My Post Surgery Story

[BRS89]

I had a retro surgery at 10am on Wednesday, January 23rd. Dr. Thomas Ellis was the surgeon. It was done at Harris Hospital in downtown Fort Worth.
Arrived at 5am for check in and then prepped until 10. Last thing I remember was a nurse telling me to think a happy thought. My mind conjured throwing a football back and forth with my son.
I had a contingent of 30 people in the waiting room. Harris has a big screen that tells status of where each patient is during surgery. My brother said I was first on the screen, and last to come down.
It took 9 hours. The tumor was wrapped around my facial nerve and was touching the brain and brain stem. Dr. Ellis said at one point he stopped to stretch, get a cup of coffee, and sat down and had a eureka moment in how to approach it.
When I woke up in ICU, I had over 60 staples, my entire face was fine, no paralysis at all, 10-15% hearing in my damaged ear, and no CSF.
A flat out miracle for me.
Three fingers on my left hand tingle and will not wake up currently, but hopefully with time we can fix them.
They sent me home 5 days, including surgery, and I putter around the house with a walker for 15 minutes then sleep for 4 hours straight. Very odd for someone used to being active.
I am still very dizzy, is this normal? 1 week out and I think I should be able to walk around better. Maybe not. I have not taste. Drinks taste horrible to me. Water, yech!

My mind seems fuzzy and inarticulate, and that makes me frustrated.Basically, I am an impatient old toot.
The one thing I wished happened that didn't was he had to leave 5% on the facial nerve and, of course fears of that thing growing back will always haunt me. But, I would give this an A on the grade scale, and for those who had setbacks or none at all, and who cheered on a scared stranger, you are Angels walking amongst us here on earth.

Sorry for the poor grammar, I feel like I am typing in a ball full of helium.

[LakeErie]

Congratulations on completing your surgery. You  are still very early in your recovery process. You cannot recover faster than your body permits. Any symptoms you experience are normal - for you.
Time and rest are important. Regular times to rest were imperative for me for months.
I, too, had a subtotal removal of 95 - 97% to preserve facial nerve function. My surgeon told me after the operation he felt there was a good chance I would need further treatment for regrowth of the tumor remnant. After a year, my annual MRI showed stable tumor size, and it looked so good to the surgeon that he scheduled my next MRI for 2 years instead of one. Not all residual tumors regrow, no one can predict when it will regrow if it in fact ever does, and gamma knife will my doctor's treatment of choice when and if it does. Having had brain surgery for a large tumor makes gamma knife, if necessary, for a much smaller tumor not too intimidating.
Good luck

[BRS89]

Just past 2 weeks. I don't sleep anywhere like I did the first week, and had the 6 staples taken out this week as well. The first shower with my head under the shower head wins the award for happiest moment.

Problems:
1) Dr told me to skip the rehab location. Said I would get it done on my own. I am very weeble wobbly still. I walk like someone whose had a little too much to drink. I don't fall but I am unstable. I currently walk 2 hours a day on the treadmill. But I have to hold the handles as I am doing so.
2) No taste buds - This is something I didn't even consider, but it misery. Even water taste like sewer. All foods have a gross non taste. I am so hoping this is short term.
3) three of my fingers I was laying/lying on are not working right. They feel asleep. I obviously have some nerve damage but not sure how to fix this.
4) Had to get a CT scan (I think I want no more radiation please) yesterday because of puffiness and headaches. Dr. thinks a spinal tap is in my future. Can someone tell me what this involves and is it out patient? (Pain is no longer a fear)
5) Where he has to cut my neck (retro) feels like the worst part of the incision. I use ice packs to put my neck on, but does anyone have sage advice?

I am going to work from home starting Monday. Less than 3 weeks from surgery. I will VPN to work and try and see if it works. At least they are supportive that way. I stopped taking Valium and hydrochodone and my brain and articulation came back to normal levels. The more I rest, the worse I feel, so I am trying to avoid being the worst patient ever but feeling like I am moving forward.

[mk]

I think you are doing quite well, considering that you are still only past 2 weeks from surgery.

I did have some similar problems: My taste was totally off too. Especially liquids tasted horrible. Coffee tasted like ash. I had to switch to tea, and I could tolerate only some flavors (I think Chai tea). Water had a strange taste too. Not to mention red wine  .
Fortunately this only lasted for a few weeks. Afterwards everything went back to normal.

I also had trouble with my neck. Obviously in retro they cut a muscle called the "sternocleidomastoid" muscle, which apparently is a large muscle and this can give a lot of problems while healing. In my case it was compounded with an older injury - I eventually had to do physical therapy for quite a few weeks. Ice packs help for the nerve pain on the back of your head, but warm compresses help to soothe the neck area (I use one of these rice-filled bags that can be heated on the microwave). I bought a special anatomic pillow too and I took quite a few pain killers, like Tylenol for body pain. Not fun.

But it does get better, so as you know, patience is your best friend.

Marianna

[LakeErie]

I had numb fingers on my right hand post surgery, and it was from the A-line inserted in my wrist to monitor blood pressure and blood gases during the operation. It gradually improved over a few months. Apparently the insertion of the monitoring catheter can press on a nerve.

[BRS89]

Thank you both for the feedback.

LakeErie: I had an A line in my left wrist as well. They put it in before the surgery and took them 6 pokes to get it in. I remember the young girl doing it, laughing and saying I know it hurts but you won't remember any of this. Actually, that is one of the last sharp memories I have pre-op.

mk - yes, they cut the "sternocleidomastoid" muscle, something to the effect of 6 layers of muscle there. Retro in the hopes of keeping some hearing. I cannot hear someone snapping their finger but if I plug my good ear and someone speaks my name loudly, I can hear it. Maybe this gives me a chance at a hearing aid or stem cell down the road since we didn't cut everything. An ice pack feels so good on my neck, but I am ok. I only take Tylenol now, but still waiting to see if I need a spinal tap for my pressure.

I hope the taste comes back soon. It is the most unprepared for part of this. I have yet to find anything at all that taste good to me. I drink lots of fluids because I am walking but its gross to get it down.

Question: How long usually is it before I walk normally without sort of weaving around? I never feel like I am going to fall, but like I said earlier, I look like a guy who left the bar around 2AM and is trying to find his car. I think the treadmill 2 hours a day is good, but is it enough. I was given no literature on correct exercises.

Why am I not sleeping all the time? I go to bed and get up around 8 hours later and for the past week or so being home, I am not taking naps very much. After my first 2 hour walk I slept for 1 hour in the lounge chair, then I was wide awake again.

This whole experience is such a strange thing to me. It seems it hits everyone different and you can't depend on typical milestones to rely on.

Thank you everyone. 

[mikechinnock]

Welcome BRS89. I think you are doing remarkable for only a few weeks out of surgery.

1) Dr told me to skip the rehab location. Said I would get it done on my own. I am very weeble wobbly still. I walk like someone whose had a little too much to drink. I don't fall but I am unstable. I currently walk 2 hours a day on the treadmill. But I have to hold the handles as I am doing so.

I still wobble when I walk and often feel like I am falling. I am amazed that you walk 2 hours a day. I was in the hospital 30 days for my first two surgeries and I was not pulled out of my bed to walk until the third week. Then I only walked for 15 minutes. You seem to be moving right along.

2) No taste buds - This is something I didn't even consider, but it misery. Even water taste like sewer. All foods have a gross non taste. I am so hoping this is short term.

That few days in the hospital after surgery food tasted 'Pink'. I did not know exactly what to do with the fork, and spoon. This did not go on for more than a week. If all foods have a gross non-taste, that might help a diet, but can't think of any other pluses there. Good luck.

3) three of my fingers I was laying/lying on are not working right. They feel asleep. I obviously have some nerve damage but not sure how to fix this.

My right arm was partially paralyzed and 'Numb' after my second surgery. The surgeon said id was nerve separation after being in the odd position for AN surgery for 20 hours. It took 1-1/2 years before I could straighten my arm and hand. Nerves are very slow growing. Time will tell, but it seems that is all one can do with nerve damage.

4) Had to get a CT scan (I think I want no more radiation please) yesterday because of puffiness and headaches. Dr. thinks a spinal tap is in my future. Can someone tell me what this involves and is it out patient? (Pain is no longer a fear)

The surgeon did a spinal tap in the hospital. He did it right in my room while I sat on the side of the bed. I seem to recall it took maybe 5-10 minutes and do not recall any pain (maybe I was doped up).

5) Where he has to cut my neck (retro) feels like the worst part of the incision. I use ice packs to put my neck on, but does anyone have sage advice?

I do not have any ideas on this. Do the ice packs help ?

You really seem to me to be making remarkable progress. Keep communicating with your surgeon is the best thing that worked for me. I had a lot of trust and confidence in him after 60 hours of surgery. He never steered me wrong.

[RichB57]

Hi BRS89,

Welcome to the forum.  You're experiences are very similar to mine.  I only had problems with taste on one side of my tongue, and that has resolved over time.  I felt what many people call "wonky-headed" for a full month after my surgery.  A friend of mine who works for a large pharmaceutical company said there's a rule of thumb that it takes a full month to recover for each hour you were under general anesthetic.  Not sure how true that is, but it seemed to be months before I got near feeling normal again. Try to be patient. 

One thing that messed me up was having a lumbar disc rupture right about the point where my post-op headaches peaked. It compounded my pain, so I was miserable for 5 months. If your headaches increase, get to a neurologist specializing in headaches or a pain management center quickly.  I waited too long and suffered unnecessarily.  It can take weeks or sometimes months to get appointments with good doctors.  I was able to get appointments in days with doctors that turned out to be not so great.  Now that I'm on a combination of meds, my headaches are relatively under control, although I still have to be careful that I don't strain myself.

The surgeons believe that my vestibular nerve was badly damaged by the tumor prior to my surgery because my balance was still fairly good, even 3 days post-op. Otherwise I should have had a much more pronounced change in balance.  I just tell my coworkers not to think I'm a drunk, just a little wobbly.

Hang in there.  It sounds like you're on track.

[BRS89]

Vestibular is bad. I go 2 hours on the treadmill because I am unstable. I have an X on the wall that I use to go back and forth and up and down, and it's not showing much success.

I am wondering if I shouldn't have gone to the offered rehab place for 1-3 weeks, but my Dr. didn't think I needed to go. It has been almost 3 weeks now, and perhaps I am expecting too much, but I had little balance issues before surgery and now I am a mess.

My results oriented personality is struggling here with the patience technique. I can handle being tired. I keep thinking I can outwork the situation, and I am not seeing anything in my efforts.

It feels quite silly writing this, as so many of you have post surgery woes much worse than I, but I have no frame of reference and cannot grasp where I should be. I read about a postie on here who walks 8 miles a day or something. Is that is what is required, I will do it, but I was not given a vestibular booklet that says, "do these things" to improve. On an island even with all this data on this forum at my disposal.

[LakeErie]

It's best not to compare your recovery to others. You recover at your own pace. You cannot recover faster then your body lets you. Why two hours on a treadmill so soon? Try short periods of activity followed by some rest. Your brain is retraining itself, which is effort and hard work. I walked figure 8 patterns in a hallway for about 15 feet and back. I  started with three repetitions which made me slightly dizzy so I stopped and rested. I did the three repetitions morning, afternoon, and night. Soon I was able to do 5 repetitions, and a few days later 8, and gradually increased the activity, but always rested after. The same approach worked for me when I started walking outdoors. Gradual, and build on easier activity. It is a simple conditioning response that lets your brain adapt to the new requirements placed on it. Your vision and proprioceptors in your feet and legs also have to adapt. Recovery is not a race. Anyone who feels impatient after just weeks from surgery is usually in for a disappointment. Consider the small improvements as victories and let them add up because they will eventually lead to bigger improvements if you let them. Good luck.

[BRS89]

Sage advice, thank you for responding. I have a bad habit of putting the highest possible pressure on myself to achieve a goal. It is definitely a character flaw in this situation.