Author Topic: Headaches,balance issues and neck pain  (Read 9351 times)

auerk

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Headaches,balance issues and neck pain
« on: August 08, 2007, 10:56:23 am »
Hello,
       I had a 2.5 cm AN removed from the right side in Jan. of 2006, since then I have had severe headaches balance issues and neck pain. The Doctor who performed the operation has been telling me wait 6 months and it should get better, well it's been a year and a half and I still have the same issues. I have been put on Topomax, Lyrica, Paxil, Gabapentin and several pain relievers.Nothing seems to help and I have been to a Neurologist who tells me he can't find any  reason why I am getting headaches, he sent me through MRI's,EEG's,nerve tests. He says the nerve is working on the side I had the AN removed on but can't tell me why I can't hear anything from that side.sometimes the smallest things set of major headaches
- hot weather, body position or exertion, sometimes just getting up and walking across the room will cause me to lose my balance. My Gp has told me to look into going to Strong Medical center in Rochester NY so I guess that is my next pursuit. My question is this, Does anyone have the same issues and does anyone know a good Doctor at Strong Medical?
I haven't been able to work and we are running out of our rainy day fund,is disability an option or do they not consider this a good reason to be on disability?Any input would be greatly appreciated. ???

juliotamu

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Re: Headaches,balance issues and neck pain
« Reply #1 on: August 13, 2007, 10:10:12 am »
Hello,
       I had a 2.5 cm AN removed from the right side in Jan. of 2006, since then I have had severe headaches balance issues and neck pain. The Doctor who performed the operation has been telling me wait 6 months and it should get better, well it's been a year and a half and I still have the same issues. I have been put on Topomax, Lyrica, Paxil, Gabapentin and several pain relievers.Nothing seems to help and I have been to a Neurologist who tells me he can't find any  reason why I am getting headaches, he sent me through MRI's,EEG's,nerve tests. He says the nerve is working on the side I had the AN removed on but can't tell me why I can't hear anything from that side.sometimes the smallest things set of major headaches
- hot weather, body position or exertion, sometimes just getting up and walking across the room will cause me to lose my balance. My Gp has told me to look into going to Strong Medical center in Rochester NY so I guess that is my next pursuit. My question is this, Does anyone have the same issues and does anyone know a good Doctor at Strong Medical?
I haven't been able to work and we are running out of our rainy day fund,is disability an option or do they not consider this a good reason to be on disability?Any input would be greatly appreciated.

Hello,

I finally got disability (according to my lawyer but I haven't seen any money yet) but it took orever and it seems that socail security doen't even follow their own rules. In my case a blood vessel broke Nov 2004 causing me to be dizzy ever since. A CT scan showed I had a tumor which I suspected but didn't get a scan earlier due to no insurance. The first sin was hearing loss, then a couple years later facial numbness before the blood vessel broke. What followed was tumor surgery march 2005 after which the doctor said it would just take time (probably for liability reasons) . The dizziness and headaches were worse after the surgery along with total elimination of hearing (even though they didn't cut the nerve). Since i did'nt have insurance the doctor that operated would not see me again in his office.

The wound never healed and was draining. I was put in the hospital Dec 2005 where they suggested plastic surgery to repair the wound but they wouldn't see me w/o insurance and I was discharged with nothing done. To bypass this I was told to go to the ER at another hospital. The surgery was scheduled until they found out I had no insurance and  I was kicked out of the second hospital. Eventually I was refered to the hospitals plastic surgery clinic and in Oct 2006 surgery was performed to close the wound. The dizziness and headaches continue. All together I was in the hospital or seeing a doctor about 65 days in 2004, 2005, 2006, and 2007.

I applied for disability in Jan 2005 and was denied the first time, then denied on reconsideration based on "While the records show you are dissabled now your condition is not expected to last 12 months". While they were saying this I had already been dizzy over a year. I then got a lawyer and filed another appeal. What I found was that disability depends a lot on age and education. Some disabilities are on a list and are automatic but not acoustic neuromas. Turns out if you are an immigrant who speaks little English and has no education its easy to get disability. Also its easier if you are older. Their age breaks are 50 years old, then 55, with it being easier if you are older. Its harder for someone under 50. I was only a few months under 50 which essentially means they consider you 50. Unfortunately I had more than one college degree (and could be retrained) so where they would normally have found me disabled, they decided I could do desk work. If I had only a high school degree I would have easily been found disabled since I was 50 years old. The difference in my case was that I told my mew doctor i had difficulty concentrating due to the dizziness, so when the lawyer sent the doctor a questionaire he checked off on the statement that I had difficulty doing even simple tasks due to my difficulty concentrating. At the ALJ hearing I provided examples of my difficulty concentrating. My lawyer told me I won but I am still waiting for a letter from social security. I think the key was the occupational expert stating that my lack of concentration would change his opinion about his opinion that I could do a desk job.

It took about 2.5 years and they pay back dissability. You should at least go to the admin law judge hearing (ALJ) since the judge statistically rules for the claimant about 60% of the time. Maybe more in some states. There is a big differnce between states.

As for my headaches, they seem to be lessening, but not the dizziness.

Hope this helps.

Juliotamu

Captain Deb

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Re: Headaches,balance issues and neck pain
« Reply #2 on: August 14, 2007, 11:13:38 am »
auerk,
If it's been a year and a half and you are still having headaches, you definitely need to be seeing a headache specialist at a headache clinic. I know nothing about Strong Medical. Do they have a Pain Center or a Headache Clinic? Our Surgeons know how to remove the tumors but aren't specialists in aftercare. The headaches, neckpain and balance issues are all related.  The head and neack pain are attached and you can't regain your balance because you can't get out there and walk and excercise because of the headaches. Been there. Done that.  I found a really good Physical therapist to work on my neck and a really good headache specialist for the head and I am back on my feet and my balance is incredibly improved thanks to both of them.  It has taken 4 1/2 years to get here, though!

Short of an autopsy, the exact reasons why some of us get these headaches and some us don't is still a mystery. I quit asking "why" a long time ago and started asking, "well, what can I do about them." and found a doctor with the same attitude. Surgical insult is surgical insult. Who know which wires are tangled up in there?

Hope you find some help soon!

Capt Deb 8)
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
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mema

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Re: Headaches,balance issues and neck pain
« Reply #3 on: September 12, 2007, 05:26:13 pm »
Hello,                                                                                                                                                                                       

I'm a fellow(actually gal) headache and vertigo sufferer.  Radiation in Nov-Dec 2005.  Headaches and brain spasms from day one of radiation.  Of course doctors couldn't understand my headaches or brain spasms.  Acted like I was the only one this ever happened to.  I did return to work .  I was commission sales and able to sit in the breakroom alot.  But I wasn't making money doing this.  So I would spend my shift leaning over a stove all day until I'd get a customer.  OK 4 months of this and I become ssd.  Now I not only feel dizzy most of the time, chronic headaches now I can't hear my customer ask me questions when their behind me or on my left side, which happened  frequently.  So I retire.  Intended to be a sub-teacher at my grandkids school.  Problems with high ceilings and loud noises of the kids hurt my ears and I couldn't hear the little ones.  Family and friends encourage me to apply for social security.  Was denied first time, then went to lawyer, who once worked for social security.  Told me the only chance I have is for the vertigo.  Social security sends me more forms to fill out that they had dated Feb. 23 with instructions for them to receive them back within 10 days.  I received these papers on Feb 26.   Filling out paperwork brings me to tears because  my head is pounding and I'm nauseated.  Get the paperwork in the mail on March 1st.   On March 2 I get mail that I'm denied, dated Feb. 26th by social security.  I call them all upset that they didn't even wait for my paperwork.  How could they deny me 3 days after they  mail them out.  He says just appeal.  Call my lawyer who laughs and says this happens alot.  Its all part of the process.  Now I'm waiting for a court date which according to the lawyer can take up to 2 yrs.    I am 58 , 10th grade education, only job being in commission sales.  I do think some folks get lucky, some states are different than others, if you were in the service counts alot.   I am a person  who has  worked with fibromyalgia for 15 yrs.  I have back, neck problems before my AN.  I have Barretts esphagus, that I get routine endoscopys on to make sure its OK.  And I have Von Willibrandts disease. And of course arthritus.  The newest was my ENT telling me it was in my cheek bones.Because of the Von Willibrandts(a bleeding disease) I am limited to medicines .    Not to sound like poor me, I'm grateful I've done so well and none of my ailments are getting worse.  On a good note  my 18 month MRI and checkup showed An 2mm smaller and the neuro-onycologist says nerve damage can be causing my brain spasms.  At least I know whats causing it and I am not crazy.  Anyway try for social security, you might be one of the lucky ones that gets it quicker.                                                                                                           



                                                         mema
6mm x 8mm left AN FSR 26 treatments Nov.-Dec.2005
MD Anderson Orlando, Fl.

Static

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Re: Headaches,balance issues and neck pain
« Reply #4 on: September 12, 2007, 08:26:40 pm »



 Turns out if you are an immigrant who speaks little English and has no education its easy to get disability.


This is a major problem in our country.  I get a big headache just thinking about it!  Good luck to our law abiding Americans who are really deserving of and trying to get disability to support themselves and their family.  I hope our politicians will realize one day what they are doing to the people who are putting them into office, and maybe those same people should let those politicians know what their laws aren't doing to help them when they need it!  God Bless America!  Ok, so maybe this should have been in the vent post.... ooops!  I love you Phyl, Joef and Brucifer :)
3.5cm AN removed 1-21-04
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Captain Deb

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Re: Headaches,balance issues and neck pain
« Reply #5 on: September 13, 2007, 10:42:30 am »
I had my court hearing in March--still no answer. I'm a college-educated, self-employed, English-speaking, married white woman with no dependent children . Fat Chance.

Capt Deb 8)
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
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crystallady

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Re: Headaches,balance issues and neck pain
« Reply #6 on: September 15, 2007, 06:32:20 pm »
Hi, its been awhile since I was on this site. I had a 3.5 meningioma completely removed on 1/25/07 and a 2 cm AN radiated by a Novails machine on 5/22/2007.  I had both procedures done at Strong Memorial Hospital in Rochester, NY.   My surgeon was able to remove the tumor completely on top and the AN has already shown signs of shrinking and dieing.  ;D  The NS was Dr. Vates and he is wonderful to deal with and very talented.  The N, Dr. Miraldo and the oncologist, Dr. Milano, also have great to deal with. 

I too am dealing with headaches and balance issues and neck issues and I know thats most of it is because of the AN.  Dr. Miraldo is a headache specialist and is very thorough.  Dr. Milano said the headaches could be inflamation from the activity of the AN dieing.  He was very please at the results after only 3.5 months since the radiation and the radiation is still doing its job.  I cant recommend these special doctors enough.  I have found that meclizine aka dramamine greatly reduces the inbalance issues.  You can get not drowsy over the counter.  I am currently on a short term dose of steriods to reduce the inflamation but still hasnt totally gotten rid of the "pressure headaches" that I get.  I figure in time, process of elimination, we will be able to figure this out.  The care that I receive from Strong has been very compassionate and thorough. 

I am also seeing a massage therapist and a chiropracter to relax my neck and back and get my neck back into alignment.  My chiro is very gental and my neck is getting better.  Its been put out of wack because of the head brace and halo that I had to wear during the procedures.  My neck wasnt in exactly the best position for either.  My N and NS said no way should anyone go to a chiropractor regardless of whether or not you had surgery but primary care said to go get my neck fixed and it has helped.

So, give Strong a call.  I hope you live close by to Rochester.

auerk

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Re: Headaches,balance issues and neck pain
« Reply #7 on: September 18, 2007, 07:55:02 pm »
Thanks for the replies guys I got a reply from SSDI of course they denied me on the first go round and now I'm going through a lawyer. The surgeon who removed my An has increased my dose Of topomax from 25mg to 400mg since April of this year and I still am having the same issues. He won't see me in his office because of the type of  insurance I have and the "problems he has getting his money" from them. he actually said If I was in better shape and lost some weight I would feel better. I told him sure but if I turn my head from side to side I still get dizzy enough to fall down, while I was riding my bike I lost my balance and crashed bad enough to end up back in the hospital.If I sneeze or cough hard enough it still give me a killer headche, for crying out loud I have trouble changing the tire on our car by myself. There are days when I wake up with a headache so bad I can't get out of bed. I used to be an industrial Electrician I can't imagine going back to work and working with live electrical wires and losing my balance, game over.With the crappy insurance we have I have to fight for every little service or prescription we try .. Thanks for the support  we really appreciate it

Larry

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Re: Headaches,balance issues and neck pain
« Reply #8 on: September 18, 2007, 08:32:01 pm »
Aurek,

Not that my post will be of much use to you but I have had the chronic headache syndrome following my surgery for almost 5 years now. I've tried all the drugs you have, tried steroids injected into the head and accupuncture. All don't work, neurontin is about the best help although thats minimal.

I just live with it now - I've all but given up on the medical profession for this one.

regards


Laz
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Dr Chang St Vincents, Sydney
Australia. Regrowth discovered
Nov 2005. Watch and wait until 2010 when I had radiotherapy. 20% shrinkage and no change since - You beauty
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http://www.frappr.com/laz

linny

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Re: Headaches,balance issues and neck pain
« Reply #9 on: November 26, 2007, 08:45:12 pm »
 ??? OMG   I get everything. I had a 3 cm  AN  took two surgerys  last  August 2006 I havent been the same since. And I havent worked since. I have been trying to get SSD ever since and I have an attorney and I still get denied. Plus I have Hep-c and my liver is not good,( from blood transfusion in the 70s ) I really dont understand the logic of  Social security.  Im now supposedly waiting for  a hearing with the judge. I am 55 yrs old ( mail carrier )  the post office  even say I cant do the job . I have bad balance. deaf in my left ear, headaches, and alful ringing in my ear. my short term memory is not good at all   and its hard for me to concentrate. when Im out and about my head gets a really weird sensation ( cant really describe it )  I have actually fell and hurt myself a few times from these issues. And with the combination of this  and my hep-c  Im very tired and sick alot. depressed for sure. Im now at the point where Im going to have to live in a box under a bridge if SSD dont come though.I have worked 30 + yrs and paid into it. Geez :( Whats a Gal to do. Im to old to be a hooker. (kidding)   :)http://[color=pink][color=pink][/color][/color]
Linda-2yr post AN 3-cm left side.  OHSU hospital , slow recovery for me. But then I had to have 2 surgeries with complications swelling of brain,

Static

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Re: Headaches,balance issues and neck pain
« Reply #10 on: November 26, 2007, 08:57:47 pm »
Linny, Hopefully, you won't have to become a hooker.  Maybe you can say you're an immigrant and you will get SSD, or at the very least food stamps and unemployment.  Good luck to you! 
3.5cm AN removed 1-21-04
CSF leak repaired 5/04
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OMG16

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Re: Headaches,balance issues and neck pain
« Reply #11 on: November 27, 2007, 04:18:13 pm »
I know this post is a few months old however I am going to reply anyways and I hope that I might be able to help.  My son had the awful balance, headaches and dizziness that only got worse if he was in a car.  He had a massive stroke after his surgery that they think caused all of this.  The doctor prescribed him Transderm scope pathces that are for sea sickness a little over 2 years ago and they helped alot.  He had to wear them 24/7 and had to change them every 48 hours.  He ended up having a seizure and was hospitalized for 3 days and they put him on Topamax for that and all the other symptoms went away also so he no longer needs the patches.  I hope that this info helps someone.  Take care Kim
I believe you are given choices in life and it is not what has happened to you that defines who you are.  It is how you handle the situation and finding the positive in an almost hopeless situation that counts the most.  My son is my hero and I have had the pleasure of learning this from him.

Captain Deb

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Re: Headaches,balance issues and neck pain
« Reply #12 on: November 28, 2007, 12:59:27 pm »
Linny, I have no doubt the judge will grant you your SSD, but it may take a while. It took 3 years for me to get my hearing and that was last March and I still haven't gotten a ruling. I have just forced myself to go back to work between headaches (I'm college educated and self-employed) and it's not fun. I spend every dime I make on prescriptions so I can work--it's a Catch-22 situation! I reached my $2000 cap in May this year. Every migraine costs me $90 worth of Imitrex or I end up in the ER they are so bad. TheTopamax has given me a few extra hours of work a week and I think jump starts the Imitrex a bit.

Sometimes you have to be a bit of a squeaky wheel like our Brendalu and pester the crap out of the social security agency itself.
Be patient, but be persistent!

Capt Deb 8)
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
Captain & Designated Driver of the PBW