ANA Discussion Forum
Treatment Options => Microsurgical Options => Topic started by: Pajamas on October 31, 2012, 07:00:15 pm
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In exactly one week, Nov 7, I'll be having my AN removed at UCLA. Nervous, frightened, worried about people seeing me afterward since I won't look like myself. I've got an OVERWHELMING amount of support and everyone wants to come visit me. I'm scared.
I know they love me and accept me for who I am but I'm terrified of the partial facial paralysis.
My friends and family are throwing me a big party the night before surgery, last supper sort of deal. I'm so grateful, and grateful for everyone here.
Jamie
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You will be in my thoughts and prayers. It is wonderful to hear you have such wonderful support!!! I also had a small tumor removed (at HEI with middle fossa surgery in order to try to preserve my hearing). As soon as I could comb hair over the staples (which was within the next couple days), no one could tell I just had brain surgery, especially if I held on to someone's arm while I walked. Feel free to ask any questions you may have. There are so many great people on this discussion list.
karen
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Keeping you in prayer. We will be waiting to hear how well you are doing post op.
s
p.s. also in OC
post op translab on 9/12/12
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We will also be waiting to hear from you as well Sheila. Supportive thoughts for you both.
karen
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Jamie,
Best thoughts to you for your upcoming big day. It sounds like you have a big cheering section behind you, and you are right - they will love you no matter what.
Try not to assume the worst or to focus on the negative 'what ifs'. I know that is easier said than done as I am scheduled for surgery at HEI on 11/13, and I am experiencing a lot of anxiety over the surgery and the recovery.
Your tumor is on the smaller side and I would think that you could expect excellent results from your doctors.
Keep thinking good thoughts and then enjoy your pre-surgery party.
Ken
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Hi, Jamie ~
Please try to hold a positive attitude going into surgery. With all the support you have, this shouldn't be too difficult. I underwent debulking surgery for a large (4.5 cm) AN then had 26 FSR treatments and came through it all with no facial paralysis or other complications...and I was almost twice your age at the time. That was six years ago and today I'm doing great! You'll do fine too. Besides, you have youth on your side along with the thoughts and prayers of many, including me. :)
Jim
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Jamie, Concern is normal, but an experienced surgeon can often remove smaller tumors with no complications. Nerves can be irritated and/or swell, but most facial weakness, if any, is temporary. I had a large tumor like Jim did and was House-Brackmann scale 2 after surgery. # 1 on that scale is normal function. I was back to # 1 by the time I had the incision stitches removed, about 10 days. While the weakness was resolving, no one who saw me noticed anything. I also had a CSF leak that eventually resolved on its own, no medical intervention was required at all. It's nice so many people want to see you after surgery, but remember that fatigue is often part of initial recovery. Often the recovery is more demanding than the surgery. Give yourself time to begin a real a recovery. Many AN sites refer to "survivor's euphoria, " which amounts to so much relief the procedure is over, that we initially feel better than we do later. Good luck.
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Jamie,
You will do fine. When I had my AVM surgery in 1989, I also had a party the night before. Sounds like you are already off to a great recovery even before your surgery. Concern is a natural reaction but try to not let it turn into worry. Many friends are praying for you. Keep us updated on your upcoming remarkable recovery. Keeping you in my prayers.
Skip
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Thanks everyone for your kind words of encouragement. Moving in with my mom tomorrow temporarily so she can watch me after surgery. Oyeeeee. I wonder, how long do you think I'll live there? She's awesome and a huge help but, you know, I much better like my own apartment and my own life!
I am feeling much better these last few days after reading all of your comments. I've got the PMA!
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I was glad to have my husband help take care of things for the first month so I could rest and concentrate on healing. I understand your desire for independence and I'm glad to hear you have your mom's support for as long as you need her.
Karen
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Thanks everyone for your kind words of encouragement. Moving in with my mom tomorrow temporarily so she can watch me after surgery. Oyeeeee. I wonder, how long do you think I'll live there? She's awesome and a huge help but, you know, I much better like my own apartment and my own life!
I am feeling much better these last few days after reading all of your comments. I've got the PMA!
Jamie ~
Realistically, your period of convalescence could be a few days or a few weeks. I was driving again within a fortnight of my surgery and taking fairly long walks (accompanied by my wife) within a week after my hospital discharge. However, some AN surgery patients just need longer to recover. As you can see, everyone has a slightly different experience. I suspect that your recovery (and need to live at mom's house) will be relatively brief.
Jim
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Jaime,
Good luck tomorrow. I will say a prayer for you tonight. I have no doubt that you are going to do great.
Best wishes,
Ken
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Praying for you Jaime. Millie
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Thanks everyone. I'll be under the knife in less than twelve hours. My heart races and my eyes well with tears when I think about it. Your support means everything.
Jamie
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Hi Jamie,
Sounds like a lot of fun people are in your corner! Your 'tumah' is small and as I've been told, they are the easier ones to remove. I will be praying and thinking positive thoughts for a successful outcome on November 7th. You're young and strong and will be looking and feeling great in no time!
I'm scheduled at HEI for middle fossa on the 11/14 and I look forward to hearing about how you're doing.
Keep strong and positive,
Patti
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How are you Jamie and Patti?
Karen
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Hey guys,
I am pretty well considering I had brain surgery a week and a half ago.
I will say that this has been SO much harder than I thought it would be. The hospital stay was of course, icky, but coming home has been difficult.
I went in on a Wednesday, the 7th, and came home on Sunday evening the 11th. I was so dizzy in the hospital and could only look to the right, that I barely remember any of my nurses and doctors. (I NEVER vomited...still haven't. I was so expecting too!)
I am MUCH better healing at home and can't wait to have my staples removed on Monday the 19th.
Again, I am still VERY dizzy and off balance, have trouble with looking and turning to the left, and rest a lot. Yesterday I went down to the corner market with my mom and the car ride left me feeling pretty disoriented and discouraged. Clinging to the handles and sides of the car like a scared kitten. Obviously, there is no plan as I've only been out of the hospital for less than a week, but it's discouraging to think about getting back to work and school. It feels so impossible.
I do get better and better every day, I see it with little things like being able to shower alone, get a drink of water our of the fridge, etc.
I'm still in a lot of head pain though and am still on pain killers. Weening as we speak. I know it's important not to stay on those too long.
HOW LONG shall I have to endure this dizzy, sick, off balance feeling?
Jamie
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Thanks for giving us an update on how you are since your surgery. You actually sound like you are doing well so far, even though you feel miserable. I was also very dizzy and wonky headed and bobble headed after surgery. I walked and then rested as much as possible the first month and then returned to driving and work. The second month about all I could do was work and rest. I'm 3 1/2 months out now and feeling much better. Give yourself time. You are on the other side of the hardest part and welcome to the postie family.
Karen
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Hi, Jamie -
Thanks for the update and congratulations on becoming a 'postie' (post-op AN patient).
Although it may seem a bit daunting right now, you will steadily improve.
The 'ballpark' recovery time frame is six weeks and that may be plenty - or not near enough, depending on your body's ability to heal and for you to regain your equilibrium (and confidence).
I needed about two months (post-op) to feel relatively normal but I pushed myself to do whatever was hard for me so as to get back on track, as it were. I was driving (with my doctors consent) within two weeks of my surgery and it was never a problem. I hated vestibular exercises so, instead, I walked a few miles every day (it was summer in the northeast) and made sure I was walking over uneven terrain to help my brain re-orient itself to one-sided input. That proved to be very effective.
Being SSD remains an impediment but a relatively minor one (for me). Many AN patients who are SSD struggle with it and that is why we have the BAHA and other hearing aids/devices.
With your fairly rapid recovery so far, you should begin to feel much better and more in control of your balance within a few weeks, at most, although that is pure speculation, not a guarantee. :) I suggest that you try to wean off of the pain killing drugs as quickly as feasible, depending on your need. They do help but can quickly morph into a crutch that impedes recovery.
Please keep us updated as your time allows. Thanks.
Jim
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Jamie,
Good to hear that you are ok and happy to hear that you are home.
Recovery has not been a lot of fun but it is pretty amazing what our bodies are working on right now.
I actually got 3 solid stretches of 3 hours of sleep last night. Looking forward to trying to walk to the cafeteria with my wife this morning to pick out my OWN breakfast.
Hang in their - with rest, patience, and some of effort that Jim mentioned, your body will work hard to get you through this.
Hope you are feeling better today than yesterday,
Ken
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Again, thank you so much everybody. It's true, our bodies are amazing and complex pieces of machinery that need time and unfortunately, sometimes even more time to get back to normal.
SSD is something I was expecting, obviously, but as I did not have it going into surgery, I had no real idea what it was going to be like. It's been super traumatic for me.
I don't know if I mentioned though, that I had absolutely NO facial paralysis. Not even temporary. I am super happy about that.
Ken,
Three, three hour stretches of sleep INSIDE the hospital? Wow. Also, you're not too dizzy and sick to walk around or use the computer?
I have been wondering if the reason why I have been so dizzy, disoriented, and off balance is because my vestibular nerve was in such good working condition before surgery? I won't be like this forever will I?
Sigh, I am SO not used to be this dependent. It's horrible but I know I need to give it more time. It's only been a week and a half and I'm going insane.
Jamie
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Jamie, like you, my vestibular system was working just fine before surgery. It is amazing what a shock it is to wake up with a vestibular system that abruptly doesn't work. For us, our brain has to start from scratch to figure out it isn't working and then it has to realize the other side needs to begin taking over the complete job for both sides. That takes time. Some people with larger ANs have had this happen gradually before surgery, so their bodies may not experience the severe vestibular symptoms that we experience immediately after waking up. It does get better! :)
Karen
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Karen,
Thank you for the empathy. How long has it taken you to get back to normal since you're surgery? I feel so silly sometimes because I didn't realize what a big deal this was going to be. I thought I'd be sitting back at school taking finals and sitting at my desk within weeks of surgery but with this wonky head I am having a hard time picturing that future again.
I had no idea that my vestibular system was so important, oh how I miss being able to turn every which way! I'm hoping that the staples being removed tomorrow will help with some of my posi vibes.
I am walking, exercising, and doing all that I can but the only time I'm really at ease is when I'm resting.
Jamie
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Yes, Jaime-I too underestimated what the recovery would be like. I thought I'd bounce back a little more quickly-I didn't anticipate the facial droop-which I am glad you don't have-and the teary eye...I also thought my fullheadedness would be gone forever, but when I stand and walk it seems always with me... But I have definitely seen some improvement from the first two weeks...and lately I have started walking around the block once a day...
This is a long way from the first walk after surgery when I felt so weak and dizzy I cried.
Folks on the forum have said time and patience are our friends. It will get better. Mil
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Recently, I have felt my brain is able to process complex things much easier and more quickly like it did before surgery. My balance is much better and I'm not needing nearly as much rest. I care. Karen
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Jamie,
My tumor was almost 3 cms, so I think my body had been compensating for me for a long time without me knowing about it. I didn't have any symptoms other than tinnitus and slight hearing loss when I was diagnosed. Within 2 months of diagnosis, I did start to have some tingling/numbness in my face.
I think you are underestimating yourself and your recovery. I thought this would be a problem for me as we'll, as I am almost never sick and provide a lot of care and support to older parents and an older brother with health issues. But, for whatever reason I have been able to accept (at least so far) that for the next several months, my. life is going to have to be different. I'm going to listen to my body and more importantly my wife and not do anything to jeopardize my recovery. Who knows what we may learn about ourselves over the next several months just by watching, listening, and really paying attention?
You are doing great and you will be doing even better tomorrow than you are today.
Heal well, ken
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Hi Jamie when I was told I'd have to lose my hearing on my right side during a translab operation it didn't really bother me because I thought 'oh well I can still hear with my left ear' how wrong was I, I really didn't realise how it would affect me and was a terrible shock, like you I walked into hospital with perfect hearing and stumbled out with single sided deafness. Now after 19 months my balance is nearly back to normal and I have been fitted with a BAHA and can honestly say it has helped me
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I'm so glad to read through this thread and see that you came through your surgery just fine. I, too, had the same surgery November 2nd at Massachusetts General Hospital. Lord...I was terrified. Right up to the very minute I was being wheeled away. I told everyone I changed my mind. Have a tumor is cool!! And then I woke up and began the next phase of the journey. Like you, it hasn't been at all what I expected. In most respects, it has been harder. I had been warned I may lose total hearing in my right ear. I was okay with this risk. I, again like you, was more fearful of the facial paralysis or something more physically worse. But I woke with no facial paralysis (yay!), but did lose all hearing in my right ear. That, strangely, has been very hard for me to cope with. I never really thought about how the loss of my hearing would change things. How my first venture into a big store was so overwhelming to my senses that I broke into tears. And the pain. The headaches. I knew there would be headaches but no one can fully prepare you for this kind of pain in your head. No one can describe that to you.
But....BUT. We have survived! The tumor is gone and now we push forward. Every day I see small improvements. I was frustrated at first because I didn't think I was progressing quickly enough. But it has been pointed out to me many times that I need to allow my body to heal at its own pace. Thus, I'm glad for the small changes. Today? Today I put fresh sheets on the bed and vacuumed the house. Might not seem like a lot...but it was for me!!
Be patient. It will get better. Day by day. REST.
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Ken--Glad to hear your good news! I too had mine on the 13th and went home on the 16th. I had a 1cm+ AN with a lot of symptoms. I do think this help me, Jamie. I have already learned to deal with the issue of being SSD (lost hearing within 3 months of diagnosis). I do believe, Jamie, you're young and will begin to see great improvements soon. You're probably doing better than you think. "They" keep saying I'm doing great and I think "really?" I also don't look sick, scar is mostly hidden with hair, etc. This can cause others to think you're ok. Take your time and get well. Thinking about all of you who have had surgery recently
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My thoughts are with all of you as you go through these first days and weeks.
I hope you are able to have a Thanksgiving.
Karen
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Jamie,
I'm happy to hear you made it through surgery and are now on the road to recovery. I feel like some of what you're saying could have come from my thoughts. I had my surgery in July and I'm still feeling the wonkihead feeling. I'm assuming I'm going to be one who takes a little longer for this feeling to go away. I continue to do my own vestibular exercises, but will be seeing a certified vestibular therapist next week. There has been some improvement, but it sure seems to be taking a long time. Everyone is different though, so you could be feeling much better sooner than you think. I do recall holding on to things in the car while my husband drove me around. My mother-in-law didn't understand why I didn't want to go for a car ride. It's difficult, but try to keep a positive attitude.
Take care,
Lisa
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Hi Pajamas,
So glad to hear that your surgery is over and everything appears to have gone well. Just try to take one day at a time.
You are still in our prayers.
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I keep a big cushy pillow in the car for long car rides so I can cushion my head against the window when I'm a passenger. Lisa, I'd love to hear about your therapy with the specialist.
Karen
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Hi Karen and fellow posties -
I had middle fossa done 11/14 . There was a question by my neuro as to whether I had a vestibular schwannoma or something that mimicks it on an MRI. A little news I wasnt expecting and the only way to be sure was to go ahead and operate or wait to see if further growth/damage would occur in 6 months.
Needless to say, they operated. I have what is called a choristoma of the IAC - apparently I hit the lottery on rare rumors. It could not be removed because its wrapped around the bundle of nerves. They don't know much about the way these rumors grow or don't. I will most likely have to get MRIs for life.
I was not elated but to quote you, "it is what it is".
In hospital for 5 1/2 days. First 3 were really rough. I have all the balance issues as if it had been removed. Frustrating.
Coming home was great except I had awful spinal fluid pain and could not sleep. I was not holding down food very well and all the meds were (I've stopped all except nausea med) making me throw up.
Thanksgiving night I was up from 10:30pm to 6:20 am with dry heaves, hot and cold sweats and awful gas pains. Imagine if I had actually eaten turkey dinner!
Around 6:30 am I began experiencing vomiting and diarrhea at the same time.
Luckily at my husband's urging, I had a nurse scheduled to stay overnigh for first few nights and she helped me with what I can only describe as a hellish hour. Was ready to call 911 if it was not stopping. She thought I may have a bowel obstruction. It did subside and I slept for 16 hours straight afterwards.
I wasn't sure if I should post my experience so far. I know every surgery is different and outcomes vary. I hope my worst days are behind me.
If anyone wants specif details please pm me.
This too shall pass.
Patti and tumah
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Oh my! You've been through a nightmare!! I'm very sorry to hear about all of it. Do you know about anyone else with your diagnosis? I will be interested in your ongoing experiences and I hope you continue to improve.
Karen
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Just as an FYI here, I have landed myself back in the hospital with an infected incision.
Woke up last night with a pillow and hair full of slimy pinkish goop. Called my surgeon this morning and he told me to get down to the UCLA Emergency Room right away.
Docs said it's definitely infected and suspect staph. They spent a good hour squeezing junk out of the incision site and have done cultures and are waiting for the word. I had an MRI which was explained as, "unimpressive." Doc explains this as the imaging not showing anything really super acute but also since it doesn't show anything super acute, it means that I'm not in the clear. It made more sense when he explained it!
They are watching me tonight, pumping me full of antibiotics and other bloat worthy drugs. Nothing to eat after midnight because they are still thinking about going back in to the incision for a clean out.
OH PLEASE someone here tell me that they've had this happen to them.
I have been so sad about the slow rate of my recovery and I think that this infection must have really been putting my body through hell over the past two weeks.
I am so bummed to have to be back at the hospital again for 2-5 days but I am thankful now to be under the watchful eyes of the nurses and doctors here at UCLA.
Thanks all for your support.
Jamie
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Once again, I'm sorry to hear about this additional complication! Please be good to yourself. With caring, Karen
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Dear Jamie
So sorry to hear about this secondary infection - not uncommon I have been told. Doesn't help you I know. UCLA should be the best place to be and hopefully not for long. Don't let anyone touch you without scrubbing first. Be strong cutie.
Patti
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Jamie,
Boy, I am sorry to hear about your complication. But, maybe you are correct and it was factor to your slower than desired recovery.
I'm sure that ur docs will get it all figured out. Just follow directions and do ur best to stay positive.
I got back home to MD yesterday. Slept pretty well last night in my own bed. I truly hope that you are back in ur own bed soon.
Please let us know how u are doing.
Ken
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Hang in there Jaime. I have read these things can occur after surgery- I'm sorry you are in the hospital but it is an excellent one and they will take good care of you. Praying with you. Mil
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Hi, Jamie ~
Thanks for updating us even though the news is a bit negative, for now. For what it's worth, wound infection occurs in about 15% of AN surgical patients.
I hope (and will pray) that your incision is not seriously infected and that antibiotics can handle whatever is there without a need to re-open the wound to debride it. Please try to keep us informed as best you can (under the circumstances). Thanks.
Jim
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Jamie -
Did you get to go home or still at UCLA for secondary infection?
Cruel joke this bugger is playing on you. I hear the frustration in your words....can relate. I want to be back to normal too. May this week be a better one for you. I think being dependent on family or friends for what feels like or friends is hard. I've been reminding myself that this recovery can't be rushed so I am TRYING to go with flow. Please keep updating your condition as you are able.
Since we are coastal neighbors (Malibu) maybe we can laugh and commiserate over lunch one day soon. Keep the faith kiddo.
Patti
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Hi Patti,
Yes I am still at UCLA. I've been getting rounds of massively strong antibiotics for my staph (yes, concluded it's staph) infection, and tons of other crap. There is pus oozing out of it which is apparently good news.
Doc just came in to tell me that I will most likely be headed into the OR in the morning for what they call a wash out. They will reopen the incision and clean out the infection. I'm not looking forward to this.
A team of infectious disease specialists have also been in and have mentioned a possible spinal tap to rule out meningitis. Basically, I'm horrified and exhausted.
I AM however, hanging in there. I know that everyone here is doing what is best for me.
Laughing over lunch seems like such a fun but far off dream! I can't begin to imagine what it will be like to feel normal again.
Jamie
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Jamie, I sure hope you continue to send updates. Who is there for you now? Those of us who have had surgery will feel at peace with what is happening to you only when you are on the other side of this. With caring, Karen
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Jamie,
Just adding my prayers to your warrior group here. We are anxiously waiting to hear that you are getting healing.
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Hey Jamie - I am so sorry for all of this extra mess your have to deal with . I sent you a PM as well.
Much love,
Patti
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Hi Jamie I hope and pray that things went well for you today. One year ago I returned to Mass General Hospital 6 Days after my AN surgery due to a meningitis infection. After a second surgery to clean out the infection and remove my titanium mesh I was placed on IV antibiotics for 2 months. Not what I was expecting.Today I feel good.The infection and tumor are long gone.I know how hard it is to suffer these complications but you will overcome this. Be strong and hang in there. Peace Dave
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Dave, it is encouraging to hear about your journey and how it has turned out. :)
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Jaime...hugs and prayers for you today...Millie
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Jamie,
I'm sorry to hear about your complication. I know it's hard, but try to keep a positive attitude. Thinking of you...
Lisa
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Hey everyone,
Thanks so much for all of your support! Turns out I will need that second surgery and I'm waiting to go back down to the OR now. You know how it is, I was supposed to go down at 10:15 but I'm still waiting. They will reopen the incision site and go in to clean everything out. They said they will remove the bore holes and clean those out, and may even need to remove bone. Hopefully the infection doesn't run that deep.
They've inserted a PICC line today, this will feed me antibiotics for up to 6 weeks daily, after I am discharged from the hospital.
Again, all...thank you so much for being interested and offering support. I'll keep you posted!
Jamie
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Jamie,
Good luck. I will be praying that everything goes well for you. You will get through this and much better times are ahead for you.
Stay strong!
Ken
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Jamie -
Continued prayers and support coming your way.
Take good care,
Patti
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Sorry to hear that you have to go through a second surgery. This also happened to me and while it was a set back my infection (meningitis) has not hampered my overall recovery. On my second surgery the surgeons removed some bone and the titanium mesh covering my skull.This was done to help the antibiotics reach and kill all the bacteria.My PICC line was in place for 8 weeks and I got quite used to it.The visiting nurses were awesome. These complications can happen and it stinks when they do but you will beat this. Peace Dave
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Jamie,
I am truly sorry to read about the difficulties you are having. Saying prayers for you. Keep your spirits up, the end is in sight.
Skip
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Jamie,
I am so sorry to hear of your complications! Praying for you that you will be better soon!! My surgery is tomorrow and I too am a bit scared. I think that's human nature. I have a lot of family and friends praying for me so I have to give this to the Lord and know He will look after me. I've prayed the same for you the He will look after you and hopefully you will be all better soon!
Hang in there!
Glenda
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Jamie, I join the others in sending prayers and healing thoughts your way. You are not alone. All of us are here for you with caring.
karen
(Glenda, you will also be in my thoughts and prayers. )
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Thanks everyone for your thoughts and prayers. I'm finally home! Well I've been home for a couple of days now.
I have a PICC line and was put on 6 weeks of oxacillin, 24/7. Turns out my body isn't a big fan of oxacillin. I ended up with rashes and being itchy all over my body. One night I didn't sleep at all, just scratched my skin raw! They switched out my antibiotics now to Clindamycin. I'm still connected to the pump 24/7 for the next six weeks but it doses me every 8 hours while giving me a tiny amount the rest of the time in between in order to keep the vein open.
I have a fanny pack that I have to wear around with me all of the time which contains the IV bag and pump/motor. It's annoying but I keep reminding myself, "what is six weeks compared to a lifetime!?"
I'm glad to be home after another week in the hospital being poked and prodded. All of my veins collapsed and they ran out of places to take blood from until they went into my fingers.
I've been on steroids now for quite a while and I've got that steroid face as well as an extremely puffy body and distended belly. I'm not used to feeling so gross and obviously not used to looking so different. I can't wait to get back to my normal self. Has anyone else here experienced this and have any words of wisdom to offer?
All in all, again, I'm glad to be home even though I'm still not home, home. My mother is sort of taking care of me at her house while I heal and I'll be back at my own home in just another week or so. Another thing I can't wait for! Staying with my mother for any longer than I have to will make me insane! Hahahaha.
Thanks again everyone for your support during this nightmare. I hope that in a year I'll be able to look back on this and wonder if it was all just a bad dream!
Jamie
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Wow, and sorry to read of the difficulties you are facing. I never experienced what you are going through now, but am familiar with bad infections and peripherally inserted central catheters as my brother had endocarditis, a heart valve infection, last summer - right before my AN surgery. His infection required open heart surgery to scrape out the visible infection, apply disinfectant, and repair the perforations in his mitral valve. Following that he had a PICC line for 5 weeks to administer antibiotics to be sure there was no more infection. He, too, was allergic to one of the antibiotics and was shifted to vancomycine. That drug caused wild swings in his sugar levels and he was on insulin daily. Today he is fine.
It is easy for me to say, but you will get past this. Try taking this in managable amounts, like a day at a time. Try not to think in terms of weeks, or how long until the end comes. Time will pass faster that way. I wish you the best for the next 6 weeks and keep the forum posted if you can.
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I'm so sorry to hear about all that has happened to you. You are a trooper! What a great attitude considering all you are experiencing. Keep us posted.
Karen
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Hi Jamie I am so glad that you are home.Last year I returned home on Dec. 13 th after 5 weeks in the hospital and it was wonderful to sleep in my own bed. My Picc line was in for 8 weeks and I had a serious reaction to Vancomycin that caused all my skin to peel. The Doctors took me off the steroids early due to my infection so I never experienced the puffiness.
Returning home was the beginning of the end of my nightmare and now one year later it does seam like a bad dream.Rest, listen to your Docs,remain strong and know that there are better days coming Today I put up Christmas lights,went to the gym, and met my wife for Sushi.Life is good and it will be that way for you again also. Peace Dave
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Jamie's,
So glad to hear that you're finally 'home'! Sounds like you've been to hell and back. Good for you looking at the bright side of this not so great journey. I was on steroids for a month once and it was a sobering experience to say the least. You'll return to normal pretty quickly once you get off of them.
Keep smiling and know lots of people are rooting for you!
Hugs,
Patti
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Hi Jamie,
I feel bad for you, knowing what you have gone through, but.....
Nothing says it better than your comment "what is six weeks compared to a lifetime!". With an attitude like that you are already doing better than most people in your situation. You have been given good advice here now rest and let our prayers be with you.
Skip
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Jamie,
So glad to see your post. I have been praying for you to catch a break.
Sounds like you are well on your way to overcoming your setback and back on your road to recovery.
Best wishes for continued progress. If you get a chance to have lunch with Patti (pattiken) you should do it. She is a neat lady. She had surgery the day after me at the House Clinic.
Ken
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Hi Jamie,
I'm glad to hear you are back on the road to recovery. How are you doing with the symptoms/side effects of the AN surgery? I know you were feeling a little discouraged.
Take care,
Lisa
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Hi, Jamie ~
Thanks for the update.
Your post-op complications are certainly not any fun but you're handling them as well as anyone could. Having patience and the realization that this is a few weeks out of your life and it will all pass is exactly the kind of attitude that will make the inconvenience and temporary physical discomfort and changes bearable. Once you're healed, a healthy diet, some exercise and your body's natural inclination to normalcy will kick in and I'm sure you'll be looking and feeling good, soon. Your youth will be a positive factor in your recovery and with your positive attitude, you should be back to 'yourself' within a few short months.
Jim
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Jamie,
Adding my well wishes and gladness that you are home and healing. We have been and will continue to pray for you.
s
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Wow, I'm sorry to hear about all of your complications. I was hoping that your surgery and recovery would be easy. Good luck on all of this. Your attitude of "what's six weeks" is right on the money -- you will get through this and feel better. As I reach my five-month anniversary (tomorrow) I keep thinking "I can't believe just how badly I felt only a five months ago." Someday you will do the same -- it will be a memory and far, far from the daily reality of your life.
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Hi Jamie,
So sorry for everything you have been through. You have a Great attitude! I'm sure next year you will be able to look back on this as a bad dream....I'm glad you are out of the hospital and steroids can do a number on our bodies but it will be back to normal once you are off of them. Praying you heal fast sweetheart!! Hang in there, you are a trooper!!
Hope you have a Merry Christmas and enjoy being with family!
Glenda
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Hoping everything is still ok.
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Hi All,
Yes, everything is still ok. I am finally living back at my own house (I came back just before Christmas), I started school and work back up today, and though I feel weak and tired all the time, I am actually feeling pretty good over all.
I had an MRI this past Friday and will get the results at my doctor appointment this Wednesday. I am hoping that the infection has not only ceased to spread, but ceased entirely. If so I will be able to have my PICC line removed. If not, they will extend the treatment period. I'm going on six weeks now with this PICC line and boy let me tell you, it's a pain is the *$#!
It's been such a long road. I NEVER thought I would be back at school and work, let alone back today. If felt so great to be around my coworkers and classmates.
Like I said, I'm still really weak and tired, I still also have some balance issues that seem to SLOWLY be getting better. Overall I am happy to be here, happy to be alive, and happy to be on track to graduate in June!
xo
Jamie
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Glad to hear that everything is coming together for the better. You are an inspiration to many, thanks for sharing your story with us.
Skip
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Jamie,
Very impressive on your return to work and school.
I just started back to work yesterday and I didn't have any big complication like you did. I hope you get good news from your MRI and can say adios to the PICC line.
My wife set up a Caringbridge site for me which I posted to during my time in California and then my initial recovery time back at home. After you had posted about your infection, I mentioned you on my site and asked people to think good thoughts and, if so inclined, to say a prayer for you. You may be happy to know that most people don't ask how I am doing anymore, but they ask how YOU are doing. I will be happy to let them know that Jamie from UCLA is doing well.
Happy New Year,
Ken
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sorry to hear about the infection. Like you I am terrified of facial paralysis. I will have this done over the summer. scared to death. what is SSD?
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sorry to hear about the infection. Like you I am terrified of facial paralysis. I will have this done over the summer. scared to death. what is SSD?
SSD is an acronym for Single Side Deaf.
Jim