ANA Discussion Forum
Post-Treatment => Post-Treatment => Topic started by: Captain Deb on June 07, 2006, 09:24:43 am
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Inspired by nipandales post, I've decided to start a thread for us post-treat headache sufferers and STRONGLY suggest to any physicians currently treating us to log on as a guest and read it. Sort of a Case history file to use as a diagnostic tool. We could even print the thread out and take it to our appointments. Please limit the chatter to other threads and just state your:
1. Treatment status( how many years/months post op)
2. If you had headaches pre-diagnosis
3. Surgical approach, facility and surgeons name
4. Family history of headaches
5. When headaches started started post-treatment
6. What diagnostic tests you've had (MRI CT Spinal tap, etc)
7. Description of headaches
a. frequency
b. intensity and duration
c. recognizable triggers
d. location on head/neck
8. what medications/treatment you've had
9. Any "definitive diagnoses" you have gotten from a specialist
In your reply, use the quote button so you don't miss any thing from the list and feel free to add to it. I am the only post-AN surgery patient my neurologist has EVER seen and has no idea what to do with me. I know it's a lot. I am hoping a dialog can be opened among patients and doctors to help us all find a solution for us so we can have our lives back!!!
Capt Deb 8)
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Inspired by nipandales post, I've decided to start a thread for us post-treat headache sufferers and STRONGLY suggest to any physicians currently treating us to log on as a guest and read it. Sort of a Case history file to use as a diagnostic tool. We could even print the thread out and take it to our appointments. Please limit the chatter to other threads and just state your:
1. Treatment status( how many years/months post op)
3years 2months (surgery April 2003)
2. If you had headaches pre-diagnosis
No, not like these
3. Surgical approach, facility and surgeons' names
Suboccipital/retrosigmoid Massachusetts General Hospital, Boston  Barker and McKenna
4. Family history of headaches
No
5. When headaches started started post-treatment
within two months
6. What diagnostic tests you've had (MRI CT Spinal tap, etc)
MRIs
7. Description of headaches
a. frequency
used to be daily, now several per week
b. intensity and duration
from 2 to 7 on a scale of 0-10 (were 9.5 at one time) from 2hours to 2 days
c. recognizable triggers
over tiredness, physical exertion
d. location on head/neck
seems to be an inner earache on AN side, down neck, up head along scar always on AN side
8. what medications/treatment you've had
Celebrex, Neurontin and Amitripyline did not work for me (bad reactions); Vioxx seemed to be effective when I used it now use tramadol in preventive way, 200 mg. per day, and Feverfew, acetaminophen, and Hydrocodone as needed, also use hot pack on neck.Also have acupuncture (for head pain) and craniosacral therapy (treatments on head in hopes of reducing pain and helping post operative fluid sac to reabsorb)
9. Any "definitive diagnoses" you have gotten from a specialist
Definitive? Are you kidding? You jest.
In your reply, use the quote button so you don't miss any thing from the list and feel free to add to it. I am the only post-AN surgery patient my neurologist has EVER seen and has no idea what to do with me. I know it's a lot. I am hoping a dialog can be opened among patients and doctors to help us all find a solution for us so we can have our lives back!!!
          ÂÂ
Yes, very slowly, think I am getting my life back, hope so, it's so gradual...
Capt Deb 8)
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Inspired by nipandales post, I've decided to start a thread for us post-treat headache sufferers and STRONGLY suggest to any physicians currently treating us to log on as a guest and read it. Sort of a Case history file to use as a diagnostic tool. We could even print the thread out and take it to our appointments. Please limit the chatter to other threads and just state your:
1. Treatment status( how many years/months post op)
4 years post operative
2. If you had headaches pre-diagnosis
No headaches/pain of this type prior to surgery
3. Surgical approach, facility and surgeons name
Retrosigmoid Method, Dr. James Robinson-Piedmont Hospital/Atlanta, GA
4. Family history of headaches
Nothing out of the ordinary
5. When headaches started started post-treatment
Mine started the day after surgery and have not deminished. I think the term headaches understates the problem, I like the words "head pain" better
6. What diagnostic tests you've had (MRI CT Spinal tap, etc)
CT Scans, MRI (4 since surgery), CT scan of Temporal bone, Barium Swallow, Modified Barium Swallow
7. Description of headaches
  a. frequency
DAILY
  b. intensity and duration
Pain most of the day and night from a stabbing "ice Pick" feeling to just a dull ache pain.
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c. recognizable triggers
No real triggers, other than fatigue intensifies it at times
  d. location on head/neck
Left side (AN) starting at above left ear, running up about three inches to the rear about 4-5 inches down the left side of the neck.
8. what medications/treatment you've had
Neurontin 4000 mg, Dilaudid, Purcocet, Vioxx, Fentanyl Patch, Tegretol, Topomax, Trazadone, Indomethacin, Darvocet,, Morphine SUL, Hydroxyz HCL, Hydromorphon, Dilantin,Lidoderm 5%, Patch, Verapamil, Lyrica, Prednisone, Depakote, Ketorlac, Amitriptylin, Accupuncture, TENS Unit, Nerve Block Injections,
9. Any "definitive diagnoses" you have gotten from a specialist
Most of the Doctors are leaning toward "occipical nerve damage". I also have developed swallowing difficulty on the AN side that they are also leaning toward nerve damage. I have an appointment today with a different neurosurgeon who ordered the CT Scan of the temporal bone. I had asked him at the initial appointment about CFL. He said it was possible and ordered the CT Scan. The results of the scan show fluid in the mastoid air cells and minimal fluid in the mastoid area. It also shows "apparent dehiscense in the mastoid air cells adjacent to the crainiotomy". I will see what his interpretation is today.
In your reply, use the quote button so you don't miss any thing from the list and feel free to add to it. I am the only post-AN surgery patient my neurologist has EVER seen and has no idea what to do with me. I know it's a lot. I am hoping a dialog can be opened among patients and doctors to help us all find a solution for us so we can have our lives back!!!
Capt Deb 8)
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Thanks Dally! If you go to "profile" you will see a box titles "Modify profile" Click on it and you can enter your tumor sizes etc where it says signature so we can have a frame of reference on you. What size was your tumor and where were you treated?
Sure hope things get better for you. Sure hope things get better for all of us!
Capt Deb
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Dally,
What treatments worked the best for you? I noticed you have tried a wide range of things. I am really curious what your neurosurgeon will recommend based on you CT scan. Keep us posted. It sounds like you have found a neurosurgeon to take an interest in your headaches. I hope you find some relief soon.
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I had the followup with the neurosurgeon on the ct scan of the temporal bone. He said when he read the report he felt he found part of the problem, seepage into the mastoid air cells, however opon closer exam of the CD disk I took of the actual exam, he doesn't feel it is a leak, but fluid that found its way in during surgery. He feels it has no relationship to my pain or drainage on the AN side. He sent me back to my primary care doctor. He gave me a shot of pain medication (I didn't get the name of it, only know it started with a "T"), he held me for a half hour to see if it worked, it did not. He prescribed a new medication called Migrazone 100 mg. I can take 1 per hour, but no more than 5 in a 12 hour period. After two days of being on them, I threw them across the room as they increased the pain to a more constant level. Back to the Percocet for now. Best to you all who read this post. He also asked me to take the ct scan to my ENT to determine if they felt it was causing a problem.
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Dally,
I sure hope you find some relief soon. You are in my thoughts and prayers.
Does the percocet give you any relief?
Take care,
Lynn
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1. Treatment status( how many years/months post op)
 ÂÂ
  6 months post-op (12-5-05)
2. If you had headaches pre-diagnosis
  Sometimes - but not like this!! Like Dally, I prefer the term "head pain" or even "migraine", 'cuz this ain't no simple "headache"!!
3. Surgical approach, facility and surgeons name
  Sub-occ, St. Vincent Hospital in Portland OR, Sean McMenomey and Dan Rohrer, MDs
4. Family history of headaches
  None to speak of
5. When headaches started started post-treatment
  About 2 months post-op
6. What diagnostic tests you've had (MRI CT Spinal tap, etc)
  Three MRIs, 1 CT scan
7. Description of headaches
  a. frequency
   1-2 per week
  b. intensity and duration
   Between 7 and 9.5 on a 10-scale. They usually last 2 days.
  c. recognizable triggers
   Sensory overload - like when I'm at a party or restaurant with lots of noise & movement, and I'm trying to concentrate on a conversation
  d. location on head/neck
   Always begins on right (AN) side with ear pressure and pain; moves down scar to neck and shoulder, and up head along scar behind ear and over to forehead and eyes, until my entire head is exploding with massive, unrelenting pain. Sometimes I get nauseated from it.
8. what medications/treatment you've had
   Medications: Percocet, Lorazapam, Imitrex, Excedrin, Phenergan - Imitrex 100mg gives pretty good relief. Treatments: Lying down in a dark, quiet room with an ice pack over my eyes and another at the base of my skull works great in conjunction with a pain reliever.
9. Any "definitive diagnoses" you have gotten from a specialist
  All my neuro-ENT said it that is common to have post-op migraines.
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PS - thanks so much for this headache discussion - I am relieved to know that I am not alone in my suffering. Okay...that sounded bad - but you know what I mean, right?!? ;)
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Inspired by nipandales post, I've decided to start a thread for us post-treat headache sufferers and STRONGLY suggest to any physicians currently treating us to log on as a guest and read it. Sort of a Case history file to use as a diagnostic tool. We could even print the thread out and take it to our appointments. Please limit the chatter to other threads and just state your:
1. Treatment status( how many years/months post op)
10 months
2. If you had headaches pre-diagnosis
occasional migraines and the headaches that cause me to be diagnosed, but not as painful as the continuous one I have had since 6 weeks postop
3. Surgical approach, facility and surgeons name
Sub Oc. Eastern Idaho Regional Medical Center
4. Family history of headaches
Migraines
5. When headaches started started post-treatment
6 weeks post op
6. What diagnostic tests you've had (MRI CT Spinal tap, etc)
MRI
7. Description of headaches
  a. frequency Continual
  b. intensity and duration more intense at night, lasting about 2 hours each night
  c. recognizable triggers
pressure to incision site, loud noises
  d. location on head/neck
back of head (incision site, radiating to ear, and occasionally to face and neck
8. what medications/treatment you've had
Lyrica, Trileptal, multiple muscle relaxants, neurotin, multiple types of pain medication, relaxation/biofeedback, physical therapy to neck muscles
Indocin and Hyrdocodone seem to work the best, and make the headaches tolerable and at times am pain free, I have been on this treatment for the past two weeks (Thanks Capt Deb!)
9. Any "definitive diagnoses" you have gotten from a specialist
None
In your reply, use the quote button so you don't miss any thing from the list and feel free to add to it. I am the only post-AN surgery patient my neurologist has EVER seen and has no idea what to do with me. I know it's a lot. I am hoping a dialog can be opened among patients and doctors to help us all find a solution for us so we can have our lives back!!!
Capt Deb 8)
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Inspired by nipandales post, I've decided to start a thread for us post-treat headache sufferers and STRONGLY suggest to any physicians currently treating us to log on as a guest and read it. Sort of a Case history file to use as a diagnostic tool. We could even print the thread out and take it to our appointments. Please limit the chatter to other threads and just state your:
1. Treatment status( how many years/months post op) 1 year, 12 days
2. If you had headaches pre-diagnosis normal stress headaches
3. Surgical approach, facility and surgeons name Translab, ClearLake Medical Center, Webster, Texas
4. Family history of headaches  just normal stuff
5. When headaches started started post-treatment  as soon as the morphine wore off
6. What diagnostic tests you've had (MRI CT Spinal tap, etc) MRI, CT, MRI contrast, EEG
7. Description of headaches
  a. frequency       almost daily
  b. intensity and duration lasts for many hours starts out as a throb, graduates to feeling like my head is in a vice and then throbs more and eventually, as long as I am quite and non mobile it moves to a dull ache
  c. recognizable triggers everything seems to trigger the "It" Having my head in one position make It come on more quickly
  d. location on head/neck Starts by my incision, moves along the ocipital bone and then up al pretty much engulfts my head and neck.
8. what medications/treatment you've had relaxation techniques, barium swallow, a night guard for my TMJ (I didn't have that previously either) ibprophin (800's) Vicoden (made it worse) Narproxin,
9. Any "definitive diagnoses" you have gotten from a specialist Sterss, TMJ not anything that helps. Neurologist was so excited I wasn't having seizures that she forgot about the headaches and all of the gliomas near my central nervous system!
Deb, I am the first post AN my neurologist has ever seen, also. How can we find neurologists who have worked with AN Wonkyheads?
In your reply, use the quote button so you don't miss any thing from the list and feel free to add to it. I am the only post-AN surgery patient my neurologist has EVER seen and has no idea what to do with me. I know it's a lot. I am hoping a dialog can be opened among patients and doctors to help us all find a solution for us so we can have our lives back!!!
Capt Deb 8)
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As headache neurologists and pain clinics become more popular, odds are that you will find more experience with post AN headaches there. I know that I am not the only AN headache patient where I go. The first general neurologist that I went to was so obviously unfamiliar with post AN headaches that he even suggested a referral to someone that specializes in headache treatment. The first time I went to the headache neurologist, she said that AN headaches are known for being difficult to treat and knew exactly what I was talking about.
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Janet,
I will ask for a referral. Thanks for the advice. ::)
Brenda
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Brendalu--after 3 years, I'm seeing a little progress with my headaches. My new Headache Wizard is treating them like cluster headaches (google them or visit www.clusterheadaches.com) and has me om 1800mg of Neurontin and I'm giving myself Imitrex shots of 1 1/2 to 2g. The shots work WAY better than the pills and come in an auto inject pen. My doc has me giving them to myself manually at a lower dose than the auto inject so I can take them more often. I've also had a series of trigger point injections, which have helped--it's all on a thread called Capt Deb visits the Headache Wizard in General Discussion. See a headache specialist at a headache clinic if you can--wish I'd gone that route at 6 months instead of suffering for 3 years! Duh!
Capt Deb
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Deborah, I'd like to help on this forum if I could. In this case, I just score a zero. I can count on one hand the number of very slight headaches I've had post op. Post translab I am not noticing headaches. Not taking decongestants. Not having ear pain.
I had a few headaches pre op that lasted for a day. Ibuprofen always took them away. I have never taken presciptions for headaches.
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Sounds great except anytime I have brought in anything I have found on the web to the docs, they aren't interested. They really don't know why we are having the headaches and/pr opther symptoms and do not want to admit that they could have been caused from the surgery itself. The last one I brought in was a list of patient complaints and a study on cognitive problems after AN surgery, The doc just didn't want to even consider that it could have been caused from the surgery. Even with a mile long list of patients all complaining of the same stuff I was, all after AN surgery. And we didn't have these problems before the surgery.
WOW, can't imagine how iopeing up ones skull could possibly cause any kind of problems. I am quite discouraged by the docs. They can diagnose the tumor and take it out, but after that?????????????????????
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Patti UT,
I agree that they can diagnose and take the tumor out but after that ??? ??? ??? ??? ???
They are not headache specialists! Suggest you see someone at a headache clinic who doesn't care HOW you got the headaches, can't undo that--but can help you not have them as often or as intense, which is what my new headache wizard is shooting for. Fewer, less intense headaches also leads to better balance, because you actually feel up to walking or using a treadmill (the ultimate balance retrainer)! I started a thread a while back called "Balance..use it or lose it" which you can look up to see some great excercises--use the search button.
Capt Deb 8)
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*&%&%^%#$%&^_&*_)*)*_)*(_*&^*%% headaches and &*(&^*&%^&^$%%^#$%$#%&*&^*(*_)(
I've been to 3 pain management clinics and have an inbuilt pharmacy in my body and for waht?
I'll tell you what - surgeons not giving two hoots about the after effects of their cutting of the scalp techniques.
I've basically given up. I've been a pin cuushion for too long and now just pump the neurontin and wait for the next bout.
Laz
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Capt. Deb,
I printed out your thread on headaches and I am taking it to the headache place i am going to. My PCP has tried several things and the neurologist I saw was so happy I wasn't having seizures that she dismissed my headaches. I tried Imtrex and it made me sick to my stomach and I couldn't figure out if my head hurt worse or my sensitive tummy. Thanks for the advice, a year of suffering is long enough for me. Three years???????????????????? Yuck.
BrendaO
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*&%&%^%#$%&^_&*_)*)*_)*(_*&^*%% headaches and &*(&^*&%^&^$%%^#$%$#%&*&^*(*_)(
I've been to 3 pain management clinics and have an inbuilt pharmacy in my body and for waht?
I'll tell you what - surgeons not giving two hoots about the after effects of their cutting of the scalp techniques.
I've basically given up. I've been a pin cuushion for too long and now just pump the neurontin and wait for the next bout.
Laz
Two words--Injectable Imitrex--my absolute wonder drug!!!
Capt Deb
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Capt. Deb,
I printed out your thread on headaches and I am taking it to the headache place i am going to. My PCP has tried several things and the neurologist I saw was so happy I wasn't having seizures that she dismissed my headaches. I tried Imtrex and it made me sick to my stomach and I couldn't figure out if my head hurt worse or my sensitive tummy. Thanks for the advice, a year of suffering is long enough for me. Three years???????????????????? Yuck.
BrendaO
Several triptans have different delivery systems--Zomig comes as a nasal spray and Imitrex comes with an autoinject pen. I swear by the Imitrex as it has been the only relief I've had in 3 years. I don't use the pen as the dose is too high--I manually inject--the first one was creepy but now it doesn't bother me at all.
Capt Deb
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Bump to top--headache help for noo-bees
Capt Deb
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Capt. Deb,
I printed out your thread on headaches and I am taking it to the headache place i am going to. My PCP has tried several things and the neurologist I saw was so happy I wasn't having seizures that she dismissed my headaches. I tried Imtrex and it made me sick to my stomach and I couldn't figure out if my head hurt worse or my sensitive tummy. Thanks for the advice, a year of suffering is long enough for me. Three years???????????????????? Yuck.
BrendaO
Several triptans have different delivery systems--Zomig comes as a nasal spray and Imitrex comes with an autoinject pen. I swear by the Imitrex as it has been the only relief I've had in 3 years. I don't use the pen as the dose is too high--I manually inject--the first one was creepy but now it doesn't bother me at all.
Capt Deb
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Capt. Deb,
I printed out your thread on headaches and I am taking it to the headache place i am going to. My PCP has tried several things and the neurologist I saw was so happy I wasn't having seizures that she dismissed my headaches. I tried Imtrex and it made me sick to my stomach and I couldn't figure out if my head hurt worse or my sensitive tummy. Thanks for the advice, a year of suffering is long enough for me. Three years???????????????????? Yuck.
BrendaO
Several triptans have different delivery systems--Zomig comes as a nasal spray and Imitrex comes with an autoinject pen. I swear by the Imitrex as it has been the only relief I've had in 3 years. I don't use the pen as the dose is too high--I manually inject--the first one was creepy but now it doesn't bother me at all.
Capt Deb
Another word on Imitrex--Gotta take it at first SIGN of headache--once you've had a headache for several hours,it won't work. Also, nausea can be from headache rather than Imitrex.
Capt Deb
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Bump to top ;D
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hip bump to top, still fishin for post-op headache sufferers.
Capt Deb
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Still tryin Imitrex and still getting sicker and having really weird side affects. The doc says to give it another month and he'll try something else. I may not have any hair left on my head to pull out. I have noticed that mine seem to start at the very top left of my incision and go to the center of my brain. Light and sound make them totally unbearable.
BrendaO
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RE: headaches:
Pre-op: none
Post -op: severe headaches for approx. 2-3 weeks post-op., daily.
tapered off, none now.
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1. Treatment status( how many years/months post op)
-just over 9 months post op
2. If you had headaches pre-diagnosis
- I did, many related to stress as well
3. Surgical approach, facility and surgeons name
-see below banner
4. Family history of headaches
-none
5. When headaches started post-treatment
-immediately after surgery
6. What diagnostic tests you've had (MRI CT Spinal tap, etc)
-I have had 2 MRIs since surgery, 2 CT scans since surgery and the spinal tap as well
7. Description of headaches
  a. frequency
  b. intensity and duration
  c. recognizable triggers
  d. location on head/neck
-I have a headache 24/7 and it varies in degree of intensity. My neck does get stiff from pain that radiates up into my head and vice-versa. I still get shooting pains every week or two at the surgery site that radiates in a vertical manner. That pain is very severe.
8. what medications/treatment you've had
-I currently take Nuerontin, Imitrex, Topomax and a Tizanidine (muscle relaxer). I have through the course of my post op treatment taken many diff. pain meds, including the percocets, vicodins, even oxycotin but they never gave me much pain relief. Imitrex is by far the best thing that I have taken, but as Capt. Deb stated, you have to take it right away or it does not work. You also can only take it twice a week.
I tried several sessions of accupunture, but I did not get any relief from the pain with that treatment.
9. Any "definitive diagnoses" you have gotten from a specialist
- Both the Nuero surgeon and nuerologist stated that I will just have to take some time before I am completely over the surgery. The surgery was a success but I am one of those persons that it is gonna take longer to recover.
On a related topic, I wanted to let people know make sure they ask their Dr's for samples of meds. such as Imitrex etc. This can save you a lot of $$$$. In 2006, I was paying $20 each for a prescription a month for Topomax and Imitrex. In 2007 after raising my insurance plan, I pay $75 for Topomax and $130 for Imitrex. And with Imitrex being the only pain medicene that I get relief from....you see where I am going with this. (Thanks >:( MedBen >:(
Luckily my nuerologists has some samples for me so I don't have to file for bancruptcy.
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HI there all,
May I first of all say that it is heartbreaking to hear that after all the stress and trauma of diagnosis and treatment you now have such a horrendous time with headaches. As a newly diagnosed 'wait and watcher' I was hoping you all might answer a couple of further questions:
1. Did you have sub occ in the hope to save hearing?
2. Was the hearing preservation successful?
3. Was there some other reason you had sub occ surgical approach?
4. Do you have a titanium plate at the surgical site?
I hope you don't mind me asking these quesitons but I am still trying to work out what to do and reading this information (as harrowing as it is) helps to drive decision-making. My surgeon feels that I should have trans-lab to avoid the increased risks associated with mid foss or sub occ. He feels that I can live with ssd much more easily than I could with facial paralysis or debilitating headaches (and I see his point, I guess).
Love to you all
Cheers,
Monie
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Hello, Monie, and welcome. My surgeons used the sub-occipital approach and I still have some hearing, although not as much as I had before the surgery. My doctors chose that approach to preserve the hearing I had and it seems it is their preferred approach to these tumors. I also have a titanium mesh plate. From what I've read, there is a higher incidence of post-op headaches using this approach. I didn't suffer from headaches pre-op, and this particular complication was at the bottom of the list the surgeons reeled off to me. I wish there were more research being done -- wouldn't it be great if they could screen people pre-op to determine who would be more likely to have headaches? You should get the headache booklet the ANA publishes -- it's very helpful.
As you're weighing all your options, just remember that not everyone has headaches or facial paralysis, etc. We're all different and our bodies react differently.
Good luck to you and know that there are many of us here to support one another.
Staypoz