 The Clarinet BBoard
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Author: PattyW
Date: 2013-11-09 15:56
Hi all,
I am an active symphony clarinetist and had brain surgery on Sept 25 to remove a Meningioma tumor. Thankfully, my surgery was successful and I am home recovering from this life-changing event. None of my Doctors are musicians so they don't understand the back pressure we, as clarinet players, experience when we play and therefore, they have not been able to give me a time-line or any advice/knowledge about how to return to playing. I'm reaching out here to see if there are any other clarinet players who have had brain surgery... and ask what your experiences were like when you returned to playing? How long did you wait until you tried playing again? How did your head feel?
As you would imagine, going through brain surgery is a "whole new world" for me... I want to get back to playing eventually, but I want to do so in the safest way possible to ensure I don't do anything to jeopardize my recovery. Any advice is appreciated. Thank you!
Patty
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Author: BobD
Date: 2013-11-09 16:28
Wow....my heart goes out to you. I can only pray for your quick recovery.
Bob Draznik
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Author: MSK
Date: 2013-11-09 17:02
Hi: I haven't had brain surgery, but my day job is rehabilitation including brain surgery patients. This question has never come up with my patients, but some questions you could ask your surgeon to communicate your concerns: (1) when is it OK to resume normal activities? (2) is it OK to participate in cardio exercise activities that raise breathing or blood pressure? (3) is it OK to be exposed to loud noises? (often not during concussion recovery, for example) (4) Is it safe to blow up a balloon?. Often after either brain injury or brain surgery they have a specific time table with graduated return to sports. Your doctors could probably adapt it for your situation.
Good luck in both your medical recovery and your return to music.
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Author: PattyW
Date: 2013-11-09 17:14
Thank you MSK! I did ask my Surgeon the: "is it OK to be exposed to loud noises?" (like sitting in front of trumpets and trombones) and my surgeon said:
"yes, there was no scientific evidence that loud noises would trigger a seizure or cause any harm." (I only found out about the tumor because I had 2 grand mal seizures on the same day... thus CT scan, MRI... a week later- surgery).
I will present my surgeon with the rest of your questions- they are great questions-- thanks very much!!
Patty
Post Edited (2013-11-09 17:15)
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Author: Matt74
Date: 2013-11-10 02:52
Patty,
I happen to have a friend in a similar situation. I think they could be of some assistance. Feel free to email me at matthew.simington@gmail.com
Sincerely,
Matthew Simington
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Author: sonicbang
Date: 2013-11-10 08:46
A former teacher of mine had meningitis when he young. I'm aware it's another disease. He wasn't allowed to play the clarinet for almost a half year. I hope your recovery doesn't need so much time. I wish you luck and health.
Mark
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Author: gemini-clarinet
Date: 2013-11-10 17:02
I had a craniotomy in April, 2003 to remove a brain abscess. I was partially paralyzed on my left side after surgery. The paralysis subsided after many months of rehab, but the entire left side of my body remains weak. It took over 7 years to return to the level of playing I was at before the surgery. It took a tremendous amount of practice - and patience.
Of course, everyone recovers at a different rate and I hope yours will be a lot quicker than mine was. I wish you the best of luck.
Barry
Tucson, AZ
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Author: PattyW
Date: 2013-11-10 17:48
Barry- thank you for your reply. Yes, that's what I had too - a craniotomy to remove a tumor (the size of a golf-ball) on the right meninges (brain cover).
I also have some weakness (and strange tingling/sensations occasionally) on my left leg/arm...
Do you mind if I ask you a few other questions? Feel free to email me directly, if you'd prefer not to respond on this thread.
Email: pattywassum@comcast.net
1). What kind of rehab did you have? Did you see any specialists outside of your healthcare provider? If so, what kind?
2.) When you first tried to start playing again- what were the sensations like with regards to blowing/back pressure and how it made your head (brain) feel? Because I have no time-line from my Drs as to when I can start playing- they are leaving it to me. I'm aiming for early January- assuming I feel up to it... just trying to get some feedback as to what it could potentially feel like if early January ends up being 'too soon.'
I know that probably sounds like an obvious question- I'm assuming it will hurt or I'll get a headache??? ... but that's why I posted my original Q... I was hoping to hear from other clarinet players who have gone through this experience. And, yes, you are absolutely correct- everyone's experience is different!
I'm glad to hear you were able to get back to your pre-surgery level of playing as that is a sign of tremendous recovery- I am thrilled for you!!!
Thank you again and all the best to you!!
Patty
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Author: NBeaty
Date: 2013-11-10 23:50
FWIW, I'm epileptic and have been in the hospital several times for monitoring and to see if I was a candidate for surgery. Brain surgery wasn't necessary for living as a tumor removal would be, but it was an option worth evaluating. Turns out my brain has too many errors to operate on.
I do have a family member who had a tumor removed from right in the middle of his brain. Something that would have been inoperable 30 years ago and would most likely cause death 20 or even 10 years ago. Luckily he came through and shows little sign of change as far as personality and memory etc.
I did have a neurologist that looked at me with a concerned look when I told him I play clarinet. He said it was fine, but he was apprehensive at first. I chose to ignore it, since if it were that significant he would have said something. Either way, the odds of me throwing the clarinets in the closet were very low!
I'm glad you pulled through, and it sounds like you're doing well enough to ease your way back into playing. As people said above, just follow the recovery and find when it's ok to do everything involved in playing.
Brain surgery is no picnic and it sounds like you came out the other side with flying colors!
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Author: gemini-clarinet
Date: 2013-11-11 02:25
Patty -- I don't mind answering your questions here.
1) My illness came from consuming contaminated food or water on the cruise ship I was working on at the time. I did not have to go through my own healthcare provider because I was sent directly to a hospital in Miami, Florida on the last day of my contract. While I was there, as far as I can remember, the specialists were an infectious disease doctor to diagnose the problem, a neurologist, neuropsychologist and neuroopthomologist. I had physical, occupational and one other type of therapy which I can't remember at the moment.
2) I did not concentrate on clarinet playing for a few years after the surgery. My biggest problem when I picked up the clarinet again was not being able to coordinate the fingering and the tonguing when I played - VERY frustrating!!!! Although I still get migraines a couple times a week - ALSO frustrating!!!!!- I don't recall any pain in my back or head from the pressure. I certainly can't give you any sound medical advice, but I will say try it when you think you are ready and if it causes you any discomfort, STOP! In my case, I have learned to recognize my physical limitations. If I overdo it, I still get into some trouble, so I try not to do that . At the first sign of any unusual feelings, I know to stop what I am doing and rest. It will take time and you may get discouraged. Just take things very slowly little by little. That is what I did.
When I wanted to play again, I began with a lot of sight reading. I had always been a HORRIBLE sight reader, but I am pretty good now. It took a lot of practice. I actually play a lot better now than I did before.
As far as headaches, I have also learned to take some medication AS SOON AS I FEEL ONE COMING ON!. This took a long time to learn. When I ignored it and just hoped it would pass, I would have it for a day and a half! The doctors prescribed all kinds of strong medications and antidepressants which did nothing for the pain, but made me feel horrible all the time. I use Migraine Strength Excedrine and that's the only thing I take now. I can't tolerate heavy medication. I don't know what will work for you, but that is what I use now. I always have some with me. I keep a bottle in the glove compartment of the car in case I get one when I am out so that I can get to it immediately when I need it.
I hope some of this information will help and if you have any other questions, you can post them here (I check the board regularly) or feel free to send me a private message.
Barry -- Tucson, AZ
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Author: williamalex54
Date: 2013-11-11 23:35
Alexander Miller, who plays oboe in the Grand Rapids Symphony, had one or maybe two surgeries, for a brain tumor, and he kept a public blog for everyone to see.
Here is a link to his blog.
http://www.husbandamused.com/
If you'd like to get in touch with him, I do have his email. I'm sure that he'd talk with you.
My email is delmarw at gmail dot com
Post Edited (2013-11-11 23:37)
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Author: PattyW
Date: 2013-11-12 00:19
Barry,
Thank you again for your reply- good information!!! Just in general I have found with my recovery- if I try to over do it... I really feel it later... usually in terms of fatigue. But, of course, I can see your point about that happening with clarinet playing as well... as well as making myself too tired.
Were your headaches specifically induced by playing clarinet?
I'm glad you were able to get the care you needed and you eventually found your way back to the clarinet!
Thank you again for all the GREAT information!!! I'm sure I'll be in touch again... when I get to the point of playing again.
Best regards,
Patty
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Author: PattyW
Date: 2013-11-12 00:23
williamalex54:
Thanks for your reply!
I will check out Alexander's Blog... thanks for the website!
I would be very interested in emailing with him about his return to playing... if you wouldn't mind sharing his email address, I would sure appreciate it. You can email me at: pattywassum@comcast.net
Thanks so much!
Patty
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Author: gemini-clarinet
Date: 2013-11-12 01:22
Patty -
Fatigue and migraines are still a big issue with me and unfortunately will be for the rest of my life. Other people usually see the signs before I do. I had a Saturday morning rehearsal and a Sunday concert this past weekend, and both times people came up to me afterward and asked me if I was okay because I looked pale and tired. It's just one of those things I've had to get used to.
I never got a headache specifically from playing the clarinet. Listening to some other people play it sometimes brings them on - but that's another story :-) .
BARRY -- Tucson, AZ
Post Edited (2013-11-12 01:24)
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Author: PattyW
Date: 2013-11-13 17:11
Barry-
Fatigue is a real issue for me right now-- I'll have a day or 2 where I feel more energized, then I'll have about 5 days where I'm super tired. My Surgeon wants to send me back to work on Dec 2nd (I"m a middle school band director) and I just don't think I'm going to have the energy to get through the school day, so I'm planning to request an extension with my leave of absence and go back in early January- after winter break.
Did you ever have any seizures before or after your surgery?
I hear ya on your comment: "Listening to some other people play it sometimes brings them on - but that's another story :-)"
hee hee... yes, that is another story! :-)
I'm so encouraged that you're back to playing... thank you for sharing your experiences with me!
Patty
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Author: gemini-clarinet
Date: 2013-11-14 01:54
Patty -
As I have said before, I can only speak about my own experience, but I agree with you that December sounds like it may be too soon. I recuperated at home for 6 months after spending about 6 weeks in the hospital. I felt fine and was extremely bored and just wanted to get back to work. I had pre boarding examinations by a couple of the same doctors who treated me in Miami and they said I was ready. I was not. I felt perfectly fine while I was not under any stress or exerting myself much, but I was back on the ship for a matter of weeks before I started getting the headaches again and was unable to work. They put me in a hotel for about a month over Christmas and New Years (2004) because they were unable to get any doctors to see me over the holidays. Since I had been resting for a month, when I was examined again, there were no visible symptoms and they declared me fit for duty and sent me to another ship. I was okay again for about 3 weeks until they had put me the 8 hour night shift for 9 days straight with no days off and side duties during the day when I should have been sleeping. By that point, I was unable to work again and went to a neurologist in Belize who said there was no doubt that I was no longer able to work and I was sent back to the States.
As far as seizures, I used to get them a couple weeks before and several months after my surgery if I was working long hours and had the stress of that job. Thankfully, I have not had one in years. They were extremely frightening.
If you are tired, you MUST stop whatever you are doing and get some rest. It is a very important part of recovery. You may not really want to, but you really have to do it. After a period of time, you will learn to recognize the signs of fatigue and not overdo things.
My comment about OTHER people's clarinet playing comes from my YouTube search for a good recording of the Weber Clarinet Concerto. Have a listen and I am sure you will see what I mean. WHEW!!!!!!
It does feel good to get back to playing regularly. In one group, we are doing Beethoven Symphony #5 so I even get to play with my C Clarinet.
Hope you are back up and around soon.
Barry - Tucson, AZ
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Author: PattyW
Date: 2013-11-14 16:58
Thanks, Barry!
Yes, navigating this 'fatigue maze' is quite a challenge... but as you said, when I feel fatigued- I rest... even if I'm in the middle of a visit with someone- or (at home) having a meal... I don't hesitate to excuse myself and go lay down.
Wow- you were in the hospital for 6 weeks post-surgery... they were kicking me out by day 5... telling me I "looked too good to be in the hospital." I replied with: "well, ask me how I FEEL." But, truth be told, I was happy to get home... to my own bed and my own surroundings.
I'm sorry you had such an up and down experience after your surgery and getting back to work, but thank you again for sharing your experiences with me!
Truth be told, I am NOT a fan of Weber... I should probably stay off YouTube for a while... as listening to Weber might trigger a seizure. ;-) hee hee
Enjoy Beethoven's 5th !!!
All the best,
Patty
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Author: gemini-clarinet
Date: 2013-11-15 00:01
Patty -
Yes - the fatigue maze can be challenging. For me, the problem was that I didn't realize that I was getting tired until my friends would tell me that I LOOKED tired. As far as my hospital stay, it was a long time. They kept me in for an extra few days to keep an eye on my elevated liver enzymes or something and I was going a little stir crazy at the end. I really wanted to go home. If I HAD to be in the hospital, that was a good one, not that I'm really a fan of hospitals. Not as a patient at least!
After my first week, the Hotel Manager's assistant came to see me and bring me my stuff of the ship. I guess I did not look as good as you did at that point, because she came in, took one look at me and burst into tears. I must have been feeling better than I looked because I told her to get out if she was going to cry. - LOL
When I was working on the ship, going to rest was not an option. We worked over 60 hours a week with no days off and it caught up with me pretty quickly each time.
I've always enjoyed listening to the Weber IF it's played well. You can tell in the first couple of measures if they're going to make your head explode. Just keep your finger on the mute button!
Barry
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Author: Vubble3
Date: 2013-11-15 01:06
Congratulations Patty on your road to recovery! By any chance, are you a professor at UOP?
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Author: Garth Libre
Date: 2013-11-15 09:45
To Barry (gemini-clarinet). You say your illness was caused by eating contaminated food on a cruise ship. My understanding from talking to cruise workers is that as an employee of a modern cruise ship you have few rights and your employer has minimal responsibility in employee injuries. As a full time Dade County transportation officer, I usually work two days a week directing and inspecting taxis, limos and buses at the Port of Miami. I have heard many horror stories from cruise workers as to their treatment on board. Has your employer supported you economically during your healing process? I understand you might have had to sign a legal document preventing you to speak about the details, but it is well known that employers like Carnival skirt most moral and legal obligations because of their ships' registry outside the developed world.
Garth, 305-981-4705. garthlibre@yahoo.com
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Author: gemini-clarinet
Date: 2013-11-15 14:57
Garth,
What you have heard is absolutely true, especially for the Non-US workers, many of whom have no recourse for some of the things that go on. First of all, the doctors aboard ship do not have to be certified to practice in the United States in my experience. Most of the ones I had to deal with were not qualified to treat anything more serious than Norwalk virus outbreaks which were rampant at that time and still are. The one who I saw when I got sick 5 days before the end of my contract conducted an "examination" which consisted of shining a flashlight in my eyes and ears and then telling me "I have eliminated anything dangerous" even though I had had a constant headache for 3 days with a pulsing light in the middle of my field of vision when my eyes were closed, dizziness, vomiting, bumping into walls, and falling down. First he diagnosed a migraine, the following day, a nasal infection and on the final day, he said I was fit for duty and fit for travel, signed me off the ship and said "Maybe you should see a doctor when you get home". He also wrote "No neurological symptoms" on my sign-off sheet." The Hotel Manager stopped me on my way to the gangway to go to the airport and had me sent to the hospital for a checkup where they performed a CT scan and MRI and found a mass in my brain. That Hotel Manager saved my life. He sent me off on "Medical" instead of "Vacation". If you are on vacation, their responsibility for you ends as soon as you step foot off their ship. When I woke up in the hospital the next day, a doctor sat on the bed next to me and told me that I was lucky I got there when I did because what I had was "100% fatal in not treated" and if I had gone on a plane the day before to get back to Tucson, the pressure would have burst the abscess in my brain and killed me instantly.
I was treated very well while I was sick the first time. The second time (about 8 months later), the Chief Purser noticed I was having problems and sent me for another checkup and I was signed off again. The third time, I was on another ship and they pretty much ignored my condition until I collapsed in the middle of my shift. When it came to the point where they were ignoring me, I had to get a maritime lawyer. Then they had to support me economically. The company settled the lawsuit after nearly 7 years!
Most cruise lines have their ships registered in Monrovia, Nassau or some other foreign country for tax purposes and many of them certainly do skirt legal and moral obligations. The industry has changed a lot in the 20 years since I started as a saxophone player with the company you mentioned. Some very dark things go on behind the scenes.
Post Edited (2013-11-15 14:58)
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Author: PattyW
Date: 2013-11-15 16:33
Vubble3 -
No, I am not the Clarinet Professor at UOP, but I know her well... I have taken lessons with her... and, of course, we share the same name.
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Author: Garth Libre
Date: 2013-11-16 00:43
Shocking story about health care by way of Carnival and perhaps other cruise lines. I must say as little as possible about this issue as my wife (different last name) has sold to the A***** family as an artist. My prayers are that these abuses might one day cease.
Garth, 305-981-4705. garthlibre@yahoo.com
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Author: gemini-clarinet
Date: 2013-11-16 01:59
I wasn't working for Carnival when I got my illness. It was another major cruise line.
Actually, working for Carnival was great for musicians 20 years ago. I worked 13 hours a week over 4 days (3 days off) AT FULL SALARY!
The only health problems I had when I was a saxophone player were hangovers. I don't think that counts.
BARRY
Post Edited (2013-11-16 02:01)
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