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Does Anybody Regret Having Their Surgery?

Does Anybody Regret Having Their Surgery?

I'm considering having an operation to remove a temporal lobe lesion. I'm told there's a risk that it could handicap speech or language, and it doesn't always remove all seizures (if any at all). Did surgery cause you any kind of problem that makes you regret surgery?

posted almost 2 years ago
A MyEpilepsyTeam Member said:

With any surgery there is a risk. So in order to make a decision that is comfortable for you is ask questions. I mean ask 9999 questions. Find out what kind of surgery it is and research it. Go to YouTube and view information on the surgery and listen to interviews with doctors and patients. That's how i decided on my ablation surgery. The only problem i had after surgery was my small headaches were more intense and ice cream was a little more sensitive. Got to have ice cream. Take care.

posted almost 2 years ago
A MyEpilepsyTeam Member said:

I have not regretted it so far. It's been almost two and a half years since my last seizure. Last year I was declared officially cured.

posted over 1 year ago
A MyEpilepsyTeam Member said:

Stephen, PTL! I did finally find my surgical report in the file drawer. It was a L frontotemporal craniotomy for an anterior mesial [[treatment:temporal lobe resection:5526bb081fcaa35b72000456]] using the intraoperative microscope. I wasn't awake at all during my surgery because the previous MRI's had defined the area of my brain needing the work. After reading this report today, I understand why my recovery did take a longer time period. The first surgery (in 2009) was a "resection of L frontal cavemous malformation." In the note, the MD indicated that I was only promised a "65% chance of seizure control due to the nature of the problem." Yes, it was a risk, but I am grateful for the decline in the frequency & strength of the seizures. The
nocturnal grand mal seizures and loss of bladder control did stop. There has also been a decline in the partial complex seizures during the daytime. I do still continue with difficulty in clarity of my verbal speech (using the correct word to convey what I am thinking). I think that the connecting nerve tissue between the Broca & Wernicke areas had been cut during the surgery. That's why I used the "choo-choo train" word picture to describe my recovery process related to speech. Also, please ask questions about the medication that you are taking. Mine was not available in an IV formulation. I went 8 hours between taking my meds (pre & post op), and did have seizures when I regained consciousness. Yes, changes were needed in the follow-up medical care (regarding the best Med & dosages). Some of the recent classes that I have taken (for my OT & LMT licenses) have helped me to learn more therapeutic techniques that have been helping to release the very tight GRIP of the scar tissue (not just on the suture line). Your head/ neck will be rotated to the R side. That means that your neck flexion/ extension & B rotation muscles will be very tight. (My C-1 vertebra was actually stuck under my L occipital bone). This does contribute to the strength of the headache pain (with the greater pull on the cranial bones). Please do the research concerning the Cranio Sacral therapeutic [[treatment:massage:5526d0531fcaa353cc0029f5]]. I hope that this info helps. And, Yes, I have continued to pray for you. Shalom. Maire'

posted almost 2 years ago
A MyEpilepsyTeam Member said:

I done all the tests to see if if I qualified to get an operation but unfortunately I didn’t too many red flags came up x x

posted almost 2 years ago
A MyEpilepsyTeam Member said:

Stephen, I'd like to add another thought regarding the recovery process, especially related to the formation of the scar tissue. I wasn't able to start with the [[treatment:massage:5526d0531fcaa353cc0029f5]] therapy tx's until my cranial bones started to heal. The scar tissue
really does have a negative impact. It doesn't stop growing... it just will cover larger areas under the cranial bones. I know that my Parietal bone was in the wrong position because of the 22 staples in the incision line (from my L eat to the mid-frontal bone) where the bone was opened up. The P bone was actually indented rather than rounded and really contributed to the pain. My name was not "Miss Congeniality" after the surgery!! What adds to the tightness overall is the B neck SCM, Scalens, upper traps & pectoralis muscles. Your head will be rotated to the R side. I know that my C-1 & 2 have been out of alignment for so long, but the scar tissue is starting to release its "grasp" on the bones, making my head/ neck rotation now within functional ranges and without pain. PTL! Please check with the surgeon about the amount of time that you should wait before starting this (very gentle & effective) [[treatment:massage:5526d0531fcaa353cc0029f5]] therapy treatment. Probably the best area to start the [[treatment:massage:5526d0531fcaa353cc0029f5]] treatments would be the upper torso/ neck muscles (to release the tight pull on your cranium). I know that there are no pain reception nerves on the brain, but the pressure and wrong positioning of the bones really changed my personality negatively. I know that the Surgeons are very educated and skilled, but they don't step in to help during this long, arduous part of the overall recovery. I learned a very important life lesson: just do 1 day at a time... and patiently give yourself the time needed to relearn to do the life skills that were so easy before... but now will be very difficult. I hope that this helps. Yes, I will keep you in prayer as well.
Shalom, Peace... Maire'

posted almost 2 years ago
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