Csf leak 3.5yrs post-op

[mbf]

Hi all.
I had my AN surgery 3.5 years ago; this spring I felt fluid collecting in my ear, thought it was a cold, then allergies, after months of trying to treat, went to Mass Eye and Ear and was told I have a csf leak. I know this was possible right after surgery, but as I am 3.5 years post-op, I was taken back.  I was told would need to have mastoid obliteration.  Anyone familiar with this or heard of anyone having this issue so many years later?  It has been a long recovery, still battle headaches and muscle issues, so not looking forward to another procedure. 

Thanks
Mary Beth

[leapyrtwins]

Mary Beth -

I've heard that it was possible to have a CSF leak a long time after surgery, but I had no idea that it was possible 3.5 years post op.  Wow!

I wonder how common this is.  Did your doc give you any idea?

I don't know what a mastoid obliteration is, but wanted to say good luck with the leak.

Please keep us posted.

Wishing you the best,

Jan

[mbf]

Thanks Jan.  Dr said it wasn't uncommon, but I had never and still can't find anything related. She said that a bone must have rubbed to make a cavity opening allowing the fluid in.   For the mastoid obliteration they will take fat and fill the cavity, there by obliterating the hole.  Right now I have decent hearing, with the procedure she said I would lose remaining hearing that I have in that ear. So not very excited. My biggest concern is to make sure I understand the possible post op side effects, she said it is a very easy procedure with minimal side effects, so fingers crossed!

[leapyrtwins]

I have fat in my head already from my AN surgery - retrosigmoid approach aka suboccipital, like you.

Some docs routinely do a fat graft from the abdomen to fill the hole left from the AN; my doc is one of them.  I don't think that in this case it's a mastoid obliteration though, since it doesn't affect the hearing.  My hearing loss is strictly the result of my AN surgery - my AN was wrapped around the hearing nerve, so it was destroyed to remove the entire tumor.

I'm right there with you in hoping it's a simply procedure with minimal side effects.  Good luck!

Jan

[CHD63]

I am not a doctor, but it is my feeling that the potential for a CSF leak is always there any time the skull has been opened.  In the vast majority of cases, it does not occur and if it does, it is usually soon after surgery.

Having had three craniotomies (4 months, three and a half years, and 17 years ago), I am perhaps a little more watchful than most.  There is a moment of uneasiness whenever I have a runny nose from just one nostril or sudden itchiness in an ear ..... otherwise I have successfully put it out of my mind.

I did not have fat grafts during the first two surgeries (both retrosigmoid/suboccipital ..... one on each side), but did during the most recent one (translab).  So far have had no CSF leaks.

Clarice

[JAndrews]

I have never heard of a CSF leak that long after surgery. I would get another opinion

[MNTim]

mbf,

Were they able to collect and test the fluid?  I have experienced two leaks, one from a suture and one from my nose.  I was told that the only way to be 100% sure was to have the fluid tested.  If that is the case you will want to prepare for the surgery and ensure you are working with an experienced team.  Not that you want to have surgery or lose hearing but it is a whole lot easier procedure than the AN surgery.  As I am sure you are aware CSF leaks can have serious consequences so you want some finality. 

I think my surgery took 2 hours and recovery was fairly easy.  As Clarice said it sounds unusual but once an opening in the dura has been created there is the opportunity for a leak.  I am like Clarice in that I am vigilent but must less concerned the farther the leak is behind me.

Best of luck.
Tim 

[mbf]

Thanks for the replies.

  I am trying to learn as much as I can about a csf leak, but admit I don't know much and am finding it difficult to gather info.  The dr I saw last week just looked in my ear, there was no testing. I asked and she said she was confident, she said she would do a ct scan for pre-op, but didn't see a need for a MRI and never mentioned any other testing options. I met with my neurologist today, who I have been with for a couple of years, he has helped me with my headache issue, he was very surprised by the diagnosis, as well as the jump to surgery.  He is going to call to speak with her to get a better understanding, he also ordered a MRI, and in recommending me to another dr for a second opinion.  He was just taken aback as me, which made me feel better and know that I was right to be concerned with her diagnosis.

For testing options I have seen ct scan, MRI, I'm not sure how the testing of the liquid works, but will research that now that you mentioned it. 

Tim, the csf leak repair, was it inpatient or outpatient for you?  She said this would be out patient. 

Thanks for all the info!

Mary Beth

[Cheryl R]

Mary Beth, I would get a 2nd opinion or feel the neurotologist knows more then the previous dr.  was the first one just an ENT?            CSF leaks can happen to people also who have not had AN surgery for several various reasons,not that it is common there either.         I had a leak thru the nose and the lab test for it was called beta transferrin.    The Univ of Iowa sent it somewhere else which is unusual since is a large teaching hospital.      They needed more than just a few drops also.                Maybe the first dr is just guessing CSF since there may not be anything else which would show up as a clear fluid in the ear.         My repair and of others have been a surgery where they opened us up and redid some bone and put fat in again.   Mine was 3 hrs and I was in the hospital 3 days after it.                       I have heard of some other leaks which were a long time out from the AN surgery.     The causes for them may not be the usual reasons that ones who are soon past surgery have them.                 I would get this checked out very carefully if this is what needs to be done in your case.                 My leak was 2 weeks out past surgery and a new type of colloidal implant being tried was not working well and 3 of us had leaks.    They went back to the previous more expensive one they had been using.                Keep is posted how it goes.                                 Cheryl R

[mbf]

Cheryl,
The first dr I saw last week is a surgeon, otology, neurotology and would perform the procedure.   The one i saw yesterday is a neurologist specializing in headaches, not a surgeon, he is the one who said to slow down and gather more information.  Thanks to my research and the responses I have gotten from here I have contacted all the Drs I can think of.  My neurosurgeon just replied to my email and he too wants an MRI.  So 2 of my Drs are on the same page,

[Cheryl R]

Mary Beth,   I see neurologist when reread it the 3rd time.       I still say to get it really checked out as haven't heard of a leak fixed that way since being on here for quite some time.
                                      Cheryl R

[stevecms]

Hi mary beth.i had the same sort of problem but only 18 mths later after an op.Had ear infection for 6 months then they found the csf leak.Had small op to remove ear drum and a blind sac closure where the ear canal is sealed off.Was deaf in that side anyway but so far no more infections.Good luck and keep us posted.

[mbf]

Hi all,

Just wanted to update on my csf leak. I had surgery 3 weeks ago, mastoid obliteration.  It was an easy surgery and quick recovery.  So far no issues.  The surgeon went in behind the ear, and when she opened she saw many leaks at the original surgical site and did a repair and then went and continued with the mastoid obliteration.  I had good hearing prior to this surgery, which has now been severely compromised with this last one. 

My main reason for update is to say that for the 3.5 years I suffered with headaches and muscle pain in my neck and shoulders.  I had been to many drs and tried various meds and alternative treatment options.  I was told it would go away, it was stress related, that it was "in my head".  In my 3 post op MRI's I had questioned and area of the report to several drs and was told each time it was nothing to be concerned about.  We now know that the leak was slowly growing over the past few years.  Prior to the leak repair I asked if my headaches would stop and was told no, that the leak was not the cause of my headaches.  Now 3 weeks post-op, I am so far headache free/pain free and not on any of the meds I was taking prior to surgery.

Obviously I did not present with the typical csf leak symptoms, of the several drs I have seen over the years, not one thought csf leak, until this past September. I share this as others may have a similar issue and this could help as I struggled to find info on csf leaks so many years post op.  I may not post on this site often, but over the years it has been a great resource for me to search and look for resources/information.

To others still trying to find solutions and answers, don't give up!

Mary Beth

[Heresrose]

Wow, what a story! So glad you were finally properly diagnosed and taken care of. Hooray for no more headaches and neck spasms!

Let us know how you continue to do.

Rose

[Jim Scott]

Mary Beth ~

I'm so glad to learn that your recent surgery was successful in stopping CSF leaks and, by association, your headaches.  I trust that your account of this experience will serve as a warning to others that CSF leaks can sometimes be the cause of post-op headaches but doctors don't see this very often and tend to overlook it.  I hope you'll continue to be headache free and able to enjoy life to it's fullest.  You've earned it. 

Jim