UPDATE:
I saw where someone else did this - they kept the original thread and then updated it. I hope this approach is helpful!
I am now 1 day shy of 14 weeks from my first surgery. My post-op issues have been:
AN side Eye - wouldn't close fully until about 4-6 weeks post-op. Had blurry vision in that eye for 6-8 weeks. Still a little blurry close up, but nothing bothersome. Once my eye could close, my eye (where I produce no tears) could retain a little moisture and I didn't have to wear a "moisture chamber" at night. I stopped wearing the moisture chamber completely by the middle of January (~10 weeks post-op). (You can google moisture chamber and get them on amazon. I strongly recommend along with a bruder mask and eye drops for anyone with dry eye. You don't want that cornea to get scratched.) Now my eye gets a little tired and maybe once a week I will use drops. Still no tears.
Facial Paralysis - I had facial weakness where nothing drooped but when I smiled, when I puckered, it would not be symmetrical and I could not squint, whistle or suck through a straw. All of that slowly got better and now at 14 weeks, the only lingering weakness is my eye on AN side looks like it is wide open whereas on the other side, my eyelid is droopy (as comes with age!). So I guess my eyelid on my AN side will eventually go back to being droopy.
Balance - I never had bad balance issues and could walk alone within days after my surgery. I started doing balancing exercises pretty regularly through December and then stopped because I didn't feel I needed to continue. A couple of weeks ago, I felt a bit more unsteady (almost walking like I had a buzz from drinking) and have incorporated more exercises and more walking.
Nausea - this one I posted about elsewhere and no one I've spoken with has had this symptom post-op. Debilitating nausea through the first week of January. In the end, I went to some counseling because I believe I had PTSD from the second surgery especially. I was weepy and honestly scared of another CSF leak, going back to the hospital, another surgery, etc. I did end up in the hospital in early December with dehydration, nausea and vomiting after flying to Boston and back in two days for my 6 week follow-up (which was actually at 5 weeks). I definitely overdid it. The nausea was like having morning sickness every waking hour for 8-9 weeks. It subsided thank God. I believe the nausea delayed my recovery because I could not do the eye exercises that had been prescribed and I tired quite easily - one time could barely walk around the block (and now I walk 2-5 miles most days). At the end of December I had an MRI to see if anything was causing the nausea. They said no, but I do have a 8mm sac of fluid and a 4mm mass. Both are concerning to me, but not (yet) to the doctors. They will compare it to an MRI in 6 months. He left 2mm of tumor, so not sure why it is now measuring 4mm... And hopefully the fluid will "re-absorb" as they say it often does...
Taste - I have metallic taste with most anything I eat especially in the last several weeks. I actually think I had it before but was masked by the nausea. I don't like coffee very much or fruits - they all taste bitter or spoiled. Salty foods and dark chocolate taste pretty normal.
Incision site - and here is the reminder that our recoveries are not linear. I had a wonderfully healing incision (well, two since there is one on my belly too) and a beautiful incision. Well, earlier this week, I felt a bump on my incision just behind my ear. It got more swollen over the week and red and tender. I went to the ER on Friday, two days ago, and they "think" it is a seroma. (Ultrasound showed a bit of fluid - the "bump" is the about the diameter of my thumbnail.) I am on two antibiotics to treat different types of infections and honestly, 2.5 days into the antibiotics, it has not improved. So we will see and I will update this note at some point with how this goes. The good news is that if this had happened 6 weeks ago, I would have been terrified and anxious but I am at peace with "it will be what it will be" - while still praying it won't require any kind of surgery to fix it.
Headaches - I had the worst one today - piercing at the top AN side of my head. Very painful, wouldn't go away with a tylenol like other headaches but then I took an excedrin and it went away. Otherwise, I don't have many, but I do have a lot of "feelings" - aches, tingling, numbness, etc. - which I guess are the nerves re-generating or whatever the healing is. One time it actually felt like a bolt of electricity went through my head!
This is quite long but I always found it helpful to see what others were dealing with at certain times post-op so I hope this helps someone! I thank God that I am alive and continue to heal.
My surgery experience
I was diagnosed July 13 with a 2.7 cm acoustic neuroma on the right side impacting my facial nerve with serviceable hearing. It was found because I went for an MRI due to the loss of hearing. I turned 51 in June and in good health.
On November 2 I had the tumor surgically removed via retro sigmoid by Dr. Fred Barker and Dr. Brad Welling at MGH in Boston. The first 48 hours of coming off the anesthesia and nausea was horrendous. By Saturday, November 5, I could feel a tiny bit liquid coming out my nose and on Monday when the work week started back we discussed putting in a lumbar drain or surgery. Monday afternoon I had an “add-on” CSF leak repair surgery that took 2 1/2 hours (in addition to the original 8 1/2 hour surgery I had on Wednesday.)
In the first surgery they removed 98% of the tumor and feel that they’ve killed his blood supply although I will of course be on observation overtime. They could not save my hearing. I have pretty good facial muscle movement overall but I have dry eye in that right side of my eye and I have now developed oral thrush that is developed in orally because of the lack of normal functioning of that facial nerve.
I was discharged from MGH on Wednesday (after the second surgery on Monday…) and I’m staying in Boston for two weeks until the sutures are removed. The merry go round of pain pills and anesthesia and nausea and constipation is definitely one I would like to get off. For pain, I am only on Tylenol now and have been for just 48 hours. There’s several weeks of steroids that remain so I know there’s a lot going on in my head… I am starting immediately with vestibular therapy exercises because I have double vision that I did not have before hand
My standing balance is pretty good actually but the vestibular therapy on my eyes is incredibly difficult. I wanted to share my story and I appreciate hearing others. This is beginning of a second chapter of a long haul. I am incredibly fortunate to have a great support system and doctors and most importantly a biopsy confirmation that there’s no question that it was a benign tumor. And to reiterate that size , location all give different symptoms and outcomes. I might have chosen radiation but for the unknown of swelling.
If I had to do it again, I would understand the cycle of the different medicines they’re going to give you and how they will impact your body and advocate for yourself to minimize any side effects that can be minimized. because those we pretty much all experience from the anesthesia and the steroids and the pain meds. I am four days out from that second surgery and I walked up a flight of stairs and I took a shower alone for sure I am taking baby steps with the various therapies. I wish us all the best on these tumors.
