Left Temporal Lobe AVM Craniotomy Story

Hi everyone!

Jay from Singapore here. 9 weeks ago on 15 Aug 2022, I had my brain AVM removed. I’d love to share my story with this community, and hopefully provide some insights on what I’ve learned from my experience! This is a long post, and so I’ve added a bullet point version below. :grinning:

Type of AVM
After I turned 31, wanting to be more health conscious I went for a full body scan despite being asymptomatic. Coincidentally, the MRI revealed I had an unruptured ~3cm left temporal AVM. For more clarity on the AVM, I did a cerebral angiogram that revealed it was in my left temporal lobe/ peri-sylvian region and near my skull, had one deep venous drainage, and had a high blood flow (each heart pump would result in blood reaching that AVM). It was a Grade 3-4 AVM. Following which, I went for a functional MRI to evaluate the risk of speech impairment (verb generation and verbalization) if I chose to do a craniotomy - severe neurological deficit was ~10%. Right-sided paralysis risk was ~5%.

AVM Removal Method
In the following months, I consulted several neurosurgeons and decided to do craniotomy over the gamma knife and leaving it alone. Here are my reasons why:

I didn’t choose gamma knife (I was quoted a ~65% success rate after 2-3 years for my case) because it could increase the risk of rupturing during that treatment duration by disturbing an unruptured AVM. I was also concerned about the radiation bleeding into other healthy brain tissue areas, causing other potential adverse effects.

I didn’t choose to leave it alone because assuming I lived to the median age of ~85, the total compounded rupture rate would be ~67-89% (from an annual rupture rate of 2-4%). FYI statistically for each rupture, the death rate is ~15%, neurological deficit is ~35% and remaining ~50% is a migraine. However, once it ruptures, the re-rupture risk will be greater than 2-4%. Also, blood vessels to weaken over time due to aging which may lead to an AVM rupture.

Assuming the gamma knife method fails, or if the AVM ruptures after leaving it alone, I would have to go for a craniotomy at a later age. It would be more difficult to recover from the neurological deficits then, as brain neuroplasticity decreases as you age. The chance of completely removing my AVM was high as well as it was on the surface of my brain. Thus, I chose craniotomy.

Surgery
The surgery took ~9 hours (3 hours longer than expected) due to minor complications. The surgery caused a small hole in my M3, 1 of the 4 middle cerebral arteries, which had to be sutured and repaired. I lost 3 litres of blood (the average human has ~5 litres), and so replacement blood had to be continuously transfused throughout the surgery. However, the surgery was an overall success and the entire AVM was removed/ resected! :pray:

Post-Surgery
For the first week, I was significantly incoherent due to aphasia and was slow at processing information. I had slightly less control on the right side of my body, but was strong enough to walk. My head swelled substantially and had a pocket of fluid under the scalp. As for pain, it was mild and bearable at the incision spot.

By the second week, my aphasia did not improve and I felt really frustrated. At this stage, my vocabulary, vocalization and reading was at ~50%, and was cognitively slow (~30%) compared to pre-op. This pushed me to start taking speech therapy lessons. Great things about this week was that I was released from the hospital, felt no more incision pain and regained most control on the right side of my body.

In the fourth week, I recovered significantly from aphasia. Several speech therapy lessons reminded me of a ton of words I forgot. My vocabulary, verbalization and reading was at ~80% compared to pre-op, and processing information speed improved (~60%). At this point, I could decently converse with friends and family.

After 9 weeks, I’ve regained ~95% of my vocabulary, vocalization and reading, but processing information speed is at ~80%. It’s great that I’ve mostly recovered, and I hope that I’ll be able to fully recover eventually! Just to be safe, I’m going to give myself another month of rest before heading back to work.

Cosmetic Consequences

  • To undergo a craniotomy on your temporal lobe areas (left or right), the surgeon will likely have to cut your temporalis muscle to gain access to that area because that muscle covers that part of your brain. When the temporalis muscle is cut, it usually contracts downwards leaving the patient with ‘temporal hollowing’ (google this to see how it looks!). My temporalis muscle was not resuspended, so the contracted temporalis muscle created a depression along the inferior margin of the temporal line of the frontal bone (‘temporal hollowing’), and a muscular protrusion at the inferior portion of the temporal fossa. I may go for a reconstructive surgery to repair this perhaps 6 months post-op once the wound settles down. So be sure to ask your surgeon if your temporalis muscle will be resuspended at the end of your surgery!

  • Due to the trauma and shock my body received from the surgery, some hair around the scar area where it was shaved for the surgery has yet to regrow. According to my surgeon, this is common and it will likely take 6-9 months for regrowth.

If anyone has experienced either of these cosmetic consequences, it would be great to hear about your experience and how you’ve dealt with it!

Conclusion
I am immensely grateful and blessed that the surgery was an overall success. I understand how painful the AVM journey can be, so feel free to reach out to me if you have any questions. Stay strong everyone! Much love. :muscle: :heart:

TLDR

How my brain AVM was discovered: Incidentally from an MRI scan by being health conscious.

Type of brain AVM: Unruptured. Grade 3-4 Left Temporal Lobe/ Peri-Sylvian ~3cm AVM. One deep venous drainage and multiple feeding arteries. High blood flow. No symptoms.

Why I chose craniotomy: For gamma knife, fearful of the risk of disturbing an unruptured AVM and radiation bleeding into healthy tissue. Without treating it at all (at my age of 31), cumulative percentage of it rupturing assuming I lived to the median age of 85 was ~67-89%. With craniotomy, chance of completely removing the AVM was high as it was on the surface of my brain, and it would be easier for me to recover from surgical side effects at this age due to higher brain neuroplasticity, compared to if I were to do it older.

How the surgery went & complications: AVM was completely removed. ~9 hours - 3 hours longer than expected. Caused a small hole in one middle cerebral artery, which was sutured and repaired. Lost 3 litres of blood, so replacement blood had to be continuously transfused.

Temporary post-surgery side effects: Moderate aphasia. In the first 2 weeks, vocabulary, vocalization and reading was at ~50%, and processing information speed at ~30%. After 9 weeks, It recovered to about ~95% and ~80% respectively.

Permanent post-surgery side effects: Unsure if I will fully recover from the slower cognitive speed.

Cosmetic consequences: Temporalis muscle was not resuspended, and so I have a temporal hollowing as well as a muscle protrusion at the zygomatic bone area from the contracted muscle. Some hair loss around the scar area due to the surgical trauma and shock. Hair will likely regrow in 6-9 months.

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Dear @justgrateful

Welcome to the community and glad to know you are doing so good.

I myself had a craniotomy in June this year, and like you, mine was un ruptured and found on a check up.

My recovery was a little longer as my balance and equilibrium was diminished. But now I am much better.

Thank you for sharing

Best

Francisco

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Thanks for sharing your story, amazing! It’s great you’re doing so well, and in speaking brain things it is still a fairly short time. My AVM was Left temporal, Grade II, it was a I in size but on the inner side of the lobe made it a II. I had Gamma Knife in November 2016, and got the all clear in February 2019. Mine was located due to a rupture, I had a number of complication around that with aphasia being one. I can attest to that being frustrating! All is pretty good now, a wee bit of aphasia but have adjusted and can usually re word as I have developed an ability to see it coming. Take Care, John.

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Wow brother that’s a great story of a comeback

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Hi Justgrateful,
What an uplifting story! So glad you are healing so quickly. I had a Dural av fistula in Jan2021 and had to have an emergency craniotomy due to it beginning to bleed. I was driving and vision in my left eye was lost and when I tried to zoom with my dr., I couldn’t find my words. So needless to say God was with me. Had one siezure after the surgery but may always be on siezure med due to frontal lobe encephlomalacia. That’s ok. I’m still here! I’m so happy you have recovered so quickly and are able to give so many hope.

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Hi Just, I have a feeling that this is a good place for you to learn, vent, teach… There are some wonderful people here in terms of knowledge, experience and caring. Also there are some pretty cool personalities and you can actually make friends. At least that’s how it feels to me, as close to “real life” friends as you can get. And don’t forget-- the price is right.
I’m wishing your recovery continues to progress quickly. Greg

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Wow!
I’m genuinely impressed by your wealth of knowledge and how thought out and structured you are in your writing.

I hope you have a continued recovery

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Hi ! I have had the same avm. I am much older then u but would love to catch up with u in Singapore . I am Malaysian but my family is in Singapore so go there very often . Shall we meet up n talk about it .

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I see that you and @justgrateful are indeed in the same city. If you decide to exchange any personal information, please do it ONLY through a private message. I want to make sure to protect your personal information.

Sharon from ModSupport

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Thanks .
Yes for sure it will b a private message

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Thank you for sharing. Every story of survival gives me hope. I wanted to give back and address your request regarding the cosmetic side. My son, Jake, had an AVM rupture at 17 which required a cranicetomy of half his skull. After two months they returned his bone flap but a year late it was necessary to do another cranioplasty as the bone had dissolved, rare but happens. He has the indentation you describe. Two options were given a 3D printed mold of his left side to be inserted or fat injections. We went with the fat injections as is is less invasive but he will likely need 3 of these outpatient surgeries as half the fat injected is absorbed. You are young. Go for it! Hope that helps. … Jake is now 20. Although a newAVM grew and treated with gamma, he’s doing good and works everyday to continue his recovery. God bless you and all who suffer from this disease.

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That’s great to hear, Francisco. May your physical functionality improve to a version even better than that of pre-op!

We truly are so fortunate, on both ends (discovery and recovery). :point_right: :point_left:

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It indeed was frustrating. Never expected it to take such a toll on me. Hey, I’m so glad things turned out so well for you! :raised_hands:

Just curious on these aphasia things in your case though:

  1. How severe was it?
  2. Did it surface before/ after the Gamma Knife?
  3. How long did it take for you to see significant improvement?

Thank you sir!

Wow it’s so amazing that you survived a rupture while driving. That’s one miracle alright!

Tbh, for my case I’m quite paranoid about the potential for seizures down the road though (I’ve never had a seizure thus far pre- and post-op), as I am still on Keppra (1500mg/ day) but will begin weaning off it 4 months post-op.

May I know how long after your surgery you had that one seizure?

Thank you Greg! Gonna do my best to reach out to those needing some brain AVM experience advice in my area! :muscle:

Thank you so much for your kind words! Definitely not an expert on the matter, but did my best to understand my situation and the risks involved. Before I made the decision to undergo the craniotomy, I believe I’ve read countless research papers on the efficacy of craniotomies/ gamma knife to remove brain AVMs. :face_with_spiral_eyes: It’s just part of my personality to do so :joy: Not a big deal, but I wish I had read up on the potential cosmetic consequences of craniotomies though!

Hey Arlene! That is music to my ears. Sure, I’d love to meet up with you. Please please please drop me a personal/ private message! :smiley:

My aphasia started post bleed, and was not too bad but certainly frustrating. It improved greatly within a couple of weeks, then to the point of showing up infrequently as it does now Certainly, for the most part, mine was short lived. Gamma knife did not worsen it, and made no change. John.

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Glad you are doing well and thanks for sharing your story. You did not mention embolization. I was curious if this was presented to you as an option or not. If so, why did you choose not to embolize?

Did the doctor mention any risk to vision? Typically the vision fibers run along this path.

Regards,
Mike

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