoval of the tumor after radiation would make my hearing nerve crumble. I opted to save my hearing. He does not belive that it will grow. He has removed 1000's of AN's and he said hearing is a very touchy nerve. His bedside manner is not the best but he is very knowledgeable and very good. I trust him. I did wake up dizzy. Not as bad as I had thought but anastesia makes me very sick so I expected it. I am dizzy still since my left side did not compensate yet. Its not nausea dizzy or anything but just off balance. When my head turns or when I go too fast. My AN was located close to my trigeminal nerve and on my hearing nerve. My hearing is good which is weird. He said my facial nerve and my trigeminal nerve were close but my facial nerve is fine.
Let me know if you have more questions. I will try to answer them.
I know you did not have a good impression with House but I do not regret my decision. I was very pleased. I know the hospital is not in a good neighborhood but my care was great.
Mindy
Hi, Mindy did you get a script to go for Vestibular Therapy I am sure that will help you with the dizziness I was told to keep doing it to strengthen it..If not go on the website and do the basic routine they have listed there might help you as well..
Best Wishes,
-
No I didn't get vestibular therapy. I guess I'm stubborn. Archer....I am not able to PM you back. Says error. I have tried. I will keep trying. I see you have decided to go ahead. The St Vincet rooms after ICU are very small. My husband did stay a night on a chair/recliner which was not comfy but it was useful. I did see others that had more family in their rooms. I have to say it was not big enough for a whole lot of people. I'm not sure if you have more family if they give you a bigger room. I would ask. Seton Hall I believe can sleep 4. 2 in the bed and 2 on the hideacouch. If you need more room I would ask. It was just me and my husband so I did not need much room. It is great to have family there for support, however I can see them being bored. LOL i will keep trying my messages to see if I can respond.
-
Thanks Mindy. My message board isn't working. I see there is a message in there but can't see new or old messages. I sent a note to the admin so may work soon.
Good information on the hospital rooms and Seton. I appreciate it. After I get out of the hospital we'll be staying with my wife's family. Only about 30 minutes from the hospital. Pretty convenient. I hope to be able to walk along the beach for exercise if I am up to it. At least we'll be in familiar surroundings for the week following.
Hope you're feeling better each day and thanks again.
-
Your welcome Archer. Keep me posted as the day gets closer. I had wonderful care. The ICU nurses were angels. Kiki I believe was her name. She was my day nurse. Wonderful. The lady who was my night nurse I'm not sure her name. She was awsome. i remember her washing me and changing my bedding and feeding me ice chips etc. I felt pampered. I felt nauseous but she made me feel comfortable.
-
Mindy, I'm glad to hear you were so well taken care of. Is the dizziness getting any better? Keep us posted on how you are!
I'm more than 2 months post-op now and doing well. I was planning to post an update, but was stubbornly waiting until I could say something like "I'm back to skiing" rather than "I'm back at work" - but I should be grateful :)
All the best,
Liz
-
Mindy, I hope your recovery continues to go well. I so enjoyed reading your description of your experience at House and St. Vincents. It really brought back memories - especially the ICU nurses. I am forever indebted to them for the care and kindness.
Rick
-
Mindy,
Thank you for your detailed description of your surgery. It's a long road and you are doing fine. I felt badly that you were so nervous and was glad the doctors gave you something for it. They say your state of mind plays a large role in your recovery so take deep breaths and take time to rest and meditate choosing a favorite image. Mine is the ocean and looking out over it with the sun shining on the water. Time by yourself everyday to just lay down with an eye bag over your eyes and taking slow deep breaths is time well spent. We need it especially in times like these.
Mei Mei
-
I want to thank everybody for being so supportive. I got thru the anxiety of surgery thanks to all of you. I do want everyone to know if they have questions please ask. I tried to give details. I'm not very good at putting it all down so if there are questions please ask. I am very thankful for Dr. Friedman and Schwartz. I actually was afraid of Dr. Schwartz because from what others say he has no bedside manner and he is brutually honest. Well being he is the neurosurgeon THE MAIN GUY I didnt care about his bedside manner. I wanted to know how knowledgeable and experienced he is. When I met him he looked at all my scans before he sat down with me. When he came to meet me he sat down and we talked. He said he did not see any growth. I asked about the trigeminal nerve and if he saw it touching it. He shook his head yes as I was asking. It was like he knew what I was going to ask. He came across confident and very very smart. I highly respect what this man does.