Thursday, February 3, 2011

Brain Surgery to Remove My Cavernoma

I could have written an entire BLOG devoted to a vascular malformation in my brain called a cavernoma, but instead I'll keep it to one very long post. Warning: You'll need about 15 minutes to read it all. Second Warning: Although I've had great results from surgery, I'm still not a great writer, so bear with me :-)

I briefly described my story a few posts ago, many of you have asked about the symptoms that lead to brain surgery, the brain surgery itself, and my recovery, well here is the place for most of that information. Although this blog is mostly about Niko and family life, I thought it important to share my experience with you, my family and good friends, as it has changed my life. And if this post can help anyone else out there in cyberspace who may be suffering from a similar situation, then it's well worth the effort.

Life Before Brain Surgery
Looking back one year ago I specifically remember thinking about what the year 2010 would bring. In most ways it was an absolute wonderful year. Watching Niko grow has been a true blessing, going to Croatia with the family was the best trip ever, Niko's 1st Birthday was a blast, so many wonderful things happened in 2010, most of these times I shared on this blog. However, there were a few things not so great happening.

I knew for a while something just wasn't right. Although I had millions of reasons to be happy, in reality I was struggling with serious issues. "Issues" that consisted of complete loss of comprehending language, a lack of speech or the ability to come up with words–especially during times of stress, and moments of inability to write, type, or read. At first I blew it all off. I know that many people, especially women, have these types of things occur throughout their lives, but for me these episodes—as I first called them—were becoming a huge problem. I'd been experiencing them for at least 3 years, and had become very good at hiding the problem. I was extremely embarrassed about it. The episodes started small and infrequently. Later they would happen while writing emails at work or even while typing this blog. One day while driving, I looked at a sign for "Tire Barn" I couldn't comprehend what "Tire Barn" meant. The words looked familiar, but still "Tire Barn" had no meaning until at least a minute later, when I realized Oh yeah that's the place you buy tires. Once while listening to the radio and again driving, the DJ spoke about Denzel Washington, the name/word sounded familiar, but I didn't know if it was a person, place or thing. It took at least 5 minutes for me to comprehend that Denzel Washington is a male actor, one of my favorite actors. Now looking back at these episodes happening in the car, I should not have been driving! I learned later I could have reached a point where a red light would appear to me to be green. It makes me sick to think about what could have happened had a ran a red light. Sometimes I couldn't understand numbers or tell time, this happened even a few days before surgery. Marko asked how many seconds were left for Niko's milk to finish warming in the microwave. I was at a loss and couldn't read the number, by the time I could the milk was finished. The more I used my brain, like at work, the more these episodes would happen. At first I blamed the babyhood blond in me, then I blamed stress of trying to conceive, then fertility meds, then pregnancy, and finally the stress of being a new mom. I thought perhaps I was just missing out on a special vitamin or a certain nutrient.

In 2010 these episodes were getting worse and happening 3, 4, sometimes even 5 times per day up to 30 to 60 plus seconds each, and like I said, mostly at work and it was worse during deadlines. A few colleagues noticed and encouraged me to go to the doctor, regretfully, I put it off. However, I knew things had turned awful when I was signing in for an appointment. It was at that moment that I couldn't remember how to spell or say my last name. It was the scariest moment of my life. Unless a person is struggling with Alzheimers, or some other horrible neurology issue, who forgets their own last name? ME. SAULOVIC came to me about a minute later, but still I left the office in tears and called my family physician, Dr. DeSilverster (Dr. D.). I thought for sure I had some bizarre case of early onset Alzheimer disease.

A few days later I met with Dr. D. It was also 2 days before we left for our Croatia trip. I'm not sure if he understood all of my symptoms, as I could hardly talk about the details without loud sobs. It was somewhat of a relief, for the first time I was really getting things out and it felt good to cry. He ordered a brain MRI at North West Radiology.

The MRI was scheduled during our trip to Croatia, so I missed it. During vacation my episodes dropped tremendously, down to maybe 1 every day or two. This made me believe I was just working too hard, too stressed, maybe I needed better vitamins. I thought I could get "well" on my own, so I took a month before rescheduling the MRI. My episodes had settled down during vacation, but upon my return they came back stronger than ever. The day I went and laid down in the big, loud, awkward machine was surreal. I remember thinking, wow, never thought I'd ever have a brain scan.

I waited anxiously for Dr. D. to call and he did the next day. It was an early morning call. I could tell in his voice something wasn't right. I remember his exact words, he started with the positive... Well, you have do a beautiful brain, but something is showing up in the left temporal lobe, looks like it could be a birth mark, but I can't make a diagnosis, I want you to see a Neurosurgeon. He referred me to Neurosurgeon, Dr. Troy Payner. Marko was in the bathroom during the call, when I told him something was in my brain, we both stood there in disbelief.

A few days later, October 4, Marko and I met with Dr. Payner. This may sound surprising, but that day was actually a good day. It was then that I found out that I DID NOT have ALZHEIMERS! Dr. Payner informed us that I had a vascular malformation in my left temporal lobe called a cavernoma, also called a cavernous malformation, or cavernous hemangioma. It was slowly bleeding, growing and pushing on the area of the brain that helps control speech, language comprehension, reading, and writing. It was this cavernoma that was causing these "episodes" that were really seizures. My first worry was Niko, could he get this cavernoma thing? Was it genetic? Dr. Payner answered that because of its appearance and it being a singular cavernoma, that most likely Niko would not get it. You can be sure though, if anything out of the ordinary happens with Niko, I will order him to be scanned!

We were relieved to have a diagnosis. Relieved that it wasn't Alzheimer disease. Relieved that it wasn't cancer. I quickly assumed I'd be given medicine to magically make it disappear, but when Dr. Payner recommend surgery to remove it, both Marko and I were in shock. Brain Surgery?!? Really?!? He believed removing the cavernoma would eliminate the seizures—seizures that he believed would only get worse. He prescribed anti-seizure meds (Keppra) to help control the seizures until the surgery. I didn't announce it on this blog, like I do everything else baby Niko related, but I had to quickly wean Niko in order to safely take this drug. Mothers know how difficult weaning can be, and doing it in one week was hard, sad, definitely not the way I wanted to end our special "bonding" time, but Niko was a trooper and surprisingly did great.

After many discussions with our surgeon & doctor friends and a second opinion by highly recommended neurologist, Dr. Alonso, it was confirmed that brain surgery was the best option. The cavernoma was too large to stay, definitely growing, and would definitely cause bigger problems if not removed. Another confirmation—Keppra helped reduce the amount of seizures, but I continued having short 5 second seizures while on the medicine. My dose was increased, but sadly the seizures continued. We scheduled the surgery with Dr. Payner for Dec 16 at Methodist Hospital. I hurried to get all my art directing work done so I could take off the 6 weeks needed for recovery. At this time I never thought about what would lay ahead.

With any surgery there are risks and with brain surgery those risks are, well, sort of high. (Why didn't I sign-up for that life insurance policy when I had a chance?) Sawing open the skull and messing with the brain doesn't sound that great and although Dr. Payner was extremely optimistic, he still couldn't give me 100% chance things would be perfect. Although very small, there were risks involved, hemorrhaging, swelling, anesthesia problems, communication problems after surgery and even death. It wasn't until a week before the operation when we sat down at the kitchen table with a lawyer to prepare our wills that all of this became a reality. I was going to have brain surgery.

Telling our friends and family (especially the parents) was one of the hardest things we've had to do. I found out that there was no nice or comforting way to tell my mom and dad that I needed brain surgery. Regretfully, I'd never told them about my "episodes" so seizures and brain surgery came to them as a complete shock. I still feel guilty for bringing so much on them at once. •Note to self, keep the parents updated on major health concerns.

Surgery Day, Thursday, December 16, 2010
After a nice Wednesday evening with friends and family, we woke-up very early Thursday morning for our 6am sign-in. Niko was still sleeping. I kissed his forehead, praying this wouldn't be the last time I'd do so. Although I was nervous, I was ready to move forward. My best friend Laura, my parents, my sister and Marko were at the hospital. Saying good-bye before being rolled away was surreal. Emotions were strong. I can't even come up with words to describe that moment. I prayed, we all prayed.

The anesthesiologist rolled me into the OR. We talked about 30 on 30, an ESPN documentary series, and I joked with Dr. Payner how I washed my hair, just for him. I was given a wonderful cocktail and was out.

I didn't ask for this picture to be taken, but here it is...3 hours, 10 staples, some stitches and 3 titanium skull clamps later ...

I woke up in pain. My entire left side was aching, especially the molar, jaw and ear area. But praise the Lord, I was okay! I made it through surgery and could respond to the nurse's silly questions. I spent one night in ICU, which wasn't a great experience, and 2 nights on the neuro floor. Niko's labor/delivery experience at Methodist was wonderful, however, my recovery from brain surgery there wasn't so great. I didn't get much sleep because of the insane woman next door, so I sweetly begged Dr. Payner to release me a day early. He did, but with some rules. For the next 4 weeks, continue Keppra, no driving, no intense exercise (walking only), get lots of sleep, and no picking up anything heavy, including no carrying my baby boy.

Niko and Mama 2 days post surgery in the Neuro Unit
Very bad hair, but so thankful to have hair! :-)

Ohhhh Recovery
Where do I start? First of all, pre-surgery I didn't think much about recovery, I was too busy being a mom and working frantically to get as much done as I could. I knew I needed 6 weeks off, but as for the details of recovery, those never entered my mind, well, not until I spoke with Jon. We met through, Ricky, a mutual friend. Jon is a true inspiration. Almost 8 months ago he also had brain surgery, and coincidentally by Dr. Troy Payner, exactly 6 months prior to my surgery. His operation was to remove a not so great tumor, actually a very serious tumor called a oligodendroneglioma (low grade 2). We prefer to call his tumor "Olibastardoma". A few weeks before surgery I had my first conversation with Jon. He also confirmed that Payner was the best surgeon in his field. Even though I had heard the exact same from others, it was reassuring to hear this from one of Payner's actual patients. During our conversation he told me what I might expect during and after surgery and warned me how difficult recovery might be and how important sleep would become. He gave me much support and even ended our conversation in a prayer for me. That meant a lot to me, especially coming from (at the time) stranger.

I remember telling Marko "Honey, don't be shocked if I start talking out of my head when I wake up, Jon said the pain meds can make a person say very crazy, bizarre things. So don't let my boss in the recovery room, okay?" Might as well make light of the matter. Instead of being too concerned about the surgery, I thought more about what I would say when I woke up! In a way, thinking about my possible verbal outbursts eased my mind from the actual surgery. And just so you know, I didn't say anything crazy when I woke up, but I later found out from my sister that I did ask something bizarre. She said that I asked her to give me the flowers she had brought. I wanted to smell them because I wanted to make sure I had not lost my sense of smell from the surgery. I couldn't smell them and panicked so I asked for something else...she gave me her strawberry lip gloss, that I could smell, I was happy and fell back to sleep. I don't remember any of this.

I was released from Methodist on December 19. Baba and Marko took care of everything. The first few days home were okay, but on Tuesday, December 21, I woke up with severe throbbing in my forehead area. Percocet did nothing for the pain. When recovering from brain surgery, any severe head pain is a cause for major concern. I knew something was wrong. Marko called Dr. Payner and I was sent back to Methodist for a CT scan. This was a horrific experience, I had no idea what to expect. Again, I kissed Niko goodbye really not knowing if it would be our last kiss. The scan showed that I had brain swelling. I was put on steroids for 12 days to reduce the swelling. The meds worked right away and my head pain vanished, and THANK GOD, I was sent back home. Although this drug was given for a purpose, I had horrible side effects from it and the other drugs combined. I endured an urinary tract infection from the catheter (percocet hid the pain of the infection), many bowel issues, severe insomnia, nightmares and crazy feelings of intense anxiety. At one point I was on 6 different medications.

Medicated by drugs and my wonderful family.

Things improved some by Christmas. I was off of percocet, bowels were adjusting and I "tried" to sleep as much as I could. When I did sleep my dreams were crazy, the steroids were really getting to me, after 3 nights of dreaming that my head was a big stone that I had to drag along the floor, I almost believed it. But moving forward, I met two huge milestone after Christmas! It was then that I had the staples removed and went on my first real outing, a visit to Amore Pizza for lunch to celebrate a staple free head.

Feeling very blessed on Christmas morning.

Staple Removal Day! I could have posted an earlier, very graphic pic,
but decided that it would not be appropriate for those of you with sensitive stomachs.

Right before the nurse removed the staples.
She let me take the staples home as a souvenir
and she threw in the needle nose tweezers too!

My first outing at Amore Pizza for lunch to celebrate staple removal.
Great place, but I still prefer Bazbeaux, sorry honey.

As the weeks continued, I'd take a few steps forward and then a step back. I was so excited to reach another milestone of recovery, NO more steroids! Jon had warned me that I'd have withdrawal symptoms, but I was still shocked to see that after 24 hours of being off the meds, my body was itching, I had a major rash, I was sore everywhere and felt like I had been hit by a truck. These symptoms lasted for 5 days, but the positive was that I was tired. Finally, after weeks and weeks I was able to get some real sleep and that pushed recovery forward. If there is one thing I've learned through this experience, sleep is extremely important! After I got some sleep, I started reading, I read a lot! I was surprised how much better I could read, this made me realize just how bad the cavernoma had effected me. Before the surgery I couldn't read a few pages of a novel without having to reread, I just wasn't comprehending. Plus, I wasn't having any seizures or "episodes". I was still on Keppra, but it had been almost 4 weeks since surgery and not one single seizure, plus I was flying through books!

My next milestone happened on January 14, my first post op appointment with the Dr. Payner. He was happy to hear how well I was doing (besides all the nasty steroid stuff). He said I wasn't yet 100% , but I could ease back into "normal" life. I left his office with permission to drive (with an adult passenger at first), permission for light exercise, and permission to "ease" back into my regular routine. He scheduled a brain MRI for February 14 to see how the brain is healing. It was still too early to scan the day I was there. He decided it best to keep me on Keppra for another 3-6 months, giving the brain time to heal. I was hoping to leave there and be able to wean off the drug, but baby steps right?

I also left Dr. Payner's office with this very special picture ...

It's not often that you get to stand next to someone
who had their fingers in your brain. Again, I washed my hair!

I drove home from the appointment with Marko as my Co-Captain and the first thing I did when I got home was this ...

I'll cherish this picture of me holding Niko for the first time in 4 weeks.
Out of all the emotional and physical difficulties through out
recovery not being able to hold my son was, by far, the hardest.

After my 4 week visit, things started going up hill. I was feeling better, still resting, reading, and even celebrated with my first evening out!

With our great friends, Rick and Cathy, at Capri Italian Restaurant!

Sadly all great things come to an end. It's difficult to mention a "great thing" when talking about brain surgery, but Baba's great time here was coming to an end. It was very difficult to see her leave, she was such a huge help and so full of love. I miss her, we all do, especially Niko. But it was that time around week 5, that I needed to get back to some normalcy and that meant caring for Niko on my own through out the day, going back to work, and even doing things like making dinner. My mom came a few days to help me adjust, but there came a time when I asked her not to come. I needed to spend an entire day with no help—on my own with Niko. It was hard, and still is hard. Being a mom is a bigger job than my actual art directing job and although my brain surgery was 7 weeks ago, I'm not quite "there" yet. I'm not 100%. I tire very easily, my energy level isn't where it used to be, the incision area is still a little sore and numb, and at times thinking about all of this makes me extremely emotional. It has taken me over a week of writing here and there to finish this post. But I'm taking baby steps and meeting milestones.

They saw many of my tears, Dr. D. and his nurse, Nancy.
I love the sign that says "Patients Prohibited..."

My life has changed now, my family lives have changed. We don't take anything for granted. We shed more tears together, happy and sad. We appreciate GOD more than ever and appreciate all of the wonderful things he's given us. We pray more. We pray that my MRI scan comes clear on February 15 and pray that once I'm off Keppra that I don't have seizures from scar tissue. But I know God has a plan. After all of this, the brain surgery, the ongoing recovery, I may still have seizures. I may have to be on Keppra or some other anti-seizure drug for the rest of my life, but if it means I have life, if it means I have my family, I'm prepared for the worse case scenario. As Matha Washington said "The greatest part of our happiness or misery depends on our dispositions and not on our circumstances."

I'd like to use this blog to post a big THANK YOU to everyone for your love, prayers and support throughout this life changing experience. Geez, this sounds like an awards ceremony, but I'll go with it.... Marko, you are my ROCK, I love you. Thanks for putting up with me and my cavernoma for so long :-), Baba—you are absolutely amazing, my family especially Mom and Dad, Mandy. Those of you—too many to name—who visited me, brought meals, sent gifts, cards and beautiful flowers, they were all so much appreciated. Those of you (Chris, Lori, Ann, Heather) who took me out when I couldn't drive, thanks so much. A big thanks to a fellow Payner patient and new friend, Jon, for all of your ongoing encouragement and firsthand support throughout recovery. Those of you who posted on my facebook page, your words were extremely uplifting, especially during sleepless nights with only my iphone for entertainment. Another big thanks to my doctors, although they don't know about my blog they still deserve a HUGE thanks. Dr. D. (and nurse Nancy) you took me seriously and listened to me cry, something I don't normally do outside the house. I couldn't ask for a better family physician. And Dr. Scott Cline, who spent lots of time with me over the phone discussing cavernomas in general and who referred me to a great neurologist, Dr Alonso. Surgeon, Dr. Troy Payner, the man whose steady hands were in my brain, you will always have a special place in my heart (and brain, of course). And a VERY special thanks to my little man, Niko, the reason this blog exists. One day I hope you read this and know how your pure existence made this experience much easier for mama. Your first steps, your laughs, your dancing, your talking, your kisses, and even your bath time, everything you do has made me think less about a cavernoma, less about brain surgery, less about the struggles endured throughout recovery and more about living a full, happy life with you and Tata.


Heather said...

You tell such a beautiful story of life, love, prayers, and support. Happily ever afters do exist.

Laura & Mike said...

Praise God that everything went well! I know it was a tough road for you guys but I am so thankful that you are better! I'm so lucky to have you as a friend!

Phyllis Harris said...

I finally got time to read this and I am so amazed and thankful! You wrote about your experiences so beautifully, Jen. I am sorry it took me so long to finally read this. Deadlines were a little crazy.

I am so proud of you and your strength and faith and I am blessed to call you friend.

Continued prayers for a 100 percent recovery.

Much love and blessings,

The O'Shaughnessys (and Devlin) said...

My 7 year old daughter is due to have surgery to have a cavernoma removed on Tuesday. I'm grateful to have read your story to get some idea of what lies ahead. Wishing you all the best for the future.

palmtreejen said...

The O'Shaughnessys (and Devlin),

I wish you and your daughter all of the best. Please, please feel free to email me with any questions or if you just need to talk

I'm 3 months out of surgery and doing very well.
I will be praying for your daughter this Tuesday.


JuneJ said...

I don't even know you but my friend just had this same surgery yesterday and your story gave me hope. She is the mother of 2 children - 5 and 3. Thank you for writing this story.

Shibu said...

I had a surgery for cavernoma one month back... I went through your blog before my surgery. It was very informative and helped me a lot to be mentally prepared... Thank you for sharing this. I have my follow up doctors appointment next week and hope everything goes fine... :)


Özgür ince said...

First of all i'm happy to hear that all went well about your surgery. And thanks for sharing your experience details. When I am reading it, i lived all over again.

I am 29 year old an i am engineer. In February 2011 i have had a seizure at work. I woke up at hospital and doctors diagnosed me cavernoma.
Its about 25x22x25 mm left side of my brain near the speech center.
And ıt was groving and hemoraging.
Surgery was inevitable. It was an horrible experince. Now 2 weeks from the surgery i am recovering very fast.
By the time i'm recovering i came into your blog and read about your experience. It was very vivid :)

Forgive my bad Engilish.
Take care yourself and Nico which is very cute.

Anonymous said...

Your experiences are really like a heads up for people who will have to go through this and also gives a confidence in life that everything will again come back to normalcy.
I am a mother of a 4 year old, who has been diagnoised with a Cavernoma in her left parietal lobe. We are still in the process of deciding which doctor to go for the surgery. The doctors are confident that it is safe enough to remove it but i am really worried.
Just hoping that everything goes well.
Take care

Lin McGarvie said...

having just been diagnosed with a cavernoma but awaiting my first consultation, can I just say what an amazing and inspiring story...

Yes, I am scared about the unknown...but thanks to you and your story? so much less so..

Thank you, and all the best for your continued recovery and the future with your lovely family

Lin xx

Anonymous said...

I just had a cavernoma removed last week, and though I still haven't had my first follow-up, I would love to answer any questions you might have about preparing for surgery and what you might expect as far as recovery. Best of luck!

Anonymous said...

I never heard of cavernoma until the ER doctor told me after the CT scan. (Luckily my husband and son were with me when I collapsed from vertigo and vomiting and called 911.). It was a whirlwind from ICU to surgery to going home. I didnt get a chance to think about what was happening. Thank you so much for writing about it. It gives me an opportunity to reflect and try to make some sense of it all.

Christina said...

Thank you for relating your story! My husband and I have spent the last 5 weeks, thinking increasing doses of Keppra would handle his seizures due to a newly diagnosed L temporal lobe cavernoma. It has not, unfortunately :( He is now on 1500BID and they had to add Dilantin to the mix due to 2 seizures within a 5hrs period this past Sunday. He is due for brain surgery next week and we are hoping for the best as far as recovery and eventual life without anticonvulsants. We are also hopeful he will be able to hold and express his love for our first child, a little girl, who is due September 10th, less than 5 weeks away! Thank you for the inspiration and real life experiences you shared. It gives me peace of mind and a lil less worry - which when your 35 weeks pregnant always helps! :) Best of luck to you and your beautiful family in the future!

Anonymous said...

I feel like this could have been my post. Thanks for taking the time to write it. I sent it to my family who weren't able to come out here to visit. I had my surgery for my cavernoma about 8 days ago. We found mine when I had an actual seizure while 36 weeks pregnant with my twins. Scared the bejeezuz out of my poor hubby. Fortunately I went on to carry my twins to 38 weeks. My twins are one year now and my other two kids are 5&6. My husband found your blog while sitting by my bedside waiting for me to wake up after surgery. I think it gave him comfort as well to see your story and have it turn out well. It gave him hope. He saved your page for me to read when I woke up. Thanks again for opening up and sharing your story.

Jodi said...

Thanks for sharing your story. My husband just had a cavernoma removed two weeks ago. Glad your recovery went well. He its doing great too.

Anonymous said...

I really appreciate your post. Dr. Payner removed a cavernoma from my wife's 3rd ventricle space a week ago yesterday. The surgery was successful. Staples come out next week... recheck at the beginning of February. She does seem more tired than I anticipated so I am thankful to read about your experience.

I absolutely can't say enough good things about Dr. Payner and his team... we felt like people and not a file folder in a drawer... If I ever require brain surgery for myself, I would want him to be the one to do it.

GOD has definitely showed up for US!!!

Elizabeth, John and Jack said...

I just came accross your blog. It's almost like de ja vu. A new mom with a cavernoma, seizures, surgery. I'm a year into my surgery was complicated by a stroke, but my little boy has provided all the inspiration anyone could need. Those amazing little boys! Thanks for sharing, and congratulations on all you have accomplished!!

Anonymous said...

Wow, I am very glad that I have found your post.
My sister is just left in hospital after they have found out that her cavernoma is bleeding. We knew she had it (around 7 mm long) but there haven`t been any problems till 5 days ago. Now, we have found out that is bleeding and we are waiting for next steps - tomorrow we will know. I was worried about possible surgery but your post and comments under made me a bit calmer.

I can`t stop thinking of her. She planed her wedding in 20 days. This is supposed to be the best time of her life. I hope everything will turn out to be ok at the end.

Also, I am from Croatia - this was the wow reaction to your post!! - so: nadam se da je sve ok danas i pozdrav iz Hrvatske!Ivona

Anonymous said...

Thank you for sharing your experience! I stumbled across your blog while researching Cavernomas. my Mum has just been diagnosed with one after suffering a massive seizure and is facing the possibility of surgery. I feel comforted after reading your blog. I am happy you are fully recovered!

Anonymous said...

Thank you so much for posting this. I collapse on New Year’s eve 2011 so almost a year ago at age 38. Never had any symptoms, well none that I could identify until reading your blog. I guess my symptoms (slurred speech etc..) started in 2009 but I assumed it was due to my approach to work. I work until I can’t anymore and then eat or take a break.

Like I said, I collapsed on New Year’s eve regained consciousness 2 days later and was sent home without a single memory of what happened. The Doctors told my family about a possible tumor and fracture or fractures. It took a week but I finally got some information regarding what happened to me from a receptionist at the Neuro-Sciences clinic of the hospital where I was treated. The information was not correct but at least it was a start. With no information or contact from the specialist I ended up going to the ER to see a doctor. This gentlemen was kind enough to share all the information including test results and a note so that I could take a few weeks of work ( my brain was not working right what so ever). From there I called and called the hospital until the Doctor scheduled a follow up appointment 6 weeks after the date I was admitted. So here I am, unable to walk in a straight line, deaf from the left side and feeling like I was going to tip over every time I tried to look to the sides or if someone tried to hug me.

After the Last appointment I was given a prescription for 300mg of Dilantin daily down from the initial 350mg. I was then told that they needed to do more MRI’s cause the cavernoma has an odd shape and that a follow up meeting would take place in 3 to 6 months. Again I’m sent home with information about a 1cm plus long 0.5 cm wide cut on my brain that was a result of the collapse. Sneezing felt incredibly horrible and we’re talking about January in Canada.
Well now we’re December 2012 and still no news or follow up from the last MRI still no news weather I can drive again or cook ( the doctor said no cooking). No idea if the surgery will be mandatory but at least the healing of the gash from the fall did not induce seizures.

Here I am in cavernoma limbo… Have not had any seizures since the initial collapse. Even gave up on the Dilantin since the side effects outweighed the benefits in my case. I’ve basically been treating myself here in Canada of all of health care.

Thank you so much for this blog, you’ve given me more information than the hospital!

Anonymous said...

Thank you, my dear, for your story. When I "googled cavernoma surgery", your blog was the first thing that popped up. Dear friends of ours have a 15 year old granddaughter who has been diagnosed with a cavernoma and is scheduled for surgery next week. (She actually has 6 cavernomas, but the surgery will be only on one.) This child's father recently severely cut his hand in an electric saw accident. And her grandfather (our dear friend) recently died of a rare neurological disease called progressive supranuclear palsy. Too much for one family to bear! Your story gave me comfort that this kid is going to be OK! Ironically, I escaped brain surgery when I had a terrible accident in Argentina 4 years ago. I fell off a galloping horse ( I was 65 years old at the time!), landed on my head and knocked myself unconscious. I had to be medivacced by air to a hospital 800 miles away where I spent 2 weeks in a hospital. I had 2 major brain bleeds (right frontal and right temporal lobes) and awful headaches, but escaped surgery. My husband told the doctors that "God was not going to take me; he had more work for me to do." I'm fine now, no meds any more! Blessings to you.

Anonymous said...

Thank you. I'm 19 and trying to decide if I want to get the small cavernoma I have in my brain removed or not. I still haven't made my decision but thank you. This entry gave me the honest answers I desperately needed. I hope you are doing well.

Melody Schleicher said...

Your story, together with the many replies, gives a good all-round picture. We are in cavernoma limbo at the moment. My husband has 2 cavernomas. The right parietal lobe one bled into the surrounding tissue and this caused stroke-like symptoms, which is how we discovered the cavernomas in January this year. CT and MRI scans were done and he was sent home on medication (dexamethasone, lanzoprazole and levetiracetam). We are due fo a further MRI scan in June with a consultation early July. In the meantime the dexamethasone (a steriod) supressed his immune system. He has had 2 urinary tract infections plus an abcess on the colon which burst into the abdominal cavity. Fortunately he was still on antibiotics for urinary infection so avoided peritonitis. He is currently home with an open wound, which is healing well. He is off everything except levetiracetam (anti-seizure medication). We still have the cavernomas to deal with and could really have done without the additional problems. Good luck and God bless all those also still dealing with theirs.

Mary said...

Thank you for sharing your story. I have watched my husband start having seizures and go through this surgery all in the past month. He is 5 days post op and doing well. It really helped to hear your story and know that it is just going to take time.

Barbiegirl8 said...

Hello! Im Amber and im 18 years old. I will be having the same surgury on december 23. I was looking online just to see how this surgury was going to go and i found you! your story was so awesome and im glad everything went well. Im not too nervous about the surgury, but i was just wondering...did they take off a lot of hair?

palmtreejen said...

Hi Amber,
Sorry to hear about your surgery, I'm glad my post was able to give you some insight on what to expect. As for your question, only a very small section of hair was removed. Let me know how your surgery goes! Good luck! If you have any other questions don't hesitate to email me at

palmtreejen said...

Hi Mary, how is your husband doing? -Jen

palmtreejen said...

Hi melody
How is your husband doing? -Jen

palmtreejen said...

Did you decide to do it?

Kelly said...

Thank you so much for your story. We just found out today my husband has a cavernoma and will be having surgery on Monday! We are scared to death but after reading your post I feel a lot of relief! I am going to have my husband read it tomorrow ! He is in bed sleeping which he has been doing a lot of here lately! So glad you are doing well and thanks again!!!

arianaely said...

I was recently told that I have a cavernoma too and was told that for now the surgery is not needed, but if I want it out I can elect to have surgery now. Reading your post has given me a lot to think about, I only wish I had someone to talk to about this in my family. Reading your post made me feel a little less alone in this. Thank you for posting this.

Joan Pfeiffer said...

Hi, Jen,
I found your blog when googling information on surgery of a cavernoma in the left temporal lobe. You are so very young to have had experience, and yet wonderfully full of hope and love. I have found your testimony of this "jog" in your life so helpful. I am much older, a grand-mother in fact and just experienced the "prime seizure" that made me go to the ER. I have had such wonderful support from my firends and family and also started a blog. If you have time..... May God continue to bless you and your family. Joan

Anonymous said...

My wife will have this surgery in January, and we are concerned about many things, but feel like we are getting good care (we live in Japan). I am curious if the drugs here will be the same as in the US during recovery. I will ask the physician about this at our next appointment. Thank you for so much detailed information. It is extremely helpful. By the way, is it rude to ask how this has affected you financially? We will be back in the US next year, and worry about medical costs for follow-up MRIs, etc.

Matt Peckham said...

I have surgery later this month at UW Health in Madison, WI for a cavernoma that has recently been brought to my family's attention. I am very busy with college right now and have been frantically searching to see how recovery will go. This has really opened my eyes and has given me hope for a fast and healthy recovery. I'd just like to say thank you for taking your time to write this.

Anonymous said...

Thank you for sharing your journey. I found your blog an hour ago after Google search. I have been so dizzy the last couple of hours that I can only walk a short distance, and wasn't sure if it was related to the cavernoma.
I was diagnosed about 6 weeks ago after X-rays from unrelated trip and fall revealed the cavernoma. I'm in wait and see mode with another MRI planned in a year. I am a 65 year old woman.
Blessings to you and your family.

Anonymous said...

I have three cavernomas, I had a stroke in 2009 then I had brain surgery in March 2015 I am recovering at the moment it's so hard I have good days and bad. I really enjoyed reading your story thankyou,it would be interesting to know how your doing now.
Best wishes xx

Colm said...

Hi Jen

Thanks for sharing your life with us and I'm so glad you are feeling better. Did you ever get headaches from your cavernoma before surgery? Thanks, Colm

johnny flannagan said...

hi jen just sat read ur story,ur a strong girl.. i have a cavernoma in left side my brain my surgeon dosent recomend operating cause its so deep in my brain as it can cause more damage.i didnt ask any questions which i regret.ive get put on medication dont no what im already on toptrimate but its get i have my neurology dr this wed 20th i need ask him more questions,all i no the cavernomas causing my symtoms which is,feeling ill,spaced out,confused.mixing my words up.headaches,also just had an EET test confirmed theres something going on.i feel my lifes been ripped away from me as i feel so low.ive lost my job i loved as a carer,ive not drive,now just been told i cant fly for now and having cancel my holiday.after reading ur story wish they would just take it out a get my life back.... feeling heartbrocken :( love Audrey xxxxx

the shepard said...

Hi my son who is 28 had a seizure then diagnosed with a cavernoma in the ventircle just 10 days ago is now on epileptic drugs and awaiting consultation for ??? surgery!!!

Flo said...

I had surgery for a ltl cavernous hemangioma in 1995, the first one done in Kansas City. I suffered headaches for less than a week but had struggled with language (I have a masters degree in English and writing!!) for years. From Thursday until Sunday morning I rocked with headache, but a trip to the emergency room netted nothing more than pain meds. Sunday morning began with a grand mal seizure. An ambulance took me to the hospital to begin a 16 day stay. It took a week to have doctors from Research and KU Hospitals consort on how to deal with it. Surgery hadn't been done in the past. Instead, they'd tried seizure therapy, but this one was the size of a golf ball, and they all agreed that leaving it would guarantee more brain bleeds. I'd already suffered two by the time they did surgery. This happened when I was 50. Because I'd suffered a grand mal, my license was revoked for six months. I lost much of my childhood memories and those of my children's growing up years. I struggled with language most, which is ironic. A word to not try to talk for the recovering patient. That only highlights the patient's loss and increases stress. I began feeling somewhat normal witin two years but never regained memories whose connections were eliminated in the surgery. I tell my story to say that life is precious, and new memories can be made, language can be relearned (my ability to learn was unaffected) and to congratulate the medical profession for the progress made in 30 years, and the transportation licensing department for revising their policy. Isolation is NOT what these patients need to hasten recovery. God bless all of you who have walked this path and have recovered with grace. Life is sweet, and you realy do learn to not sweat the small stuff.

palmtreejen said...
This comment has been removed by the author.
johnny flannagan said...

hi palmtreejen
Hope i have ur name right as im easily confused.theres that many names at bottom lol.Hope u still get my Email as ive just came across ur story,ur a inspiration young girl.i was diagnosed with a cavernoma left side my brain neurosurgeon said she cant operate cause its so deep in my brain and could more less leave me brain i was shocked here this.i take seizures my whole lifes turned upside down.lost my job,not aloud drive suffer from Anxiety etc.Ended up in hospital other day with a bigger seizure they didnt even scan me as what if i did have a bleed cause my symptoms returned normal a differnt person now with no one talk to as no one understands what im going through.just thought talking someone understands me would help me.hope u dont Audrey xxxxx

palmtreejen said...

Audrey, your story breaks my heart. Where are you located? Can you get a second opinion regarding surgery? Also, there are a few Facebook group pages that you might consider joining out there for support. Keep me updated. Xoxox -Jen

palmtreejen said...

Beautifully said. I still have a few issues with memory and speech but like you said I'm not sweating small stuff. Xoxoxo -Jen

Lister Chang said...
This comment has been removed by the author.
ha said...

I did have a cavernous surgery last 7months now I am going into lower therapy means under 1000mg daily.....please tell me if this true.
500 day 250 night for 2 weeks
250day 250 night
250 day
What scars me is the scar tissue
My surgery was about 2 centimeters below the surface and was in the left side front of my ear not as yours in the back of the ear
Please tell if you had any seizure after 7 or 6 month recovery
Thanks god I don't have any issue so far
Thank you

GmaFlo said...

I had no seizures following surgery. Or if I did, they weren't measurable (petite mal) However, because I had had a grand mal, the state suspended my license, and I had to retake both driving and written tests to reinstate it after six months. I took anti-seizure meds for nearly three years following surgery, upon doctors' recommendation. I had a full-scale psych exam to measure memory loss or any other residual problems. After that, I attempted to move on with my 'new' life and concentrated on new memories. I still haven't recovered most childhood memories or those of my children's childhoods, but I have photos to remind me of the wonderful experiences we shared.
Hang in there. Life can be completely normal, the scars will heal (not the holes in your skull, but skin) and you'll begin to trust that it won't happen again. Life is good. I am blessed. Blessings on you. Trust.

Unknown said...

I had a grand mal in September 2015, and the MRI showed a 21mm diameter cavernoma in a similar location to yours, and a 12mm diameter one at the back on the right side of my brain. I've had a few MRI's now, but I'm still in observe and wait mode, which is driving me crazy, to the point where I opted to see a psychologist for some help. I will have my next MRI in a couple of weeks, and see the surgeon and neurologist soon after that, and I was told last year to prepare myself for the possibility of surgery. Having read your blog that prospect has become much less daunting. Thank you! However, both cavernomas are pretty deep, and I was told I may have a fairly high risk of a major degradation to my quality of life. I have a wife and a 9 year old daughter, and I am frightened that I will be a burden on them. What is strange is that I only have mild symptoms. Some headaches, confusion occasionally, poor short term memory, and occasionally have difficulty with language, both comprehension and expression. But I manage to carry on with my technically demanding job, I drive, and I'm generally pretty well for a 46 year old. Thanks again for your blog. It has given me some hope. The not knowing is the worst part. If you don't mind me asking, how big and deep was your cavernoma? Fingers crossed for next month. :)

GmaFlo said...

I was actually blessed in that my brain bleeds happened in rapid succession and a decision had to be made rapidly, without my input. I'd apparently had petit mal seizures exhibiting symptoms similar to yours, e.g., headaches, confusion occasionally, poor short term memory, and occasionally have difficulty with language, both comprehension and expression, but I have no recall on those, just family commentary. KU Med and Research Hospital conferred on my case since neither hospital had done the surgery before. That was 22 years ago, so cutting edge. I don't have exact measurement of my cavernoma, but they refered to it as golf ball sized. The MRI has a portion set aglow that looks more like a small light bulb. It was behind my eye, above my ear, left temporal lobe, so fairly deep. They made the typical 3-corner cut in my skull. They explained to my family that it would be a lengthy surgery because it had tentacles that would havet to be 'teased' out, abd that instruments passing through braincells cause disconnects with other celks, making outcome difficukt to assess pre-surgery. The holes are still there, but I feel completely healed, mind, soul, body. I got a new lease on life, in gratitude, and people often commented on my 'new youth'. Apparently the symptoms impact us more than we know. I'm surprised, if you're on anti-seizure meds that you're allowed to drive. Another reason surgery was not delayed was that very thing. Drs feared that, even if they stopped the second bleed, another could occur with me driving and harm, not only me, but others. My family was given the same cautions you're being given, but they feared NOT doing the surgery more than approving it. Either way would have been life-changing, so they opted for the more controlled outcome, for which I'm grateful. Like you, I'd have struggled living with uncertainty.
I wish you well. I pray that for all of those walking around with this hidden Bomb in the Brain (title of a book I read about cavernous hemangioms post-surgery. There's another book written by a neurologist who suffered the same malady. They were helpful for my recovery. Of course, the disease is so much more widely known and successfully treated that you could probably find even better sources of encouragement now. Please continue to post as you move through this. Without faith in your future, days can feel long and lonely. Family, faith, and hope help more than I can say. Be well.