My AN Odyssey - Recovery update

[jphua]

Please refer to this link for my prior posting on my pre-op and surgery journey - http://www.anausa.org/smf/index.php?topic=15862.0

I was discharged 4 days after my surgery.  I was able to walk and go up and down stairs with the help of the railings.   
For that first week after discharge from the hospital, I had insomia due to the steriods, Decadron.  There was not much pain but I did notice that my taste buds are different. It's like I am back to the pregnancy days, some foods smell and taste weird .
I have sudden urge for sour and spicy stuff.  Also, I did have the typical vision issues - with jumping eye and fast moving objects causing a giddy feeling.  Dr. Stefan (Internal Medicine) suggested that I close my eyes in such cases.

Dr Friedman and Dr. Stefan gave the clearance to fly back to San Jose 7 days after my surgery.
 
The 2nd week after surgery, I finished my last dose of steriod Decadraon. A week after the last dose of steriods, excruciating pain (not headache, but incisional pain) started to radiate down my neck from the surgical area.  It was so bad that I had to take Tylenol #3 every 4 hours without fail.  We called and talked to Dr Friedman and he attributed the pain to inflammation of the nerves and he put me on Aleve (and continue on Tylenol as needed).

God help me!  The pain kept me awake at night and I can barely do anything in the day.  So, I came up with a way to have a stretch of sleeping time at night.  I try to sleep late (close to midnight) and have atleast 5-6 hours of continuous sleep before the pain wakes me up to take a dose of medication.  This has been working for the last 3 days.

One thing so far - I have not had any real headaches, I hope it stays that way for good.

[mk]

I also had pain around the incision, radiating to the neck after my retrosigmoid surgery at the end of April. Like you said, not real head ache, just surface pain - it did keep me from sleeping comfortably at night, and on many occasions I had to sleep on the couch, with my head elevated. It was quite bad until 2 months post-surgery. After doing some research on the forum I realized that the pain was probably due to the muscles as well as nerves being cut along the incision area. I used cold packs on the back of my head before going to sleep to relieve the nerve pain, and warm compresses to relieve the muscle pain around the neck during the day. I also used Aleve which took the edge of the pain and something called Tylenol for muscle pain. I invested in a good orthopedic memory foam pillow which I think helped a lot.
The good news is the the pain gets better - the muscles and nerves around the area need a lot of time to heal. Now I am much better, even though the incision area is still sore - but more of an annoyance than real pain. Patience and you will feel better soon.

Marianna

[LisaM]

Don't know if it will help but you could try taking Curcumin which is concentrated tumeric.  It is a natural anti-inflammatory.  I feel it has helped me tremendously.  Keep us posted on your recovery!

[jphua]

I also had pain around the incision, radiating to the neck after my retrosigmoid surgery at the end of April. Like you said, not real head ache, just surface pain - it did keep me from sleeping comfortably at night, and on many occasions I had to sleep on the couch, with my head elevated. It was quite bad until 2 months post-surgery. After doing some research on the forum I realized that the pain was probably due to the muscles as well as nerves being cut along the incision area. I used cold packs on the back of my head before going to sleep to relieve the nerve pain, and warm compresses to relieve the muscle pain around the neck during the day. I also used Aleve which took the edge of the pain and something called Tylenol for muscle pain. I invested in a good orthopedic memory foam pillow which I think helped a lot.
The good news is the the pain gets better - the muscles and nerves around the area need a lot of time to heal. Now I am much better, even though the incision area is still sore - but more of an annoyance than real pain. Patience and you will feel better soon.

Marianna

Marianna,
Thanks for the reply.  I will elevate my head and try the cold and warm compresses. Hopefully that will cut down the use of painkillers. 
Other than the pain, I have issues with jumping eye and giddiness when I turn my head.  Did you have the same problems?  How long did you take to recover and be able to drive again?

[mk]

I had nystagmus after surgery - it was quite bad the first few days while I was still in hospital,  but had pretty much resolved by the time I was discharged. While I was in the hospital the therapist showed me some gaze stability exercises (which I must admit that I didn't do faithfully, but like I said the problem resolved pretty much on its own). I did have some trouble focusing my eyes too, which also had gone away after about a month.
I didn't drive until 6 weeks post-op. It wasn't because of dizziness or balance problems, but because of my sore neck, which didn't allow me to turn and look back when backing up the car, or when wanting to check the blind spot, so I didn't feel safe driving. I suspect you probably have a similar problem since your neck is so painful - give it some time, from what I understand you are not even one month post-op, so there is still lots of healing ahead.

Marianna

[CHD63]

Hi Josephine .....

I, as well, had rather prolonged nystagmus following my first AN surgery (retrosigmoid) in 2008, but very little following my second AN surgery (translab) in May this year.  I also had double vision in 2008 for two to three weeks.  It gradually resolved but it took much longer before I was comfortable reading a book.

There are several good gaze stabilization exercises out there on the Internet, but the one I found the most helpful was to write a large, bold letter ..... like A on a sticky note.  Place the sticky note on a wall at eye level.  Stand back from it 5 to 6 feet.  Hold your gaze on the letter A while you slowly turn your head from side to side for several times, then move your head slowly up and down several times.  Gradually increase the speed that you can move your head without losing hold of your gaze on the letter.

Hope that helps.  Clarice