Hi folks,
I know so many people have challenging recoveries so I thought I would post how things are going for me as a way of offering some encouragement to others.
I had a translab on 30 August at UT Southwestern in Dallas with Dr. Brandon Isaacson as my neurotologist and Dr. Sam Barnett as my neurosurgeon and I am doing amazingly well.
First, a little background.
I started having occasional facial numbness and balance issues in 1982. Yes, that
is 30 years ago. I would have episodes of these events and for years was told I just had some weird virus that was affecting my ear. About 10 years ago, I was diagnosed with a chronic form of 'Ramsay Hunt' which is kind of like shingles but affects the head and neck as opposed to the way shingles affects the trunk. Didn't seem to crazy of a diagnoses as I had had chicken pox at age 18 in 1981, just a year before the symptoms started. Fast forward to February of this year when I had one of my episodes and for the first time the area of numbness kept expanding instead of receding over the next few weeks. By the time I went to see a doc in late April, I had virtually no feeling in the entire left side of my head and face. Full function, just no sensation. Saw the doc who sent me to a neurologist who ordered an MRI and discovered the 2.5cm vestibular schwannoma. Unlike most folks, I still had full hearing in my left ear up until the surgery. But I am told my level of facial nerve involvement was much greater than normal so we expected significant facial paralysis at least temporarily after the surgery. Due to the size of the tumor and the fact that it was now pressing on the brain stem, surgery was needed and Translab was really the only option. Like most folks in this situation I think, we hoped for the best outcome but did prepare for the worst and assumed that we would have a lot to deal with afterwards. But I have been incredibly lucky.
After the 24 hours in ICU I was transferred to my room and the physical therapist had me up and walking within an hour or two. Fortunately for me, I had the tumor long enough that the vestibular nerve was pretty much dead already and my body had already learned to compensate for some of the loss. So while I was quite dizzy after the surgery, I did not have the terrible vertigo and spinning feeling that so many others did. I was in the hospital until the 3rd and by the 5th I was able to do laps around the local Mall, not necessarily looking quite normal but getting there over the next few days. I was walking well enough to be back in heels by the 9th. I still do my vestibular exercises several times a day and am walking 4+ miles a day in my neighborhood as my physical therapy. It's not easy and I do have to work on it but I am so much luckier than so many others.
My left eye, which has wept for at least the last 5 years, has not wept once since the surgery.
I have had no CSF leaks and have experienced no facial paralysis to date. Today was my last does of Prednisone so hopefully we have avoided that challenge.
I had lost the sensation of taste on my left side prior to the surgery and that has not returned. I occasionally get a metallic taste on that side of my mouth. If this remains, something I can certainly deal with.
In the last few days I have begun experiencing more pain on the left side of my face and I consider that a good thing. During the time from Feb to May, I had great pain in my face that slowly went away as everything became numb. So I see the pain as a sign that my face may be "waking up" as it seems I am getting sensation back. A few days after returning home from the hospital I was putting on make up and could feel the area below my left eye as I put on eyeliner. I had not had sensation there for months. So while the pain is there, I see it as something very positive. I am still currently taking Neurontin/gabapentin for the facial pain and would be reluctant to discontinue that med right now. My neck is still quite sore but I have been off the muscle relaxants and Tylenol 3 for 6 days. I'm still taking over the counter pain meds right now but do not really need anything stronger.
My biggest challenges are dealing with the hearing loss and the fatigue. I attended two days of a conference this week and definitely over-did. Balance was great the first day but by the second, I was walking more like I did a week ago. I simply was exhausted and it was no one's fault but my own. I'm going to have to accept the fact that I simply need more rest for a while and that no matter what I think, I am not ready to jump back in to a full on normal schedule and will not be ready for that for probably months. I have a part time job and my husband's position requires that I am very involved in our community but I have tremendous support and am lucky enough to be able to take the time I need.
I'm finding the hearing loss more disorienting than I thought, especially in crowds. It seems as if all sound is of an equal volume and I have to work to distinguish one sound from another. I hear my own voice echoing in my head when I speak which I find very disconcerting. And the whooshing sound on the bad side is constant. Started out at a freight train level but now down to about an industrial fan. I don't know if that gets better or not but am really hoping it does. I know any white noise like bathroom ceiling fans or household AC units running seems extremely loud and kind of overshadows other sounds, And...I am a musician. I have played flute for about 35 years and have yet to pick it up since the surgery. I know now that I will probably not have problems with my embouchure as my face seems to be less affected than expected. But I am a little concerned about the sound...if I hear my voice so loudly in my head when I speak, how will it sound when I play? Right now I am still dealing with the sensory overload that can come from just walking around and trying to balance, or being in a crowd of people and trying to distinguish one person's words. So I don't know that I am ready to tackle the sensory overload that may come with attempting to play. Might just be a bridge too far for me right now. I was lucky enough to still have full hearing right up to the surgery--although the docs couldn't figure out how
-so I am just going to be grateful for that and allow myself some time to get used to the hearing loss. I do hope to have a BAHA put in in a few months so fingers crossed for that.
Anyway, I just wanted to take some time to say that for me the surgery went extremely well and recovery to date has been much less difficult than it could have been. Don't get me wrong...it's not easy. But, compared to the stories of others I know I am so very lucky. I have been a klutz who bumped into walls and fell down stairs for many years and am looking forward to getting past all that. I had wonderful surgeons and great care at UT Southwestern and could not recommend them more highly. I hope that others with upcoming surgeries also experience a rapid and relatively side effect free recovery.
Take care,
Meg
