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6 months after brain surgery..

Dec 15, 2008 - 33 comments



after brain surgery




brain swelling





Havent felt well lately. i feel waterlogged all the time. My head pains wont go away and I still have issues with confusin, memory and dizzy. - no meds work and I think I need to be trated for the swelling not the headache.I think I need another MRI or CT Scan becaus I know my head is still swollen-MRI showed it was in Sept and Im not due for another until next June. Hopefully I dont have a CSF leak -that wont be fun.

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1286562 tn?1310219847
by lindylu64, Apr 21, 2010
Hi, I can't believe all the others who are going through similar problems that I have. I had surgery for a brain tumor in November 2009, I'm still having these awful headaches & I think my family thinks I am exagerating the headaches, I'm not, & even though I'm so sorry to hear about your pain & your problems I feel that I'm not so alone. It's so frustrating that everyone thinks I ought to be just fine & I'm not. I think sometimes that I'm still in shock from the whole experience. A brain tumor!! I want to feel better & I know that's what we all want. God bless you & thanks for letting me vent.

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by SusanStaggs, Apr 25, 2010
I hear ya....sorry things are not going so well for you.  I am only 1 month post craniotomy for a right temporal lobe tumor and people sure are expecting a whole lot out of me.  I get my own food and drinks, but that and taking a shower sure do take a lot out of me.  You are not alone.  Vent anytime you wish.

God bless!!

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by Suzyq282, Jun 14, 2010
Hi Everyone. I am in shock reading this blog, because I thought I was crazy, I am 2 months after 5 cm meningioma was removed from the left lobe, and I have been going crazy with headaches, and scabs that seem to appear out of nowhere, I just came from an EEG and thank God all is normal but the doctors are not finding the headaches so inportant, the neurosurgeon told me to see the neurologist and visa versa. This stinks because I do not want to take drugs for the rest of my life, can anyone help with the relief of headaches, and share their horror stories. I AM TRULY BLESSED THAT I AM HERE WRITING THIS BLOG, BUT I AM DISSAPOINTED ON THE DOCTORS PASSING THE BUCK ON EACHOTHER, AND TRYING TO FILL US WITH DRUGS......IS THERE ANY OTHER WAY????? PLEASE HELP
God Bless all of you for surviving, may God bless you all.

1286562 tn?1310219847
by lindylu64, Jul 08, 2010
Hi everyone, just a report to say it has now been 7mos. & I'm still having the headaches. There is a constant pain all the time but once in a while it gets so bad it's almost unbearable. I have asked the Drs. how long am I going to be in pain? They all say the same thing, you will hurt for a long time. That doesn't tell you much, but at least I know I'm not crazy anymore & for a while members of my family treated me as if I were brain damaged. Maybe I am & just don't know it. I still get really tired & have to rest. I can't do too much, but I have started going out to eat & shopping for a little bit & that has helped my morale a lot. I like to do those things & for awhile none of that even interested me. I believe there's hope for us but we are all different & our healing will be different too. I am praying that everyone has a full recovery. God Bless All!! Lindylu64

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by RPark, Jul 08, 2010
Like many of you have stated, I am glad I ran across this thread also. I had a blood vessel tumor removed from my skull 2 months ago, recuperated at home for 6 weeks and I returned to work 3 weeks ago full time. I never had headaches as a symptom, I just had a tender spot that was painful to the touch which would last for a while after someone touched my head and there was sharp, debilitating pain shooting to my eye.
I was fortunate to have a good surgeon, however, he failed to tell me what I might go through after surgery. My last visit, I told him that I still get tired easily and my head starts hurting by afternoon. I also find that I am unable to sleep at night, I am not sure if this is related or not. By the time I get home from work, I am EXHAUSTED. I feel like I ran a marathon, my heart even feels like it is throbbing harder. My head hurts where the incision is, as if it wants to crack open. The surgeon informed me that it is part of the healing process and the nerves returning. I get dizzy...I find that I have to sit in my car after doing 15 minutes of simple grocery shopping before getting out.
I try not to complain at work because I don't want people to think I am taking advantage of my situation and there are some points of the day I do feel ok, but the pain is so unpredictable...I can feel fine right now and not even 5 minutes later, I feel like crap. UGH! So I have decided that I may try to attend a brain tumor support group, besides the pain, I did not have a chance to really accept the fact that I went through such a major event.
Keeping you all in prayer (and thanks for listening to me vent),

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by CJAL3102, Mar 15, 2011
Like  all of you i can relate had a crainotomy to remove a tumor (left side) 5 months ago still having headaches but they seem to last  for days and much more extreme.. tired too after a days work went back to work  full time 5 weeks after surg. but still have terrible pain in my knees and feet ? dont understand that either,  my family seems to get mad everytime i have a headach  they figure that part of my life should be over that i should be headach free, i was hoping it would be as well . but hoping in time it will get better but when the headaches become unbearable and i find my self taking more and more meds it does get a little frustration... I dont think any of us were prepared to hear we have a brain tumor let alone under go brain surgery it still seems like a bad dream.. hope you all have a full recovery and get the life back you deserve ( headach free)  A brain tumor support group ?  sounds like a plan for sure..
God Bless...

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by emisere, Jul 13, 2011
I read this after myself having a tumour removed in July 09 this was the most frightening time of my life and i was in a really awful relationship to I am now in recovery and im still finding it really hard to cope with life day to day i don't feel im me any more. I was 25 when i had it removed and never expected it i don't no much about the recovery side of things and cant remember much about it this scares me.Im still in a lot of pain with my head and its hard trying to get others to understand which is making me really depressed i try to stay positive but its hard i often feel confused and forget things. Im glad i blessed to be given a 2nd chance in life but im finding it very hard to move on from it.

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by Jackieo108, Jan 18, 2012
I also had a very large tumor removed in 2011 May it was like a week long dream and I thank God my fiance was there. Apparently, I feel to the ground he brought me to the hospital and they misdiagnosed me with stress.  I fell to the ground again 6 hours later (don't recall any of this) it's what he told me.  They did a cat scan and told him I had a very large tumor on the frontal lobe.  It's been almost 9 months now and it can be so frustrating.  I also am happy to be alive and thank God each day.  I am a  Accountant and Personal Trainer I used to be very sharp, now just trying to get through each day.  I have episodes of being unbalanced, migranes, exhaustion and just a sense of being in a fog at times.  I am awaiting the results of my 2nd MRI now after the surgery.  I do have faith but I do not feel myself at all.  I was told to exercise and I try. Each time I do I have set backs.  My Mom has been in  the hospital 3 times last year and I am trying to be supportive to her as well.  She is my prayer warrior or used to be and Angel.  I find myself being short with her at times, she suffers from severe anxiety and panic.  Recently she has dropped 50lbs and not eating well.  My step-father is at his wits end and again  I am trying to be supportive.  My fiance has been my rock.  Of course God is what gets me through each day and my fiances support.  Just know that each of you are not alone and I wonder sometimes if I am ever going to be able to return as an Accountant.  Probably TMI, however on another subject I am wondering if any of you had blood in your stool?  I get these headaches so bad and blood in my stool was present before.  I have not had any recently thank God but it was quite scary.  While going through all this I had a good day and was cleaning out my closet and dropped a box from  a high shelf so I have a broken right thumb as well. It's healing slowly but it is.  God Bless all of you who are suffering with these post operative symptoms but as I read and this and its hard sometimes to accept we had brain tumors! It still feels like it was a week long bad dream and battling with the supplemental insurance company that claims to be there when  you need them? Well I could write a book on that issue alone. Keep your heads up and have faith. It has to get better. P.S. Yes, I also still have a very tender area on the left side of my head and deep depression there as well.  In the shower I can  see sometimes still parts of the scab washing away strange to me after 9 months.  Lastly, knowing what I want to say but cant seem to say the right thing or find the right words is real frustrating.  Makes a person feel stupid and I used to be a straight A student. My best advice cherish everyday.  God Bless all of you

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by momoftwo1996, Feb 11, 2013
my now 19 year old son had a brain tumor removed with 2 surgeries, 1 lasting over 14 hours on 7/21/11).  It was a pilocytic astrocytoma and full removal of the tumor was successful.  The problem he has now is that (Per his latest MRI of 2/5/13) "There is stable prominence of the lateral and third ventricles consistent with mild hydrocephalus. Configuration of the surgical cavity appears stable. Surrounding T2 signal abnormality also does not appear significantly changed. No new areas of signal abnormality are noted. There is a stable nodular focus involving the wall of the surgical cavity on the right, image 11, which demonstrates slight intrinsic T1 shortening with no enhancement. However, there is a new tiny nodule of enhancement involving the posterior margin, image 12. This is only seen on the axial post gadolinium sequences. This cannot be confirmed on the coronal or sagittal images. No additional areas of abnormal enhancement are identified."
What concerns me is that he has had a dramatic change in behavior recently and from everything I read about hydrocephalus, this is one of the signs.  He does not, however, have frequent headaches or vomiting or really any of the other symptoms.  What I am trying to figure out is if his change in behavior is because he is 19 or if it could be because of his condition?  Any suggestions and/or stories shared are greatly appreciated!

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by lindasong10, Oct 21, 2013
My brother had brain surgery. He had a pilocytic astrocystoma in the middle of the two love in the center. They did the frist surgery to remove the tumor and the next day he started building fluid in the head they had to take him back to surgery to remove the right side of the skull them they had to put two tubes to drain the fluid out that's when we were told he wasn't going to make it. But hours later he started to follow commands, but was bedridden for over a month. He had to get a peg tube, two shunts place in the brain ( but was two different surgeries for the shunt) and last will need to put the skull back. Now, he understand everything you say to him but doesn't talk much, still very weak but is able to walk with assistant and a walker. Do you know if we still have faith as to him rocovering not 100% but a least 90 % and how long will it take???

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by Luckymeme, Mar 18, 2015
I have had brain surgery 6 months ago. I have no headaches, no treatment  leaving hospital. Just an MRI for next  5 years. Benign Meningeoma 2.5 cms. Slight swelling on the wound site at present no other symptoms. Reading the above I realise how lucky I am.

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by Kittyly7, Mar 24, 2015
Hi all. I found this site as I googled "5 months after brain surgery". I am now 5 months & 1 day after having a very large benign meningioma removed from my frontal lobe. I am now having real bad headaches (as bad as they were prior to diagnosis) and I wasn't sure if this is normal. I was ok for the 2nd to 4th month. Just some occasional swelling which comes & goes. I also have a lot of pressure by my right ear, (the side of incision) and sometimes get "swishy" sounds in my ear.  I also lost my sense of smell mostly because the right nerve came out with the tumor but never regained from the left side of my nose.  I would really love to have people who understand what I'm going thru, to chat with and I guess compare notes of what is normal and what isn't.  Thank you for your time, and hopefully someone can help me understand this better, as the doctors don't want to tell me what I should still expect.
Wishing you all a speedy recovery! :-)

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by Vidhyasrinivasan, Jul 28, 2015
hi all .i too had a olfactory groove meningioma and surgery was done 6 months ago,  I lost smell completely, i too suffers from severe head ache nowadays,I dono why? then I goggled so many website and come to conclusion that ,if nerves is growing in scar tissue may cause headaches. I console my self this is the reason .
speedy recovery to all:)

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by Bruising, Aug 02, 2015
About a month after my brain surgery for a benign meningioma (top back of my head), I got a medium sized area of bruise/busted blood vessel on my cheek. It doesn't hurt but it has been over a year and not gone away. Has anyone had anything like that happen?

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by Roger_church, Feb 08, 2016
Grateful for all of the previous posts. I am 10 months from my survey last April. It truly was a most blessed experience, yet today I am full of fear. Immediately following my surgery I had total relief from all the symptoms I had previous to the surgery. I had a 5 year long headache and many bouts with nausea, dizziness, and sleeplessness.

I bought a house 3 months after the surgery and remodeled prior to moving into it. Me and one other person did all of the heavy lifting during the move. I learned a new job when I returned back to work. (I was off 6 weeks after the surgery).

I am a recovering addict and was terrified of the thought of having pain med's after the surgery, but to my amazement...the surgery didn't hurt at all. 3 days after the surgery I was off all pain medicines completely...not even tylenol. The headache was gone and my quality of life was better than it has been for years.

So now I sit in fear. I've had 4 isolated headaches prior to today that only lasted until I woke up the following day. Last night I went to bed with a headache and woke up with it hurting just as bad if not worse than when I went to bed.

I'm praying please let this headache go away. It hurts severely. My whole head is splitting.

Thank you moderator for having this board. I really needed to say this out loud. I haven't told my family about how bad it hurts, I just told them I was sick. I have complained so much over time and do not want to burden or worry them.

What are some methods you have used to ease your headaches?

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by Jflopere, Aug 04, 2016
I'm six months into a recovery from a 5cm meningioma in frontal/parietal lobe. My scabs are still there and my head has been hurting a lot lately. Feel pretty dejected about the scabs especially since one seems especially tender and raw. Any ideas on when they go away?

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by Sojac60, Aug 29, 2016
My husband is one month from his craniopharyngioma craniotomy operation and is sleeping almost non-stop. Did any of y'all go through this? If so how long did it last?
He is weaning off the steroids and having a soreness from that. I trying my best to help but don't really know what to expect.
Any insight would be helpful.

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by Rutledte, Oct 11, 2016
I am also 6 months post craniotomy for a benign meningioma tumor on my left frontal/parietal lobe. I have lived with headaches my whole life, so they aren't as bothersome. However, my wound would not close for two months after surgery. After 4 weeks of Bactrim, it finally healed. Now it has opened back up, and after being on Bactrim for two weeks, is still open and oozing.  Has anyone else experienced this.
My back story is that I had acute lymphoblastic leukemia as a child, was treated with chemo and cranial irradiation. I then was re-diagnosed and underwent a bone marrow transplant, for which I was given high dose chemo and full-body irradiation for the week before the transplant. I am now 21 years post-transplant. My neurosurgeon told me that the majority of people who had irradiation of their cranium will have a meningioma 20 years post-irradiation. I am going to have to have an MRI done each year for the rest of my life.
I'm very relieved to find a place where I can share my woes with others who have experienced what I have experienced.

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by Darleenl, Dec 06, 2016
Hello all my name is Darleen
I want to thank you all for your posts as I've been in a fog and quandary about my healing and most friends and family do not understand. I call my handy caps I had a craniotamy in June 2016 due to cancerous tumor on my left back side of head
The doc was honest and nicked my brain stem that connects to spinal cord to get the whole tumor .I went for 3 sessions of 24 rounds of radiation.(I had 3 other small lesions) too.They killed the cancer Yahoo.all symptoms gone was able to walk talk think but slower have had wooziness ever since.I have good days and bad days ,I am on chemo for the other tumors in my body ..and my cancer count keeps going down ,I feel very blessed ,yet I've had headaches return in the past month I still have sharp pains in my upper neck and incision does not seemed to have heal one said how long it takes to heal from this type of surgery .I thought most of my side effects where coming from chemo but found out not so some are coming from the brain because I had a long 6 week span without chemo due to complications with my lung.I found that my wooziness is defiantly head related and my slowness of memory of dead spots the pain in my neck and back of head numbness is all relationship to crainanotomy.

Now on the emotional side of things its hard for others to understand our set backs on many of our days they always say I look great and think I've been healed or don't understand why I feel good one day and not the other ,I even have other cancer friends who don't understand my side effects or my bad they haven't had a craniotamy so I can't blame them for not understanding so it makes Us feel alone at times .so coming from doing so much before as a full time worker and a small business owner doing craft fairs,its a shock to my life to say the least .Am unable to drive also puts a cramp in everything as my husband has to do an awful lot bless him ,

Thanks for listening to my ranting
Bless all of you may things get better for you
Hugs and prayers for all

Avatar universal
by Slcookie, Dec 19, 2016
Thank you everyone for these comments. I'm 6 months post surgery and had an intense headache today. 1st since before tumor removed. All similar symptoms so nice to hear it's all normal x
Does anybody else have the following experience....
Feel like you are someone else, like an actor you just seen on tv? If that makes sense. You visualise you are someone else?

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by Tearkema, Jan 10, 2017
I was reading everybody's respect everyone who went through this surgery it's not easy my wife went through it 7 months ago still having bad headaches complain is swollen on the right side of her face yeah Christmas is on the left side I don't know if it's normal to have swollen on the other side of your face memory loss scary she was an accountant very smart don't know what to do need help she's confused scared I do my best to help her just wanted to know is swelling on the opposite side of your face normal for surgery after 7 month

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by rclee133, Mar 07, 2017
Wow, am I glad I found these posts.  I am post 3 months craniotomy for frontal lob meningioma.  I can't smell or taste and I get frequent but not long lasting 'cluster headaches' which sometime want to knock me to my feet.  Thankfully they don't last long.  My surgical sight is still painful and I can really put any pressure on the right side.  But now I am getting a metallic taste (I think it's metallic, since I can't really taste) in my mouth.  Has anyone experienced this and if so what did you do to get rid of it?

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by Tallulah611, Jun 18, 2017
I read all of these and am thankful I'm not the only one experiencing things like this. I had my surgery 12/30/16, I'm 6 months post op.
I feel very different.
It's like learning life all over again.
I didn't have any known symptoms of my CVM before my surgery. We found the tumor on my left temporal lobe when I lost my hearing suddenly in my left ear. Not related.
Now I sleep a lot, I'm dizzy, Panic attacks, i can't cook safely alone, I have migraines, my scar hurts often and I am dealing with the hearing loss symptoms still. Sensory overload is common. The supermarket is the worst!!
I started physical therapy and occupational therapy a couple months ago. What a savior! I recommend it to every brain surgery survivor. They help me make sense of things and also validate what's happening. I need to find the new me. I believe it takes about a year to notice a balancing of life. But everyone is different. Walking, stay hydrated, eat fiber and vegetables. I was also told to massage body and scar to help break up scar tissue and get blood flow and stress relief.
topical cannabis works wonders.... I don't get high from it, just pain relief. I apply it everywhere that hurts.
I have not found anything that helps the migraines.*I was told ice*. I have not had one to try this remedy. Apply to back of neck, head and pain spot.
I am not able to work yet and I am focusing on healing right now.
I've been told there is no rush. Take the time you need and listen to your body. Brain surgery is a very big deal. We survived!
I'm trying to discover my new path

Avatar universal
by AndrewN1234, Jul 14, 2017
This thread is phenomenal!
I had a craniotomy around 10 months ago and have felt fine, until this week that is.
I have been feeling dizzy, have black spots in my vision (left eye only) and my hearing in my right ear feels funny when I wake in the morning for a short time. My initial symptom was seizures (I had 3 over 18 months) along with excruciating headaches at least once a week, they thought it was down to anxiety (I told them it was not) hence why it took them 18 months to send me for an MRI where obviously my tumour was diagnosed.
I am due an MRI at the end of this month as I am 3 sessions into a 6 session chemo course so am a bit worried something has changed
Has anyone else had this?

Thanks and hope all of us have been through the worst of things!
good luck to all.

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by val113, Sep 17, 2017
I am 8 months post surgery for a Menginoma 4cm. I really prior had no symptoms but as I look back sometimes my fingers would stick or I would have blurred vision. I did not know I had a tumor until one day I had a massive seizure. MRI showed a Large Menginoma on my right frontal lobe pushing on my motor cortex. Surgery was a success! I lived! However I have not been able to get my energy level back. I think I have pushed it because I had to go to work 1 month after surgery due to finances. Now 8 months later I am still tired and now am starting to have headaches more frequently. I am blessed however can't seem to live a fun life anymore. Too tired. I seem to believe also that it is due to being on Keppra 750 mil 2 x a day. I just want my normal life back

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by MimiFine, Sep 27, 2017
I am four months post op for a 7.5 cm meningioma. It was benign. Last month or so I had been feeling much better but starting last night & still today I'm having pain where incisions were made -- it's like it was maybe a month after surgery. My face on side where surgery was is somewhat numb, I believe due to swelling. And even where they cut into my jaw (it was a cranial flap surgery) it is now back to earlier where I can't open my mouth very much. Is this normal? Do I need to be concerned with fluids building up?  

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by Moni70, Nov 05, 2017
I am 3 months post op, 3.5 cm meningioma. I have been having headaches lately but nothing as bad as what I was having before my surgery. My concern is this metallic taste and smell, also I have know sense of smell or taste. My doctor said I had extensive nerve damage and they had to shave part of my nasal bone. Has anyone experienced this and will I get my sense of taste and smell back.

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by Steph55128, Mar 04, 2018
I'm so happy to find this thread. I had a 2 cm Menegioma, removed 9/15/17. I had no prior symptoms. I have M.S., & the tumor was discovered 7 years earlier. This was located on the left side- brainstem..stitches went into my neck- that was extremely uncomfortable- & they were in for 3 weeks. I attended several sessions of; physical, occupational, and speech therapy...which were extremely helpful..very tiring- not really- kind of exhausting..just depending on the day. I was discharged after 6 days..& took my initial assessment, 1 week after surgery..I scored 26/30...which, I struggled to accept- bc, even though- I was stark raving crazy from the Decadron, I was well aware that I would have scored higher, prior to the surgery. I was well aware of my deficits...At 3 months out, I could not go a day without a patch for nausea. They did another MRI, to see if maybe there was still fluid on the brain...there was not, but they found another tumor. This tumor is located on Pituitary gland. I go again this month, and they are going to target that area for the MRI.
Yesterday, at almost 6 months, I tried to go workout, the success. I needed a patch, 2 dosesof Zofran, and Compazine. I felt sick till 7: p.m. I think that's all the background long are most of you nauseous after this? I'm so glad to have found this. I am truly fortunate. With the MS, they had a baseline from 2010, cognitive testing- the 4 + hour kind. I just took this again last week. Thankfully, the Dr, said there was no measurable change from them. I'm so grateful..but it was really, really,hard work. With that new tumor, there is absolutely, no way- I will ever do this again. I've told my kids, & others..never again. I think my kids understand for the most part- others, not so much. Many judge, & say it was only 150's not over yet. How long are most people experiencing nausea? Again, I realize how fortunate I am. Good luck to all, on our journey.

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by Hannabell77713, Mar 19, 2018
Hi, I'm 3 months post 2cm meningioma.  I was feeling pretty good suddenly I started feeling some of the same things as I did prior to surgery bad headaches, eye pain, bouts of not just tired but have to lay down immediately tired then I sleep for hours.  I feel very reluctant to tell my Dr. unless it gets worse. I have my eeg scheduled and MRI in 3 months. Has anyone else experienced this and how long before I  feel normal? Any response is appreciated.

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by kathythompson297, May 16, 2018
Oh my gosh. I'm glad I found a place to relate to others and share my story. My name is Kathy, my golfball sized benign meningioma was discovered when I was six months pregnant..may 18, 2017, on my 27th birthday no less:/ lost all vision in my left eye. Tumor was removed September 2017 but vision in left eye did not improve. 8 months post op I'm feeling like the walking "dead". A lot of pain at the surgical site. Most of the excruciating pain occures early morning and after 7pm or so. Feel trapped in my painful face. I do work 6 hrs a day. My amazing, caring husband helps me care for our infant and 2 year old. I know someday hopefully perhaps in a year or two or more, that pain will not be so bad. Putting on a straight face mostly for now. "Muscleing" through the day to day grind. I mean whether any of us want to admit it or not we should all either be very incapacitated ( I should be completely blind) or dead. I sometimes think I'll never ever be as bubbly and beautiful as I once was. I'm 27 and I feel like I'm 79. But I hold onto Christ love and to hope that pain will someday cease. Pray for me, and I will pray for you. Grateful to be alive, but acknowledging my trauma as well:( there may be a tunnel we must go through but look up, you see there is a light at the end, we just need to hold on long enough to get there.

Avatar universal
by Jeraldine54, Jun 04, 2018
By jeanniemckillip June 3 2018
I had a benign meningioma tuner removed on Dec 20 2017 I’m a little over 5 months into recovery, and the last two weeks I started getting bad headaches. My tumor was on my orbital area and affected my vision I had vertigo for 3 months before surgery I could hardly walk down the hallway to the bathroom. The day after surgery my vertigo was gone, I was so happy but now I have dizzy spells in bed, and fear the vertigo is coming back. I have lots of nausea after I eat and the headache starts. I also have trouble with my balance. I turned 64 on March this year so not a youngster. I went to eye dr 3 months after surgery because my glasses were awful I could not see through them the eye dr said my prescription had changed drastically and I have a stigma and she said it changed areas. Got my new glasses 3 weeks later and I could not even make out faces they said give them time, 4 weeks go by I went back and had a recheck and they said my vision went back to 2016 prescription, they took my glasses and redid them and I’ve had them a week and now my eyes are blurry again but only the right side that the tumor was on has anyone had this kind of problem? Makes my headache worse than normal and the more pain I’m in the more anger sets in I’m beside myself as I feel angry all the time. I use lavender oil all the time. Don’t know if this is normal or not. I hope this goes away.

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by RDH912, Jun 21, 2018
I am so very thankful to have found this blog. It validated I'm not going crazy. I had a large Meningioma, it took two crainotomies by two different Neurosurgeons to remove it. The first craniotomy the surgeon found a artery in it, he stopped and closed me up. He wanted to use Gamma Knife to remove the rest. I could read the before and after MRI'S, he told me and my husband there was only 30% remaining. As soon as we were out of his office I told my husband he is lieing it doesn't know how to read a MRI. I wanted a 2nd opinion. I had little pain with the first surgery. My 2nd opinion appointment at a different hospital confirmed what I told my husband. This Neurosurgeon said the first one had only gotten 20-30% of the tumor out. He told me whatever I chose to do to not do the radiation for to location. My Meningioma was attached to the Sphenoid Bone on the lower small wings which is by the pituitary gland. 2nd surgery went very well, according to post op MRI there is no evidence of any remaining. Mine had grown around my eye socket, Temporal Bone and pushed my left frontal lobe over to the right. I had normal pain and vision issues after surgery but as the numbness wore off from nerves being severed I started having extreme headaches. It's been almost 8 months since complete removal. I have a constant headaches, it just varies in intensity. I've been through nerve blocks but they can't block all of my trigger areas due to amount of steroids it would take. I'm not able to live a normal life. I had to resign from a job I loved, they gave me 7 months of sick leave but no one can estimate when I'll be well. One Neurologist who specializes in headaches told us that for the size of my tumor and due to amount of nerve trauma there is no way to predict how long my recovery will be. He guessed a year but said he's seen it go on for years. I'm paranoid that family and friends think I'm making this up but I have debilitating headaches 4-5 a week. Reading about others who started having headaches later has helped me know that I'm not crazy. My eye sight changes with them. I get very nauseated and can't do anything too exerting. I feel like my scalp is having a Charlie Horse muscle spasm and my skull plates feel like there is pressure on the inside and outside. My memory is terrible, I don't know if it's the meds or the headaches that is causing this. They have me on low dose oxycodone, as well as NSAIDS, they only take the edge off. Ice helps a lot. I also use numbing cream on scary tissue because it burns and itches all the time.

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by Tammy1036, Jul 26, 2018
Benign meningioma surgery in April. Didn't go as planned.  Lost feeling in right side down to leg and drop foot. Was doing great, after 3 weeks was up walking with walker and some on own. Now leg is tight all the time and can't be up on foot more than few minutes or turns red and purple. Did have blood clot but they say it is gone now. Don't know what else to do. Anyone habe this issue

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