Hello All,
I had my Annie clipped 10 years ago. Since that time I have not had the ability to sweat and my thigh muscles do not work. This causes me to need assistance to sit down or stand up. I have developed work arounds that aid me.
After relocating, I just got a new neurologist. He mentioned these are two symptoms that he has not encountered before. I’m wondering if anyone else experienced either of these symptoms?
Thank you for your help.
Jj
Hey SeeJ
I was the exact opposite, I never really sweated much prior, but post surgery… …OMG, I didn’t just sweat, I was saturated. I’d wake repeatedly in the middle of the night shivering. I’d need to get up 2-3 times a night to dry myself with a towel. I was sweating so much the woollen underlay on my bed was breaking down underneath me. I’d have to take a spare shirt to work with me as 1/2 way through the day my shirt would be sticking to me, wet with sweat.
When they cracked me open (craniotomy), they went down between the 2 hemisphere of my brain and pierced through the hypothalamus. This sent my system into a tail spin. My sex drive didn’t just decline, it vanished and I was an emotional mess. The neuros were convinced it was unrelated to surgery, but it was nothing like this prior. ‘Neurosurgery can be a rather emotional event’ they told me, but I it wasn’t the surgery I was emotional about, just normal day-to-day events post surgery. I seemed to have a hair trigger emotionally. Little things, that normally wouldn’t have affected me, and I was in tears or rage, then I’d get embarrassed at my disproportionate reaction, which only added to my emotional mess.
And the neuros opinion “ohh, that’s got nothing to do with anything we did. I’ve never seen that before. It must just be YOU…” but it turns out that some of these (what I call) ‘Oddball symptoms’ are actually much more common than they’d like to admit.
Merl from the Modsupport Team
Haven’t had a craniotomy but I’ve had changes every time I’ve had my Neurosurgeon in my brain. It got to the point we’d be anticipating “what next, what will I be like when I wake up”. We had to laugh and joke about it because that helped our stress levels.
Did you ask your new Neurologist if he’s going to do some research on it or just stick to his statement? I’ve told a doctor or three that they shouldn’t just say something and then not look it up. I also have a habit of kindly telling the medical professionals it’s ok to not know everything since they’re not God, but it’s not okay to not educate oneself on something they’ve never come across before.
I also just learned the other week that thigh pain can be caused by a disc issue in our spine. It makes me wonder if he needs to do some imaging of yours.
Merl,
Thank you for your response. I also lost my sexual drive besides the inability to perspire. You are correct, most neuro people don’t acknowledge all the changes that occur due to our neuro transmitters paths being altered. I’ve learned lots of work arounds but still have to take precautions. Best wishes to you.
Jj
Hello Moltroub,
My new neurologist is younger (10 years experience). He is very interested in learning why and if anything can be done. He has scheduled two tests to do some further investigation. I already had my disc checked and that is not the cause. He did mention something called Dysautonomia. I’m hoping to learn more after the test.
I’m careful to avoid doctors who think they are gods. As you already know. No one understands more about our bodies than we do.
Take care,
Jj
Hear! hear! and ix-nay on docs who are afflicted with a god complex. I will not give them my time either. A good symptom of or indicator that a doc may be afflicted with that mental disorder is they appear irritated when you ask them a list of questions that are backed by research. A more humble physician will not evidence an adverse reaction to your questions and will be glad that you are actively engaged in your body’s well being.
Often finding a specialist who hasn’t can be VERY rare. Especially when their specific treatment regime does not have the desired outcome. I’ve had a few procedures/treatments with questionable outcomes and on a few occasions the responsibility has been put back on me, as if I’ve got control over any of it, with statements like “Well, it’s worked for other patients… …I don’t why it hasn’t worked this time…”
And, personally, I think that’s about the only way to manage it all, with ‘work arounds’. I can go full tilt all day long today, but if I do that I have to be prepared to be laid up in a dark, silent room tomorrow (and possibly the day after). I would much rather do 1/2 pace today and 1/2 pace tomorrow to complete the task, than to burn myself out. The changes I’ve needed to make to my routine have been VERY frustrating, but I’ve had no choice. I either fry myself (and curse myself for it) or work around it all.
There’s a theory known as the ‘Spoon theory’ (Google it). In very basic terms spoons are equivalent to energy. If I have 10 spoons for my day and I use 5 spoons just in getting out of bed, showering and having breakfast. I’ve used 1/2 of my spoons even before I’ve left the house. Then I have to be careful not to use all of my spoons before noon. I can borrow spoons from tomorrow, but that will mean I have to be super cautious that I don’t use too many spoons tomorrow. If I keep using tomorrow’s spoons, by the end of the week I’m so fried I’m lucky to be able to even crawl out of bed. That ‘Management’ thing can be a real fineline sometimes. Sometimes I have it all under control and sometimes it kicks me to the curb. No 2 days are ever the same.
Merl from the Modsupport Team
He sounds like a wonderful Neurologist! Good for you in finding him. Merl often shares the difficulties he has getting a doctor to properly diagnose and not assume, in my experience I believe it’s more difficult for women not to be blown off. Until I ruptured, I had that happen all the time with the PCP I had. I’m unsure why, but after the rupture he did decide finally that I have an abnormally high tolerance to pain. New PCP and she’s an excellent fit for me, all my medical specialists are.
I hope the neurologist figures it out for you, fingers crossed!
Hey @SeeJ
@Moltroub is correct in that my journey has not been easy, nor straight forward, far from it. And I do agree that many Dr’s (mostly male Dr’s) can be rather quick in labelling things as a ‘female issue’. I think this occurs when the most when we don’t fit their very specific diagnostic/treatment boxes. I call this the “A+B=C” theory or Symptom A + Symptom B = Diagnosis C. Nice and simple. But I don’t have just A+B. For me it’s more like:
A+B-C/DxE 
F…and everyone of them is variable. A+B is way too simple for me.
But because I ‘don’t fit’ it has become very common for them to give a pseudo diagnosis or a ‘I think it might be …’ sort of answers. As I said in an earlier post, one of my BIG problems early on was my body temp regulation. I’d be boiling hot, sweating in the middle of winter and my wife would be shivering and I kid you not, this neurologist says to me “…and if you were a woman, I’d say it was menopause…” I was 28 at the time. When I told him this he said ‘Early onset male menopause? possibly?’. I found it to be like an auto-response he’d used before to explain away or blow off a patient’s symptoms. So, even as a male I do have to very much agree with @Moltroub:
My advice: Don’t let them blow you off. I want answers, not random guesses and I query them ‘How do we prove it…?’ Blood tests/scans/xrays etc. We can all ‘guess’, but how do you prove it? I want hard data, not just an educated guess.
Merl from the Modsupport Team
Having XY chromosomes, I have no experience in observing doctors blowing away questions or concerns that a patient with XX chromosomes may have. I do, however, empathize with them. Sorry to hear that.
I employ a methodology that makes it difficult for a doctor to blow away any of my questions or concerns, because I create a record of them from the get-go.
Before I appear at my appointment, I sit down and write/type all my concern-based questions on a sheet of paper.
After I appear and during the initial phase when the doc’s assistant takes my HR, BP and oxygen readings, I give the assistant a hard copy of the questions that I prepared for the appointment and ask him/her to share it with the doc.
The doc is then obliged to treat my questions and concerns seriously, because they are now on record via a shared hard copy of them.
Granted, this is not the most conventional way of handling a doctor’s appointment. But not being overly sensitive to how others may perceive your actions goes a long way towards looking out for your own best interest, 'nest-ce pas? 
You all make very good points. I am pretty strong willed and do stand up for myself. I do lots of research and present my findings during my discussions with the doctors. It had proved to be beneficial. I will update you on what this doctor finds out. Take care!
Jj
Same here, but when Ms.Ryann, the NP for my neurosurgeon was hired, she taught me to use my portal. Questions are usually answered before I get to an appointment with her as I will send them a week or so in advance. Questions on my portal are also part of my medical history. This allows us to discuss in more detail on some questions I may have.