Wednesday, January 15, 2020

Herniated Disc Update #8 PLUS Seizure Update

Herniated disc update:  It's been 3.5 months since I had surgery - a laminectomy and discectomy of the L3 - for my herniated disc.  I had a third follow up appointment with my neurosurgeon last week; we discussed getting another MRI to check things out since my leg is still not 100% better - it's hugely improved, but I still have incidents where if I move wrong or get in the car awkwardly, I'll get that old familiar shooting leg pain.  But, since the recommended course of action would be to continue to wait for more healing to happen, we decided to hold off on the MRI.  I'll hold off until August, if need be - our insurance runs on a fiscal year so I've hit my deductible already and any big tests won't cost me much at this point; why not get one if there's any doubt?

With all of the craziness of the seizure and then traveling, I have completely gotten off of my physical therapy routine, which is too bad because I can tell that I'm not as flexible as I was; in fact, every time I get up from sitting, I have to steady myself and I walk stiffly for a minute or so until things get moving again.  My doctor is very pro physical therapy so I'll begin another round with Amanda this week and hopefully with that plus more time to heal, I can put this herniated disc saga behind me soon.  I'm ready to be done with it, believe me.

Seizure update:  A lot has been happening with this while nothing much has changed.  Right before Christmas I had a second opinion via telephone from a seizure disorder neurologist located in New Haven, Connecticut.  This was via 2nd.MD, which is a service provided as part of our health insurance, and while I went into it thinking it could be a whole lot of nothing, it ended up being incredibly helpful.  Prior to the telephone call I'd given permission for my ER records, with the CT scan, MRI, EEG, etc, to be sent to the specialist, so when we spoke she'd gone over everything and gave me her take on what might be going on, along with what she recommended. 

She agreed with my original neurologist that with the EEG showing abnormal activity, I do need to be on anti-seizure medicine, although she recommended switching to one that should be easier on me than the Keppra has been, side effect-wise.  She also recommended getting another EEG, even while taking the medicine; she said that if it came back showing less abnormal activity, that would be an indicator that the medicine is working, which would give me some peace of mind (more on that in a bit).  Another thing she recommended was that I see an epileptologist in Houston for a workup, which I'm on board with doing.

While this neurologist does think I have some sort of seizure disorder, she was encouraging in getting me back to living a normal life.  Because I had no indication that a seizure was imminent, and because I had been dealing with a little stomach bug/not feeling great the weekend that it happened, she recommended that I pay attention to times when I am not feeling great, and during those times to not drive or swim or do anything that might result in getting seriously injured if I were to have another seizure.  Also I'm supposed to be sure and get plenty of good sleep, which hasn't been happening for me for years now so I'm not sure how I'm supposed to accomplish that, but I have been trying to go to bed earlier.  I still wake up in the middle of the night but I'm more rested when that happens, LOL. 

Last week I not only had an appointment with my neurosurgeon, but also with my neurologist - it was Neurology Week, woohoo!  I told my neurologist about the second opinion I'd gotten and she agreed to switch my anti-seizure medication to Lamictal; it's a very slow titration, 25 mg/week for two weeks before increasing another 25 mg, and we're heading to somewhere around 150 mg, so I'll be continuing to take the Keppra while this is happening.  I'm glad she was agreeable to the change.  She is putting in a referral for me for an epileptologist in Houston while my neurosurgeon is looking for one to refer me to as well - I am hopeful that between the two of them I'll end up with someone who can help me navigate through all of this and figure out what I really am dealing with.

What I want to end up with all of this is some peace of mind.  I'm having a hard time reconciling what happened.  One minute I was standing in my kitchen and then next thing I knew, I was on the ground, not knowing how I got there.  To go down like that with no warning, and to not be aware or have any memory of what was happening during the seizure has been really unsettling to me.  It doesn't make a lot of sense as to why it bothers me as much as it does, but when we were at a family gathering recently I happened to overhear someone say that he'd had a seizure, and when I asked him what had happened, he had a very similar story regarding how mysterious the entire event felt to him.  While I was sorry that he'd had a seizure, I was really glad that I got to compare and share our experiences.

I try not to worry, at least consciously, that this could happen again.  After all, I'm on anti-seizure medication, so that should be taking care of things, right?  But I will admit that the fear of another seizure is still deep inside of me because I'll notice that if I'm not feeling great I'll suddenly become irritable, and I think that's the worry - warranted or not - coming out.  I am still on my state-mandated three months of no driving which is fine with me.  It's annoying and inconvenient to not just hop in the car and go somewhere whenever I want to, but it's one less thing to worry about.

As for now, I'm doing what I'm supposed to be doing - taking my meds, resting my still-concussed brain, and trying to get back to my regularly-scheduled life, whatever that is at this point.

7 comments:

  1. Do the neurologissts have any idea why you developed the seizure disorder? I guess they don't know--the brain is such a mystery--but still. Glad you're still forward focused.

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  2. I think your anxiety, worry or whatever you want to call it is justifiable! The only thing being that you don't want that to paralyze your life. I'd take the words of the neurologist who has encouraged you that you can and will get back to living a normal life and run with that. Like literally if you feel the anxiety creeping in, concentrate on what she said.

    As far as sleep goes, it took me a bit of work but I've come up with a magic cocktail of natural supplements that work to both get and keep me asleep for the most part. Have you tried anything like melatonin or magnesium?

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  3. Have you considered talking to a therapist about...everything? You've had a very traumatic and disruptive year - it might help to talk to someone who can help you sort through all of your feelings about what has happened and learn how to deal with the worry and anxiety you feel about having another possible seizure. xoxo

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  4. Wow, that is a lot to keep track of. I'm glad your local neurologist agreed with the Connecticut doctor on giving you the new med. That is interesting that she told you if you were not feeling well to not drive, etc. Just so you know, I sit in a pretty low chair. So it takes me a bit to get up and then I shuffle stiffly for just a bit.

    It sounds like you are doing everything right. Following your doctor's advice. And getting some more P.T. from Amanda sounds great!

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  5. I think it totally makes sense that you are so bothered by not knowing why or how it happened. You want to be in control of your body and it's completely frightening to know you are not! That totally makes sense. The idea to watch for not feeling well and be more cautious then is a good idea, but like you said - it just makes you cranky and worried! Ugh. I am sorry. What a headache. I am glad you got a second opinion and have a good team looking out for you. You guys will figure out what works for you in time!

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  6. Thanks for the M.U.D. (Medical UpDate), as my mother used to call 'em. Sounds like you are doing all the right things and living the best life you're able to at this point. I can only imagine what it must be like wondering all the time if you'll have another seizure, so the doctor's recommendation to pay attention to when you're feeling crummy is at least a little helpful. Hopefully the new medication will do what it's supposed to do and you'll continue to be able get back to more of your old routine!

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  7. Just take care of yourself. I'm glad they are still looking for answers.

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