obstructive hydrocephalus

[mk]

I had an MRI yesterday, as requested by the neurosurgeon, who wanted to have it before surgery. The radiologist called my GP office this morning, saying that I am showing signs of obstructive hydrocephalus. The GP called me really worried, saying that this is potentially an emergency.
Obviously I am freaking out. I tried to reach the neurosurgeon's office but his is off this week, and will be back on Monday. Of course I am going to courier the CD right away to him.
But in the meantime I don't know what to do. I don't really have any of the symptoms that are typical of hydrocephalus at this point. So should I wait until Monday and get the neurosurgeon's opinion? Should I go to the ER as the radiologist suggested and be seen by someone who will most probably be totally ignorant of the particular condition?
For those of you who have been diagnozed with hydrocephalus, did you experience severe symptoms? And how soon did you have it treated?

Please help! Any advice/input is appreciated.

Marianna

[MNTim]

Marianna,

My impression is it needs to be addressed immediately.  Can your GP help?  My advice is to use the hospital where you plan to have surgery if it is nearby.  The neurosurgeons office should have someone on call.  The hospital will have someone who knows how to deal with your situation.  They will address the hydrocephulus not the tumor.

Best wishes.
Tim

[MNTim]

Marianna,

This second message is more detailed.  I wanted the first one to be a quick read because I think you need to be treated.  My symptoms were trouble focusing, left leg numbness (infrequently).  Not a lot.  I am told I experienced a miracle, even by the surgeon.  The day I had my MRI and was diagnosed I drove myself to ER and signed myself in.  After I changed to a gown and laid down all of the issues began.  I do not remember anything until I woke up after having a drain placed in my head to relieve the pressure.  For whatever reason I was able to make it to the hospital before my body said "enough".

I felt reasonably well prior that is why I think you should heed the radiologists recommendation.  They will address the hydrocephulus now if it is an issue but I am sure the tumor will be addressed by your neurosurgeon.

You will be in my prayers,
Tim

[Jim Scott]

Marianna ~

Hydrocephalus, as you know, is a serious condition and can lead to brain damage.  However, if you do not have any symptoms, you can probably wait until Monday but you'll have to have the condition addressed very soon.   Just be vigilant of the symptoms that would require a 911 call: headaches, vomiting, nausea, sleepiness.  I would take it easy this weekend and stay near a telephone, just in case.  'Freaking out' is understandable here - but not too helpful. 

After my AN surgery, the neurosurgeon told me that once they opened up my skull, the CSF literally 'gushed' out of the incision and that my brainstem had been severely impacted.  He was quite surprised that I never showed any symptoms of hydrocephalus.  I was just grateful.  I mention this because you could be in the same situation.  Having the condition doesn't necessarily mean it will become an instantaneous problem but I expect your doctor will want it addressed almost immediately.  Please follow his advice.  I wish you the best and trust this will work out O.K. for you.

Jim

[mandy721]

My first thought is to see if you can get in touch with the neurosurgeon or ask your GP to.  Most of the doctor's Ken has seen have provisions for getting in touch for emergencies. 

[ombrerose4]

Marianna,

I would be scared too, but it is in your best interests to take care of this immediately. Hydrocephalus is serious, I don't mean to scare you, I just want you to understand. Please go to the ER and have them get the doctor who is covering your neurosurgeon to come see you. Please let us know what happens, we care!

[opp2]

http://www.nervous-system-diseases.com/obstructive-hydrocephalus.html

Sent you a pm but I thought this was a pretty good link and description of the condition. Thinking of you!

Nikki

[mk]

Thank you all for your responses. Nikki, I bumped into this exact website earlier today when researching the condition. Very informative.

I spoke to my GP and he felt that it is probably OK to wait until Monday to get a hold of the neurosurgeon, unless I have onset of symptoms. See my problem is that my neurosurgeon is a 5 hour flight away, and I am not very confident that the local ER will know what to do. At least if they could get some instructions from him on Monday, that would be great.

In the meantime I have a question about the shunt operation. How long does it take? Is it very uncomfortable? How long is the hospital stay, and what is the recovery like? I am trying to plan ahead, as I need to think about care for the kids etc.

Marianna

[MNTim]

Marianna,

I am glad to hear things have settled down.  If you are referring to a shunt to relieve cranial pressure I can comment on it.

I had the procedure done emergently so I am not sure of the duration but I believe it only took a couple of hours.  While the shunt was in I was kept in ICU and nurses monitored the amount of CSF that I was draining.  They also kept me at a pre-determined angle in bed.  From what I recall each nurse had a different method to measure my angle and monitor the fluid.  I was in ICU for seven days but that included a retrosig procedure to debulk the tumor.  Other than being somewhat immobile because of the shunt being attached to a drain bag it wasn't necessarlily uncomfortable.  I have been fortunate not to experience headaches which the doctors find amazing because of the tumor size and the fact that I had hydrocephulus.

Best wishes,
Tim

[MARAKI]

Marianna I read your messages! If I have understood about the complication you have to undertake a surgery before tumor's removal? I am so sorry about that.
I hope everything will be ok for you!
Maraki

[yardtick]

Marianna,

Wow, what a roller coaster ride for you.  Monday is just one more sleep, hang in there, I know it is easier said than done!  Please keep us informed as to what the next step is.


Anne Marie XO

[mk]

Sorry I didn't update this thread.

After seeing the scans the neurosurgeon scheduled surgery for April 26th. He did say that the AN has grown a bit more, by about 1mm, and the ventricles are a little fuller, but that he is not too concerned about it. Keeping fingers crossed that I will make it until the 26th.

Thank you everyone for your input.
Marianna

[kenneth_k]

I will cross my fingers

[mk]

So this week I visited my GP and got the radiology report. Obviously the radiologist, not knowing that I have already seen a neurosurgeon and I am planning surgery, was recommending that "urgent referral to a neurosurgeon is needed". He actually talked on the phone to the nurse, suggesting that it will be faster to get a referral if I go directly to the ER (otherwise a referral to a neurosurgeon can take a few months). Obviously the nurse panicked and understood the ER part only, which she conveyed to the GP. Thus all this confusion. Well, it did cause me a couple of sleepless nights, but at least I got my date. So I guess everything happens for a reason.

Marianna