Headache issue

[carebear]

  I'm having even more terrible headaches, dizziness, confusion, swelling & hot pain at the surgery site post-surgery (nearly 6 months post open brain surgery) ~b ut my surgeon's PA does all the follow-up & she doesn't listen to me or even act like she cares.  You can freeze ice with her eyes & heart.   I'd have to fall over convulsing before she would give a slight show of empathy or concern.  I can't handle this pain anymore.  I wish I wouldn't have had surgery & just been able to die.  All my previously kind & attentive doctors are now so proud of themselves that they discard everything I say.  All my doctors are concerned with after surgery is that you survived & are breathing...notch in the belt. 

I started a college class recently to keep myself from dying from boredom, this started to help my emotions to get out of the house & talk to people.  Amazingly, I'm doing good in my classes.  I get supportive services but I feel smarter & more importantly I'm starting to feel like myself again, like the half missing feeling, lost & detached feeling that was taking my joy of who I was inside, that terrible fog is lifted!!!    But I'm still so tired & weak within an hour, I'm ready to take a nap.  I hate to complain but my doctors are not listening and my headaches are getting worse everyday.  The surgeons PA told me to take ibuprofen instead of filling the prescription for the anti-inflammatory steroid my ENT doctor (who assisted with the surgery) gave me at my follow-up.  Ibuprofen for someone with a bleeding ulcer!  Now my tummy is all messed up & I'm still swelling & hot.   

I've been using ice cold wet compresses on my forehead & back (and the right side of my head where tumor was removed) every day since my surgery to keep the swelling & heat down.  The nurses at the hospital post-surgery told me & my family that they had never ever seen a brain surgery patient use ice cold wet washcloth (compresses) to control swelling after brain surgery.  Well then why wasn't my doctor alerted to this?  And why isn't the PA concerned? 

I have to take my headache medicine every 2 to 3 hours instead of 3 to 4 times a day.  I wake up in the middle of the night (even though I take a sleeping pill).  I wake up crying in agony with horrible headaches every single night the last couple months.  I have to take another headache pill, Ibuprofen & Percocet.  It takes about 30 minutes of so before I can calm down & my breathing has been getting difficult, snorting, gasping like before they found the tumor pressing on vital nerves & did immediate surgery.  The only thing that is better is the vertigo, thank God, but the pain, confusion, fatigue & severe headaches are getting worse everyday.

I know my doctors want encourage me to not worry.  I think they are, at the same time, being negligent about my current issues.  I have experienced this cut off sort of care after a global fusion years ago.  Its like once the surgery was done, I was a file to be filed & a body to be shoved out the door, even though that surgery had a major complication where the doctor accidentally put 1 of the 4 screws all the way though my sacral cortex causing severe nerve damage.   It was left displaced for over 8 years.  I finally saw a good doctor willing to admit that the screw was misplaced & was causing my severe pain 24/7 along with incontinence, leg weakness, inability to sit for more then a few minutes without horrible agony in my low back & in my brain.  The pain just throbbed until the pressure in my brain built up so high that all I felt was severe head pressure, head & neck pain, confusion & heard loud static noise like a TV station with no reception.  I had to sit off to the side & lay flat on an ice pack for 8 years.  It caused depression & other neurological symptoms.  I lost a 19 year marriage & even lost my once wonderful fulfilling relationship with my children.  I couldn't go out , have friends, enjoy my life, family & community.  Its happening again!  This attitude of my doctors - they did a great job saving my life since the tumor had been found almost too late & was attaching to my brain stem, affecting my breathing, etc. but I'm still having medical issues, suffering everyday in pain. 

The only way they found the tumor was by doing an MRI instead of a CT, but now that I'm sick again they act like a follow-up CT is gonna show whats wrong.  Hello!!!!   If a CT didn't show my allegedly "slow growing" tumor the last several years in which a few CT's showed nothing was wrong so I suffered everyday from headaches, confusion, vertigo, vomiting & general pain & weakness, with no medical care or medicine at all!!!   They found it with an MRI,.  They are telling me the CT wasn't the right test, so why aren't they willing to do an MRI now?  What should I do?

[neetze1]

Wow!  I'm so sorry you are going through this Carebear.  Even more sorry that I have no way to help you other than to tell you that there is another forum you might be able to get advice from if others can't help you here.  I sometimes go on the facebook page for Acoustic Neuorma patients.  It the Acoustic Neuroma/Vestibular Schwannoma Group.  There are several others there (from all over the world) that have headache issues.  I will be having surgery next week so I have not had the pleasure of experiencing all of the wonderful post-op issues yet!  This group is very supportive and even if they cant help you, they will understand where you are coming from!  Good luck to you!

[BRS89]

I can't give you any advice on what to do, but keep being the squeaky wheel. You really do have to be your own medical advocate, I have learned that, or you will be lost in the shuffle of revolving door patients. Call and call again until you get the results that satisfy you. You might feel like you are being a pest, but again, no one will look out for you the way you will. Keep pushing them.

For what it's worth, I am 6 weeks from retro surgery, and I have had swelling and "heat" coming from the surgical site behind my ear since the surgery. I daily put ice packs on and behind my ear for relief. My doctor had me get a lumbar puncture because the cranial pressure and swelling (or fluid) in my head. I had a high reading during the puncture and they brought it down from a 28 to a 12. My daily headaches did decrease exponentially. I still have the "hot" or "heat" feelings on my surgical site and my neurosurgeon seemed perplexed by that. I had another CT last week to see if there is anymore fluid, and if so, I will have one more lumbar puncture.

So, I can relate to the heat discomfort, I don't know how long your are post-op, but I am hoping mine goes away with time.

If it doesn't, you can be sure I will be on the phone, making someone address all my issues.

[debraclark]

Carebear, just saw your post. I do not come on here all the time, I am mostly on the facebook page group. We are similiar in some respects, I am also 6 months out, still out of work. I came thru the surgery well I had retrosigmoid procedure and have a titanium plate (supposedly that plate alleviates headaches?). Well I do not have prior surgery mishap like you (so sorry) =( I bet that is a big contributor too for your pains? If at all possible I would ask to see another doctor, you do not have to deal with the coldness. If for one minute they had to go thru what we go thru I am sure the tables would be turned. I had facial para in the beginning but it is about a one on the scale now, hardly noticeable except to me. My main problems are headaches neck pain and I loose my voice alot. (Looked at my Operative report the other day and was shocked to see that the AN could cause "Weakness of the Cranial Nerves resulting in Hoarseness") And coughing or sneezing at times can bring on an excruiating headache. I am in therapy now for an atrophied neck muscle from the surgery and they think that is causing most of my pain? I don't think so but gonna try. Have you had an Physical Therapy at all? Maybe your neck muscles are involved too?I too am limited on pain meds, in the beginning the surgeons gave me steriods a couple times and they did help. I had percocet also in the beginning but they frown on prescribing it, which really makes me mad because I only used it when needed. Afternoons are worse for me. Anyway I was told to take the Ibuprophen for inflamation and pain instead in addition to the tylenol. And it did help along with heating pads and wraps that I use. But now I cannot take the Iburpophen because it started causing some major problems. So now I am stuck with tylenol and heat that is it. I plan on speaking to my Primary Doctor this Thursday for some kind of pain relief. My incision does not bother me but the surgery side of my head is still somewhat numb and aches, especially when the weather keeps changing, I get ear aches along with the neck pains and sometimes the screws on the titanium plate get sore. I have also found that when I wear glasses they can eventually cause a headache or wear a barrette in my hair to pull it back can cause headaches too. I also still have dry eye, nose and mouth at times on my surgery side. But it seems like the weather can make it all worse. =(  Over the years I have gotten a renewed faith and use prayer everyday, especially when I am going thru really rough times. I pray things get better for you. Please don't give up I know at time it seems so hopeless. Also here is a link for that facebook group if you have not checked it out, they have been so helpful to me when I felt so alone, and still help me whenever I need to vent. Most of all it gives me the chance to help others also. Take Care     https://www.facebook.com/#!/groups/8190517727/

[Palace]

Many of us are "queens and kings" of the Grunewald around this forum.  Your story goes without saying that getting regular scans/views of your brain, will be necessary in the future.  Make sure with the MRI that the contrast is used.

If you would breakup (not block) your post, more people would probably read and respond from it.  I've written like that when impassioned or in a hurry.

Wecome and we are here for you.



Palace

[Jim Scott]

Carebear ~

I'm sorry to learn of your severe post-op complications.  Unfortunately, surgeons are specialists in surgery but, as you've experienced, are not terribly helpful with post-surgical problems many AN surgery patients endure.  I suggest you try to find a pain management specialist (they are medical doctors) who, obviously, focus on pain issues.  He or she will likely order an MRI to help him/her determine the cause of your headaches.  If he/she doesn't, ask for one.  Be insistent.

Please try to keep us updated on your situation.  Thanks.

Jim

I edited your original post for easier reading.