Pressure - will it go away?

[Zinnia]

I'm six months post-op after a retro AN removal and I'd love some advice. It has been quite a ride and not the greatest so far. Currently, I'm plagued with major headaches and pressure in my head that is pretty constant. If I sneeze or cough it can make my head feel like it's going to explode and is usually followed by an awful headache. The pressure makes it difficult to lower my head or lift things, which is quite challenging with a one year old. Has anyone had this? Did it eventually go away or did something help? I'd love any feedback. I was seeing my neurosurgeon who ruled out hydrocephalus and I'm seeing a neurologist in a few weeks to hopefully find some relief from my headaches.

Thanks in advance for any thoughts or advice. I'd also welcome any advice about dealing with these headaches, too.

Edie

[AnaLu]

Hi : the pressure feeling did continue on my AN ear which was surgically removed 6 years ago - but I no longer notice it . I realize is there when I think about it but at one point I got used to my "new normal" - at one point you become desensitized
about what is going or not going on on that ear.  This process, however, at least in my case,  took a lot more than 6 months ....

[Zinnia]

Thanks so much for your feedback, AnaLu. Do you still experience pain when you sneeze, cough or bend down?

[TexasSprinter]

Edie--sorry to hear about the headaches.  I have had two AN surgeries.  Middle fossa in Dec. 2012 and translab in Dec. 2013.  I am still having headaches from this last surgery.  I didn't notice the headaches until about 1.5 months post-op, then they seemed to get worse and more frequent.  Then they seemed to get better and less frequent, until a few episodes this week.  Yes sneezing and bending down (and riding in car on bumpy streets) seems to cause pressure and make things worse.  My hope is that things will continue to improve.

[Zinnia]

TexasSprinter, thank you for your reply. I am sorry to hear you are in a similar boat. Yes, I also get nervous about speed bumps and any higher impact movement is out these days. I am hoping things improve, as well. I've had a similar experience with the headaches. I was doing okay and had my first debilitating headache at 5 weeks post op. They were occurring a few times a month but recently they've been happening 3-4 times a week. They are pretty excruciating. I'm seeing a neurologist in a few weeks and I'm hoping to get some relief. I'd be happy to report back any advice he might have if you'd find it helpful.

Thanks again for your reply. I hope you improve quickly!

[robertb]

Zonnia: So sorry about your problems. Just so you know your not alone.  I had tremendous disabling head pressure when my tumor was at it's worse (along with the wonky head, etc., etc). Now at about 15 month post translab I still get bad pressure when I lift anything over maybe 10 pounds and if I lift too much I get bad headaches. Needless to say, I try to avoid lifting (I figure it is going to save my back but I don't have a one year old either). I wish I could tell you that it is dissipating with time but so far it hasn't. Best of luck and I hope you can still tote your little one around.  Robertb

[LindaZ]

Edie,
I'm 7 months post-op.  if your getting headaches or swelling take 2 tylenol every 4 hours.  It seems to help the swelling.  Don't wait till it comes on, it takesl longer to get rid of the pain.  I only have pain at night now, so I take 2 before bed.  Hope this helps.
Linda

[Zinnia]

Thanks for your replies, Robert and Linda. So sorry to hear you are also having a rough recovery. I am seeing a headache neurologist who has started me on Topamax, which should hopefully help with the headaches and pressure. It hasn't helped yet but it takes some time. He also prescribed Imitrex for when I have my occasional mind blowing headaches, which are occurring a few times a week. I'm not thrilled with all these drugs but I'll do anything at this point. Here's hoping there is relief in sight. Hoping the same for you, too.

[annec]

Zinnia

I am sorry to hear about your headaches and I hope you will find relief soon. I also experienced headaches and found a way to deal with mine.  I am 7 months post-op (translab 3cm). 

Before surgery I had a headache almost daily and the headaches would be worse with falling barometric pressure.  I also would wake up with a headache almost every day.  Prior to surgery I began sleeping with my head elevated by using a wedge pillow and no longer woke up with a headache. I still had frequent headaches during the day and managed those with Tylenol. I do not have a history of migraines. I do, however, have trouble with my sinuses and use a prescription steroid nasal spray and Singulair daily along with Allegra D 12 Hour as needed.  The worsening headaches and discovery that I could not determine from where sound was coming actually lead to my diagnosis.

After surgery I was instructed to sleep with my head elevated and I continued to do so for a few months.  I would still have frequent headaches that were relieved with Tylenol. After a few months the headaches subsided and I tried to start sleeping with two pillows which would keep my head slightly elevated, but not as much as the wedge pillow. My morning headaches returned as well as the frequent headaches during the day.  I went back to sleeping with the wedge pillow and the headaches have again subsided. Sleeping with a wedge pillow is not as comfortable as sleeping a little more horizontal, but for me it is worth not having frequent headaches! 

I also had severe headaches before surgery if I would lie on my stomach and prop up to read. I attribute that to increased intracranial pressure, although I never inquired about it. I no longer have a problem with that. For a few months after surgery, sneezing or coughing could cause horrible pain. That has since gotten better and even if I forget and try to stifle a sneeze now, I do not have pain (I can see many of you cringing at the thought!).

A wedge pillow may not be a solution for you or you may already sleep with one to no avail, but I thought I would share what works for me

Hoping you find relief soon,

Anne

[TexasSprinter]

Edie--hope things are improving. let us know when you have a chance.

[Mollyo]

Hi, I hope you are feeling better. I am 4weeks post -op retro sigmoid surgery and I also am experiencing awful pressure headaches. Mine are not constant but more like you were saying, when I sneeze or switch position from sitting to standing ect. My head literally feels like it's going to explode! It's awful, like a wave of pressure. I informed my doctor and he said it should subside over the next few months? I was wondering if it is fluid buildup? Have you had any relief from the medication? Best wishes to you!

[seandimom]

Hi Zinnia/Edie and all, so sorry to hear about the headaches and pressure.  I liked a lot of the good advice people gave--prop up pillows, Tylenol before pain gets too bad, etc.  I am about 4 weeks post retro surgery.  Right now my headaches are on the mild side, but my overall feeling of dizziness and yucky feeling are prominent--like just on the edge of being sick/nauseated most of the time.  I try to work through it but you all know how tough that can be.  We're on a journey we did not choose....

[Zinnia]

I am so sorry for the late reply - somehow I didn't flag the post correctly.

Thank you for the kind thoughts. I haven't found relief but I have found answers which is encouraging. I've discovered that the pressure pain I've been experiencing is actually pain from an injured occipital nerve and a scar neuroma. I thought it was pressure because it felt like my head was exploding (pain is such an difficult thing to describe). I haven't found relief yet - the side effects of Topamax were horrible for me and I just weaned myself off of it. I'm taking Maxalt for the intense headaches and OTC meds daily. Things like sneezing, bending over, or too much physical exertion still cause a lot of pain. But I'm waiting to hear from Dr. Ducic in Georgetown who performs surgery on these nerves to give relief. A number of post-AN headache sufferers have gone to Dr. Ducic and found help with their headaches. I am hoping the same for me.

Mollyo - I did have a large fluid buildup around my scar that finally reabsorbed about 5 months post-op (my surgery was last October). Interestingly enough, my headaches worsened severely once the fluid absorbed. I went from having a few explosive headaches a month to 3-4 a week as well as having the daily headache. I think something happened with my scar tissue and the nerve when the fluid absorbed - just my theory at this point. I'm sorry to hear you are experiencing some of these pains, as well. I sincerely hope the pain for you subsides very soon! Best wishes.

Seandimom - best wishes to you as you recover. It is a journey, some good days and some not so good. Wishing you good days ahead.

Anne - thank you for sharing your thoughts and advice. I am sleeping with about four pillows or a sleep on our couch. Sleeping elevated is a must for me. I will check out a wedge pillow, though. Every once in a while I slip down from "Mt. Pillow" and it always creates a horrible headache. A wedge pillow may solve this problem. Thanks so much for your kind advice - I appreciate it.

TexasSprinter - I hope you are doing okay. Are you still experiencing pressure?

Best wishes to everyone on this journey - may you find relief soon.