Does anyone dive with an acoustic neuroma?

[mcmandrup]

Hi! This post has been encouraging. I'm hoping to come back to diving after a 9 year hiatus. During that time I was diagnosed with an VS after going almost completely deaf in one ear and had stereotactic radiosurgery to treat my tumor b/c it was the least invasive option. One of my first questions before agreeing to this type of surgery was, "can I still dive?" My med team didn't see why not. A few weeks after surgery, I went through vestibular therapy and surprised the therapist at how fast I recovered. No complications from the surgery and post surgery MRIs show shrinkage and some dying of the tumor cells. Also, I've flown numerous times since surgery with no problems equalizing or experience with vertigo. It's been about 3 years since my treatment and now trying to get a physician's signature on the dive medical form. I'm also trying to educate myself some more on diving post radiosurgery to have more informative discussions with my med team, but not having a whole lot of luck without access to med journals I've email DAN medic and received 'AN surgery increases risk of hearing loss, possible caloric vertigo, and maybe some CSF leakage'. And "In general, ‘no diving’ after AN surgery is a commonly held prescription among neurotologists." But feel like that's a response more for those who opted for the physical surgeries mention is the above posts.

Any information for diving after radiosurgery would be most appreciated. And other stories or cases I can share with my med team. Thanks!
@doctormike
@Ukmc

 

[Ukmc]

Hi @mcmandrup .
I don’t think anybody can give you a medical advice over a post like this without examining you or reviewing your history and tests.
Radiosurgery is an euphemism. It is not a surgery but rather a concentrated beam of radiation. Since it is not a real surgery, I agree with you that the risks could be slightly different and for example risk of CSF leakage is negligent. However, caloric vertigo is a real thing. I congratulate you on doing well with vestibular therapy - it is not a small feat. However, what it usually means is that your only functioning ear is compensating well for you. If your brain senses change is water temperature between two ears (which can happen since one of your ears is not sensing) it can create terrible vertigo, disorientation, nausea and vomiting. It is not pleasant if you are at the surface, but can be life threatening if you are under water. Also since one of your ears is not functioning, there is a double risk of going deaf if there is a diving accident. And just to top it off, radiation can cause Eustachian tube dysfunction and problems equalizing the ear. So a lot of potential problems… and thus I don’t see anybody other than your physician really opine on the problem with any assurance. There was at least one member on the SB years back that said he had radiosurgery and dove successfully. You can try to look him up but of course his experiences would not be transferable to you. Of course there was another member that reported a terrible vertigo when he tried to dive. Anyhow, if you are willing to take risks AND your physician were to give a permission to dive, you can try controlled pool environment with instructor who understand potential problems and if ok, maybe to try a shallow dive. It sounds really risky but of course everybody has different risk tolerance and risk aversion…
Good luck. Keep us posted on what your physicians say as there is not much in actual medical literature on the subject.

 

[mcmandrup]

Hi@Ukmc !
Thanks so much for the really quick response. I realize without seeing my files it would be difficult to provide med advice, but what you've provided is helpful. And yes, radiosurgery is a euphemism. I usually say I had radiation treatment rather than radiosurgery b/c I've received funny looks, even by med professionals when asked how my tumor was treated. But nonetheless, thanks for the explanation and the listing additional side affects.

And so far no probs with equalizing during a flight, nor with vertigo puting my head underwater in my unheated pool or diving while snorkeling. Thankfully. But I'll continue to work with my med team to find the best answer. Thanks again!

 

[doctormike]

Hey, sorry but I don't do this sort of ENT at all, so don't want to mislead you. I would think that if you haven't had actual surgery (involving the ear structures), then the main issue as far as diving would be your vestibular reserve, but of course better to ask your docs about that... Not sure if the radiation involved your Eustachian tube, but you do need to be able to ensure equalization ability as well...

 

[Jake 10]

Hello @fintastico
I was diagnose with a VS about 5 years ago. I get an MRI every year and follow up with Dr. Tamargo. Mine is currently 11mm long by 6mm wide. I asked the question; "Can I dive"? He said absolutely YES. I have been diving quarry and ocean ever since 2016, without any issues or equalization problems.

Dr. Tamargo specializes on the treatment of aneurysms, arteriovenous malformations (AVMs), cavernous malformations, and arteriovenous fistulas (AVFs) of the brain and spinal cord in both children and adults. He also specializes in the neurosurgical treatment of carotid stenosis in the neck by performing carotid endarterectomies. Dr. Tamargo also specializes on the treatment of skull base tumors such as acoustic neuromas, meningiomas, and orbital tumors.

He is currently; Director, Division of Cerebrovascular Neurosurgery at John Hopkins University in MD. Vice-Chairman, Department of Neurosurgery; Neurosurgical Co-Director, Neurosciences Critical Care Unit.