I am 69 I have had headaches for over 40 years, some so bad I’d pass out along with some other issues. I have seen several experts and no one could find anything wrong. People acted like I was faking or a hypochondriac over the headaches and other issues that were going on. Last November I was having back issues after some x-rays they decided to do a full spinal MRI, afterwords the doctor called and sent me to a neurologist, I was told I had an Arnolds Chiari Malformation and it was blocking the flow of spinal fluid in certain situations and he wondered why no one had caught this as I had a full brain MRI 20 years ago! Surgery was recommended and I hesitantly went through with it on March 16, 2021. I am in recovery mode now but a lot of pain and emotional issues, doctor says this should fade in time. My wife is not happy with what is going on and still can’t figure out why I am still having issues and will be off work another month. I am depressed and confused wondering if the surgery had been a good idea!
My name is Merl, I’m a member of the modsupport team here on Ben’s Friends. I too am a neuro patient for a situation a little different to your own but with a similar story/outcome. Those lines ‘…no one could find anything wrong…’ and ‘…I was faking or a hypochondriac…’ are VERY familiar. I was even locked up in a psych ward ‘cos he must be crazy to be having pain like that. We can’t find anything…’ It took 20+yrs for them to actually investigate and then they came out with the line ‘Ohh look what we found…’ as if it was all something new, I’d been telling them.
I have a benign tumour sitting above the aqueduct, blocking the fluid from above, so the fluid couldn’t get out of my skull. It was decided to operate.
The theory was 'We could leave it BUT eventually the pressure would build and build and your symptoms increase and increase. If left long enough you will go into a coma, left any longer than that and you’ll die OR we can operate" Hmmmm not much of a choice really.
My idea of it all was go to hospital, chop, chop, they operate and, just like a broken bone, 6-8weeks later and all is healed. Ohhhh how VERY wrong I was. 6-8weeks later and the bone and scalp had healed, but the headaches, OMG, I don’t call them headaches (Everybody gets headaches ie a niggle in the temple) I get bolts of agony sent from the gates of hell, just nauseating agony, I’d never felt pain like it. The word ‘Headaches’ just doesn’t explain ‘This’. Nobody knows your pain but you, others may say they know, they don’t. The neuro’s all said it will pass… …only it didn’t.
For me, the outcome of the surgery did not have the desired outcome and I’ve required a few follow up surgeries to manage it all and I now have a VP shunt. My first surgery was back in '96 and I recovered ‘OK’ not great but OK, with medications and rest I could manage. My last surgeries were in 2013 and at first they said ‘3months to ‘fully’ recover’, then it was ‘another month’ then ‘another month’. I trialled all of their suggested treatments/therapies/medications but very little helped and what did help wiped me out so badly I didn’t know which day of the week it was. After 18months they decided to declare me as TPD (Totally and Permanently Disabled) which was/is very hard to accept.
Why am I telling you all of this? Because I’ve been through the ‘minimal surgical side effects’ and the ‘OMG surgical side effects’ and neither are nice. I can assure you, this is not unusual. This recovery thing is a slowly, slowly… No, I mean S.L.O.W.L.Y., S.L.O.W.L.Y. process. Do Not be pushing your recovery, I tried to do that and ended up back in hospital having further neurosurgery. DON"T DO IT. Your recovery takes as long as it takes. Push yourself too much and you’ll end up going backwards.
As I often say 'Listen to your body, it will tell you and when it says ‘stop’. You STOP.
I’ve often gone over that line of ‘Was it worth having the operation?’ but when I consider the options I was given of ‘Surgery or Death’ I’m still pleased to be here. So yea, it was worth it.
Merl from the Modsupport Team
I thank you for your advice, my situation is not as bad as yours I faced continuing headaches, back pain, emotional issues, and loss of feeling in my limbs. the slow loss of feeling is what made up my mind to go for the surgery. It’s now been a month and the headaches have changed to what I call explosions when I stress to do something, emotional bursts, and pain from the surgery. The good news the back is far better and the feeling in the limbs is improving. I hate not being more active and being off another month is frustrating and my family does not understand that I’m not happy thus far either, the guilt from family is not any help with the depression! I know now thanks to you it will be a slow process, just wish friends and family understood!
“…my situation is not as bad as yours…”
I am yet to hear of two neuro journeys that are the same, even in my own situation of multiple neurosurgeries, none of them have been the same. So trying to compare is a waste of time and energy. Some people can come through it all relatively well but for others it can be one hell of a rollercoaster. For many years I worked with people with disabilities and I’ve seen the good, the bad and the ugly of it all. Sure, for me, things aren’t great, but I also know they could be a hell of a lot worse and they aren’t, for that I have to be thankful.
Working in the disability field for 20years I thought I knew all about it, but what I knew was the theory. The realities of it all Ohh WOW. No study, no book knowledge can ever give you the cold hard realities of it all, only a lived experience can give you that.
Trying to get others to comprehend it all can be near on impossible, and that’s both the physical and emotional symptoms (Don’t discredit the emotional of it all because its real, VERY real). Let’s face it, (Thankfully) not everybody goes through this or anything like it and to be honest unless you’ve been here the realities of it all are can be overwhelming. We know this because we’ve been there too. Even many years later I’m still having ups and downs with symptoms. I’ve often explained it like this:
"Some days I can leap a tall building in a single bound (OK, so, a bit of an exaggeration) but other days I'm lucky to be able to crawl out of bed. I just never know what today will bring"
Others have a problem in understanding it all, well, I can assure you, it sure as hell ain’t no simple ‘walk in the park’ for us either. We know this because we’ve lived it too, so come talk to us.
Merl from the Modsupport Team
Yesterday was a bad day all-day headache, neck pain, and an emotional rollercoaster. Today is better, almost normal. I am wondering if my age is a factor in my recovery, I am 69 and still work full time or will when I can return. I dealt with my symptoms for 40 years am trying to be patient with my recovery!
Hi Steve! I am sorry you are having so much post surgery pain and upset. But, this is to be expected!!! You just had a very major operation at the base of your brain a month ago. Not only do you have healing from the wound and surgical site that needs to happen, but your body is recovering from the effects of the anesthesia which are harder on older people. You and your family are being way too hard on you!!! I went through this several years ago in my 50’s and also had considerable numbness before surgery. Recovery was hard but that will get better!! The great news is that the numbness is reducing and that means the surgery was successful in helping your damaged spinal cord. Damage to spinal cord nerves can take a long time to heal and repair themselves so you need to be patient. I had steady improvement as long as far out as two years post surgery. My surgery was very successful, I have minimal symptoms, no head pain, very little numbness, and my energy levels and overall health is good. I am so grateful I went through with it because the spinal cord damage, if untreated, would have been devastating. I had to sleep in a recliner for a couple weeks at first because the list surgical pain was so hard. However, each day was a little better. Get outside and sit or walk a couple of times every day. The light is really good for your brain and mood. Eat a good, healthy diet to help your body heal. The fact that you are having good days is a really good sign! Tell your wife this is very NORMAL recovery and very positive! Don’t go back to work until you are up to it. You will only set yourself back and feel discouraged. Hang in there! I had a significant Chiari and spinal cord blockage and no one would ever know today if I didn’t tell them. I live a very active life again.
Be patient…it will get better!
My Way of fighting Depression
Today I was a bit down as I saw my regular MD and got a bunch more bad news, seems my back really is a mess and he told me I had a very serious surgery that recovery would be slow! He said for my age my recovery to date was pretty amazing. Anyway, I was down so I pulled out my music, and spent a couple of hours listening to Mozart for some reason it always cheers me up! Doing much better now!
Hi Steve, I’m 61 and had my surgery 7 years ago. You’re in the beginning of your recovery. You are and will continue to improve. I had a 95% blockage of CSF. The recovery process definitely takes time. It took me 3 months to feel better. You’ve been through a lot. You need to not be hard on yourself. Rest and take your time getting back to work.
Question when will the neck pain and muscle cramps go away! I am not getting much sleep and I don’t like the side effects of the pain pills! I am dealing with 3 to 4 hours of sleep a night and I need to get back to work as my sick time and sick pay will end on May 24th! I drive over 300 miles a day as a courier and I need to be alert! Should I ask the doctor for a muscle relaxant to hopefully get some sleep!
I’d certainly recommend speaking to your Dr about muscle relaxants, if he’s willing. Some Dr’s won’t, some see pain as the body’s warning system, which it is, but sometimes by masking the pain we miss the warning and push ourselves too far.
Post neurosurgery I was told it was mandatory for the hospital to inform vehicle registration office of my surgery and my license was to be cancelled. Now, I’m in Australia so the laws are likely to be different, but driving can be a stressful role on the eyes, the neck and the brain in general. 300miles a day? that’s a fair amount to be driving, especially if you’re unwell.
Remember, you MUST look after YOU. Push it now and you could run the risk of increased symptoms.
Merl from the Modsupport Team
He was surprised that I won.t take the Percocet after I left the hospital, but I don’t like the way they make me feel and how it affects my digestive system. I’ve dealt with pain for a long time it was one reason for the surgery. It’s just the muscle cramps that wake me several times a night and with my bladder issues the two get me up 3 to 7 times a night. If I get enough sleep I’m great! I have driven over 10 hours at a time even with the headaches, but lack of sleep messes that up. I’m going to contact his office Monday about the muscle relaxants. I continue to do neck exercises to try to relax and strengthen my neck hoping that will help.
Percocet has an opiate in it and yea, it does mess with my insides too. I have to carefully regulate it’s use. Neck issues are not unusual, but let’s face it you’ve had major surgery. We often store ALL of our body’s stresses in our muscles and our neck muscles are a primary store. But driving is NOT going to help, not at all.
I say this because in my former role driving was a big part of my day, most of it city driving and I found I could drive, no problem. But at night I was in agony, I tried heated wheat bags, massage, hydrotherapy, a TENS machine but none of it really helped. All I was doing was masking the pain. I had to give my body time to heal. Now, I’m a ‘typical male’ ie ‘I can beat this…’ I’m stronger than that, I can do a bit more, and a bit more…’ I told myself I was building stamina, when in fact I was driving myself into the ground. I did too much too soon and found myself back in hospital requiring further neurosurgery and that REALLY screwed me over.
Those neck muscles and that bladder issue could well be your body giving you a signal. If you ignore those signs, those signals your body will increase those signals to the point it’ll knock you off your feet. Ignore it further and you could end up where I am. I’ve been told I’ll never work again.
Don’t do it, listen to your own body. It will tell you when enough is enough and it sounds to me like it already is giving you the message. It might be time to listen.
Merl from the Modsupport Team
Hi Steve, I’m a bit younger than you (35-yrs-old) but I can relate. When I was in my teens my mother pushed that something more was wrong than “chronic sinusitis” but to no avail. Fast forward to 33 when I break my nose and they they check for a concussion and ask me “do you by chance ever get headaches” and I respond “uh yah…I’ve been mentioning it for almost 10yrs to my doctors”. From what I’ve read and have been told Chiari Malformations are not “progressive” yet my own neurologist said “your fine b/c you have no balance or coordination issues this issue probably progressed and your body acclimated to it”. I had two CAT scans, one as a baby and one in my late teens and neither showed anything alarming so clearly there is a progressive nature of some sort. I have never had a concussion or any TBI. My neurologist said he doesn’t recommend surgery and suggested me 500mL ibuprofen for my severe back pain/headaches but similar to you I really don’t want to take pain meds if I don’t have to and said there was no need for that.
I have to say getting 8+ hours of sleep has been a huge help but it was a real upwards battle and even now I still struggle often. I don’t take any stimulants after 5pm for good measure. I won’t have a glass of wine after 8pm. I force myself to lie in bed by 9 or 9:30 even when I’m not tired. The only time I take pain killers are if I can’t fall asleep by midnight or start have back pain (my back pain is worse laying down then it is being up and active). It has taken about a year for me to get into this cycle and I am seeing results but I’ve also accepted that I’ll never be “well” in the way someone else would.
Confirmation and acceptance of my situation has been the biggest relief. I’m just glad to know there is something wrong with me and I’ve accepted that I’ll never be “cured”. My thoughts are with you. Hang in there!
Hi AndyRoo. I highly recommend that you get a 2nd opinion from a neurosurgeon that specializes in Chiari. Unfortunately, many neurologists and some neurosurgeons are not educated on Chiari. The goal of surgery is to prevent symptoms from getting worse, and the hope is to improve symptoms. The blocked csf flow and the pressure of your tonsils on your spinal canal can do more damage over time. Even if you choose not to do surgery, it would be a good idea to be monitored by a specialist.
Update, I’ve been back to work almost a month now and have again started to have issues. Left side headaches, neck pain, and lightheadedness. I work through them but it is annoying, if I say anything to my family I get you had to have that surgery we told you it would work. So I am working through it and keeping quiet. See the surgeon for a follow-up next week, but I’m keeping quiet can’t afford any more time off or the hassles at home. Overall things are somewhat better and I will not try any more surgeries! The good part the headaches are easier to ignore, the numbness is gone as are the upper backaches. I’ll be 70 in January so I’m just going to call it old age aches!
It has now been six months since the surgery and I am having massive neck issues! The doctor has sent me to therapy for these issues, my neck especially the left side is always rock hard and after a day at work or a busy day, it causes a severe pinpoint headache in the middle of the back of my head! My doctor is perplexed by this issue thus the therapy! I have considered asking to have my hours cut or only 4 days a week of work! It is bringing on deep depression I’m 69 and I’m so tired of the pain of the headaches of over 40 years and now the neck and head pain. Just want to feel normal with a minimum of pain!
Unfortunately, chiari and neck issues tend to go hand in hand. As with most neurosurgery, if the scans come back OK, then it’s all OK, but the reality can be far, FAR, from anything like OK. All of our neural networks travel to the rest of the body via the neck/spine, little changes can have some HUGE flow on effects, that I’m sorry to say, many medicos are unsure if or how to treat.
It was only last week I had a medical appointment with very little in the way of answers, but ‘Ohh, we could try psych meds…or it might be nerve pain…or it might be…’ In other words ‘We have no clue’. I have tried all sorts of meds and trialled all sorts of therapies, but none of them have been my ‘key’. WE ALL WANT NORMAL!!! But the reality is that my ‘normal’ has up and vanished. I now have to manage this ‘New Normal’ and I HATE it, this was never in my plan, but the reality is I have no choice.
Merl from the Modsupport Team
Thanks, it’s just so frustrating!
Wednesday I fell again for no particular reason, it was my fifth fall since surgery and I got hurt worse this time, with several serious bruises and a lump, bruising, and swelling of my left leg! I feel I am losing my sense of balance, I get lightheaded sometimes walking! I told my therapist as he saw the injuries during my session, questioned them, and wondered if I had gone to the ER, I told him no just iced them and took OTC’s for pain. He said on my Saturday visit he would test my balance and if it’s bad he’d write the doctor about it! I see the doctor in a month after therapy which ends next week. Is this a normal side effect?
Frustrating? Ohh Yea, BIGTIME
‘Normal’, that’s very subjective. It could be ‘normal’ for you. Some people talk of a ‘new normal’ because all of a ‘normal’s’ seem to have change and we need to each make our own adjustments to manage our own ‘New Normal’.
I too have had a few falls. With the first couple my wife hit the PANIC button, calling an ambulance. I was shot off to hospital, had scans, only to be sent home, but, by the same accord, I’ve had scans and been told ‘You’re being admitted’ on a couple of occasions too.
There can be a few reasons for balance issues, some of minimal concern like ear issues, which can throw our balance out. Then there can also be some reasons which can be a major concern and unfortunately, you and I don’t know about until symptoms progress to the point of OMG.
For me, I had all sorts of pseudo diagnosis ie it could be ‘X’, but then it could be ‘Y’ but no direct answers. My recommendation: If a dr suggests a treatment, do it. Try them all, use it as a process of elimination. Eliminate each one and keep it all well documented. Who you saw, when you saw them and for which symptom you saw them for. You maybe fortunate enough to find ‘Your key’. By having it all documented it slows down the repetition of scans and test related to individual dr’s. It can also show that you are being proactive in your own care.
Hope it helps
Merl from the Modsupport Team
I am seeing my doctor again as I have a new problem that is growing progressively worse. Since my surgery back in March, I’ve had several issues and this is the newest. About two months ago I started hearing and feeling a click in my upper neck where the surgery was, now it’s there and I can feel something move when I move my head and it is starting to hurt. I am wondering what it is, the doctor is having more x-rays taken and seeing me next month! Could this be a serious issue or am I overthinking this?