Really Frustrated and in Severe Pain

[proudmomof3]

Hello Everyone,

I have no where else to go. My "lovely" surgeon won't even acknowledge my questions. He just said "see you in 6 months after your MRI".  I have had HORRIBLE headaches like I have never had in my life. He asked me if I have seen a neurologist...I gave him the "deer in the headlights" look....Isn't he a neurologist??? Apparently not. He is a NEUROSURGEON....BIG DIFFERENCE I GUESS...So he refers me to a Neurologist and gets me in really quick - Like "the end of JULY!!!!" really quick.

In the meantime, I am experiencing the most painful headaches I have ever had in my life. They are on the bad ear AN side, up my face, ear, down my neck, to the top of my head. The tinnittus is so bad as well that I feel like I am going nuts. The headaches are accompanied by severe nausea and of course, horrible bouts of crying as I have 3 kids I am trying to take care of, one of which is a special needs child whom at this point I cannot even tend to. My dear husband works hard so I can stay home with the kids.

I am writing today because I am in such pain with my head I don't know what to do. I have NO doctor that even cares.  Is this pain normal for after GK surgery? This is the 3rd time this has happened in the last month since my surgery.

ANY help/advice would be greatly appreciated.

And sorry if I sound like a whimp/whiner. I am seriously in pain and cannot even function.

Cheryl

[Jim Scott]

Hi, Cheryl ~

I'm so sorry to learn that you're suffering with horrendous headaches.  Unfortunately, this can happen following GK.  Not always, of course, but it is not unknown.  I had surgery and FSR but haven't had this kind of headache crisis.  However, some of our members have had  an experience similar to yours and I trust they'll soon be along with advice, suggestions.  Meanwhile, you'll be in my prayers.  I certainly hope you'll find some relief soon and that we can be helpful to you in finding it.  No one should have to suffer with these kinds of headaches.  In my opinion, your doctor is , to be kind about it, insensitive.

Jim

[Syl]

Cheryl,

Headaches are very common with AN treatment. I have had chronic headaches since my surgery 3 years ago. What works best to ease my pain is applying heat at the back of my neck. I keep a heating pad handy. Some folks on the forum prefer to use cold packs.

There are also a variety of cremes that contain capsicum. That works well for me applied & the site of pain.

Tylenol also does wonders to ease the pain, but I use that as a last resort, trying to keep my consumption to a minimum. Tylenol can often make your body dependent, so I try to take it no more than twice per week. It's not good for your liver or kidneys, either.

I hope this helps.

Syl

[Cheryl R]

Cheryl,    Are you taking any pain meds at all?       I would even go to your local family dr and tell him.    There are some meds which are  seizure meds but help nerve pain also.         I wiould ask about Topamax, Neuronitin or Lyrica( not a seizure med).     You might have to experiment with what works for you.  Some may make you not feel the best for a time but most adjust.       The ice packs or heat is trial and error too.               Keep at what ever dr you can.      I did not have post op headaches except for the short time recovery ache of not serious nature.               Chronic pain is hard to live with.
                                                           Cheryl R

[proudmomof3]

Cheryl,    Are you taking any pain meds at all?       I would even go to your local family dr and tell him.    There are some meds which are  seizure meds but help nerve pain also.         I wiould ask about Topamax, Neuronitin or Lyrica( not a seizure med).     You might have to experiment with what works for you.  Some may make you not feel the best for a time but most adjust.       The ice packs or heat is trial and error too.               Keep at what ever dr you can.      I did not have post op headaches except for the short time recovery ache of not serious nature.               Chronic pain is hard to live with.
                                                           Cheryl R

I have tried a TON of Tylenol and am afraid it will do kidney damage. My mom was diagnosed with kidney cancer back in November so I am afraid it could be hereditary. UGH....it's really not fair that we have to suffer and the dr's just really don't care. My GP is "nice" but not familiar with AN's so as all my dr's are, they are afraid to prescribe any pain rx. My NEUROSURGEON refuses to prescribe anything as he pretty  much states the headaches are not real. And at least are not coming from the AN.

I did try heat, but that did not help at all. I am now trying ibuprofin which irritates my stomach but it does work better than Tylenol.

Thanks for the advice.

[proudmomof3]

Cheryl,

Headaches are very common with AN treatment. I have had chronic headaches since my surgery 3 years ago. What works best to ease my pain is applying heat at the back of my neck. I keep a heating pad handy. Some folks on the forum prefer to use cold packs.

There are also a variety of cremes that contain capsicum. That works well for me applied & the site of pain.

Tylenol also does wonders to ease the pain, but I use that as a last resort, trying to keep my consumption to a minimum. Tylenol can often make your body dependent, so I try to take it no more than twice per week. It's not good for your liver or kidneys, either.

I hope this helps.

Syl

Thanks for the help Syl...I did try the heating pad..it always works for my back but did not do anything for this head pain. I think it is way more severe than my back pain. Tylenol didn't do much but I am continuing to take it. Something has to work. A GOOD doctor would be nice about right now

[proudmomof3]

Hi, Cheryl ~

I'm so sorry to learn that you're suffering with horrendous headaches.  Unfortunately, this can happen following GK.  Not always, of course, but it is not unknown.  I had surgery and FSR but haven't had this kind of headache crisis.  However, some of our members have had  an experience similar to yours and I trust they'll soon be along with advice, suggestions.  Meanwhile, you'll be in my prayers.  I certainly hope you'll find some relief soon and that we can be helpful to you in finding it.  No one should have to suffer with these kinds of headaches.  In my opinion, your doctor is , to be kind about it, insensitive.

Jim

Thanks Jim,

I agree about my dr. I thought he was great at first...now I am changing my mind rapidly. Thanks for your prayers.

[james e]

Your headaches might not be from your treatment. A neurologist is who you need to see, but there are all types of neurologist. They all specialize. I have found out that they are all in business, and they all will take your money, but they might not be the right doctor. If you have a toothache, you go to a dentist. It is your tooth nerve that hurts, and a neurologist will agree with you, but he cannot treat your tooth...he will refer you to the dentist.

There are neurologist that treat nothing but headaches. If you do not trust your surgeons opinion, start going through yellow pages and start calling neuros that treat headache. One of them will refer you to a good headache doc.

[nftwoed]

Hi Cheryl;
  Oh, it hurts to read of someone suffering so! I'm sorry...
  Another person never really knows the extent of another's pain, or, their pain tolerance, but, it sounds like you're 10+ on the pain subjectivity scale.
  From what I see in looking around the web is that head ache after GK is not uncommon.
  So; Re, Drs, can you self refer yourself to a neurologist, pain clinic, or even neurosurgeon outside your radiation provider?
  I've heard low dose Elavil, say 25 mg, can take the edge off pain of different types. Cheryl R. mention the nerve pain agents as Neurontin or Lyrica. But; The Dr, of course, holds the power of writing the prescriptions.
  When you mentioned pain like that, I immediately thought the trigeminal nerve may have been irritated during the procedure.
  Trusting you went to a reputable clinic/hospital, I'm trusting there was no treatment error. The GK is pretty potent and has the ability to produce even an AVM, or conversely, treat an AVM. Those tiny bleeds or jumble of vessels can cause great HA pain!
  Gee; I wish I could help here with words. You may need a narcotic pain reliever if nothing else works. One thing about any of the OTC NSAIDS as Tylenol, Motrin, aspirin, Advil, is that they can produce rebound HA if overly used. They are also not particularly organ friendly and aspirin, stomach irritation or blood clotting friendly.
  But; Finding a Dr. to see you immediately. Not sure where you're located, but I'd sound desperate to many and maybe make an appearance at a large emergency room.
  Hang in there Cheryl. There are a lot of people here who know suffering and are at least with you in word and spirit.
 
 

[mk]

This sounds like nerve pain to me. I also have it to some extent after my surgery, but thankfully not so severe. I do find that the common painkillers don't work AT ALL.
Ice packs have provided some relief. I found this suggestion on the forum: 5 minutes on, 5 minutes off. I do it in the evening, but some people do it more often. I have also experimented with different OTC medications. I found that Aleve takes off the edge of the pain (only). Yesterday I tried a combination of Tylenol/muscle relaxant (it is called Extra strength Tylenol body pain, night). I did sleep better than I had in days.
I do agree though that some nerve-specific medication, like the Neurontin-Lyrica etc. may be in order here. Have you discussed the possibility of steroids with your doctor, in case it is due to some nerve irritation due to swelling? You are well within the timeframe for this.
I sympathize with you, I also chose initially GK because I had young children to care for and I expected that the side effects would be milder compared to surgery. I guess it just doesn't work like this for everybody. I do hope that these horrible headaches will resolve soon.
 
Marianna

[proudmomof3]

Your headaches might not be from your treatment. A neurologist is who you need to see, but there are all types of neurologist. They all specialize. I have found out that they are all in business, and they all will take your money, but they might not be the right doctor. If you have a toothache, you go to a dentist. It is your tooth nerve that hurts, and a neurologist will agree with you, but he cannot treat your tooth...he will refer you to the dentist.

There are neurologist that treat nothing but headaches. If you do not trust your surgeons opinion, start going through yellow pages and start calling neuros that treat headache. One of them will refer you to a good headache doc.

Thanks for the help. I have an appointment with a neurologist in 4 weeks...I can't get in any sooner..Gotta love that..I do hope that they can at least let me know the cause of the headaches so they can treat them.

[proudmomof3]

Hi Cheryl;
  Oh, it hurts to read of someone suffering so! I'm sorry...
  Another person never really knows the extent of another's pain, or, their pain tolerance, but, it sounds like you're 10+ on the pain subjectivity scale.
  From what I see in looking around the web is that head ache after GK is not uncommon.
  So; Re, Drs, can you self refer yourself to a neurologist, pain clinic, or even neurosurgeon outside your radiation provider?
  I've heard low dose Elavil, say 25 mg, can take the edge off pain of different types. Cheryl R. mention the nerve pain agents as Neurontin or Lyrica. But; The Dr, of course, holds the power of writing the prescriptions.
  When you mentioned pain like that, I immediately thought the trigeminal nerve may have been irritated during the procedure.
  Trusting you went to a reputable clinic/hospital, I'm trusting there was no treatment error. The GK is pretty potent and has the ability to produce even an AVM, or conversely, treat an AVM. Those tiny bleeds or jumble of vessels can cause great HA pain!
  Gee; I wish I could help here with words. You may need a narcotic pain reliever if nothing else works. One thing about any of the OTC NSAIDS as Tylenol, Motrin, aspirin, Advil, is that they can produce rebound HA if overly used. They are also not particularly organ friendly and aspirin, stomach irritation or blood clotting friendly.
  But; Finding a Dr. to see you immediately. Not sure where you're located, but I'd sound desperate to many and maybe make an appearance at a large emergency room.
  Hang in there Cheryl. There are a lot of people here who know suffering and are at least with you in word and spirit.
 
 

Thank you for your help. I took a ton of otc meds yesterday until they worked. Then I suffered from nausea last night, which I guess is better than a severe headache. Of course, I am scared to death it will come back, since I have had them before. It seems like every week, I have another "episode".  Hopefully the neurologist can help, but I have to wait a month. I even thought about going to the ER (as I truly thought I was dying), but I didn't want to scare my kids (I know, sounds dumb, but my oldest is so sensitive she would have really been upset).

[proudmomof3]

This sounds like nerve pain to me. I also have it to some extent after my surgery, but thankfully not so severe. I do find that the common painkillers don't work AT ALL.
Ice packs have provided some relief. I found this suggestion on the forum: 5 minutes on, 5 minutes off. I do it in the evening, but some people do it more often. I have also experimented with different OTC medications. I found that Aleve takes off the edge of the pain (only). Yesterday I tried a combination of Tylenol/muscle relaxant (it is called Extra strength Tylenol body pain, night). I did sleep better than I had in days.
I do agree though that some nerve-specific medication, like the Neurontin-Lyrica etc. may be in order here. Have you discussed the possibility of steroids with your doctor, in case it is due to some nerve irritation due to swelling? You are well within the timeframe for this.
I sympathize with you, I also chose initially GK because I had young children to care for and I expected that the side effects would be milder compared to surgery. I guess it just doesn't work like this for everybody. I do hope that these horrible headaches will resolve soon.
 
Marianna

Marianna,
Thank you for your help. I did have steroids right after my GK, actually 2 doses, but they made me crazy!! literally, I was a different person. I know I need something stronger than  OTC meds but dr's are so strict about writing a prescription. I cannot believe that as bad as the pain is, they still refuse to give me anything. At least, my neurosurgeon won't. My GP will give me a few days worth, but nothing that lasts longer than a few episodes of headaches. Hopefully the neurologist will come through for me. I just want to know WHY I am having these headaches. It really scares me. I wonder if I am having an aneurism and don't know it...

[carter]

who is your advocate?   you are.  so if necessary - do what you need to do to take care of yourself.

if you do not like the treatment that you are recieving - find a dr that will treat you like you need to be. 

use your resources to find a dr that will take care of you.  call your insurance company - many have hot lines to talk to a nurse.   talk to friends.  look in the yellow pages for other GK centers. 

talk to the hospital aministrators - patient care advocates and ask for their help.

do what ever you need to do to find that dr that will give you the care that you need.  i say need not want .... you know the difference.

some drs will not see you as you have already recieved a treatment.  they do not wish to get involved. 

i fired one CK center before treatment.

i fired one CK center , radiologocal staff, and the hospital's associated neurosurgen before i found one good dr.  i drive 100 miles to get my follow up care.

do what you need to do to get the care.

carter

[FLsunshine]

You gotta be your own advocate and firmly take action.  You are in control although I'm sure it doesn't feel like it right now.  Don't wait for the medical establishment... call that doc office and speak to their nurse.  Oftentimes the nurse will fit you in based on what you are experiencing... receptionists and scheduluers have no power... the nurses do.  If that doesn't work, then call other doc offices, speak with their nurses, until you find one that will fit you in right away. 

I know what it's like to be given the response of "no appt available for 4-6 weeks" and I too thought I had to wait.  But some wonderful people on this forum last year gave me the same advice I'm giving you... don't wait.  It took many calls, and I had to travel 3 hours, but I found a doc that fit me in within 2 days and their responsiveness shows in the care they have since given me as we monitor my AN and its symptoms... they care, they listen, and they don't judge whether the headache or other stuff is a result of the AN but rather they figure out how to help me cope.  And that's the kind of doctor you and all of us need as we deal with ANs both pre- and post-treatment.

Sorry for the rant, but makes me very sad and upset to hear stories like yours (and mine) about docs that do not help people that are already scared about living with or post-treatment of a brain tumor.