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para1

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Nervous about head post of
« on: April 17, 2011, 10:21:14 am »
Hi,

I'm almost 6 weeks out of surgery and I have been getting a little nervous.  Originally, my scalp was numb and I couldn't feel anything.  Now, only part of my scalp is numb.  The rest has feeling and sometimes it's very sore which I just assume is the healing process.  What I get nervous about is that my head seems to be soft where my surgery was and I can push it and I hear a noise.  It feels like swelling.  I'm sure swelling is normal but what I'm not sure about is that I can be up and walking around and my head doesn't hurt and it feels normal and then all of a sudden I have pain and my head feels soft in that spot.  I don't know if this is normal.  I'm not familiar with CSF leaks so I don't know if this could be fluid that I'm feeling in my head.

Any advice would be great!  Thanks!
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Cheryl R

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Re: Nervous about head post of
« Reply #1 on: April 17, 2011, 04:20:46 pm »
CSF leaks do vary.   They can be at the incision site or thru the nose.      Mine was thru the nose and is is a drip when you lean over with the head bent and drips out like a faucet.        Ones nose can run also and it is not a leak.        I did not have a leak at the site and have read of leakage thru the incision.      I would call your surgeon and tell him about yours and see what he thinks.     there should be some others who add to this about their own leak.       This is not a frequent happening but does happen.
       Keep us posted how it goes.               Cheryl R
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Jim Scott

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Re: Nervous about head post of
« Reply #2 on: April 17, 2011, 04:21:38 pm »
Para ~

What you're feeling may be normal but my advice is to call your doctor and explain it.  If you're still worried, request an appointment to have him check out the 'soft spot' you describe.  It could be a problem but you won't know unless a medical professional either can assure you or, better yet, examines the incision site.  Please let us know what happens.  Thanks.

Jim
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4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

jcc1138

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Re: Nervous about head post of
« Reply #3 on: April 17, 2011, 07:13:59 pm »
Dear Para:
I would second the checking with the doctor as well. Better to be safe than sorry.
Jim C
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Soundy

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Re: Nervous about head post of
« Reply #4 on: May 13, 2011, 05:56:00 am »
I agree , you should see a doctor ...

my surgical site was soft and spongy feeling ... and worried me ... the doctor told me with no titanium or bone flap that it would take time to toughen up ...there was just some muscle and skin between my brain and the world ... now it is tough , not fully cover by bone that did callous over and smooth out ...
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para1

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Re: Nervous about head post of
« Reply #5 on: May 13, 2011, 02:50:27 pm »
Hi,

It's been awhile since my last post.  I did call the doctor about the soft spot and had an appointment to see him on a Monday.  Well, the Thursday before, I started leaking at my incision site.  It was pouring out.  I went to see the doctor and he stitched the site and wrapped my head.  He also glued some suspicious looking spots.  The next day I started leaking agan.  I was admitted into the hospital and had a CT scan.  I receieved more stitches and had a spinal drain put in.  I was drained 12cc every two hours.  This made me so sick, with severe headaches and vomiting.  They lowered the drainage to 8 cc every two hours.  I was in the hospital for 6 days and felt awful  the whole time.  Even since I came home last week, my head and neck are killing me.  The doctor said that this is  normal with the  tap and could last awhile.  I feel like I am only able to sit up for a little and then I have to lie down.   I  went back to dr. today.  He said that the incision site looks great and there appears to be no leakage.  He said it  is very unusual that I started leaking 7 weeks post op and that it usually happens earlier on.  He wants me to take valium and motrin for the neck and head pain and continue to rest.  I have to see him again in 2 weeks.

I am so frustrated.  I just want to feel good.  This spinal tap was actually worse than the surgery.  I feel like a  failure to my family. I have missed so many important things for my kids because "mommy doesn't  feel  good".  In fact, my daughter's bday party is tomorrow and the doctor advises against me having one so now my husband is going to  take a group of girls to dinner and the movies and we've cancelled the sleepover.

I want to feel  good again.  I want to enjoy the spring  weather.  I am sick of  feeling  sorry for myself and guilty about everything that everyone else is  doing for me.   Has anyone ever had a spinal drain before and if so, how long  will  I feel like this?


Thanks for listeneing.
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Kaybo

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Re: Nervous about head post of
« Reply #6 on: May 13, 2011, 03:38:39 pm »
Hi Para1-
About the only thing I didn't have was a leak & I didn't have kids when I had my AN surgery BUT unfortunately I've had several surgeries since (most AN related) and often have wound up with major complications. The WORST, by far thing, IMO, is not being there for my family. I will never forget after my T3 & troubles & being hooked up to my IV, & my oldest daughter standing at the end of my bed & saying, "You're not coming to my game AGAIN, Mom?" Absolutely broke my heart...but we survived it. I just came off a month basically in bed & still can't do much but they are ok with it. It bothered me b/c I  thought they are going to always remember me being sick in bed, but my friend pointed out that what they'll remember is a mom who still did a lot - even when I didn't feel like it or should!  I'm sure it's the same with you!

Keep your chin up, but know you definitely have an empathetic ear here!

K  :D
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LisaM

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Re: Nervous about head post of
« Reply #7 on: May 13, 2011, 10:13:12 pm »
Allow yourself to heal.  You deserve that!  You've just had brain surgery.  It's so hard for Moms to take time for themselves.  Doing what it takes to heal is what you need to do for yourself... and your family.  Take it easy.  It's absolutely OK for other people to do things for you!  I send you loving healing vibrations!
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Wait & Watch
1st Symptom Temporary SHL 7/10 AN Diagnosed via MRI 4/14/11
AN Size 4/14/11 = 1.4cm x 1.8cm x 1.7cm
AN size 7/14/11 = Same - Stable, no growth
AN Size 2/01/12 = 1.3cm x 1.3cm x 1.6cm (5mm reduction)
AN Size 11/27/12 = less than a centimeter! (50% reduction! And I can still hear!)

RichB57

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Re: Nervous about head post of
« Reply #8 on: May 15, 2011, 06:49:39 pm »
Thanks for sharing what you're going through.  I'm almost 4 weeks post op and have had some sharp pains at my incision site.  I have titanium mesh over where the hole was made in my skull, so it doesn't feel spongy, but I'm actually glad to know that maybe I should be keeping an eye out for CSF leak.  I thought I was out of the woods already on that issue, but to hear your experience, I guess I should not take anything for granted.

Please take care of yourself.  This is the time to be a little selfish.  My kids are older (youngest is 16) so they seem to understand I'm not whole yet, although they still seem to need to be reminded occasionally.  They can't tell that I'm perpetually in a fog (I believe it's called wonkyhead) since I look normal.  Maybe it's a guy thing, but I know the best thing I can do for my family is get back to normal as soon as I can.
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Diagnosed 12/1/2010, 12.3 mm x 15.2 mm x 15.2 mm, retrosigmoid removal by Drs. Barker & Lee at MGH on April 20, 2011. Lost blood supply to auditory nerve, so SSD. Facial paralysis.

para1

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Re: Nervous about head post of
« Reply #9 on: May 15, 2011, 07:21:16 pm »
I too have titanium mesh but I found out that the reason it felt spongy was because I was building up fluid.  Now that the fluid has drained, I don't feel spongy anymore and it actually feels hard.  The doctor said that your brain normally would absorb the fluid as it always does.  Sometimes after surgery, your brain has trouble absorbing all of the fluid and it pools which is actually what happened to me.  Then it looks for the path of least resistance to escape.  What I was told was that the fluid built up and then forced my internal stitches out through my incision therefore causing a hole and a leak.  At 4 weeks post op though, I was already feeling swollen and spongy and just assumed it was normal.  I'm still wonkeyhead sometimes although now my family finds it amusing when they see a little stumble or crooked walk.  I guess it's better to laugh about it.

Thanks for your post.  I hope you get back to normal real soon.
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