11 days post op and still feeling crummy. Is there anyone else who had intracranial hypertension issues as part of their symptoms? Would love to hear recovery as I wonder if that is flaring up? Headaches are a bit worse than pre surgery and a lot of back of neck/suboccipital pain/pressure. Muscles from neck/shoulders/upper back all down to low back are sore.
My case is a bit complex and for anyone interested- I will try to briefly provide context.
1989- Full thoracic spinal fusion- severe scoliosis
2006- Muscle/joint pain/headaches/neck and low back pain, fatigue
2010- All the above plus progression to include IBS, brain fog, weird cardiac episodes
2013- Symptoms progressed more- felt significant cognitive dysfunction and had to quit job- told it was “fibromyalgia/chronic fatigue syndrome” offered pain meds
2014- Discovered weird viral markers (chronic acute IgM positive to cytomegalovirus/CMV and autoimmune positive for blood clotting disease called Antiphospholipid Syndrome (APS)- no known clots. Targeted both- no sig response.
2018- Discovered sleep disorder (UARS) the can mimic fibro/CFS- had nasal surgery- cognitive symptoms RESOLVED!!!
3/2019 (3 mo post op) symptoms recurred
4/2019- neck extension while brushing teeth caused severe pain/incapacitated- MRI showed stenosis/DJD/loss of neck curve most likely a result of prior fusion
6/2019- Neck PT set off HORRIBLE flare of cognitive symptoms- decided to research “neck/chronic fatigue” and found links to cervical stenosis:CFS, positional cord compression:CFS, craniocervical instability:CFS. Joined my first FB patient group.
7/2019- obtained UPRIGHT/sitting MRI- showed empty sella (indicator of high CSF pressure)- I noted possible CSF leak in sinuses which, given my recent post nasal surgical response- got me thinking whether there was a connection. Found a FB group for cranial CSF leak and found out about Dr Hepworth- sent the office the image showing what I thought could be a leak hoping they could screen it before I made an appt (had Kaiser at the time so it would be self pay)- they agreed it could be!
***Through my initial FB group for ME/CFS I learned about ehlers Danlos. Additional research into EDS led to issues like vascular anomalies, intracranial hypertension, Eagles, internal jug vein compression, cerebral sinus stenosis, etc.
10/2019- Initial consult with Hepworth- he confirmed my suspicions although ruled out Eagles as styloids were 2cm. CT venogram showed stenosis in brain vessels. Also consulted with EDS literate rheumatologist who confirmed EDS.
1/2020- Invasive angiogram of jugulars and brain normal. I was devastated.
2/2020- Self referred to spine surgeon just to establish care to monitor scoliosis- he noted I had extra ribs at C7- suspected thoracic outlet syndrome/TOS.
3/2020- Post angio follow up with Hepworth- felt that TOS and cervical ribs might be an issue- referred to a vascular surgeon who confirmed TOS and neck US confirmed internal jug vein stenosis and positional retrograde flow. COVID hit and everything on pause.
5/2020- Bored- I played around with my imaging and noted a hypoplastic left jug vein, and a compressed right jug vein. EVIDENCE!
***Of note I also looked into another EDS co-morbidity called tethered cord- which i have altho unsure of causing issues.
7/2020- Followed up with vascular for TOS test- he noticed my 3D render and pointed to my vein and said “that’s a problem”. CONFIRMATION- followed up with Hepworth for post neck US visit and suggested tag team surgery with vascular.
Hepworth noted in addition to the pinched jug vein, I had a lot of “collateral” compressive issues (waiting for full report) so in addition to removing my styloid (2cm- weak!!!) he basically stripped away all the fascia from my jugular vein from skull base to collarbone.
So- that’s me. I can tell you the psych damage done from 10+ years of doctor/family/friends dismissal has been the worst part of all of this. I’ve learned I cannot trust my reality, I cannot trust doctors, and now that I have some that believe me- they almost seem MORE suspicious BECAUSE they believe ME- the crazy, anxious, attention seeking, faker🤦🏽♀️
@Butterflyjkg since you asked🧡
Wow, you have had a long journey, so sorry to read of all you’ve been through!
Vascular symptoms can resolve fairly quickly after surgery, once the swelling’s gone down, but you do have a complicated medical history, so recovery is not going to be as smooth for you as other members…I had bilateral jugular compression & some IH symptoms- the worst symptoms went fairly quickly after the 1st surgery, the rest mostly resolved after the 2nd surgery- I don’t know if both sides are causing symptoms? You mention compression one side & a hypoplastic vein the other, so I think it may take longer for your veins to recover & especially with the EDS also. Stenting was mentioned by my consultant if the veins didn’t spring back, fortunately I didn’t need this, but that may be something which you’ll need in the future.
I’d suggest that you sleep semi-upright if you’re not already doing that? I guess you probably are with IH. And keep icing to reduce swelling if that’s possible. But it is a big surgery- many members find it can take a good couple of months before they feel ‘normal’ again! So don’t expect too much too early on, it’s very early days, & make sure you get plenty of rest.
I also take a diuretic to help keep Meniere’s symptoms at bay & struggle w/ the hydration issue because I’m very active & sweat a lot (long distance hiking, warm/hot summer days, etc.) and don’t feel thirsty. I’ve found that drinking herb tea w/ a little stevia or monk fruit powder added encourages me to keep sipping during the day. Plain water makes my stomach feel awful. When I hike I mix electrolyte replacement powder into my water which makes it taste better & also helps keep me hydrated. I’ve found that consuming 80-100 oz of fluid/day makes me feel great, yet I struggle to consume 60 oz. It’s always a work in progress.
Glad to know you’ve been able to cut back on your pain meds. That’s great news!
I also struggle to get enough water, even more so now that my neurologist put me on a diuretic. Something that helps me aside from keeping tea or juice on hand is squeezing a lemon or lime into my water. If I’m really dehydrated I’ll add some salt to rebalance my body, but I don’t recommend doing the salt often.
Crikey, if a car came with history like that would you buy it or scrap it?
Your story is a reminder that someone else is always going to be having it tougher than you.
And we are all fakers on here looking for attention , so you fit in well
I can’t offer any advice as I haven’t been through what you have , but I want you to know I read what you wrote- didn’t understand some of it lol but my heart goes out to you
You’re a tough cookie for sure
I appreciate the spirit of your message. Yes, my “vehicle” has a less than pristine history- but to suggest that one might want to just “scrap it” stung a tiny bit. I would be lying if I said I haven’t thought about scrapping it several times before.
But really- it’s not that my body is so irrevocably broken in tons of ways- it’s just taken a lot of general mechanics, me reading up on a bunch of car makes/models, networking with other car owners and more specialized mechanics, and figuring things out myself to finally isolate the issue- intracranial hypertension.
Just something to think about- truly not upset and I’m the queen of off the cuff remarks that don’t always hit their mark.
It was an emphasis on how much you have been through, and that you are still going well despite all that has happened to you
My humour is the only thing keeping me going at the moment, if I step back and consider the shit I’m going through, and dragging every one I love through it again, I would more than likely scrap myself too, and this is feeling I encounter on a daily basis.
There is a glimmer of hope left and I only seem to struggle on by reading accounts like yours ,so please excuse me if I offended you, if we all take this too seriously than we are fucked.I was the one who laughed at my own father’s funeral, I had a cross reference in my mind to a Dave Alllen sketch we watched as children,
as he was being cremated.
I spoke to a shrink about this as my gp had concerns about my attitude to suicide
If I hadn’t had laughed he said then I would have cried.
I think it’s best if I only come here to read and not comment or share my experience , it probably isn’t even the place I should visit at all, sometimes too much knowledge is a bad thing.
I was told not to snap the elongated bone sticking in the back of my mouth or I may get brain damage, well I snapped it, whether or not I have brain damage I will let you decide
Again my apologies for a warped sense of humor
I reckon you are one of the toughest cookies on here who has many fabulous miles left in her yet x
I really wouldn’t recommend anyone else tries to snap the styloid bone- it will just leave it loose to snag on nerves, or blood vessels & cause even more pain…
I do agree that a warped sense of humour will help you get through this though!
I wouldn’t say not to come on here or share! And I have a really dark, twisted sense of humor too. Like I said, it stung for just a tiny bit🧡. If I didn’t laugh, I’d cry too. Humor keeps me going. I promise I’m not offended.
See they don’t make them American orange cars like they used to.
Same goes for them English motorcycles.
If I lost my sense of humour at home, they may suspect something is wrong with me
Wow. what a journey. The only thing I can add with regards to EDS is that is not uncommon to have scar tissue compress nerves. People with EDS due to hypermobility can get microtears in ligaments and muscles. I have had several surgeries to decompress nerves that became very painful. I had one large mass of scar tissue from unknown cause that was compressing sciatic nerve - took 2 years to diagnose. I think it was from delivering a 9.5 baby. This was finally found by an MRI that reads nerves called a neurogram or can be called an MRI Neuography / magnetic resonance neurography (MRN). Alot of docs are not familiar with this tool and it takes special training to read them. Just another tool for your toolbox for diagnosing. Good luck. Dont EVER give up!
I LOVE your sense of humor!! Please keep posting!! Your humor is much needed!
I hope this message finds you feeling better now, almost 2 1/2 weeks post op! Thank you for sharing your long and heavy journey, I am so sorry for your suffering. But what i see clearly in your story is a beautiful testimony of tenacity and fortitude! Remember this does not define you, this is not who you are, but only a tiny little sliver of your infinite potential.
One breath at a time, give yourself time to heal