I am coming up on 3 months post bilateral styloidectomy. The good news is that my IIH symptoms are gone. No more head pressure, brain fog, visual disturbances and I am back to a functional life. I could not be happier with the results.
However, I am still dealing some mild, albeit annoying symptoms that I am quite confused by.
These only started once my IIH started so they are related in some way, but I honestly do not know how.
They are mainly what feel like skin issues. My face and scalp get this tingling, crawling, pinching and sometimes burning sensation. It can happen in the front of my scalp, forehead and eyebrows, back of head or side of face and ears. Sometimes all at once, sometimes just in a few spots. A good way to see what it feels like is to scratch your face and that after feeling that lasts for a few seconds in the spot you scratched is close to it.
I did get a rx of Rosacea but I am not convinced that it’s what’s causing these symptoms even in the back of the my head.
I tried looking for people with similar symptoms that have vES but have not had luck. Again, these only started once my vES did.
My options are:
It’s IIH / pressure related but I do not understand how and I surely hope it is not.
It’s nerve related (I am on 10mg amitriptyline for about a month now, no major changes, maybe I need a bigger dose or different medication)
It’s some skin auto immune thing that was triggered by my vES and now I have it as a separate issue that is independent of my vES recovery.
I am honestly at a loss as to what can be causing this and would love some ideas and theories before going down the path of new Dr appointments.
Whenever I see the word tingling I instantly think nerves and not necessarily nerve damage or even localized origin.
Have you had a brain MRI that has good imaging of your brain stem and nerves? It’s possible one of your cranial nerves are being compressed by a blood vessel sending wonky signals to your brain by way of your face/scalp.
The other possible scenario is a virus that lays dormat and only comes out to play when the conditions are right. Think Herpes and especially HSV-2. These types of viruses can attach and attack nerves sending phantom signals to your brain. Many diognostics have a difficult time confirming these viruses because most of the orders places by providers are blood pathology samples and not saliva. This can also cause tissue flare ups like you’re mentioning.
Don’t take a random guys advice off the internet and make it stone. But, I would recommend asking for some diagnostics to rule things out!
I’m sorry for those annoying symptoms you are still experiencing.
Are you taking blood thinners?
When i was taking blood thinners in higher doses I also had skin irritations from the Xarelto, I’d say. It is known that blood thinners can cause such side effects especially when taken long term.
If so it would be maybe a good idea to ask your doctor to try a different medication.
Best wishes and quick recovery.
These all began long before I was on any blood thinners so I do not believe they are related in any way.
Did you have an MRI with contrast in the past, long or short before it stated?
I had one taken shortly after my symptoms began. I am not familiar enough with head / brain MRI to know what to look for.
Some people report similar sensations after being exposed to MRI contrast (gadolinium)
the thought has crossed my mind, but again, these all began as my first symptoms before the head pressure got bad and even before my first MRI with contrast.
I’m sorry this has become an ongoing problem. Very frustrating! It does sound like trigeminal/facial nerve stuff (face, forehead, eyebrows) plus the occipital nerve & some cervical nerves can affect the back of the scalp - if the tingling comes from the cervical nerves, there could be an ES connection, but not likely anything from your IJV compression (so glad those symptoms are gone!!).
The dose of amitriptyline you’re taking is VERY low which is a great place to start, however, since it’s ineffective, I’d ask the doctor to up your dose to the next level (25 mg?) to see if 1) you can tolerate it w/o bad side effects & 2) given a few weeks, if it helps control those nerve symptoms.
I also like @Loumango’s suggestions (good job thinking out of the box!). Nerve symptoms can go on for months after ES surgery, but if there’s a cause beyond that of recovery from surgery/previous injury, then it’s good to leave no stone unturned in trying to figure out the source of the problem.
Hi, I do get abnormal scalp sensation, including needing to itch my head. I think latter is a neuropathic itch as medics call it. Also if my head gets abnormal fluids trapped scalp can feel abnormal (numb, hot, tight, tender etc). Latter symptoms will reduce as I get fluid trapped reduced. I am hoping itch (&other issues) will settle down in time once healed. I don’t use nerve drugs as they don’t suit me. I do use photobiomodulation to help nerve pain. Hope you find helpful solutions. D
Ps. Zoster virus (shingles) can reactivate as PCN to cause skin itch & nerve pain. Dermatologist told me about this. I got Shingrix vaccine to reduce PCN risks as aging makes risks higher. D
So pleased that your IH symptoms have improved, that’s great news! I agree with @Isaiah_40_31 that it could be a nerve issue; I get tingling, boring, sort of like a freezer burn sensation, (plus tooth ache) on all 3 Trigeminal nerve branches, mine started at the same time as the ES symptoms started. It’s improved since surgery, but not gone completely. I take Amitriptyline, 20mg which helps. 10mg is the lowest dose to start, so it might be worth upping yours a bit as the next step to try before you look into anything else?
Thank you for the insight. I do believe that nerves will be the most likely cause and route any Dr. will take with me at this point. I am not sure if imaging is even necessary because my symptoms aren’t severe enough to warrant any intervention other than medications even if something is found. As long as it’s not IJVS related I think I am more than happy to experiment with different drugs until I find the right match. I know nerve drugs are a hit and miss for every person and it takes time.
As a side note, a few months after my symptoms began I got shingles. Not sure if it was a reaction to my general issues or something else. Could just be a coincidence as well.
I do know that my vES did trigger rosacea and I even have ocular rosacea now that I need to taka care of, so there’s no question that something like vES can trigger other things.
I have had extensive blood work done and the only abnormal thing was very slightly elevated calcium levels, but my PCP had me to more testing to ensure nothing else was going on with that and it all cam back clean.
I guess my biggest query was to see if anyone else can relate to these sensations and what / if helped and what the cause was.
Any physical trauma (ES is a fine example) can lower our immunity because of the stress of dealing w/ the “bigger” problem when normally our bodies would fight off the lesser “evils”. Surgery itself negatively affects immunity at least for awhile.
You could try Gabapentin - it tends to be used for nerve pain.
Did your blood tests include lymphocytes and if so did the tests show a low level? Not a cause for panic but a significant test that immune system is dealing with something. D
On Shingles topic you mention- sounds like your pain is not severe but zoster virus after shingles can reactivate after lying dormant & PCN then triggers nerve pain. Happily sounds like your pain level ok so prob not PCN. Amongst my many false diagnosis I was told I had shingles by GP/Rheumatologist. Dermatologist said curtaneous nerve pain (in simple terms scratching your skin due to pain). I think it may have been that or maybe a neuropathic itch as it is called. To eliminate scratching as cause cut nails short & wore cotton gloves. Was not a 100% cure. Sharing my journey on false shingles trip in case helps you. D
Yikes, VDM. Thanks for the link on the contrast. I just had a neurogram yesterday and they did it with and w/o contrast. This was an out of state doctors order and I argued excessively about the contrast as the order indicated without contrast. I generally have not gotten alot of scans with contrast and dont worry about too much but I am going through alot of diagnostics right now and will be having more contrast in the next month or so. Good to know about the pros and cons and chelation however Im thinking chelation is out of pocket expense.
As to the original question about face and scalp tingling. Suspect nerve related. Being only 3 months post op, your nerves are still healing.I still struggle with the same odd nerve symptoms and Im almost 2 years out post op. I do have TMJ and neck issues though. I did have some acupuncture with a tens style unit attached to my neck area around 6-8 weeks post op that seemed to help turn the nerves on in the neck and I thought helpful.
I recently had some testing for vertigo and sudden mild hearing loss on right side (triggered by tooth extraction). They also found I had a loss of right acoustic reflexes in ear. They are not sure why but suggested possible facial nerve involvement. I am wondering if it is related to the ES surgery. I have recently developed a band of numbness under my chin almost ear to ear now. I am wondering now if that is related to ES surgery however neurosurgeon said those nerves under there are related to C2-C3. There are always risks to doing ES surgery and nerve damage/irritation is one of them.
Interesting thought about virus coming out to cause these nerve symptoms. I had an emergency tooth extraction (lower molar) that caused me severe pain in jaw and had about 3 blisters come out below my lips about 4 days out. There was talk about zoster as well as HPV virus. The blisters were not zoster and I have never had HPV - they went away pretty quickly. I did learn though that virus’s can lie dormant expecially in the facial nerves and can rear their ugly heads after surgery or trauma. The tooth extraction was traumatic. I still have odd facial nerve tingling from time to time. Like you, annoying symptoms.
Same. I never thought of it as skin issues, more nerve. But close to the surface. My surgery was 12 weeks ago. The cold eye-to-ear/weird scalp/scratch-andI-feel-it-for-several-minutes was gone before surgery, back since. I’m hoping eventually it will go away again. Dr. Hepworth seems to think it’s nerve irritation from the actual procedure.
Yes, that’s a perfect description. It kinda feels like surface/skin stuff but my skin doesn’t really show anything. Sometimes it’s a burning, sometimes pinching or just very tender. I’m seeing my PCP next week to talk about upping my amitriptyline dose.