Hi Emily,
Destin was told NOT to do either.  While she has no desire to SCUBA she was disappointed that skydiving was also out of the question.  IF everything goes well at ehr next angio in November we plan to do a skydiving simulator for her one year anniversary.  They have one in Orlando...it's basically a giant fan that simulates what it's like to jump from a plane without the pressure changes.  Of course we'll ask her doctor if that's OK before we do it. 

Donna

Hi Emily,

Good to hear from you. Hope all is well.

Stanford recommends no high speed roller coaster, SCUBA diving or sky diving or masks. No blood donation and no chiropractic adjustment on the neck.

I know the skydiving is an issue for a MMer due to the snapping/jerking that comes from sky diving and opening the parachute. This would also apply to a chiropractic neck adjustment and to Bungi Jumping .

If I remember correctly, the SCUBA diving has to do with the pressure placed on the incision/head by the mask and also the diving part.

As for the high speed roller coaster, well I think that speaks for itself.

Take care and don't be a stranger.

Lore

Hi,
So if MM people can't scuba dive in part because of the masks, does that mean no snorkeling with masks either?  (are they even the same kind of masks)  My older kids scuba dive, so that makes me sad my daughter won't be able to dive with them when she gets older!
Thanks,
Jody

Good discussion.

I think the mask (any mask) for anything is an issue for a MMer. A mask can restrict.  My brother has difficulty with his glasses touching his incisions. Actually, we have had them adjusted so they are not too tight against his head above his ears. 

As for SCUBA Diving, I agree with the problems for a MMer are most likely blood pressure and the depth of diving pressure.

One of the possible dangers of SCUBA diving is a arterial gas embolism (AGE) where bubbles enter the blood stream and travel to the brain.  There are also what are called ear squeezes that can affect the ears and sinuses. There is also unequal air pressure associated with SCUBA diving. I suspect it is a combination of all the possibilites associated with the sport in terms of having MM.

I snorkle but I don't have MM. With snorkling, one doesn't go to the depths like in SCUBA diving but one does wear a mask. To be safe, I would consult a neuro about the possible issues of snorkling and having MM.

Lore

 

I was a certified scuba diver and I really enjoyed diving. Luckly I never experienc any TIAs while diving.  I'm very disappointted when Dr. Steinberg told me I can no longer dive any more.

Wow!  I had never heard anything about roller coasters.  Matthew rides them all the time.  I also hadn't heard anything about donating blood or chiropractic adjustments. 

As far as the mask -- wouldn't that become a non-issue once you are far enough out from surgery? 

I am overdue for my yearly update to Dr. Scott.  He did allow Matthew to play football . . . so I am curious what he will say about this.

It has always been my understanding that it was pressure changes alone that prevent mm'ers from doing these activities. 
In fact, there are hyperbaric chamber therapies that other stroke patients use to promote healing.  However, I was told specifically that Matthew could NOT attempt this.

Kim -- mom to Matthew, 17, diagnosed with moyamoya at 7, with three strokes, doubly rare with renal artery stenosis that led to loss of the kidney. 

I did visit the site -- and now I understand. 

Quote:


Matthew, who received his surgery in Boston with Dr. Scott, received an indirect bypass.  I read that this is sometimes best in children because of their smaller vessels.  I am guessing that is the difference . . .

Kim

Hey Everyone, thanks for the responses!

Not really what I was hoping for, but admittedly I have been told pretty much the same things unfortunately, was just hoping perhaps there were different opinions out there!

NO to:
-  rollercoasters (which I haven't yet but I think I plan to, I do like them!)
- scuba diving (which I had never wanted to before but now I would really like to, just 10m maybe?)
- sky diving (which I can live without, ditto for bungy jumping)
- weightlifting (which i actually used to do, the dr's thought this would have been a joke.. lucky!)

I'd already decided without asking that chiropractic neck adjustments were a bad idea, and my osteopath agrees firmly, she stays well away from my neck.

I have been snorkelling plenty of times though (I live on the Great Barrier Reef!) I had 2 direct bypasses and I do have to be careful with my mask, make sure it is not too tight (which it should not be anyway - lots of people mistakenly wear masks that are too tight) and if I felt anything wrong I would take the mask off but I don't think that has happened yet. As far as I know though, other people have had bypasses that go in different directions to mine, so you'd have to judge it on where your incisions were.

As for pressure changes though, I am now an aerial acrobat, which I started less than 3 years ago (around 9 months after my second surgery) and am constantly upside down, falling from great heights (fwds, bwds and spinning) and also plenty of time in handstands etc.. So far I have had no problems with this at all. Admittedly I have not mentioned it to my neurosurgeon and I don't plan to in a great hurry! For these reasons I am pretty willing to give rollercoaster's a go. Will see...

Cheers guys!

You all will not believe the response I got from Dr. Scott!!

I asked specifically about:
1.  Scuba diving
2.  Skydiving
3.  Wearing a swimming mask to snorkel. 
4.  Riding fast roller coasters.  I was cringing as I asked this, because Matthew has ridden several.  But he hasn't ever had any issues during or after.
5.  Donating blood
6.  Chiropractic adjustments
7.  Weightlifting
8.  Any other restrictions he could think of that I had not mentioned . . .


Dr. Scott stated that he places no restrictions on his patients after two years of surgery.  Here is his exact response:
Quote:


I feel the need to strongly encourage each and every person to consider:
a.  their present condition
b.  the corrective procedure chosen
c.  the effectiveness of that procedure
d. 

TO CONSULT WITH THEIR INDIVIDUAL DOCTOR -- EVEN IF IT IS ALSO DR. SCOTT

Obviously, each case is different, as we have discussed at length.  Matthew did not have the direct bypass that Stanford performs.  He had the procedure that Dr. Scott has perfected, known as a pial synagiosis.  It is my understanding that this is an indirect bypass, of sorts. 

However, it is nice to know that Matthew will be able to attempt activities that appeal to him.  Though Dr. Scott stated that he himself doesn't believe in skydiving.  I agreed.  After all, why do people jump out of perfectly functioning airplanes??   

Kim

Kim

Besides the interesting info about activities, I'm really happy to see Dr Scott so positive about Matts recovery.

Stay strong
Mark (Luca's Dad)

Hi All:
Long time no chat.  I haven't been on in a while, but thought I would add my thoughts on the roller coaster issue.  I was told orginally that after a year it would be fine to ride them.  This past June I went to 6Flags in NorCal and was later told I shouldn't have gone on them. Of course I was a little concerned.  Apparently from the time I had my surgeries to the time I decided to ride, the restricition had been restated.  I haven't been on since, but I did not feel any side effects from it, except for the psychosomatic ones after I read everyone's warnings....a day too late

I had no idea about any of these things. I love roller coasters and never had any problems. The only problem I do have is when I spend too much time(over ten minutes) in a hot tub or hot bath. I even fainted once. Also very hot weather kind of makes me queasy from time to time. Lucky for me I live in a country where  we seldom have hot weather.
I just remembered that( and this is still unclear to me) a certain type of ventilation makes me feel like I am going to pass out. This almost happened to me once and ever since I avoid the store where this happened.