I'm back - surgery with Dr Axon

[Dizzylady]

Hi Dontgiveup,

I really like your handle by the way … that was my mantra through this extremely challenging journey.

Unfortunately, I do not have answers to your specific questions, but I just wanted to reach out because you mentioned positional chills. This is one symptom I also had and it came on around the same time as my other more commonly reported Eagle’s symptoms (I also had jugular vein compression symptoms). I have not found anyone else that has positional chills until your post. I’ve always suspected it must be related as I have no other known medical conditions but Eagles, some neck disc disease (moderate) and a tiny bit of low thyroid and am on medication to normalize that. (That being said I’ve not yet had imaging studies for neck instability - hoping that this won’t be needed, but realize that it certainly is possible to pop up with more than one thing especially with aging; also my microscope job does put me at risk for this condition is my understanding.)

I’ve just had my right styloid removed yesterday. It will be interesting to see which symptoms resolve. Right now things are swelling so it may take some time. On your list I’ve suffered from 1-10, 13, 15, 21, 22, 27 (chills), 29, 30. Plus I’ve had a few other symptoms that you didn’t mention - listed out on some of my other posts.

If you are interested, I will reach out again to let you know what symptoms the surgery improved after the swelling goes down, etc. Just let me know.

I hear you about the surgery. It was the scariest thing I’d ever done (I’m not a risk taker and never had surgery before). But after having gone through it yesterday and now doing pretty well with the recovery and with no apparent nerve injury, I feel that it most definitely was the right decision. At 48 years old I literally had such poor quality of life that I was willing to ‘put it all on the line’ so to speak for a shot at returning to normal. So far I’m optimistic and at least that bone on the right side is not obstructing my swallowing anymore. This is the first improvement I’ve noticed. Looking forward to reporting on other improvements in the coming days.

Good luck to you and yes, we must never give up!!

[Dontgiveup]

Hi Dizzylady,

Thank you! Yes, I’d love to hear how you get on following your surgery. It’s great to hear that you’re doing well and aren’t suffering so much after surgery. Sounds like it was the right decision. I’m sorry you’ve been going through these awful symptoms too. I really hope surgery relieves all of it. Will you need the other side taken out too? Did you get C1 shaved down or was removing the styloid enough to allow the jugular vein to open up?

And yes, it’s really been hard to find some specific symptoms in others and it makes you feel crazy sometimes when others can’t relate. My chills mostly happen when I’m laying down. So as soon as I’m horizontal, I start feeling more unwell. Though some symptoms get better from laying down. So I can’t win really. I have severe nausea, so eating and drinking are a constant struggle. Constant tinnitus makes me feel like I’m being tortured non stop too. I’m just scared I’m too far gone and I’ll never go back to normal. Ive yet to find someone with non stop fight or flight and full body restlessness/aches and pains. Makes me feel suffocated like I want to rip my skin off and run.
Yet I’m so fatigued and spaced out, a short walk across the room knocks me out.

I hope you’re resting up and have a good support system. Keep hydrated and get a lot of sleep if you can. Hopefully it’ll get you to heal faster. I hope your positional chills disappear for good too

[Jules]

I’m so sorry that you’re having such a long wait & are feeling grim, but like your screen name says, don’t give up, no matter how exhausted you feel…you will get there with Mr Axon, you know he’s the best in the UK & you’re in the system now. Please feel free to always vent on here, and if you need more support than we can give you know there’s organisations in the UK that can help, Samaritans, Campaign Against Living Miserably…
Praying that you get moved up the list quicker…sending you a hug

[KoolDude]

Hi Dontgiveup

I know it is easier said than done when people say do not give up particularly when the blood supply to the brain is somewhat impaired. I do suffer so many symptoms that at times, I thought I had neurodegenerative disease like AD, Parkisons, etc. I even thought I had deadly metabolic disease like MELAS since that cause hearing loss, cognitive decline and muscle issues but knowing that Jugular Compression can induce many symptoms and mimic other diseases, It gives me comfort knowing that it has remedy compared to the other awful diseases out there so while it is giving you a hard time, you need to focus how you can mitigate some of these symptoms while waiting for your tests/medical procedures. Focus on things that lower pressure in the head, Anxiety and Depression (Vagus toning), Muscle relaxing techniques and cognitive improvement activities.

I know other folks have spoken or posted articles on how to mitigate the symptoms and there may be an overlap to what I have found to be somewhat effective in this terrible disease. Without these little things, I would not be functioning by now. so let me list what I found to be effective.

1 - Aerobic Exercise
I know many of you do not have either energy or get dizzy if you try to exercise due to temporary increase of intercranial pressure, but getting any activity that raises your heart rate enough is beneficial for the brain to get oxygen rich blood and there are many studies showing how aerobic exercise increase neuroplasticity and induces calming effect. Since IJVS induces intercranial hypertension old, deoxygenated blood tend to stay in the brain for long time so exercise forces fresh oxygenated blood and forces the old blood out while boasting endorphins and sleep. While it can briefly increase intercranial pressure, after 2 hours of the exercise, you will feel clear headed and calmness.

2 - Sauna
The brain and cardiovascular benefit of Sauna is amazing particularly for those that can’t exercise, since Sauna heat increases heart rate, it mimics exercise and induces all the benefits that you get from exercising while sitting and sweating. It is also good for our condition since it acts as diuretics as it increasing sweating. Finish study found that 4 - 7 times a week Sauna use reduces risks of all dementia by 66% (Frequent sauna bathing may protect men against dementia, Finnish study suggests -- ScienceDaily). No other intervention known today has that can kind of protective effect. It also reduces anxiety and depression.
I get that after an hour of the Sauna

3 - MAGNESIUM L-THREONATE

This type of magnesium helped me sleep and improve mood and cognitive function. Developed by MIT, It is the only magnesium known to cross the brain blood barrier ( Enhancement of Learning and Memory by Elevating Brain Magnesium). Also improves anxiety and phobias (Effects of Elevation of Brain Magnesium on Fear Conditioning, Fear Extinction). look for the Magtein brand which was tested on animals and proven to be effective.

4 - Soft Collar Neck Brace.

This helps me with head pressure and facial numbness and muscle stiffness around the neck and face. I wear it all day at work since I sit in front of computers all day, this makes sure my neck stability and have seen huge improvements in terms of facial numbness, head pressure. Basically helps prevent to further collapse the Jugular Vein by keeping the neck straight. I use Velpeau Neck Brace which is compfortable to wear for long time.

[vdm]

Good points @KoolDude. I also found 1 and 4 very useful, just from my perspective and experience, I’d just advise re (1) - take care of your neck and choose cardio wisely, avoiding anything that puts too much stress on your neck. Because, if the neck is stiff, the facet joints and discs are already being squashed and worn out more quickly than they should be, which might lead to herniated discs/osteophytes/nerve-spinal cord compression. Cycling is probably a better choice than running, though indoor cycling/elliptical trainer might be even better. Re (4), it’s very important to alternate wearing the collar with gentle neck exercises to avoid muscle atrophy. Again, if neck muscles are stiff and especially in case of “military neck”, they are already not at optimal strength/length/flexibility, and exposure to gravity is essential to keep neck muscles engaged and alive.

[Jules]

Exercise & heat both made my head pressure way worse, not sure if I ever noticed any clear headedness or calmness later, can’t go back in time now to test that theory out! All worth a try though!

[KoolDude]

Hi Jules,

You are right and it does increase the head pressure since you are pumping blood to the brain and since the drainage system is impaired you get blood backing up in the brain. However, your brain is irrigated with oxygen rich blood and this counteracts the long term intracranial impact to the small blood vessels deep into the brain where the excess weight of the CFS + Old blood compress and deprive vital brain areas of oxygen rich blood. I have read it somewhere but can’t recall where.

[Dizzylady]

Hi Don’t give up,

No shaving of C1 - just a wait and see approach to find out if the vein will open up enough. My chills are also mostly when laying down flat on my back, but I have had them laying in a recliner at about a 45 degree incline too. My head is usually in the looking straight ahead neutral position when they happen. Right after surgery you cannot lay flat, so will be interesting to see if I can do that after the 10 or so day window and if any symptoms are better and if there are still chills.

Sometimes it is difficult to tell if some symptoms are coming from the left side, as the nausea and heart palpitations are many times induced by laying on my left side, which is about 4.8 cm long. The right which was just removed was 5.1 cm long and is the side with the throat /ear/neck pain and the loudest tinnitus. I have noticed some right side tinnitus post surgery when laying nearly upright on the wedge pillow, which is mild. I think this is due to the neck swelling, which is slightly increasing as it is day 3 post-op now. My tinnitus was usually worse with laying down flat. Laying down definitely made me feel much more unwell. I have found sleeping sitting nearly upright (which is hard to do at first but now I’m pretty used to it) can lead to a more deep / restful feeling sleep.

Coping with these horrible symptoms is unreal sometimes. Surviving each day sometimes feels like a miracle. I’ve typed a list of some coping strategies I’ve honed over the >6 months of waiting for surgery in a prior post here- don’t know if any of those things would help you too?

I really feel for you with the full body aches and pains. On top of everything else. I wish there was so much more I could do to help you Don’tgive up. I agree that your attitude of not giving up and remaining hopeful and not loosing sight of the main goal of obtaining help is probably the most important strategy right now. It feels like fighting a battle that nobody sees or understands except for the wonderful people on this site who have been through it

Hang in there and thank you for your positive thoughts and kind words!!!

[Isaiah_40_31]

What an amazing & positive post, DizzyLady! Thank you for being so encouraging!

I’m so glad you’re finding some relief from your surgery & that sleeping with your head elevated is helping so much. I found that I needed to sleep that way for about 6 weeks after my surgeries but many others on here have only needed to do so for a few days. You can experiment to see what works best. Sometimes decreasing the head elevation gradually is a good approach.

I hope your IJV opens of its own accord & no further intervention is needed. It can take some weeks for the re-opening to happen so, here again, patience is required. ES is certainly a good teacher of patience!!

Keep healing well & I look forward expectantly to great results from this surgery.

[Jules]

It makes sense!

[Dontgiveup]

Hi Jules,

Would you be able to describe all of your vascular symptoms in detail to me?

Eagles/vascular symptoms tend to overlap with cervical instability. I’m just trying to piece everything together. I don’t have the typical painful swallowing with eagles at all. I do feel strangled around my throat underneath my jaw - like my glands are super swollen and crushing my windpipe. I get a sensation of something there but I’m mostly struggling with the vascular symptoms.

I’ve tried to chase up the catheter venography test and nobody knows how long the waiting times are. Dr Axons receptionist told me she’d try to make it an urgent case but a lot of people are in the same boat. Just spent all day crying. I can’t live like this for much longer.

With your symptoms, did you have major fatigue and shortness of breath? Did you have a lot of head pressure? Brain fog, lethargy, depression, anxiety, spaced out…

Did surgery resolve all of your vascular symptoms?

Thank you

[Dontgiveup]

[Isaiah_40_31]

WOW, Dontgiveup! Your images look scary. Your IJV is really compressed. All the symptoms you described go along w/ IJV compression. Not everyone gets a sore throat or swallowing issues from ES & some have been dismissed as not having ES (in spite of visibly long styloids in imaging) because of lack of throat issues. It’s not a mandatory ES symptom.

Some of our members w/ IJV compression have gotten decent relief from some symptoms when they took a blood thinner. Perhaps seeing if you can get an Rx for one would be worthwhile. Plavix is what was Rxed in the US. Here’s a link to a long thread w/ a discussion about this: Dr. Hepworth and Vascular ES

I will start praying for you to get in for the imaging ASAP. Call frequently to check back in for cancellations & make sure you get on a cancellation list if one exists for the catheter veinography test. Be as proactive as possible. The squeaky wheel often gets the grease.

[Jules]

So sorry that you’re still having to wait for the testing, it’s just a nightmare with the NHS at the moment As Isaiah says, it’s a good idea to try & get on a cancellation list if they have one & if you can get there at short notice, although it’s a bit of a trek for you…
I didn’t have the common ES symptoms of pain swallowing or lump in my throat either. The vascular symptoms were worst for me- I had head and ear pressure, pulsatile tinnitus, headaches, constant off balance, drunk like feeling, dizziness, tiredness, brain fog…the worst were weird Intracranial Hypertension symptoms; it was horrible like my brain was being rolled up (one member described it as a sucking feeling), feeling like I was falling & feeling like I was shorter than I am- very strange & hard to describe! So I can definitely sympathise with you. I never had shortness of breath, that sounds like maybe you should get it checked out, if you can see a doctor? The vagus nerve can be irritated by styloids too- that can cause heart arrhythmias, anxiety, possibly breathlessness.
I hope that you can get help soon, thinking of you & sending you a hug

[Dontgiveup]

Hi Isaiah,

Thank you for your help and advice. I’ll definitely make a nuisance of myself. I’m not a person who ever cries out for help and now that I’m in a position where I have to constantly reach out, it’s been difficult to say the least.

I’ve been seeking the opinions from different doctors and I agree that my jugulars look significantly compressed, but one doctor said that he doesn’t think it’s compressed very much at all and advised me not to get surgery… so hard to navigate with all of these opinions.

I believe that any sort of compression is a bad thing though. I must be over the tipping point to be in such distress. Thinking about it, I’ve had some warning signs I believe. I always had to sit on the edge of my bed before getting up to allow the pressure to drain. When going out on walks I’d get to a certain point and end up with a pressure headache.

Dr Axon told me that I don’t need to be on blood thinners and I’m not at risk for deep vein thrombosis.
I’m taking fish oil, so hopefully that helps with thinning my blood out somewhat.

Thank you for praying for me. I think I need all the help I can get.

[Dontgiveup]

Thanks Jules,

I appreciate you sharing your symptoms. It’s one long hard journey through hell. How compressed were your jugulars? Did it take a while for them to open up post surgery?
Do you have complete resolution? Do you feel back to normal?

I’d be surprised if my vagus nerve wasn’t being compressed at this point. I believe it is.

I wish the wait wasn’t so long… talk about prolonging the suffering. It’s something no one should ever have to go through.

I’ll keep you updated. Thank you for your help and support. I really appreciate it.

[Jules]

I’m no doctor but I agree that no compression is good- I know other veins can take over to a point but if you’re getting symptoms then clearly it’s not good! For me, the left side was very compressed (didn’t ever get figures), the right not as bad.
I was very lucky & my vascular symptoms did ease quite a bit with the worst side done, but from hearing others’ post-op stories on here recently that does seem to.be unusual. They went I’d say 95% after the 2nd surgery- I get symptoms a bit if I’m stressed, or if it’s really hot (so don’t very often worry about that!). I noticed the head pressure etc back when we had an 8hr flight, but that doesn’t happen often either! I’ve never had the really horrible ones back though, I’ve been very blessed…

[Isaiah_40_31]

Clearly the doctor who daid your IJV(s) isn’t/aren’t very compressed must not have been looking at your images. I agree w/ you & Jules - any compression is a bad thing & especially w/ the symptoms you have.

Hoping you get that catheter veinogram soon!

[Dontgiveup]

Thanks Jules and Isaiah. I’m making a nuisance of myself and I’ve managed to speak to someone who was very understanding - which was a breath of fresh air to be honest - she’s put me down as urgent considering the severity of my symptoms and hopefully I should hear something sooner than later. It’s super hard to advocate for yourself when you feel like you’re dying everyday. Can eagles really make you this ill? I’m housebound and some days I’m bedridden.

I’ll update you when there’s some progress, if that’s ok?

Thanks for the support. It really means a lot.

[baldcaldwell]

Is a catheter veinogram the preferred method to measure compression? I had ultrasound on my neck where the jugular and carotid artery sheath diameter was measured in varying head positions. It was obvious based on these measurements where the compression was located.