CK headaches persist

[kkgriffin]

All of your information regarding your an cyberknife journey's have been interesting reading.  I had ck for mine Nov. 18, 19 and 20 of this year.  I had similar experiences during my treatments, but not post treatment.  Before the third treatment I had a terrible headache.  When I told the technician about it she went and spoke to the Radiation/Onocoglist who said that was did not seem to be a symptom of ck.  During and after the treatment my headache continued to get worse.  I was escorted to the Dr. office after the treatment, meanwhile my head was hurting so badly.  I was told to go to the ER and to see my Dr.  My husband and I just sat ther stunned.  I said aren't you my Dr., she said no your treatments are done I am not your Dr.  I was beyond shocked.  She di calll my neurosurgeon who was in surgery.  I went to the ER, and sat there for about 45 minutes in the waiting room and could not stand it, so we came home.  My head continued to get worse, I felt like it was going to "explode".  So we went back to the the ER.  The ER Dr. told me he was out of his element, he knew very little about the brain, he did a CAT scan and it showed some swelling.  He called the Dr's on call and prescribed steriods and gave me pain shots.  I have continuted to have tremendous headaches and my balance is getting worse.

I am wondering has anyone had similar side effects.  I am getting more depressed everyday from this.  And I am so frustrated that I am not getting medical help.  The medical help I am currently getting is from my Internist who admits he does not understand why I am no getting support from the Radiologist and Neuorsurgeon.

I wish I would get the support you have all received from your medical team.  I had a very hard time deciding what direction to go for treatment and decided on ck after consultqtion with surgeons and the radiologist.  I really considered goin g to Stndford and decided to have it at "home.  I so wish I would have looked further as it is obvious there is a big difference in medical teams.  The Robot may be the same, but seems that is where it stops.

Thank you for any help you can give me.  Sometimes I think I can not stand the headaches any longer.
Karen

[6pick]

Karen, I am so sorry you've had a bad experience. It's bad enough that you have the tumor, then to have such a painful result from treatment and then to receive such little care from those who you rely on to be your caregivers. That, I imagine, is the most painful of all. I wish that I knew how to help but, I am afraid I do not. But there are many on this forum with much greater experience than I. Perhaps one of them will check in soon. I'll be watching. Best of luck.

Mark

By the way, where did you have your treatment?

[Jim Scott]

Hi, Karen ~

Welcome to the ANA discussion forums, although I'm sorry you have to cope with these severe headaches and received the brush-off from your radiation oncologist when you asked for his help  Unfortunately, that is not something that is unheard of when you're dealing with medical specialists.  They do the 'job' they're 'hired' to do but take no responsibility for any after-effects, such as the headaches you're experiencing.  On the other hand, some medical teams are quite supportive of their radiation/surgical AN patients.  I was blessed with that kind of doctor (a neurosurgeon) who was very concerned with the quality of my post-treatment life and went to great lengths to ensure that I would have the best chance for a good (complication-free) outcome to my surgery and subsequent (planned) radiation (FSR).  I did enjoy a very good outcome to my AN debulking surgery and FSR, with almost no real complications.  However, I realize that not every AN patient is so fortunate and we can understand your frustration and despondency as you struggle with headache pain every day with little relief in sight.  I urge you not to abandon hope and persist in seeking a solution to your headache issues.  It is out there.  Many of our posters have battled with the same kind of seemingly intractable headaches you're dealing with and eventually found relief.  We're all AN patients here (or closely related to one) and understand your struggle, even if it hasn't been something we've personally experienced.  We're here to support, encourage and advise you as you need us and we're happy to do so.  Please don't give up - and stay connected to the discussion forums.  Thanks.

Jim  

[sunfish]

My experience has been similar but, fortunately, not so drastic.  I chose to have CK locally, but have had so-so luck with followup.  Like you, I've had some unusual symptoms after CK, and no one seems to have any answers.  Hopefully, you've contacted your neurosurgeon.  My radiation oncologist wrapped things up with me right after treatment.  I've seen the neurosurgeon a couple times.  Keep up with seeking help and answers.  I've discovered you have to learn as much as you can and be your own advocate.  Take care, and keep us updated!

[TJ]

Karen

My final CK was right around the time you finished.  My last one was on 11/22.  My doctors did let me know that I might have headaches, which I do, but nothing on the level you are having.  That may have something to do with were the AN is located, just a guess.   My thought is that you or your insurance paid for this treatment, for me brushing you off is not exceptable.  Keep after the doctor for answers.

Hope you get relief soon.

TJ

[kkgriffin]

Thank you for your responses and your support.  I am glad that I decided to post here.  I have been thinking I must be losing my mind.  And then getting the brush off like I have.  When I last called my neurosugeons office and of course only got the nurse she said my symptoms were not usual, and had never been heard of.  I then they called me in Tylonol 3.  All I could say is you have to be kidding, I did not even bother to get it.  And then said they were referring me to a headache specialist - a nurse practioner ( who never bothered to call me).  How do you go from a neurologist to being referred to a nurse practioner!  And not even in his office or with CK.  Needless to say I feel like I am totally on my own. 

I have such headaches, staggering, dizzy and my glasses feel like they weigh 100 pounds there is so much pressure.  I don't know what to do.  Does anyone have a suggestion.  I am wondering if Stanford would see me now that I have had CK in another location.  Any suggestions.  I am willing to travel anywhere if I can get help or at the very least some answers.

Thank you again for your support and help.  And thank you for moving my post.
Karen

[ppearl214]

Hi Karen and welcome. Will try to chime in here as well, as best as possible.

The CK team should include a "neuro-oncologist", who should be aiding you, post-treatment. They are typically the "neurology" of the radiation teams that should be following along for any issues you may have.    Some of what you noted, in doing your homework, sometimes occurs and as you may have read here, can happen.  Enhanced issues, such as "wonky head", tinnitus, headaches, etc have been reported by many (including myself) and the neuro-onc should be following you on this.   Suggestion (although not a doctor nor do I play one on tv) is to book an appt with the neuro-onc that is part of your CK team. Where you are recent in treatment, they will need to follow along, could possibly recommend meds (ie: a course of steroids, anti-inflammatories, etc) for your particular situation.  Neurologists that also specialize in headaches may also want to follow you as well, but this immediate, post CK, suggestions would be the neuro-onc on the CK team.

Not sure if you are also aware of the CK forums (www.cyberknife.com).  Radio-oncs volunteer their time to answer patient questions... there is a section there for AN's. That may also be worth pursuing.

Hang in there.... I know it's a recent situation and know that we are all here to help.

Phyl

[sunfish]

Good advice from Phyl - I'd definitely post on the Cyberknife website/forum.  You'll get a good reply from one of the docs as to what to do.

[windy]

I am very sorry for your headaches.  I, too, had a similar story to yours in trying to get help for my post treatment problems, including headaches.  Any symptom I had post treatment, I was told was not from treatment.  I ended up getting a neurosurgeon in my area who agreed to read my MRI's, but stated he would not "treat any symptoms", I suppose because of any possible legal issues.  I only needed help, not legal counsel!!  Anyway, he did refer me to a headache specialist.  But, as I stated in another recent post, my horrible headaches had calmed down greatly by that point.  What helped me most during this time was going on and off Medrol Dosepaks.  I went on and off of them about every two to three months, starting the month after treatment.  This went on for about a year and a half. 

I wish you the best.  It is very possible your headaches are going to get better.  Please feel free to express your problems.  Many on this forum are helpful and may have had similar experiences.

[kkgriffin]

I had an MRI done today, ordered my the new neuorgist I saw for the headaches.  He had some thoughts abo9ut what might to going on and needed to start wtih an MRI, I see him Friday for the results.  I hope there is something he can give me to help.
Karen

[Tumbleweed]

Hi, Karen:

Although many doctors insist headaches are not a side-effect of CK treatments, a recent study reported a minority of patients (I think it was 11%) do experience this following radiotherapy. Sorry, but I can no longer find the link to that report. But rest assured headaches are not unusual, although yours do seem to be quite severe. Hopefully, they will calm down and go away over time.

Considering you have had such a bad experience with your medical team, it would be helpful for others on this forum to know where you had your CK treatments performed. You might save others who are considering having CK there from the same fate. While all types of AN treatments carry risks, it is unforgivable the lack of post-op support you have received.

I hope you feel better soon.

Best wishes,
TW

[kkgriffin]

I am glad to report that today was the best day I have had since treatment.  It was actually amazing to be able to partially function throughout a good portion of the day.  I am anxious to get my results of the mri tomorrow.

I had treatment in Great Falls, Montana. 

[Tumbleweed]

What was the name of the medical facility?

TW

[kkgriffin]

Finally I feel like I am going to be okay.  The headaches are bearable.  I still have a dull one, but liveable.  I did see a neurologist who was not part of the ck team, not even involved with ck.  He is now treating me.  He did an MRI, the tumor has inceased alot in size which is expected.  I am now on a ten day steriod treatment, there is water in the inner ear so a water pill and a decongestant to clear that up.  It is all knocking me some, but well worth the end result.  I am excited to be getting somewhere with all this.

We did have to travel from Montana to Denver yesterday on some of the worse black ice and snow packed road you can ever imagine.  We were so glad to see our motel room last night.  800 miles of pure nervousness.  Sometimes had trouble seeing the road.  And we lived in Alaska for 25 years, should have been used to that kind of stuff.  Glad our appointments are tomorrow, we needed today to rest.

[skahn47]

Finished my ck last Friday, June 10, 2011. The side effects are not supposed to show the first two weeks after treatment. But it hits me today, Monday 06/13/2011. It's off and on thing. Anyone has that problem. sk