What's your life like after Brain surgery?

I had 2 Brain tumors removed in 2005. One was the size of a softball and the other was like a golf ball. All went well till 2016. For the last 2 years I can’t stand without swaying, dizzy always and totally fatigued. Went back to the neurologist and was told it was from scar tissue. There is nothing that can be done to help me he said.

I had 2 Brain tumors removed in 2005. One was the size of a softball and the other was like a golf ball. All went well till 2016. For the last 2 years I can’t stand without swaying, dizzy always and totally fatigued. Went back to the neurologist and was told it was from scar tissue. There is nothing that can be done to help me he said.

Hi Lisa,
My husband had a 3 cm meningioma removed in July. His surgery was performed in Los Angeles and was a 10 hour operation. They were not able to remove all of his tumor because part was attached to the brain stem. His meningioma was categorized as a type two which is fast growing. He suffered a small stroke along with some nerve damage resulting in paralysis in his throat and right side during the surgery. He was unable to swallow anything and was given a feeding tube. He also had to have extensive therapy to be able to walk and swallow again. In October we went to Mayo for radiation for the remainder of the tumor. Last week his feeding tube was removed and he can eat most foods. Most of his diet does consist of liquid nutrition drinks. His last MRI showed no growth in the tumor. He will continue to have MRIs every three months. Overall we have seen much improvement in the last eight months

I’m so sorry to hear about your husband’s struggles. What an awful ordeal. Based on what has been effected, was his a foreman magnum meningioma by any chance? It’s such a rare area for a meningioma and I’m not finding many testimonies or people to compare notes with.
I was diagnosed in Oct of 2017 but put off surgery until June of 2018 so I could have a chance to prepare if I was looking at an extended recovery. I had a craniotomy, but once they got in, it was deemed too dangerous to remove or even biopsy. The tumor was too incased in vital nerves...controlling breathing, swallowing and use of tongue. Had my surgeon tried, I would have suffered the same consequences as your husband. Reading this, I suppose I was lucky that I didn’t suffer any neurological damage from the attempt, but my incision site has since collapsed and my symptoms are getting worse and much harder to control.. The pressure is unbelievable. I also have an artery that is engaged with the growth combined with scar tissue my head feels like a constant pressure cooker. The left side of my head is always tingling and sensitive. The headaches are constant. I work as a singer/entertainer and have come close to blacking out during a performance more times than I can count.
I was scheduled for radiation but sought a 2nd opinion and this new team of doctors is saying that radiation could do more damage than good without a biopsy. One surgeon on this tumor board had a similar case and the tumor was completely removed through the patient’s nose.
I was told at the first facility that I was out of options and my tumor was now considered inoperable... but I’m now hopeful that there may be a less invasive approach to getting rid of this.
I’m thinking of seeking a 3rd opinion at the Mayo Clinic. It would require travel and could be an extreme hardship on my family so I really need to weigh my options carefully.
Has your experience been positive?

Sending good thoughts to you and your husband.

I am so sorry you are going through this. I had a craniotomy on Aug 28, 2018. What does your incision site feel like when you touch it? Mine feels very sunk in. I was wondering if it could be collapsing. I go back to my neurosurgeon in March for my 6 months recheck. I still have 15% of the meningeoma left because they couldn't risk removing all of it. All of this is still new to me and just trying to figure out what is "normal" after having this surgery
Thank you,
Mandy

Your post made me remember two things my wife's neuro-oncologist said to us after her craniotomy. In the waiting room we asked 'when will she be back to normal'. He said "I suggest you think of this not as a new normal, rather a new different". He also said "It's important to remember that every patient, brain, and tumor are unique so your wife and mom's post-surgery journey will also be unique."

Not anything earth-shaking, but his words did help us move forward with a better understanding of what might, and did, lay ahead.

Strength, courage, and peace!

I’m so sorry to hear about your husband’s struggles. What an awful ordeal. Based on what has been effected, was his a foreman magnum meningioma by any chance? It’s such a rare area for a meningioma and I’m not finding many testimonies or people to compare notes with.
I was diagnosed in Oct of 2017 but put off surgery until June of 2018 so I could have a chance to prepare if I was looking at an extended recovery. I had a craniotomy, but once they got in, it was deemed too dangerous to remove or even biopsy. The tumor was too incased in vital nerves...controlling breathing, swallowing and use of tongue. Had my surgeon tried, I would have suffered the same consequences as your husband. Reading this, I suppose I was lucky that I didn’t suffer any neurological damage from the attempt, but my incision site has since collapsed and my symptoms are getting worse and much harder to control.. The pressure is unbelievable. I also have an artery that is engaged with the growth combined with scar tissue my head feels like a constant pressure cooker. The left side of my head is always tingling and sensitive. The headaches are constant. I work as a singer/entertainer and have come close to blacking out during a performance more times than I can count.
I was scheduled for radiation but sought a 2nd opinion and this new team of doctors is saying that radiation could do more damage than good without a biopsy. One surgeon on this tumor board had a similar case and the tumor was completely removed through the patient’s nose.
I was told at the first facility that I was out of options and my tumor was now considered inoperable... but I’m now hopeful that there may be a less invasive approach to getting rid of this.
I’m thinking of seeking a 3rd opinion at the Mayo Clinic. It would require travel and could be an extreme hardship on my family so I really need to weigh my options carefully.
Has your experience been positive?

Sending good thoughts to you and your husband.

@siobhanmcv, welcome to Connect. It must be confusing to receive opposing view points. You are wise to carefully consider your options given the travel, expense and consequences to your family.

I might suggest that you can contact Mayo Clinic, share your medical records and see what options may be available before traveling or incurring costs. Here is the contact information: https://www.mayoclinic.org/appointments
Mayo Clinic offers appointments within 48 hours through the the Brain Tumor 48-access program. Experts at the Mayo Clinic can help you navigate your treatment options and answer your questions.

I can't imagine singing and performing with such pressure in your head due to scar tissue. Are you still working?