Hello- my name is Elke and I’ve been living with “chronic fatigue syndrome” for 14yrs.
I had a strange atraumatic neck injury last April where I extended my neck and was laid up for days. MRI showed stenosis/DJD/kyphotic neck. A bizarre neck PT session flared my CFS symptoms so acutely and so terribly it sent me back down the rabbit hole of “what is causing my symptoms”- the worst being chronic headache, neck pain, vertigo/disequilibrium, dysautonomia, groogy/foggy drunk hungover brain. Also have IBS, joint/muscle pain, low back pain.
Last July I obtained an upright MRI which showed signs of intrancranial hypertension and possible CSF leak. Last October I was diagnosed with ehlers Danlos, and I consulted with Dr Hepworth. CT venogram revealed transverse sinus stenosis- invasive angiogram ruled out sig. pressure gradients. Next I went to Dr Annest and had neck US which showed significant pressure gradients in right IJV- I rendered my CT images in 3D and it was noted that my jugular vein was compressed between C1 and my styloid- styloid not elongated.
Surgery was last Wednesday (styloid removed, ligament removed, deep neck explore and “skeletalization of the jug vein from skull base to hyoid) and I didn’t quite anticipate feeling so crummy still! Dr Hepworth thinks my transverse sinus in my brain might still be an issue, but my follow up with his isn’t for another 5 weeks.
I’ve been looking around on this incredible site but feeling so crappy I haven’t dug deep.
Is there any sort of road map to recovery? Do people feel immediate relief? Could it take months for high pressure to resolve?
As incredibly prepared as I was leading up to surgery I somehow biffed the post op recovery questions
Any insight much appreciated-
Current meds Tramadol/Tylenol 3x/day.
ES surgery is not a quick recovery. You’re in the period of greatest pain at this point - that’s the first 1-2 weeks post op. After that pain/symptoms usually begin to gradually subside. It can take up to a couple of months for your energy to return & up to a year + for nerves to recover. Vascular tissues rebound slowly over some months as well. Pain will continue intermittently while the nerves recover. Stick w/ your pain meds & ice your neck - 15 min on & 45 min off several times/day. Sleeping w/ your head elevated to 30º will also help. Bed, Bath & Beyond sells a wedge pillow for $25 that you can add other pillows to, to increase the angle. Many of our members have also added a U or V shaped pillow to the wedge to help stabilize head/neck position when sleeping. Sleeping on a slope takes some getting used to but will help reduce your post op neck/throat inflammation which helps reduce pain.
Usually people feel relief of some of their symptoms immediately post op but others linger. Healing can feel like 3 steps forward, 2 steps back at times. The key to a quicker recovery is to listen to your body & rest when it asks. DO NOT overdo on days when you feel better. Let your family/friends “cater to you” for the first 2 weeks at least then gradually begin increasing your activities. You’ll know when you’ve done too much on a given day & may need a few days to recover afterward.
If your remaining styloid is elongated, left over symptoms that don’t heal can be coming from there. In bilateral ES cases, people sometimes think their first surgery was unsuccessful when symptoms don’t totally go away, but that’s usually not true. The removal of the second styloid may be required for a more complete recovery.
Sounds like you’ve really been through the mill! As Isaiah says, it’s still early days, & you will probably still have swelling, which will not help with the jugular vein compression.
I had bilateral jugular vein compression, & did find the vascular/ IH symptoms improved after a few days, but I did have a drain in to help with swelling (surgeons have different techniques), & also not as complicated a medical history as you do. I don’t know a huge amount about EDS, but would guess that it could complicate healing, & if the connective tissues of the blood vessels are involved then maybe it could take longer than usual for the vein to ‘spring back’ after compression? My surgeon had mentioned that stenting of the jugular vein might be needed if the symptoms didn’t resolve, but luckily mine did. Plus I don’t know if you have bilateral compression? If so, the high pressure will take longer to resolve.
There’s quite a few members with current discussions seeing Dr Hepworth- he must be very busy! JustBreathe has lots of knowledge about IH, she may have some info for you.
But as Isaiah says, keeping semi-upright will definitely help if you’re not doing that already.
I hope that you see improvements soon
Thank you both! My left jugular vein is hypoplastic (like 1/2 normal size) and my styloid was only 2cm but was angled inward and my upper neck is shifted forward so my “good” vein was trapped! I asked the US tech if I could extend my neck back and forth during the US because I have serious issues when tilting my head back- and she actually noted retrograde flow in that vein!
Feeling so much better that just because my cog symptoms haven’t resolved yet doesn’t mean they won’t!
Id second what Isaiah but personally if your in that much pain, Id request oxycodone. Tramadol just doesnt do it for me.
I have the pillows and I ice/ ice ice. Not sure if your doc gave you RX for prednisone but mine did and I think it made all the difference in the world.Cuts the swelling down quite a bit.
I have Ehlers Danlos as well and alot of neck instability. So does my daughter who also has severe dysautonomia. She has bone crushing fatigue and in bed for about 80% of the time.
A friend of mine with EDS had surgery about 20 years ago for Chiari Malformation (common in EDS). She just had surgery a few months ago for the CFS leak. Hang in there! You will make it to the other side.
This is a little off topic, but how were you diagnosed with EDS? How long did it take to be diagnosed? I am new to this board and lurking, really. My dentist told me I have very large styloid bones in my xray. CT scan is at the end if the month. I an sure I will be an Eagle. I have a feeling. I had thyroid cancer so I am familiar with neck scars. I am hoping mine wont give me too much trouble. This is a very interesting board. I am asking about the EDS for my sickly, undiagnosed daughter.
Neck scar is not bad at all. Fits nicely into my wrinkles in my neck.
I had been told I was hypermobile since my early 30’s and have had lots of neck instability, TMJ,etc. Im now 64. ES starting kicking up in 2015.
When my daughter was diagnosed with POTS at age 13 she had worsening symptoms of fatigue to the point she could hardly get out of bed. Once I started researching POTS, I discovered EDS common in 50% of POTS kids. I then went to a geneticist for formal diagnosis of me and my 3 kids of EDS. How old is your daughter and what are her symptoms?
Hi. Thanks for the reply. My daughter has been battling something for well over ten years now. She has all sorts of bizarre symptoms. She definitely has HypoGammaGlobulinemia. She is missing a gene from her immune system. She isn’t “bad enough” for infusions though so she must just feel bad until ? My daughter is 4 foot 10 and weighs less then 100lbs. She has constant body aches. Blotchy skin especially after showers and water contact. Has strange hard bumps that appear on her skin, she also gets strange instant bruises like broken veins on her fingers and hands. She also gets white toes and fingers like Reynauds.
On and off fevers… .rashy red face but NO Lupus. She has chronic headaches, muscle aches and feels like her joints are “out of place” a lot. She constantly is wiggling around and stretching her limbs like some crazy gymnast. She goes to the chiropractor for an adjustment and hours later her body is out of place again. Her muscles don’t “hold”. She hobbles around like an old lady. She is 22 years old and has missed out on MANY moments in her life from feeling sick and lousy. Her hands are crooked, her gums are bad. She has fainted a few times and has serious anxiety. She says she feels so sick and no one cares. We have been to SO MANY doctors, as you can imagine. You know that story.
Everyone says she isn’t normal, but can’t be put in this category or that. My husband and other daughter think she is crazy. I don’t. She’s sick. Some days she can’t hold her phone or type on her computer. Despite this she just graduated college with honors and is going back to grad school for her Masters. She tries harder than any “normal” person. I can only imagine what she could do if she felt good. I feel so bad. It’s just around and around. We thought for sure she had EDS and this last doctor hasn’t even mentioned it. It’s just insane. I can barely afford the bills for these labs. She just had special labs that were sent to some special lab out west. Something like Exegen ?? They supposedly dig a little deeper into your compliments and diseases. That is our last hope… at least with this Rheumatologist.
This is the third Rheum. doctor we have seen. They all say her ANA levels are off but nothing stands out. She is miserable and so am I. It’s very hard to take. I know she has something wrong. She is really missing out on a lot in life. She is freezing cold and wears a jacket in 90 degrees. I accept her the way she is. It’s a lot to take. Some days I can hardly stand it and then I think how does SHE feel. I feel trapped because I can’t help her. As a mom you are supposed to make it all better. I can’t. I don’t know if anyone can.
The beginning of this year she was so sick she was using a walker at college. She had to miss some classed because she couldn’t get up the steps. Her teacher’s didn’t understand. She couldn’t carry her book bag. That went on for like two months. I was also very sick and my husband was as well. We think maybe we had Covid right before it was big news. I was the sickest I ever was in my life. Kate just didn’t bounce back from that. Some days she doesn’t wear a bra because she can’t stand the pressure of it on her body. Other times she wears it 24/7 for support. She’s like an 80 year old lady in a college kid’s body. I feel responsible because she came from my gene pool. HA. This is where we are at. I have never heard of POTS. I looked it up. I just feel like we are being ignored and no one really cares. It’s been so long. I want her to get an answer and say ok, this is what I have. Let’s make a plan and I can move on with life. I wonder if that will ever happen??? I am sorry you have been through so much with yourself and your kids. It really takes a lot out of you. Thanks.
So sorry to read what your daughter is going through- it sounds terrible, I can only imagine what your daughter, & you as a mum, are going through, She sounds amazing to have still got her degree! I will pray that you get some answers & treatment for her…
Wow. My daughter is about 95lbs and 5’3". Has the same blotchy skin and cold also. Very heat and cold sensitive. They dont have enough fat on them. My daughter can barely go to one college class…she has about a 4 hour max a day she can be up and about as her fatigue so bad. Its amazing your daughter has gotten to the masters stage. Good for her.
I know it makes me so sad my daughter has no life and has had no friends since probably age 12. I get what u mean about it coming from your gene pool. I feel the same.
I have the same neck instability and my adjustments dont hold for long either. That sure sounds like EDS or something along those lines. I too have had my ANA levels go off and then back to normal. They never really figured it out other than an “inflammatory” process.
Has your daughter been evaluated for dysautonomia and/or POTS? Often anxiety is labeled to a patient when in fact the person has a veiled tachycardia. A simple heart rate and BP sitting and then standing for 10 minutes could detect this.
Don’t give up. Keeping searching for the answers. You just need to go to the right doctors. You know in your heart something is wrong. Many docs don’t have a clue about EDS. If you go to the EDS website, you can find some good docs for further evaluation. Its all about finding the right docs.
I know my daughter is now being evaluated for a potential mast cell disorder and we have had some specialized testing as well. Never heard of Exegen? HypoGammaGlobulinemia? I wouldn"t let them say she isnt bad enough for an infusion. I suggest seeking out the best docs in the country…perhaps clinical trials who are experts in it. This is what I did when my daughter was diagnosed with POTS. I found a 10 day inpatient study at Vanderbilt. I also saw an expert in Boston. Flying from west coast to both. There are some programs to help pay for expenses but not easy to find. I gathered all the information from experts in the field and did alot of deep dive research. Keep looking for the answers.
WOW, Butterflykg! You have your work cut out for you between your ES diagnosis & your daughter’s health challenges. She does sound like a champ. Good for her for pushing through her physical handicaps to maintain a product life & give herself a purpose. No pity party going on there. That is beyond awesome! I will be praying for you/her to find the right doctors & to get a diagnosis(es) so some progress can be made to reduce/eliminate her symptoms.
