CSF Leak Repaired

[Johno]

Johno again.
An update from my earlier post (AN Story from Perth Australia).
Well, been back home since last Monday and only feeling well enough to write now. Somewhere my previous burst of energy that seemed to have us firing on all cylinders after my AN removal left me after surgery to fix the CSF leak. Now definitely feel like someone who's had two major operations in three weeks! Tired.
Was readmitted to hospital on the 26th. The ENT surgeon had told me the previous day it would be a simple, low risk four hour operation. His best guess was that a dural defect was causing the leak. The hardest part was going to be finding enough fat on my frame to fill the hole they were going to reopen in my head. With 10 kilograms lost since my initial surgery I was starting to look a little thin.
Once again I had a brief encounter with the surgery team before the general was administered.  I felt less upbeat than prior to the AN removal three weeks prior. I’d been physically and mentally prepared for that surgery but the CSF leak and subsequent return to hospital I was less prepared for.
Before I knew it I was awake again and pretty alert. There was no ICU but my head was back in the same oversized, over tight bandage I’d had two weeks previously. I felt tired and for the next week remained in ward asleep or trying to keep the nausea down and headaches at bay. There was a brief meningitis scare. Yesterday the staples came out which was a milestone because it means that I can start moving back towards getting back on track. The palsy and double vision is still there and will probably be there for a few months while the facial nerve repairs. I have also noticed how my taste buds are affected and that foods and drink I used to love now no longer seem that appealing. Used to drink several cups of coffee a day but now I have the religious one in the morning and have otherwise switched to tea. Swallowing is harder and I tend to wake up feeling parched and like there a cupful of sand in my mouth.  Sleeping 10-12 hours a day rather than the 5 or 6 hours I was getting by on after coming home from the AN removal. Steroids they gave me for brain swelling may have also given us that wired feeling that’s now settled since I stopped taking them two weeks ago. The CSF Leak is gone - thank God.
I’ve come to realize reading some of the posts here that the journey doesn’t end with the tumor removal and that the healing takes a lot longer but does happen, so I’m as optimistic as ever and will always be grateful for being handed this second chance in life.
Thanks to all the words of encouragement from the people on this forum. Its good to know there are people out there who empathize and are going through their own battles, I salute you.

[4cm in Pacific Northwest]

Johno,

What an AN journey you are having there down under…

I think the taste thing is normal. I used to be a major coffee drinker. Here I am at 6 weeks and I can’t stand the stuff anymore- not even tea.

I am curious as to how your CSF leaked. Was it through the incision or the nose?

I had leaks through the nose. I have in past had post nasal drip issues so at first it was hard to decipher if it was the humidity in the shower making my nose run or an actual CSF leak. It was a mild CSF leak …however stopped with laying down. Since home I had the occasional eye dropper size drip come out of my palsy nostril when I yawn. This scares me to death when it happens. Now my eldest child has a mild cold (flu season has started here in the USA) … so I am paranoid of meningitis.


When I have pain or mentally a rough time I close my eyes and pretend I am back in this place down-under…
http://www.heronisland.com/?gclid=CKTEw4L1944CFQSOggod4iVM-A
…Floating in the warm sea looking at the tropical fish.
Australia is a place I would like to go back to one day… however in my post op state -I cannot imagine the plane trip that far and that long again. (California to Oregon post-op was bad enough)

“Rest easy mate.� Stay clear of the vegemite- that high salt is not good for water retention. (I bet they have you on a diuretic too – that stuff killed my taste buds…)

“4�

[satman]

Hey Johno,this is John from Dallas,now the fun stuff starts ,and we will all be here
for you,sounds like you have been to hell and back.
I feel your pain.

[HeadCase2]

Johno,
  I hadn't heard about about your CSF leak setback.  Glad to hear that it has been repaired.  I can't blame you for not being as up for the second surgery- one is quite enough.  I'm sure you where wondering when the surgery side effects would end.
  Keep up the good spirits, soon you'll be up and about.  Taking lots of walks is a good way to get back in the swing of things.  If you have a dog, he will be quite happy.  Just don't push it too much.  With AN recovery you can sometimes overload the system easily, but naps help a lot.   Recovery normally starts slowly and then picks up speed.  Good to hear from you.
Regards,
 Rob

[TP]

Johno, it sounds like what you are going thru very similar to what I went thru. It stinks right now but the time passes quickly and the healing will happen. I had two CSF leaks and did get menigitis on my second hospital stay. My second CSF repair did the trick. I think I got a head lift in the back of my head as it has been over a year and the skin is till rather tight...but that is ok.

Most important thing is rest and drink plenty of fluids. Don't over do it but when you are ready walking is great, it will help you in the healing process, just make sure someone is walking with you until you are back to "normalcy".

You will have dry mouth for sometime. I chewed a lot of gum and sucked on candy. It seemed sweets tasted good after my surgeries. If you have any issues with your eye lid not closing, I highly recommend an eye weight (simple surgical procedure). I've had mine in over a year now. I got my double vision corrected about two months ago (via surgery) and that was a life saver. They do have prisms that you can place on glasses that will help with your vision until your eye gets better or if you have to have surgery (which unfortunately that was the route I had to take) they will won't to wait at least a year.

God bless you, you are in our prayers!

[Obita]

Hi Johno and welcome back!!

I remember telling my surgeons that I had better not get a CSF leak or they would have to find a fat donor as they took all my spare fat the first time. 

I am glad you are on the mend.  Another week and you should be feeling so much better. 

Good luck - Kathy

[hendi51]

Glad you are doing better Johno. Hope your recovery is fast now.

[Jim Scott]

G'Day, Johno:

CSF leaks are becoming less common with AN surgery but are still a set-back, considering that they follow major surgery.  Fortunately, you seem to be on the mend now and ready to begin your recuperation, even if with a bit less gusto than you had immediately after your initial AN surgery.  Aside from ending your steroid intake, that's likely just an indication of your emotional readjustment to the realization that healing takes time and simply having the AN tumor removed is not necessarily the end of the 'journey'.  How we wish it were! 

Taste issues are not unusual, post-op or, in my case (and others), pre-op.  Due to the AN tumor's nerve involvement I lost much of the ability to taste prior to my surgery - and dropped over 30 (unwanted) pounds due to a sharp decrease in appetite.  Everything tasted like cardboard.  Post-surgery, my appetite returned along with my ability to taste (except for a few tiny spots on my tongue) but, luckily for me, my metabolism re-shifted back to it's original high rate (that had diminished during middle age) and so, I didn't re-gain the lost weight.  I've since put on a few pounds (about 7) but I'm still well within my normal weight range (22.6 BMI) and I certainly hope to remain there. 

I also hope that you'll regain your normal sense of taste, your vision will clear and that the palsy issue will resolve, soon.  You've got enough to deal with. 

I believe we all appreciate your detailed account of your experiences and look forward to reading future messages from you, here.

Jim

[deea]

Hello my friend...Must be nice to not have enough fat.  Not the case with me.  I have lost quite a bit of weight but look larger than I am.  Right after surg. I was so hyper active that I think I developed muscle so did not lose as much weight.The excess skin still takes up a lot of space in my clothes and it's way too soon to think of more surgery.

I am glad to hear that things are going better for you.  Hang in there, we are on this journey togather.

Claudia

[Johno]

Hey "4" I've never been to Heron Island but I couldn’t think of a place more removed from a post-op hospital bed. Reckon I could spend a lot of time just lying on a tropical beach right now.
To elaborate on my CSF leak. It was from the nose (right nostril). The leak was almost a flow at times. I also got leaks from the wound which they patched up before I went in for surgery.
Everyone’s being saying "take it easy", "rest", "you need heaps more time" ect. I'll grant that its foolish to rush back to work so soon after my second surgery but is there a length of time some of the "posties" here have had prior to returning to work? I see 6-10 weeks post AN removal sounds about average but also realize it will depend on the individual.
Incidentally there was a segment on the Australian medical reality TV show here "RPA" which followed a mother of two ftom her initial MRI diagnosis of a 1.5cm AN, after reporting hearing loss, through to her recovery and discharge from hospital weeks later. They showed the entire surgical procedure and looked right into the cavity at the tumor as it got cut away. Everything that was said about the symptomology and pathology of AN was completely accurate and an education for me. Fortunately she retained full facial function and was back to normal in two months. Despite their best efforts the surgeons were unable to preserve her hearing in the right. I don't know if you get RPA on US networks (it’s not on the web to download) but if you get a chance to see episode 6 (season 13) do so, it’s very good

http://channelnine.ninemsn.com.au/section.aspx?sectionid=5285&sectionname=rpa

[nancyann]

Hi Johno:  I went back to work 2 months after the AN surgery..  but I think it really depends on the individual & how well they're doing.  Some went back after 3 or so weeks (that would've been too soon for me), others waited 4-6 months.   Also depends on what kind of work you do - how taxing it is on your body.   For me it was a $$$ issue - wish I could have taken off a bit longer.   Wishing you continued healing,  Nancy

[staypoz]

Hi, Johno.  I had a CSF leak from my ear that had to be repaired and I think that second surgery set my recovery back a little bit.  Listen to your body.  You need to find the balance between pushing yourself too much and stretching yourself appropriately.  You WILL get better, although your recovery might not be as fast as you would like.  Keep helaing!

staypoz