ANA Discussion Forum
Treatment Options => Microsurgical Options => Topic started by: NEbluebells on April 02, 2016, 11:27:36 am
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I wanted to introduce myself - I was diagnosed with a AN (2.2 x 1.9 x 0.9) on Mar 11, 2016.
I noticed hearing loss in Jan 15 after a painful ear infection and I kept going to my primary care provider (all told 7 appointments) before they would refer me to an ENT. They kept telling me I had allergies or ear infections, and prescribed everything from a netipot to steroids. It was complicated by the fact that we have two small children in daycare and they seem to also bring home lots of germs, so we are frequently sick with viruses. Finally, I asked my trusted pediatrician's office for a recommended PCP, who referred me to an ENT immediately. ENT ordered a hearing test, which showed a huge loss in the middle range and only 40% word recognition. Even in the past couple of weeks I feel like it has gotten worse. An MRI was ordered and AN was confirmed.
We live in Nebraska and were referred to a doctor that suggested the retrosigmoid suboccipital approach. I am most afraid of debilitating headaches, and got a second opinion in IA that suggested translab, but was a bit nervous about their program since it's not a team approach. Finally my CD arrived at the House Clinic and Dr. Slattery called us last night (Friday night) to discussed. We are pretty confident we want to proceed at the House, but are now trying to come to terms with scheduling, logistics, etc.
We are really looking forward to putting this all behind us and getting on with our lives, no matter what they look like after this change. I have found the limbo in trying to decide a course of action very difficult.
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Do you have other symptoms besides the hearing loss? I take it you've been looking around the forum for a while if you sent a disk off to House. Have you ruled out radiotherapy? If you're willing to travel there's some great options out there. Welcome to the forum.
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Yes, I found this forum and read practically every post the first 4 days after my diagnosis!
I don't think radiation is for me, because I think I just need to get it out and move on with the new normal. It's been a tough decision bc my father-in-law had a much smaller AN discovered a few years ago and had radiation and is very happy with his outcome. My husband wanted me to pursue radiation, but I just need to move on, so I'm pretty confident surgery is the right choice for me.
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Also my symptoms are mainly hearing loss, however I do have facial twitches and numbness. Also I had two extremely horrible bouts of vertigo that lasted about 4 days each. I also have a weird tightness on my left side, down my throat that ends by my clavicle. I also notice I feel like I want to throw up when I start moving, but if I can push through it, it generally fades after 40 minutes of exercise.
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NEbluebells,
I would agree with rupert that you should consider exploring all options to make sure you are comfortable you have made the right decision. Based upon the size of your tumor both microsurgery and radiosurgery would appear to be options, but there are many factors to consider.
If you continue with the microsurgery approach, it has been shown that the retrosigmoid approach does result in the most headaches. Translab has less headaches, but does result in a complete loss of hearing in the AN ear. Your choice of facilities is excellent. I just had microsurgery at the House with Drs. Slattery and Schwartz on Feb 18th and my result has been very good so far. You don't say who you have chosen for a neurosurgeon, but I would recommend you speak with Dr. Schwartz since he has well over 1000 AN surgeries under his belt. Many on this forum have also had very good results with Dr. Schwartz. If you are interested, a summary of my journey is at the following link:
http://www.anausa.org/smf/index.php?topic=22581.0
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Where did you go in Iowa? Just curious as Univ of Iowa is THE Iowa place to go as they do many many ANs. I go there and have NF2 so 3 tumors out there. They do have many from out of state. Finding the right place for you to go to that you are comfortable with is very important. Cheryl R
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I agree, the treatment decision was the hardest part. I had my surgery at House almost 3 years ago, and am so thankful everyday! Dr. Schwartz is definitely a genius! I flew out to California from DC, so fully across the country! Once you start looking at logistics, I would suggest for your family to stay at Seton Hall (accomodations connect to St. Vincent's Hospital) for at least the time you are in the hospital. It's super convenient, very reasonably priced, and surprisingly nice! Good luck!
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Michellef08, I think you hit the nail on the head...the "selecting the treatment option" is just awful. I feel like my family and I all need closure and microsurgery is really our only hope at that, although maybe we won't ever have it! I'm glad you had a great experience at House. Honestly, I've combed through this website since my diagnosis, and with the exception of some of the nurses/front office, it's hard to find negative things about House.
Cheryl, I sent you a message about my experience in IA. It was a good experience, but I think overall I was just a little nervous that they didn't use the team approach with a neurosurgeon, which seemed to be highly recommended, but maybe I've missed something there. It would be much more convenient to schedule the surgery in IA, but my insurance does allow many choices, so I felt like I should choose the place that has the most experience, which seems like House (Dr. Slattery is whom I'm working with). I also really liked the idea of possibly having the synergy of other ANers that seems common at House during recovery. I really loved so many things about my IA experience, but the teaching hospital portion of it made me a bit more nervous than what I may expect at House.
UpstateNY, thank you for sharing your story. It is so helpful to read about the experiences by so many other members of this club. You know, my father-in-law also had an AN about 2 yrs ago and pursued radiotherapy. I think bc of my age (36) and need for some type of closure, I just don't think radiation is the right choice for me. Although my in-laws (bless their hearts) think radiation is a better option, bc my father-in-law had great results (his was about half the size of mine). I am happy to say that while the decision has been painful, it was less so since I am really not interested in radiation at all.
Rupert, thank you also for your kind words and welcoming me to the forum. I cannot express how happy I am that I have found such a nice supportive group of folks. The first couple of weeks after my diagnosis were ok, but now it seems like I find myself crying out of the blue. I don't want to be frozen in fear, I just want to take some kind of action to regain some control in our lives. I hope that doesn't sound irrational, but I just want to be the one pursing the most aggressive treatment possible to kick my AN to the curb.
Thanks again to everyone for all their help and encouragement. I'm so glad to have found you all!
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I have wrote you back also. A team approach is anytime 2 surgeons are involved and the Fellow and a neurotologist would be a team approach. The fellow does the open and shut and Gantz does the tumor. My surgeries were 6-8 hrs.
I would want a neurosurgeon for other types of surgery. The Fellows have went on to be at several places where they were in a high up status. You need to be comfortable with where ever you go and do wish you the best.
Cheryl R
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The tentative surgery date is set for 12 May...it was either that or 28 Jun, and I am so ready to just get this over with and move on, whatever that brings. My facial/eye on the AN side have been twitching non-stop for the past 3 days and I just have an awful feeling that it is growing, and I tend to trust my instincts.
Does anyone else "feel" their AN as a presence? I felt this even before I was diagnosis. When I went in for my hearing test (pre-diagnosis), I told him that I just knew there was something "there". I had no idea it was going to be an AN, I thought maybe it was going to be some blockage in my sinus cavity or something. But my AN gives me the feeling of a presence...has anyone else had this experience? When the audiologist asked me to elaborate, I told him that when I was little, we used to play a game of "hide and seek in the dark" and you could sense the presences of walls/furniture when you got closed to them, even though it was dark and they didn't have any smell/sound. I told him it was like that...except I felt the presence on the left side of my face.
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Update- confirmed the 12 May date and all pre-op appts for 11 May. Thankfully my mom can come stay with our kids for 2 weeks. We bought our airline tickets yesterday and confirmed our reservation with Seton Hall three days ago. They are fabulous to reach via e-mail; I emailed them on Friday and they confirmed our reservation on Monday.
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Received the inprocessing paperwork from House a few days ago. Included in the packet was a list of lab work ordered by Dr. Stefan. The labs are scheduled in 4 days. Things are starting to get real and a bit stressful. I'm trying to button up things at work and get the kids prepped for my husband and I both being gone for 2 weeks. We've never left the kids before and I am sick with worrying how much I'll miss them (among other things). But they are just too little to take with us to California and would be too much of a handful for my parents to manage in a hotel room.
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I'm schedule for surgery on May 9. Lots of similar feelings to you. Can't wait for this to be over!
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Well, we are T-4 days to the surgery. Right now things that I'm doing are moving money from savings ($1100 co-pay for the hospital facility fee due at time of check-in; assuming $80/day for the room at Seton Hall; and $500 copay for the surgery...I'm sure more bills to come, these are just the expenses that I've been told about pre-visit, so I'm getting all the financial things in order).
We updated our medical power of attorney, trust and wills (hubby is traveling with me and I'm terrified that something will happen to both of us leaving our kids orphans...anyways, you can tell I'm totally stressing about leaving the kids - it's just brutal, I know travel for medical care is a luxury, but I just hate being away from my littles.)
We spent this Mother's day weekend running errands (getting the kids new summer clothes/shoes, getting all the groceries stocked, meals prepped, schools notified, summer camp programs paid for/emergency contacts updated...I had my last day of work on Friday, even though we don't fly out until Tuesday. I'm really glad I took the extra day so I can have time to get the house cleaned and laundry done before we fly out. I know I have a bunch of paperwork on my medical history I'm supposed to fill out and a prescription for something (I can't remember what) that I'm supposed to take 3 days before the surgery, but I'll tackle that tomorrow.
I also had a KILLER headache on Friday and Saturday - I think it was probably a migraine, but I had to get projects wrapped up at work and just took the zofran to stop the nausea and worked through it. Ugh. At the risk of TMI (and in the interest of helping others so they don't have to go through what I went through) zofran causes horrible constipation and I'm pretty sure it should always be taken with some kind of stool softener. I'm glad I learned this before my surgery - I plan to be prepared!
Overall, I'm incredibly anxious and my poor hubby and I got in to a fight (very rare for us after 15 yrs of marriage). We both know it's just all the stress that is piling on - ugh! I also haven't been exercising for the past 2 weeks because of rain, schedule and probably a bit of the blues. It definitely helps my mood, so I'm going to try and get walking tomorrow.
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Night before is finally here. I'm thankfully just really tired and am hoping for a night of rest before I start the road to recovery.
It's been a whirlwind of doctor visits today, but I can't say enough nice things about how nice everyone is here at St. Vincent/House. From the security workers to the lab folks to the doctors. Every. Single. Person has been nothing but genuinely kind, caring and helpful.
As far as emotionally, I'm a bit of a wreck, I worry about my family worrying about me :(
Thanks for all the folks who have sent me messages wishing me well - I will ask my hubby to update as soon as he can.
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Wishing you the very best outcome...
Many people that you don't even know are thinking of you and sending good thoughts.
I'm one.
Take care,
sunny
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Hope all goes great today for you, you are in super skilled hands !!
I wish you could have "excused yourself" from some of the stress around cleaning house, shopping for kids summer clothes, etc - all that would have worked out fine - but I guess now, post surgery, you can feel more relaxed that not a single thing was neglected !!
Will be watching for your post op update !
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Thinking about you. Hope you are doing ok after surgery. Take it one day at a time. It's not an easy road but you have all of us who have been through it. Sending Hugs!! Lori
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Hello friends, this is Mr.Nebluebells. Nebluebells is 48 hours post op and is doing great...is starting to walk around. She retained facial nerve function and they were able to remove most of the tumor. The doctor said they left a little sliver of tumor but it's too small to even be recognized on the MRI. We could tell the doc was a little disappointed to leave a small piece behind, but said it will likely shrink on it's own because the blood supply is gone. She says thank you to all of you who are sending your thoughts and prayers. The team at House Clinic are amazing.
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Thanks for taking the time to pass along the good news to us!
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This is great news. Mine was Monday. Still very dizzy. Hope to hear from her when she is at fuller strength.
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Thanks all. Next update - doing several laps around ward. Still dizzy, but no vomiting which is nice. Hoping I can stay in the hospital another day. Still require pain killer every 4 hours. Very little appetite. No tinnitus, knock on wood. Overall I'm very thankful that I was able to come to the house Clinic. The staff has been excellent and I would them in a heartbeat. I was a little disappointed they had to leave a sliver of the tumor... One more thing to worry about.
Greece, are you at home now doing your Rehabilitation?
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Yes, I came home Friday. Things generally going well. Still very dizzy. Other than that my main complaints are a plugged sensation in my ear and some throbbing when I stand up or change position. Trying to stay positive. Somehow I never vomited! I'm just taking Tylenol now. And stool softener LOL.
I'm so sorry they had to leave a sliver of tumor. Did they say why? Was it on facial or auditory nerve? Mine was pressing on facial nerve pretty hard so I've got some taste disruption and a little weakness. Doctor thinks that should resolve with time.
I've been eating meals at the table and playing uno with my kids, so it's fun to get back to some normalcy.
Good to hear from you. Hang in there. I hear it gets better!
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Thanks for all of the encouragement. I think dr. Schwartz felt disappointed that he had to leave some of the tumor but he said it was microscopic. He said that he could see them on the facial nerve and they were very stuck to the nerve. The good news is I have pretty good facial function but some dizziness. Hearing hasn't changed much since I had lost most of my hearing for the surgery. I do you have the feeling of a plugged ear but it's been like that since I was diagnosed. I do get stinging headache Sensations every now and then for about 2 seconds at a time. I've been on Tylenol since yesterday and I'm happy to be done with the hard core medication. It's so nice to have the support from others that are going through the same situation. Thank you for staying in contact with me. It sounds like your recovery is going very well I hope you keep progressing. It's nice that you got to go home 5 days after the surgery. You are a Rockstar! BTW, mr.neblubells is still typing.
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I too appreciate this interaction! I got my stitches out yesterday. Lots of throbbing from where they had to cut my jaw muscle. Right underneath the bow of my glasses. Other than that they didn't seem too concerned about anything.
I watched a movie last night that made me laugh so that was a novelty!
How long will you stay in LA?
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Hope your are feeling better and stronger every day. Your in my thoughts. Lori
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NEBluebells & Greece Lover - congratulations both, sounds like great outcomes!! So glad you are past the surgery and well into your initial recovery !
I'm scheduled for retro June 23 - my doc said no scuba post-surgery so we went for a quick scuba trip (Cozumel, per the surgeon's recommendation!), just got back last night. it was fantastic and at least I can still snorkel after surgery. Also did some Zip Line rides over the jungle - not sure I will want to do that post surgery !! the climbs up to the launch platforms made me just a tiny bit dizzy, possibly my AN caused that.
Must say I am a bit nervous already for the surgery. Helps a lot seeing your post-op updates !
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Good luck, Sheba. I've had a rougher couple of days. May have overdone it and have a low fever and more tired and mild headache. Feels now like I'm stuck in the mud. But I'm elated that things went well. The dizziness is a lot to get over. I'm glad you went and had some fun. I lived in Belize for a year, fairly close to Cozumel, so I know the beauty of that part of the world.
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Hello friends, first time really posting myself since surgery. I'm 12 days post op and feel mostly amazing. I have been off the steroids for 24 hours which has helped immensely. Those were very difficult to handle. I think i have what is called Survivor's Euphoria. I haven't ever taking recreational drugs before, and very few pharmaceutical drugs, for that matter, but I have just an amazing sense of almost constant euphoria. It's wonderful. I really thought I was going to die during the surgery. I know this was not reality, but no matter what anyone told me, I was 100% convinced I wasn't going to wake up. When I woke up, I was just so happy to be alive, there really are no words for this awesome feeling of being simply alive. I don't know how long it's going to last-maybe it's coming down a bit as the steroids pass out of my system, but over all I just feel amazing. Like I look out at the blue sky and it is so awesome. And then I eat a peach and it tastes like the most delicious thing that has every entered my mouth. It is like what the media portraits heroine or maybe LSD to be...I really don't know because I have never experienced anything like this before....the closest thing that is like this is childbirth (in my experience). Like once you have the baby and you have all these amazing warm and happy thoughts and you could just look at your baby for 72 hours straight and only think about love and all the good things in the world. It's kind of like that, except no adorable baby. Also instead of your lady parts hurting you are super dizzy. I realize I sound like I may be on drugs, but I'm not - I'm down to 3 tylenol in a 24 hour period, which I think is really good. The only other thing is a probiotic type thing they gave me to keep taking another week because the steroids can make you get ulcers so it's to protect your tummy from getting ulcers. I did ask the doctor if he thought the euphoria was from the steroids and he thought it probably was due to the steroids and all the stress that is now relieved from having completed the surgery. I'll make another post with more thoughts specific to the past 12 days, but over all I just wanted to post how well I feel. So glad to have done the surgery!
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So glad to hear you are doing so well. I'm still so dizzy. Frustrating!
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I think I will just make a series of posts by topics, rather than try and do a chronological summary.
Here goes -
Waking up
The first thing a remember upon waking was that my throat hurt (6 on a 10 scale), I couldn't open my eyes without going into a total spin and that my fingers were slightly twitching. I have no recollection of what the ICU looked like, but I do know my very kind doctor was right there next to me when I woke up (I recognized his voice) and there were two wonderful nurses touching my arms and I could tell were very near to my body. One nurse gave me some apple juice, which felt so nice and cool on my throat but I immediately threw it up. Then the twitching became very bad in my hands. The twitching was from low potassium. I seem to remember one of the nice nurses telling me that because they have to make sure you are urinating, they give you diuretics during surgery and sometimes your potassium can go low. Well, after I threw up, my arms did start to shake and they held my arms down and put a new iv in my right arm and put potassium into my arm there. That hurt a little (maybe a 5 on the 10 scale). It also left my entire fore arm black and blue. They also had more potassium in the normal line through the iv port. They said they had to do it slowly to make sure my heart didn't get injured from too quickly administering it. They kept asking if I wanted my husband and dad to come in and visit. I actually did not want to see them. I only wanted ice packs...all over my body. Really weird. And that is pretty much all I remember of the ICU. My hubby and dad did (apparently) visit me in the ICU, but I don't remember them coming or talking to them. Overall, I will say my pain was never above an 8 on the 10 scale and I really don't think it was that high except for the whole potassium thing that made me crazy anxious. I'd give ICU a 7 on the 10 pain scale over all. Also, the nurses were really all super nice. It's like they were all there just making sure I was ok, they let me have as many ice packs and ice chips as I wanted. You could totally tell they knew what they were doing (even though I had my eyes closed the entire time - I never saw their faces, but they were all angels.) They took out my catheter (which also didn't hurt, although I was vomiting so badly, I got the impression that I was forcing it out with my wretching). But like I said, overall it was not nearly as bad as it could have been. I had my gall bladder removed 4 yrs ago and waking up from that was at least 50 times worse than the translab.
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Tylenol
So, perhaps this is a stupid post, but for those that may be less familiar with drugs (like me), I wish I would have known about tylenol BEFORE my surgery. Even though tylenol is an OTC, it's super dangerous and you have to make sure you know what you are doing. Tylenol comes in different tablet forms. I had anxiety about swallowing pills after surgery. And there are so many pills to swallow after surgery, and you are so tired and it's hard to keep track of things. I had these crazy thoughts that I would choke on the pills. So, if you are going to have surgery, i would recommend finding coated Tylenol pills - they make swallowing them much easier. Also, there is a limit of how much tylenol you can take in a 24 hour period - I think it's 3000mg. In the hospital I was taking 2 325 mg tablets, every 3 or 4 hours, but when I got discharged I only had 500mg tablets from the pharmacy and it required some amazing mental effort to figure out how to space the tylenols correctly. My hubby thought I was crazy about this, but I'm just sharing my story. It was super stressful. If I had to do it over again, I would have gone on amazon before i flew out for surgery and found 100mg coated tylenols and bought 1000 of them for pain management for the first week after surgery. Now, at 12 days post op, it's not a big deal because I just take the 500 mg with my coffee at breakfast, mid afternoon, and at bedtime and i'm good to go. However, 6-10 days post op i was counting the minutes when I was about 30 mins before my scheduled dosage was due.
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Hair
I have hair that is quite long (about to the middle of my back). As I have mentioned before, I was on the verge of a nervous breakdown as my surgery date approached, and post-op hair care was the LEAST of my worries. Having come through on the other side, I wished I would have taken the time to get a chin length bob done on my hair prior to surgery. It would have made things so much easier. As it was, they shaved very little, but all just looks a mess. It is also coming out in HUGE clumps, I would expect as a result of all the steroids/anesthesia/stress. It is just all super gross. Also, they give you a type of ointment/like neosporin to put on your sutures. And it gets everywhere. As in the entire left side of my head looks like a grease slick.
I was able to wash my hair at 7 days post op, but even at 12 days post op, I still can't get all the vasoline-like gunk out of my hair. Its all just super gross. I got my stitches out at day 11 and will fly home day 14 post op. I think I'll continue having to rock the bed head look for another couple of weeks. I am too afraid to go to the salon. Mostly it's germs I fear, but also the thought of laying my head back to have my hairdresser wash it makes me scared of some type of spinal fluid leak. The doctor said I can wash it, just make sure to dry it with a blow dryer completely, it just seems like so much effort than what I want/can extend on something as stupid as hair.
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Packing
Again, I really missed the boat when I packed. For a 14 day trip I brought one pair of pants. No shorts, no skirts, no jeans. Literally one pair of pants that were not pjs. As I mentioned before I really thought I was not going to wake up! Here is my list if you go to the House:
1. Coated tylenol in the smallest dosage you can find (lots and lots of them - you take 3000mg/day)
2. Miralax and/or Colace - try experimenting with this well before the surgery - pretty much everyone tells you not to strain during a BM and you will live in fear of stroking out on the toilet.
3. A wide tooth comb
4. Some kind of detangler/conditioner for after surgery
5. Biotene mouth spray, even if you don't get dry mouth from the surgery, California is dryer than most places and the mouth spray is amazing
6. Soft tissues because you may be so overwhelmed by all the beauty of the world that you just burst in to tears of joy from being alive
7. A pill box
8. pencil/pen and paper - I had to write down every pill I took bc I couldn't remember which ones I had taken and which ones were due, etc. this helped
9. soft socks - my feet were so cold and I loved my blanket and soft socks my coworkers sent me with
10. Sunglasses
11. Refresh single drop tears. These eye drops are amazing and I love them
12. Hair dryer - you have to blow dry your hair after you wash it
13. two cups to help you brush your teeth. You put one cup under your chin and spit into the first cup, then you sip water from the other cup and spit that back into the cup under your chin. It works brilliantly and you won't but extra cranial pressure on your head from leaning over the sink.
14. Very small tooth brush, it's hard to open your mouth after surgery, so bring a nice small headed tooth brush
15. Watch
16. Cell phone (the light is really handy)
17. We ended up buying a blender while we were here...yes, that is crazy i know but my hubby (bless his heart) took an uber to Macy's and picked up a nutribullet and a bunch of fruit and veggies from Whole Foods that is about 5 miles from the House. The food at St. Vincent was not that great and when he showed up in my room with a blended peach, kale and mango smoothie it was the best thing I had ever tasted. (see item number 2 for more info)
18. A small bottle of Ibprofen - the blood post surgery pools in your legs and back of your spinal chord, this causes really bad stiffness and it hurts alot to walk (this happened for me at days 6-9 post op). Motrin was recommended (my wonderful dr gave me the heads up this may occur - which it did, so I was well prepared with the Motrin, and it took the edge off. I would estimate that pain was much more than I anticipated and I would have been scared about it, had he not mentioned it to me before it happened. Just one more great thing about the House - it's like they anticipate everything and are totally cool and calm and collected.
19. An ear plug for your good ear - not sure why this works so well, but I have an ear plug I got at a hunting supply store for folks that shoot guns - they were kind of on the pricey side, but it works very well - it helps in keeping everything "balanced". Again, I'm not sure why hearing less on one side makes SSD on the other side easier, but it does. Make sure you bring a plug for your good ear - I use my all the time and I think it must be keeping me from getting headaches.
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Convalescence
Yet another wonderful thing about coming to the House for me is that I got some mandatory convalescence! We had originally booked our entire time at St. Vincent. St. Vincent was very convenient and quiet and nice, however I was doing well and I could tell my hubby really wanted a change of scenery and at post op day 8 we found a bed and breakfast in one of the coastal cities in LA. We are 4 blocks from the ocean in a quiet subdivision. It's basically a room in house that two retired teachers live in and make some extra money doing it. It was about 15% more than St. Vincent, but they also make us breakfast every morning. It is just heaven. We walk as much as we can, but don't over due it. At post op day 10 (Sat) I over did it by walking almost 1 mile and it took about 12 hours with complete rest and tylenol to recover. I haven't made that mistake again - just nice and easy. I wonder if that is what is making my recovery so enjoyable is that it's almost like a vacation - I'm not back to my "normal" life - no kids to take care of, no job to do (although I have called in to the office a few times just to check in), no housework. It may be prolonging the "honeymoon" phase of recovery, but it's all well worth it. If you come to the House, I highly encourage trying to get an air B&B in a coast community (I'd be happy to recommend this one, but it's on the market and I believe they have an offer on it already). Also, don't bother with renting a car - just use Uber, it has also been wonderful and cheap for everything we need. We went back to the House yesterday to get my stitches out and it was $20 each way via Uber - about 50 min drive each way.
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Dizziness
Well, I am still very dizzy. I don't know really much what else to say about this but that on the bright side it is NOT accompanied by any nausea. Prior to the surgery I'd never had JUST dizziness, only dizzy and nausea together. I think I always figured they went hand in hand. I am very happy to report that I do not feel nausea now ever. And for that I am eternally grateful of - vomiting would be horrible and I feel like I live in fear of something catastrophic happening...and if I vomited, it would somehow cause a fluid leak or rupture or fall or something. So for now, I am happy to just have dizziness. However with that being said, it takes a lot out of you. When I wake up before breakfast, it's the worst. The longer you lay down, the worse it is, and you have to get yourself pumped up to awaken your vestibular system in the morning (at least that's how I look at it). Prior to surgery I have always been a morning person and enjoy waking up, for the most part. Waking up now is not enjoyable and takes some self-coaching. Once I get going, it gets much, much better, but I feel like I walk so gingerly and carefully. It takes a lot more effort and I think it's mostly because I fear falling and cracking my head open (again fearing catastrophe). I walk around the house by myself no problem and into the back yard, but haven't done a trip around the block yet by myself. I have an appt with a vestibular physical therapist scheduled for 6 Jun in NE and expect to work with them for a bit. I am lucky bc I have neighbors and my hubby works at the same place as I do, so I'm not even that worried about driving vs. returning to work - I think returning to work is much more feasible/less of an obstacle than the idea of returning to driving. I think I'd be find to return to work at the 4 week mark, but I don't know that I feel that I'd be driving at the 4 week mark - we'd have to see. In fact, as far as work, if I didn't have small kids at home, i'd probably be back to work after memorial day (as I feel now). However, I am intimidated by all the energy demands of going back to "mom duty" and expect that will take MUCH more effort than just going to work would. I think that is my single scariest thought because needy children don't tend to understand that mom needs to rest :)
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True SSD
Prior to surgery I only had about 30% word recognition on my AN side. It had suddenly disappeared about 18 months prior to diagnosis (originally thought I lost it due to an ear infection that later turned out to be caused by my AN). Post surgery, all the hearing is gone. It's a bit weird and I bet it would be really hard and annoying if you had perfect or at least good hearing and lost it in the tranlab, but I've been adjusting to this for quite sometime. It is still annoying, but I think I'm lucky that I had a head start with compensating. I do feel like it's more of an "other people's problem" thing. Like it's my hubby and kids that probably feel more frustrated having to repeat themselves all the time than me. I feel a bit left out of the loop and miss nuances, and a bit self conscious, like I'm mis-hearing people or talking too loudly. I also feel quite lopsided, with both the hearing gone and the balance nerve, i feel like that commercial from the 80s with the people who need a V8 - like they are all slanted. Also, eating cereal is the worst. It is SO LOUD inside your head when you crunch down. I'm pretty sure I'll never eat cereal again, which will be ok, I have found that I really enjoy poached eggs instead.
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Glad we are in a similar spot in the dizziness. I have done some walks around the block by myself, taking it slow. It will get better!
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Fear of Catastrophe
So here is maybe where the sunshine fades a bit - at least temporarily - I can go to complete terror at the drop of a pin and suddenly I fear that my life will catastrophically dissolve and I will die. For example, tonight we were getting ready to go out to dinner and I felt something dripping down my throat. We called the doctor (again, House lets you call their doc and he gets paged and then will call you back and you trouble shoot from there - please if you are reading this and considering coming to the House, I just cannot say enough good things about the entire support I've gotten - this is the absolutely best place on the planet).
Anyways, back to the drainage. I am terrified. My face is ghost white, I am convinced this is the catastrophe that has been awaiting us, that this is, in fact, the end and I will soon die. Dr talks us through the whole thing, suggests some positions to see if it is cerebral spinal fluid leak...it doesn't appear to be at first glance, probably more likely seasonal allergies. If it were a leak when I put my head over it should run like a faucet. No faucet nose drainage which is a very good sign. Hubby dutifully goes off to pharmacy to get some type of prescription nasal spray that will eliminate any post nasal drip so we can see if the drainage goes away. I will be going back to check in with the fellows tomorrow at the clinic first thing.
While typing this now (1 hr post panic attack) I realize that it probably is all just allergies, not that I am having a CSF leak/will need a lumbar drain/it will become infected/I will die of meningitis/leave my children motherless. That I should be so lucky that this may just allergies. So this is the type of mental trip that makes this experience crushing. I have no idea when this crazy anxiety will end - but it is by far the worst part of the whole ordeal - you just realize how incredibly fragile life is, over and over and over again. And it is humbling and overwhelming. This whole thing takes a big level of mental stamina. By far the fear of complete catastrophe is the worst bi-product of this whole experience (for me). I just don't know if (or when) you ever stop worrying. I am trying to look at this as an opportunity to deepen my relationship with God and a spiritual journey - that seems to help maintain perspective, as much as possible anyways.
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Greece - have you had any luck finding a vestibular therapist in your area? My son had some sensory issues when he was little and we did OT with emphasis on vestibular therapy and it worked wonders for him...I'm planning on doing some when I get back but wondering if there are any options where you live? I'm impressed you are brave enough to venture around without support - I'm too scared to fall! Building up my confidence, though!
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I truly appreciate this detailed update of what you went thru during recovery!!!!! I am having my surgery this Monday... and I'm doing everything in my power to keep the freaking out at bay!!! I don't want my girls to see how crazy nervous I am.. cause I have many thoughts like you!!! And the post op recovery.. my sister is staying with me for atleast a week..(I'm starting to think maybe 2 might be better).....and I told her yesterday, we were at the hospital all day for my pre op testing, and I told her that I was probably going to drive her crazy with every little sniffle or wetness I felt anywhere! lol Glad to see you are doing so well!!! You are an encouragement!!! ;)
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NEBluebells,
I have a pt appointment tomorrow. We have a great PT school at the university where I teach. Let me know if you want me to ask for a rec for where you live. The head of the school is a vestibular specialist and knows a lot of people.
Your post about fear of catastrophe really resonates with me. This has been the hardest part for me. Same thing happened to me with the drainage. Several times. I refuse to let myself sneeze or cough or eat anything that might upset my stomach so I don't vomit. Last week I had terrible chills with a low fever. Spent two days in bed sure something terrible was happening. Doc said a low fever can happen and shouldn't be worried about. It actually still hasn't gone away, but I'm trying not to think about it.
For me the emotional, cognitive side has been the most difficult. Now I'm having some facial weakness, which is better to focus on because it's not life threatening. ::)
We are going to Wisconsin for a long weekend at the Wisconsin dells leaving Friday. Kids deserve it, but I'm kinda freaked out to leave home too.
Thanks for all your thoughts here. It's really helpful to go though this at the same time as someone else.
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I truly appreciate this detailed update of what you went thru during recovery!!!!! I am having my surgery this Monday... and I'm doing everything in my power to keep the freaking out at bay!!! I don't want my girls to see how crazy nervous I am.. cause I have many thoughts like you!!! And the post op recovery.. my sister is staying with me for atleast a week..(I'm starting to think maybe 2 might be better).....and I told her yesterday, we were at the hospital all day for my pre op testing, and I told her that I was probably going to drive her crazy with every little sniffle or wetness I felt anywhere! lol Glad to see you are doing so well!!! You are an encouragement!!! ;)
Innergrace: good luck. Stay positive. It's really hard with the kids. The night before my surgery my boys (5&8) cried a lot. But I think it's ok not to hide all the emotion from them. 2 weeks from your sister, if she can swing it, might b a good idea!
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NEbluebells, thank you so much for detailing your journey. You have a nice talent for writing. I was getting upset and crying every day after my AN surgery. My husband didn't know what to do. I just told him that I needed to have a little cry once a day. That statement was helpful for him and for me.
Regarding vestibular therapy, here is a website to consider. http://vestibular.org/
Hope you enjoy your time at the beach. Take care.