Author Topic: PSA: 2-3 months post surgery and hair loss  (Read 1829 times)

kgs123

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PSA: 2-3 months post surgery and hair loss
« on: February 19, 2018, 10:57:27 am »
Just wanted to mention it here since it's not very prevalent and has only been mentioned a handful of times in the archives. I had translab in November (one surgery Nov 1 and a follow up for CFL at the end of Nov).

I'm healing well, back to my regular life with the exception of SSD and all of a sudden I start experiencing a LOT of hair falling out in the shower each time during the last couple weeks. I wracked my brain trying to figure out what was going on - my thyroid levels are fine, I switched hair care products in case that was the culprit. Turns out after some research, this is normal 2-3 months after a major surgery due to hair cycles.

I find it noticeable in the shower as well as when my hair is dry, but I didn't see this in the threads recently and it took me by surprise. So new folks, just know this is a possibility post surgery.

Karen

SueLL

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Re: PSA: 2-3 months post surgery and hair loss
« Reply #1 on: February 19, 2018, 07:12:23 pm »
Thank you for the post!  Looks like I will be facing translab in a few months and it seems like people don't post as often as they did when I started this journey a few years ago.  Any detail is helpful to someone!

How long did it take before you left the house?  Went back to work, etc?
Diagnosed with 1.3 x 1.2 x 1.3 mm right side AN – September 2013; Gamma Knife at UPMC July 2014; Retrosigmoid surgery at Tufts Medical Center June 2018 to remove 2.0 x 1.8 mm tumor

kgs123

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Re: PSA: 2-3 months post surgery and hair loss
« Reply #2 on: February 22, 2018, 07:51:33 am »
Best of luck to you, SulLL.  I had a 4 day hospital stay with each of my two surgeries and my timeline stayed 6-8 weeks recovery (even with the additional/surprise second surgery). They operated on Nov 1 and I was back at work on Jan 2.  I'm really glad that I'm in the city where I had the surgery (Durham, NC - Duke Hospital). When I was having mY CSF leak I was able to get to the clinic multiple times during that one crazy week. I leaked from my incision, not from my nose. That was difficult to find information on, too. Not many on this forum appeared to have the same symptoms. You'll learn if you haven't already, that no two stories are alike.

The day my family brought my home from the hospital I was not dizzy in the car at all so we picked up some comfort foods from a restaurant about 20 min away. Each day I walked a bit more. At first it was 2-3 trips to the mailbox on the corner, then it was up the street, then around the block, then around the block multiple times. I still get a bit disoriented on uneven ground - climbing a snowy hill last month with my little one was definitely a wonky feeling, but otherwise I am back to sort of normal - working 2 jobs, carrying my 33 lb 4 year old around. I do also find it difficult to hold conversations in loud places. I was in a bar last night, for example, and it was hard to hear folks across the table. Took a lot of concentrating.

I haven't decided yet if I will try a device. I don't think I want a BAHA. I'm only 44 and I figure there are 40 years of technology coming my way so I don't want something permanent according to today's standards. It's funny. Before my surgery I was chomping at the bit to get a device and now the SSD isn't as bad as I thought it would be. I position myself strategically - at meetings at work or at social venues - so my good ear is closer to the conversations.

Things I found helpful - a wedge pillow to maintain the height post surgery I needed (30-40% incline), shower seat, meals brought to me by friends and community members. People here had suggested night lights. The ones I got were too bright but it's true that the dark is your nemesis - it's very disorienting. I just used my phone's flashlight if I awoke at night. I drove after about 3 weeks. In fact, the day the Dr told me he was booking me an OR for the CSF leak, I had driven myself to the appointment. You just need to be off painkillers and be able to turn your head quickly without dizziness. They will give you head and eye movement practice exercises at the hospital. They are critical to recovery.

Let me know if you have other questions. A couple people on here befriended me before surgery and it was so helpful to be able to text with any questions. One husband/wife even came to visit me at the hospital. I was so grateful!
-Karen

SueLL

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Re: PSA: 2-3 months post surgery and hair loss
« Reply #3 on: February 23, 2018, 06:34:22 pm »
Thank you for giving me some ideas regarding recovery!  I am shooting for surgery in mid-June and hoping to return to work in late August.  Did you need a wig at all to cover the scar? Is your hair loss now enough to warrant one?  I was wondering if I should plan for that before the surgery.  I teach, so I will be in front of people and don't want a scar or bad hair to be a distraction to anyone.

I can understand the issues of SSD.  I lost useful hearing in my AN ear after Gamma Knife and found hearing aids useless.  Luckily my good ear gets me through.  I am careful to sit with my bad ear to a wall when possible or I rotate my head to hear who is talking.  I was at a conference the other day with many people talking loudly at the same time, and it was hard to follow multiple conversations.  After a few years of this, I still get startled when someone talks and I am not sure where they are or when I have misplaced my cell phone and can hear it but not find it.  Still not used to that.  I hear sounds but cannot discern words from my bad side - not sure how bad the adjustment will be when I am totally deaf on that side.

I will definitely follow your progress!  Take care!
Diagnosed with 1.3 x 1.2 x 1.3 mm right side AN – September 2013; Gamma Knife at UPMC July 2014; Retrosigmoid surgery at Tufts Medical Center June 2018 to remove 2.0 x 1.8 mm tumor

kgs123

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Re: PSA: 2-3 months post surgery and hair loss
« Reply #4 on: February 24, 2018, 01:55:14 pm »
Oh, goodness. No wig needed - not after surgery or  now. I have medium length hair and no one would ever be wiser that it was shaved or that it's still growing back in. :)