I was diagnosed in october 2015, but my doctor suspected ES several months before. I had a toncillesectomy because I had several throath infections (and in Sweden they take away your toncills if you have had more then 6 infections during a year..it's common) and after the surgery I got a cyst where the operation scar tissue was. I called my doctor who preformed the surgery and got a check up and CT scan done because he could see a bonepiece sticking out behind the cyst. They could see on the CT scan that my styloid process was 10 cm (!) on the right side and about 5 cm on the left side. I couldn't take a contrast scan because I'm allergic to the ink the put in to the blood so I don't know if my blood vessles and nerves are compressed or damaged, but it sure feels like it.
I asked the doctor what was causing my ES and he said it was not the toncillesectomy operation but it could be correlated with Cleft lip and palate that runs in my family.
I was born with a slightly abnormal palate where two small bone pieces were visible in my mouth, but the doctors told my parents that they souldn't worry and that it might dissapear as I grew older and it might not be caused by Clft lip and palate. I should point out that these doctors were not specialist in that area but nurses and a doctor at the baby center. The bone pieces dissapear and I didn't have any symptoms as far as I know. When I was about 9 years old I started to get neck and back pain due to tensions and had to go to a physiotherapist for a couple of years. I also later on got a splint because I was teeth grinding. In my teenage years I suffred from stiff sholders, sore throught, infected sinuses, migrains and headaches and occationally fainting for no reason. Have anyone else heard about Cleft Lip and Palate being suspected as a cause for ES?
From beeing around 20 y old until three years ago (I'm 27 now) I've been better until I had a skylift accident at work where I compressed five neck discs and a couple of months erlier I had a similar accident where my neck got hurt. After that I got the headaches, dizzyness, fainting, facial pains as I had when I was a teenager. I even had loss of feeling in two of my fingers and got pain from my neck down to my hands if working to much in a row. I has working as a technician wich includes heavy lifting and long hours. Do you think it started my ES again?
After the toncillesectomy I've suffred because the styloid process was hidden behind the toncill and was now "out in the free" and shewing and swallowing pain, drewling, pain along the neck become daily troubles from me. The cyst was created by my body to protect the bone sticking out in my mouth and is now feeling as a hard lump that causes pain when moving the tounge. Today I take painkillers everyday and even got morphine to take until I get my surgery done. I don't know what to do anymore, I can't sleep, the vessels/vains on my right side of my throat seem swollen, I can't work (luckely I left my job with 8 months pay so I can stay at home until january next year and still have my pay check), If I do anything I feel like I'm going to faint. What do you do for pain relief? Is there any tricks to do that doesn't include heavy medication? I've tried soft electric pulses and it does work but I can't afford to go to a physiotherapist all the time.
I'm thankful for all your answers and for the great support this web page gives me. In Sweden I'm one of few but here we are all in the same boat.
Ouch- I really feel for you. 10cms is huge for a styloid process! (The longest I found a record of when I did some research was 14cms, so you're up there!). I can't imagine that the tonsillectomy caused the ES, but has probably not helped- the extra scar tissues and inflammation following the op will probably have aggravated the tissues in that area. Plus the neck injury you had sounds pretty bad- compressing that many discs will have altered the angle etc. of all the vertebrae, which can then alter the angle of the styloid process from the skull base, meaning it could be compressing different structures. I noticed my ES worsened considerable when I had a slipped disc in my neck, I think that it probably caused increased inflammation. The lifting probably didn't help, and it would possibly make the inflammation even worse- your body might not have been able to heal properly from the injury while you were doing all that heavy lifting.
I've never heard of anyone with CLP and ES related to that, nor had it been mentioned as a cause, but genetic abnormalities are, and it is all a tight space around the neck, base of skull, throat and palate...
I had to sleep (and still do, as still have one side to go!) semi-upright, or I do get bad headaches- because my jugular vein is blocked the blood can't drain away from the brain as well. That's helped with pain too- I use a wedge pillow and a V-shaped pillow. I find heat helps me, but others have found ice better. You said you've tried the soft electric pulses- is that like a TENS machine? I know in the UK you can buy them yourself or sometimes the physio's can lend them out so perhaps you could look into that and try it yourself at home? Some people have found muscle relaxant medication like Baclofen helps. If the pain is sharp like an electric shock, or a constant aching or burning, it might be nerve pain, in which case either antidepressant medication like Amitriptyline or Lyrica, or anti-convulsants like Gabapentin or Tegretol can help in small doses, and they can help with sleep too.
It certainly sounds like you might have vascular ES- they can do a Doppler ultrasound where they check blood flow in the arteries if you want to get that checked out. An MRI might show nerve problems better than a CT. They can do MRA- magnetic resonance angiogram, which would show the blood vessels- they use a dye for that too, but don't know if it might be a different one to the one you're allergic to?
I really hope that you can find a surgeon to help you soon!
I definently think that my work injuries have worsened my situation. If I knew back then I had ES I would have been fare more careful and requested more workplace security.I think a "normal" person would have recovered from those injuries by now. I remember my physiotherapist saying after two years of rehabilitation that my case was not normal and she couldn't figure out what to do any more because the pain always came back and we ended up on square one again. The ES explains alot to me nowadays.
I will try sleeping semi-upright too and see if works better for me. I get electric shock-pain while laying down and accidently turn my head a little to much or feel like my head get stuffed/heavy/pressured. Have you ever had problems flying? When I fly it feels like my head is going to explode. =)
Today I got a letter from a clinic who will help me with pain-management until the operations and afterwards so I'm really glad about that. I also found out today that I got a appointment to see the surgeon on thursday to plan for my up coming surgery. YEY! It's exiting but scary at the same time! And Im definently asking them about doing a doppler ultrasound and a MRA/MRI thanks for the tips Jules!
I wrote about "soft electric pulses" but I ment TENS-machine and this clinic is offering rehabilitation with TENS. After you wrote about physiotherapists lening them out I googled and I saw that Aliexpress.com sell TENS machines very cheap if anyone like to try it out. I will actually buy one myself, I've ordered from this site before and it have worked out fine, just make shure that you pick a seller and product with good rating. http://www.aliexpress.com/wholesale?catId=0&initiative_id=SB_20...
I did a quick google about CLP and ES- there was a research article about a lady with Turners Syndrome- a chromosomal abnormality who had cleft palate, jaw/ teeth problems and elongated styloid processes too! It's called 'A unique case of Turner syndrome accompanying prolactinoma and unexpected elongated styloid process: Clinical and cone-beam computed tomographic features', and here's a link if you want to look : http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3691374/
It's interesting that the TENS helps you then, thanks for that tip; maybe other members might be able to try it out too. I know it helped me with labour, for a while at least!
I did have a constant feeling of ear pressure, like when you're flying- I haven't flown since I've had this, but can imagine it would be very painful. Some of your symptoms sound like you might have blocked veins causing a slight increase in the pressure inside the brain, and some of your other symptoms sound like it's arteries being compressed- when you turn your head is typical to feel faint as it move the SP and compresses arteries more. I'm really glad that you have an appt. this Thursday that's great news! If you're up to it read up lots so if you have any questions you're ready to ask them!
Thank you! I'm very glad too to get the surgery done as fast as possible. The article was very interesting, thank you for charing! In many articles I red about lack of D-vitamin, is that usual for ES patient? I had severe lack of D-vitamin 3-2 years ago and had to take 20.000 times stronger than in regular supplement. Seems crazy but it's true. I'm going to do my own little investigation about this=)
I tried TENS after going to naprapath/physiotherapist for two years where we tried lots of different things because my pain always came back. I know from reading in my doctors journal that my muscles responded most positive from TENS and on second place came acupuncture and third place warm massage. I have ordered a TENS machine now from China so I'll keep you updated on the results.
As you write Jules, I think as well that my arteries are beeing compressed and that I might have a blockage some where. I'm going to try to read up on this so I'm prepared until I meet my doctor for surgery.
How long are you having to wait between your first opereration and you next one?
We talked about it at my post-op follow up appt., and he wanted to leave it to discuss at my next appt., which is in December- then if he's happy to do it it'll be a 3 month wait. It varies a bit with doctors, often seems to be 3-6 months, although some people have had both sides done at the same time- there can be a lot of swelling in the throat though with that!
So sorry for you...but this is so huge....I have send you a friend request...because I would like to ask you something....thank you so much......Zdravka SaaMee said:
Thank you! I'm very glad too to get the surgery done as fast as possible. The article was very interesting, thank you for charing! In many articles I red about lack of D-vitamin, is that usual for ES patient? I had severe lack of D-vitamin 3-2 years ago and had to take 20.000 times stronger than in regular supplement. Seems crazy but it's true. I'm going to do my own little investigation about this=)
I tried TENS after going to naprapath/physiotherapist for two years where we tried lots of different things because my pain always came back. I know from reading in my doctors journal that my muscles responded most positive from TENS and on second place came acupuncture and third place warm massage. I have ordered a TENS machine now from China so I'll keep you updated on the results.
As you write Jules, I think as well that my arteries are beeing compressed and that I might have a blockage some where. I'm going to try to read up on this so I'm prepared until I meet my doctor for surgery.
How long are you having to wait between your first opereration and you next one?