Excrutiating headache

[LOIS]

I'm 8 and a half months post op with a fair amount of headaches caused mainly by the meningitis complication after the surgery.  Yesterday I went to have a haircut, the second one since the surgery.  I had made the appointment too early and was tired.  I felt like going back home to bed.  Instead we decided to run clear across town to check out a new store that had come into the area.  I was exhausted but we kept walking around.  When we got home I went to bed and ended up sleeping 14 hours straight with a couple of interupptions of waking up with my head hurting and the area behind the ear swollen and tender to the touch.  I still can't touch it and it hurts like hell.  My dr. does his an surgeries on Thursday so when I talked to the nurse today she gave me the first appointmen Friday afternoon as that is when he comes in.  It also feels like some kind of pressure in my head going on.  Has anybody else had this or know what it is?  I still have some percoset here but thats not even helping.  I do remember when I had the meningitis pain pills didn't help, just steroids.  I lwent to sleep again for another 4 or 5 hours to try to get away from the pain.  I've gotten migraines in the past and almost feels like half migraine and half what I had with the meningitis.  This is a  new thing of not even being able to touch that area and it being swollen though.

[Kate B]

Lois,

May I ask who did your surgery and what type of surgery you had?

I am surely not a doctor, but the fact that you are having a worse headache and new swelling 8 months after your surgery sounds unusual.  If they won't give you an appointment tomorrow, can you ask the nurse to have the doctor call you tomorrow?  I think the severity of your symptoms warrant it.

I hope you feel better.
Kate

[EJTampa]

Lois,
 
If it's that bad, you might want to take a trip to the ER.  At least they could get you on something to bring the swelling down, maybe even steroids again if needed.  Like Kate said, you shouldn't be having that much swelling 8 months after surgery.
 
Ernie

[Kate B]

I'm 8 and a half months post op with a fair amount of headaches caused mainly by the meningitis complication after the surgery. ....  This is a  new thing of not even being able to touch that area and it being swollen though.

Lois,

How are you today? 

Dr. Oz reminded me this week  that a person knows if something is not right in his/her body and to persist. Our bodies signal us with pain that things are atypical and it sounds like the swelling and the excruciating headache are just that.   Recently, someone I know had a dental issue and the nurse told this person that she couldn't get her in for a week.  It was severe and she had to call back two times before getting to the doctor who said she should have been there at the onset.  In other words, keep perisiting. 

One thing I  constantly have to remember as a postie is that everything that goes on in my head is not always my AN.

Kate

[LOIS]

Hi Kate and Ernie,

The swelling is down some from yesterday but still tender to touch.  My dr. is Dr. Bartels in Tampa and just so happens he schedules his an surgeries for Thursdays.  You know Ernie, you see him too.  I dont know if he ever told you but Thursday he dedicates to ans.  I thought about the steroids.  I remember with the meningitis it was the steroids that helped, not the pain pills.  I've been pretty much sleeping most of the time, it helps somewhat but the big plus is cant feel the pain when sleeping.  I got up one time today and my ear was hurting.  I put my hand up there and it was wet.  Dr Bartels is always asking if I have any leakage coming out of there and the answer has always been no so I hope this isnt something else.  Seems like its been long enough since the surgery that nothing should be popping up from it.  Kate, I know what you mean, not everything in your head is an related but we tend to think it is.  I really think between irritating the area with the haircut and walking around exhausted might have just been too much with whatever is going on.  The pollen has been bad here, had an asthma attack a couple of days ago which I havent had in almost a year plus I do get migraines so......who knows what is going on.  The dr. did call about 5 today and I'm seeing him at 1 tomorrow. Kate, it was retrosig surgery that I had.  Ernie, I had already thought about a trip to the er.  I knew he would be operating at tgh so if it got worse I was going to go there and when he called at 5 I think that was what he was trying to decide.  He had probably just finished up wiyth his surgery, but I've had so much sleep and it does help I can wait till tomorrow.  I go for the 1 year post-op mri in a couple of months.  I expect it to be fine as he did get the whole tumor out.  Ernie, went to the meeting in Sarasota.  It was a pretty good meeting.  Sorry you couldn't make it.  The next one is suppose to be around October in case you want to go.

Lois

[Kate B]

Lois,

I am glad you posted! I was worried at first when I saw no response since yesterday.

I am glad Dr. Bartels called you today!  Keep us posted tomorrow.

BTW, awhile back you posted about Chicago and always wanting to come to this city.  Are you considering trekking here in August?

Kate

[LOIS]

Kate,

I'm not sure yet.  We are going to try.  I dont know if its feasible financially.  My husband retired when all this came about last year.  With the economy the way it is he didn't want to but felt it was the best thing to do.  Working for the government, they are very inflexible with time off and felt retiring was the lesser of the 2 evils.

I had retired from them the year before.  It took them 1and a half years to adjudicate me but did get interim payments during that time.  Now they say they paid me too much in interim payments and will start taking that back out of my annuity in August.  So the timing is bad.  But I am going to try.

Lois

[EJTampa]

Hi Lois,
 
I really wanted to make the meeting, but our Relay For Life was Saturday noon til Sunday 6 AM this year.  I am a team captain for our office, so I couldn't very well not show up .  I will be sure to make the October one though!
 
I've had calls in to Dr. Bartels office twice.  Both times were after hours, and both times Dr. Danner called me.  I think Dr. Danner is going to make an excellent AN surgeon.  He is very pleasant to talk to.  The way I understand it, Dr. Danner does a lot of the debulking right now, then Dr. Bartels does the work around the nerves.  Either way, it sure turned out good for me.
 
Please let us know what Dr. Bartels has to say about your pain and swelling.
 
Ernie

[yardtick]

Hi Lois,

I too suffer from swelling and pain behind my ear, along with chronic headaches.  This time last year I too had an episode you described with fluid coming out of my ear.  As luck would have it the week before that terrible night I had a MRI and it showed I have fluid in the mastoid cells.  My eustachian tube is block with scar tissue so it does not drain properly, the fluid builds up, than finally there is enough pressure that my ear drum ruptures.  PAIN
I am still very tend to touch in that area and going to the hairdresser is torture.  My head grows extremely fast and thankfully my hairdresser is a very close friend of mine so she is very careful.  I had my hair done an Wednesday and today is Friday, my entire leftside of my head throbs.

Good luck,
Anne Marie

[LOIS]

 I saw Dr. Bartels a little while ago.  He said it was lymphaditis and some name with the scalp that I cant remember.  He felt the hairdresser was a little too rough and then walking around when tired didn't help.  Its actually feeling a lot better today, not quite as tender to touch and the headache is mild.  Of course I've been sleeping more than I've been up but I think that helped a lot.  He kept stressing that when I feel tired to lay down, not go on a shopping spree.  He said getting overtired will cause more problems.  The headache is bearable right now and I can touch that area without screaming so it is clearing up.  Think I'll avoid any more haircuts for awhile though.  Anne, I hope your headache is starting to ease up.  Its such a horrible feeling.  Are you able to sleep?  At least while you are sleeping you dont have to deal with it.  Ernie, I really like Dr. Bartels but after Dr. Danner screwed up by not giving me the script for the steroid course I was in the middle of when leaving the hospital, I really dont care to see him.  I never would have gotten the meningitis if it wasn't for that screw up.  Which from what I understand, the headaches will last longer from that.  I could have gotten in sooner than today if I had seen Dr. Danner but as bad as I felt I only really feel comfortable with Dr. Bartels.

[EJTampa]

Hi Lois,
 
Maybe they've changed the way they do things now.  As far as I know, I didn't get any steroids in the hospital.  I had a prescription for them already at home, but wasn't to start taking them unless I suffered from swelling, which I did.  They actually call in a bunch of prescription stuff way ahead of time now, so you can have the meds waiting for you at home when you get there.  That really helped out a lot.  I didn't have to worry about running to a pharmacy AFTER surgery and hoping they had everything I needed.
 
I am glad that you are getting some relief from the headaches.  I hope that you can someday soon be free from all the complications that were caused by the meningitis.
 
Ernie

[yardtick]

Lois,

Sleep is hit and miss with me and in my dreams I have headaches or facial pain. 

Glad you got some answers and you are feeling better.

Anne Marie