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Is operation my only option?

Posted , 5 users are following.

Aussie_Krysia
Aussie_Krysia

I'm a 44 year old female who has just been diagnosed with my first salivary stone in the submandibular gland. The stone is about 7mm in size. The maxillofacial surgeon has told me that due to its location I will need to have the stone AND gland surgically removed. My question is whether this is really necessary? The surgeon told me that if I don't have it removed it is likely to cause a major infection which will mean I will need to have my gland removed down the track anyway. He has warned me about the (minimal?) risk to facial and tongue nerves.

On a related point, does anyone know whether salivary stones may be caused by facial trauma. 15 months ago I was hit by a car and had fractures to my right eye socket which caused a lot of swelling on the right side of my face, exacerbated by the following surgery. Interestingly, my salivary stone is on the right side too. Conincidence? My surgeon thinks so.

0 likes, 6 replies

6 Replies

  • Guest
    Guest

    Posted

    My Father has had swollen salivary glands on the sides of his face for about 2 years now. He is also fighting Non-Hodgkin s Lymphoma-stomach cancer.

    He is unfortunately having to utilize charity care for he cannot be covered by typical insurance with cancer.

    The doctors tell him that his glands contain stones and for him to suck on lemon drops!! Okay I can understand the sour concept, but really? He says he is tired of sucking on them and they don't work!!

    They tell him that there is nothing to stick a syringe into to drain and that surgery can lead to facial paralysis. So nothing else has been done, and no plans are being made.

    With him losing more weight, my loving Father looks like a chipmunk with stuffed cheeks for the winter.

  • joy39504
    joy39504 Aussie_Krysia

    Posted

    I see this is an old post, but mirrors my experience a little.  I have two submandibular stones, 7mm in gland and a 2mm in duct.  When things flare up, every couple of years, I am in horrible pain and the swelling is larger than a golf ball.  The flare ups last a full week, then the pain stops and swelling goes down over time. I have explored all options and have decided that as long as I only have a flareup after a couple of years, I will take that rather than having the gland removed surgically.  IThere can be complications with the surgery, i.e. facial nerve damage.  If the flare ups happen every year or less, then I will consider surgical removal because the pain is really bad.
    • karenskip
      karenskip joy39504

      Posted

      Hi joy,

      I was told that I would have to have gland removed and do know of the risk to face but surely infection is an issue. I keep getting throat problems and sinus problems, colds etc. I don't want this to be a constant cause of infection. I am at the stage now where the gland hurts just swallowing. I did have a stone which I removed myself but I know there is still another in there. I have a yellow swelling spot under my tongue again. Silogram showed nothing but everyone, dentist, my husband, kids can all see it. I have sucked lemons but this one just does not want to come out.

  • StatusAnonymous
    StatusAnonymous Aussie_Krysia

    Posted

    Hi Austin -

    I'm not a doctor by any means, but can tell you with most certainty that stones formed in salivary glands, whether submandibular or paranoid glands are not a result from trauma. Rather, they are a result from a different type of underlying cindition.

    That said, since I myself has already undurgone submandibular gland surgery, there is to date (not that is known to me) any specific percentages of patients that underwent the same surgery that "need to have the submandibular gland removed".

    That said, there are many discussions and posts by people and MD's that reference the fact that "stoned in the salivary ducts, whether submandibular, paranoid, etc.. can indeed, come back or return".

    However, when delving deeper into this exact topic, I found to my surprise that only 20% of patients have stones that return. Far less than maybe the doctor is suggesting. I can tell you, as I have responded to a prior response once on this website, that there is an "excision operation that is done under the inside of your mouth, under the tongue." This leaves no cosmetic scarring and in my opinion, should only be done by the BEST possible ENT surgeon in your area at a 1st class rated teaching hospital. Insist on having the Professor or, Associate Professor to that specific hospital do the actual surgery.

    Anything less in my opinion would be a HUGE disservice to you, as the patient. Please remember that, there are indeed thousands of facial nerves that can be affected by such a surgery.

    There is, and now no question in my mind that, obtaining and insuring the best possible surgeon to perform the surgery is critical. Please do your own on-line review of their residency, college they attended, etc.. to determine this.

    While many may think this surgery, as,represented by their local ENT Doctor is minimal, or without potential life-altering complications, it is far from that.. In fact, while again, it I s most likely a necessart procedure, it is also a surgery that has and does, maintain a high risk of facial nerve impairment or loss on the corresponding side.

    I'm fifty (50) years old and, have dealt with this issue for over twenty (20) years.. And, while I, as a patient, fully understand the risks of "leaving the submandibular gland in", I also can personally attest to the fact that "removal of the gland is not necessary UNLESS, the operating surgeon "in his/her professional opinion during the time if surgery, has determined the comokete removal of the gland is necessary due to the stone's composition or, the gland's substability to be prone to future infections".

    Again, we are talking about age and hypotheticals, but l, as a 20-40 yr. old, I would strongly consider the gland being removed. Above the age of 50, not so much..

    Just my two cents.. Hope this information helps you..!! God bless..!!

    • karenskip
      karenskip StatusAnonymous

      Posted

      Hi,

      I had a stone some months ago and removed it myself. I then went to max facial who did a sialogram and said there was no other stones but I could feel one and at times plainly see it under my tongue. I returned for the results of the sialogram and I was told that the problem was the gland itself and there definitely was no stone in the tube. I was told my only option was to have the gland surgically removed. My consultant said it my gland would eventually stop working anyway.

      I am now on the waiting list for this but yesterday I managed to pull my second larger stone ftom the gland after having lots of swelling since and driving myself mad because I KNEW I had another stone.

      Now I am two minds about the surgery as I already have face nerve damage on that side from cholesteatoma.

      Do stones keep coming? Is there a reason for it maybe and removing the gland stops this? I would prefer no risk of anymore facial weakness/paralysis but what damage would it cause leaving the gland be.

      Thanks for any advice.

    • StatusAnonymous
      StatusAnonymous karenskip

      Posted

      Hello Karenskip-

      Stones have a recurrent rate of approximately 25%. If your gland is not working properly (and it appears it's not), then you are certainly more susceptible to developing stones in the future.

      As I'm sure you're aware, these salivary glands pass through thousands of facial nerves. In turn, the risk of facial paralysis, however remote it may be, is a real concern that should be weighed.

      I cannot advise you on whether or not to have the surgery to remove the gland, as I am not qualified to do so. However, what I can do us offer my opinion based on the facts you represented. It "sounds like" your submandibular gland may have been infected, inflamed, etc.. for a number of years. Mine was 25 years before I went for any relief. This could easily be the reason why your stones are returning. Medical science still does not have an answer, as the problem is truly very rare.

      Again, as I have in past posts to this forum, I defer to the qualifications, credentials and the success rate of your personal surgeon. And please remember, if you choose to leave the gland in, there are pros and cons. One pro being there's no concern for any further or potential facial nerve damage, but the con would be, to allow a potentially infected salivary gland continue to develop stones and, cause you pain and swelling the rest of your life.

      While these cases such as ours are rare, understandably, they are real to us. If it were me, I would trust my surgeon (after doing a whole lot of research and, the hospital he/she practices at). Is it a teaching hospital? Is your surgeon one of the "teachers" or a "student intern"..? These differences are huge and, you don't want such a surgery done unless it's by the best.

      If it's the submandibular gland being removed, it will leave a scar about 5" long that should be stiched in a way that the incision is just below your cheekbone, as the scar may be somewhat hidden from under your cheek bone.

      Best of luck in your decision. In my own experience, the relief of pain was worth the risk. However, truth be told, I was not advised about possible facial paralysis, etc.. and - maybe for good reason.. I might not had even had the stones taken out if I knew "too much". Food for thought..

      Best to you,

      Anonymous

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