Hi everyone. In 2017, my now 24 yo son had a subarachnoid hemorrhage, which was coiled and he was given a shunt. He didn’t start having headaches until months after they replaced his bone flap but he now suffers from them all the time. I can tell now through reviewing some of the previous post that this is very common as the response from the doctors, which is somehow comforting. I was trying to do online research and saw a couple sites talk about acupuncture. Has anyone tried this before and if so, was it helpful? Thanks!
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Hey Gloria,
Yes, I have trialled the acupuncture treatment. I have heard that for some it can be beneficial, but unfortunately I am not one of them. It was explained to me that the benefit can vary depending on the source of the pain. For example if it is nerve related then, yes, it may benefit. But if it is blood flow related acupuncture may not resolve or benefit. This really can depend on the practitioner and the information they provide, like many dr’s, some profess to have the ‘key’, but then when their treatment doesn’t have the desired benefit the dr’s often put it back on us, the patients.
But in all honesty, trial it, see if it helps. If it does, fantastic. If it doesn’t, well, you’ve tried. As I’ve said here before ‘If someone said standing on one leg, facing north, singing kumbaya helped, I’d try it’. BUT, I would recommend not going into any treatment expecting ‘a miracle cure’ because if it doesn’t help and we put all our hope into it, it can have a major depressing effect. If it does help that’s a HUGE bonus.
Merl from the Moderator Support Team.
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Welcome! We don’t have an acupuncturist in our area, so it’s one thing I didn’t try. The three things that have helped me are hydration, protein and massage. My massage therapist was hesitant until my neurosurgeon gave the okay. She took it very easy through all my surgeries.
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Thank you for those tips. I will pass those onto my son.
Thank you for the info. How did you find out it was a blood flow issue and not a nerve issue? Is there a test that can be done or was it something you were able to determine?
Hey Gloria,
'How did you find out it was a blood flow issue and not a nerve issue?'
For me it was a case of elimination. I’ve had a few suggestions by Dr’s to try alternative treatments ie physiotherapy, hydrotherapy, Bowen Therapy, chiropractic, TENS machine, etc and acupuncture. So I tried them all. All of these treatments related to nerves and although there was ‘some’ benefits from them, none of them were my answer. When I saw the chiropractor they explained that if it was a ‘nerve’ issue these treatments should have had a greater impact, but they hadn’t.
As I have an issue with fluid in my brain (Hydrocephalus) differing practitioners queried if the alteration in fluid and blood within the brain was in fact a contributing (or primary) factor causing my ongoing pain issues.
I asked the surgeon if this could be the case and to say he was unhappy about my question would be an understatement. He thought I may sue and was asking questions to garner evidence, which was NEVER my aim. I was looking for answers not blame, not $$$$$. I have seen numerous neurologists, one of whom gave me the TENS machine and multiple treatments with Botox, again to no avail. One of the neurologists again suggested that the fluid flow, both blood and CSF being altered could have an impact.
There are some tests that can be conducted to investigate fluid within the brain, a cisternogram is one such test. But a less invasive check can be done by MRI with a contrast dye. The appropriateness of these tests would need to be discussed with your son’s dr’s as each can have it’s own pro’s and con’s.
Merl from the Moderator Support Team.
I know Merl shared how he determined blood flow. Besides the MRI, they can also use an ultrasound on the brain. I had at least two a day in ICU for vasospasms.
Thank you both for such useful information. Stay safe and healthy everyone!
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Hi, Have a coiling. Some acupuncture but in hands and feet/legs. Don’t let them do the head… not necessary. Tell them about coiling. It helps some but I get more relief from Charlotte’s Web ointment. Hopefully, you can purchase marijuana products. I didn’t take any marijuana … skeptical of efficacy. It was first made for a little girl (Charlotte) for her seizures. Works well. I am in Edmonds WA. Best to you
g
I have an acupuncturist, it really helps me
Everyone is different
I had coiling. 16 mm aneurysm, it was risky surgery, It was not ruptured aneurysm but I have brain stem compression after surgery
Now I could walk 2248 steps with short short from 160 steps . I am still healing
Erny
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Hi,
The sme happened to me. I’ve had a chronic headache since 2006, after my 1st aneurysm clipping.
I tried acupuncture, it was just 1 of the things I tried to help with the pain. I’ll list everything I tried…hopefully one of these might help your son.
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Oopps, I hit the reply button prematurely!!
I’m having a nad headache now so this will probably come across as a rambling email…sorry…
I tried: every neuropathy drug out there, acupuncture, cranio sacral therapy, bio-feedback, a nerve block, radiofrequency ablation, had surgery to remove a loose screw from one of the flap plates, a hysterectomy, saw a neuropsychologist and I even saw a psychic!!
I’m sure there are more things I tried and I just don’t remember now…none of these helped.
I’m seeing a pain neurologist at Duke now (since 2009) in the Neurological Disorders clinic. I have chronic headaches that are present everyday. The only thing that changes is the intensity of the headache. And, my head only hurts at the surgical site. I’m now taking Emgality. My neurologist prescribed this on his regular migraine patients for about a year before he prescribed it for me. He wanted to see how it worked for them 1st since I’m not a normal migraine patient. I have a #3—#5 headache everyday. That’s what I call my good day headache. When they are a #9–#10+ headache…not much I can do except sleep and hope it goes away. I’m on a maintenance extended release narcotic and I have an instant acting narcotic for break through pain. I have #3–#5 pain all the time…at the surgical site. The skull flap area is in the middle of where the pain is.
I hope your son gets relief soon. I’ve had this pain since 2006. I also had a 2nd aneurysm and had to have it clipped in 2017. The pain remained.
Sleep is really good for recovery…and I don’t feel the pain when I sleep. My neurologist is wonderful and he is always on the look out for anything that might help me.
The cranio sacral therapist, the acupuncturist and the psychic all said the same thing: “there is a blockage or an area where there is no movement…and until I find a way to get rid of that…I’m going to have the pain.” I’m still looking. And, for every new thing I tried…I got my hopes up. I’d be disappointed eventually. I don’t get my hopes up anymore. I had to retire at 49 years old. I thought I’d be working into my 70’s.
The cranio sacral therapist told me that the skull moves or it isn’t really stationary. There’s a rhythm to how it moves and my skull doesn’t move that way any longer.
My headaches are worse if I’ve over extended myself. If I’ve done too much on a good day!! Too much influx of auditory or visual stimulation will cause my head to hurt worse. When I have to travel…I know that I’ll have a few days of recouperating when I get back home. I can’t go to a movie theater. Too much noise and visual stimulation. I only go to see my most favorite musicians in concert.
I had to get rid of the thought that I could still do everything I could do before the brain surgery. That took awhile to sink in…hence the pity parties. Fatigue is a trigger also. I was diagnosed with Sarcoidosis in 2010 and fatigue is one of it’s effects. Pain also causes fatigue. I’m on an antidepressant because of the pain…pain causes depression. And, I’d never been depressed ever…and I still take the antidepressant because of the pain.
I think I’ve rambled enough now. I hope some of this makes sense.
Good luck and know that your son is a different person than me and he might have success where I didn’t. That’s my hope anyway. A neuropsychologist really helped me understand what was happening to my brain and how that impacted my new normal.
Good luck and let us know how your son is doing. I’ll keep him in my thoughts and I hope this is temporary for him.
Sincerely Mary
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